Summary

It’s an infringement of human dignity. Just because I’m older, I can’t work where I’ve worked my entire life.

—Gwon Oh Hoon, 52, attorney, Seoul, August 27, 2024

Age-based employment laws and policies, a hostile workplace culture, and a weak social security system harm workers in the Republic of Korea (South Korea) as they get older. Mandatory retirement ages force some older workers to retire. Regressive wage policies reduce their salaries. And re-employment programs push them into lower-paid, more precarious work. Inadequate social security compounds this, creating a system that punishes workers for getting older.

This report, based on interviews with 34 people ages 42 to 72 working in South Korea’s public and private sectors, examines the harm three age-based employment laws and policies do to older workers—the mandatory retirement age of 60 or older, the “peak wage” system, and re-employment policies—and how insufficient social security programs exacerbate this. It focuses on how current domestic laws and policies discriminate against older workers, rather than individual employers’ actions.

Human Rights Watch finds that workers from age 40 and up face hostile work environments, ageism, and discrimination based on their older age.

Older workers told Human Rights Watch they were humiliated when younger colleagues or clients used age-based language in a derogatory way towards them. They felt humiliated when clients called them ajumma (아줌마, married or middle-aged woman), and younger colleagues used noin (노인, older person) to refer to them in a derogatory way, as unable to do anything or keep up with the way younger people think. Language that perpetuates negative stereotypes and prejudices about older age and older people is verbal abuse and a form of ageism, and creates hostile working environments for older workers.

Employers often feel older workers are a burden on their companies. In a 2021 survey, Korea Enterprises Federation, a membership organization representing South Korean businesses, found that 58 percent of companies surveyed felt that employing people beyond the age of 60 would be a burden because of their “declining productivity,” additional salary-related costs, and an unspecified negative impact on hiring younger workers.

The South Korean law prohibiting age discrimination in employment, the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion, allows employers to adopt a mandatory retirement age of 60 or older, meaning both public and private sector employers can force workers to retire based only on their age, not job skills. Y. Kyung Hee, 59, has worked for 27 years in a public research institute where she is now a professor. She faces mandatory retirement in one year’s time. Work for her is not only a way to earn money but also something meaningful she does every day. “I’m worried about the mandatory retirement age as I can’t imagine not going to work every day,” she said. “I feel afraid.”

The fear, anxiety, loss of belonging, purpose, and dignity, and financial worries that older workers forced to retire under the mandatory retirement age described to Human Rights Watch indicate significant emotional and psychological distress and harm to their mental health and well-being, which studies have confirmed.

D. Young Sook, 59, after working as a nurse for 36 years, is anxious about loneliness and isolation after she is forced to retire at 60. “I can’t imagine myself being out of this organization,” she said. “It would feel like standing by myself on a windy road.”

Human Rights Watch found that the “peak wage” system, in which employers can reduce older workers’ wages during the three to five years before their mandatory retirement, also causes mental as well as financial harm to older workers.

G. Young Soo, 59, is facing mandatory retirement in one year. He joined an insurance company at 23 as an office worker and has worked as a branch director and team leader for both sales and training. His employers first reduced his salary by 20 percent when he was 56. They further reduced it by 10 percent each year so that at age 60, he will earn just half, 52 percent, of what he earned at 55. Although the hours and intensity of G. Young Soo’s workload stayed the same under the peak wage system, his decision-making authority was reduced in addition to his salary. After 36 years of loyal service, he felt the company had mistreated him.

Other older workers told Human Rights Watch about their demotivation, sense of deprivation, and anger at how they have been treated under the peak wage system. And it is not only their salary that is affected. The peak wage system can have a negative knock-on effect on other financial entitlements. G. Young Soo and his employer pay a total of 9 percent of his salary into the National Pension System. Since his salary has been reduced, so too will these payments and the eventual amount he receives when he collects his pension. “It is discrimination because our income has been reduced because of our age,” G. Young Soo said. “It is not justified.”

Under international human rights law, discrimination means any distinction, exclusion, restriction or preference or other differential treatment that is directly or indirectly based on prohibited grounds of discrimination and which has the intention or effect of nullifying or impairing the recognition on an equal footing of all rights or freedoms. Differential treatment on a prohibited ground, such as age, should be subject to a justification test to ensure it has a legitimate aim and is both proportionate and necessary.

However, under the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion, mandatory retirement ages are exempt from such justification tests. They are never considered discrimination, and older workers are unable to challenge them and seek justice if they believe their rights have been denied.

Human Rights Watch research found that these age-based policies constitute discrimination because they are neither proportionate nor necessary. The harms caused by the mandatory retirement age and peak wage system outweigh any benefits. Neither appears to have achieved their respective aims of keeping older workers in their main jobs until at least age 60 and financing the employment of younger workers. And they are not necessary because there are less harmful alternative policies that the government could use to achieve these aims.

Furthermore, the peak wage system is based on an ageist stereotype that older workers are less productive than younger ones; treating people differently based on stereotypes has also been found to be discrimination.

Although these age-based policies force older workers to retire and forcibly reduce their wages, local and state governments have a legal obligation under the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion to support older workers’ re-employment after retirement from their main jobs. Human Rights Watch found that these re-employment programs, too, cause harm to older workers, forcing them into lower-paid, more precarious work.

Employers can re-employ older workers under less favorable working conditions than before their retirement. At the public research institute where Y. Kyung Hee, 59, is a professor, employees can be re-employed to work for one more year after mandatory retirement at 60.

“You can teach twice a week and get KRW2.5 million [Korean Republic Wons, or US$1,873] per month,” she said. Her salary before it was reduced under the peak wage system was KRW6.5 million ($4,869) per month.

Data from South Korea’s Ministry of Employment and Labor show that, on average, older workers earn 29 percent less than workers 59 and younger, and Statistics Korea, the government statistics bureau, reports that they are nearly twice as likely to be working in less secure “non-regular” work than younger workers.

The jobs older people can get may be jobs that others do not want. C. Sung Ho currently assesses people’s eligibility for social security entitlements. He said he has heard from workers older than him that he could get a job as a janitor managing a building after he is forced to retire. Older men can find such work, while older women often find that their only employment option is as a care worker. Kim Ju Ran, 59, has been a care worker for four years. She explained why young people avoid becoming care workers:

A lot [of care workers] are in their late 60s and 70s, but there are no young people entering our industry because, compared to the workload, the income is so low. You have to bathe, cook, and change their diapers when they urinate and defecate. Young people are overwhelmed by this.

Older workers are concentrated in specific, low-paid occupations, such as security guards and care workers, that are seen as suitable for older people and which younger people do not wish to do. Such “occupational segregation” based on age is a form of discrimination.

What is more, older workers who are re-employed are often placed in social activity roles and may receive employment placements for only short periods of time. Under the Senior Employment and Social Activity Support Program, a national re-employment program supported by the Ministry of Health and Welfare, 71 percent of placements in 2022 were for voluntary, public service social activities and not salaried employment. The average length of employment placements under the program was just 4.6 months.

Human Rights Watch found that together, these three policies—forcing people to retire, paying them less because of their age, and moving them into lower-paid, more precarious, and often more physically demanding work—violate older people’s rights to work and non-discrimination. They also reinforce negative, ageist attitudes about older people’s abilities and place in society in South Korea today.

These problems are compounded by an inadequate social security system that does not meet human rights standards. Unemployment benefits for people 50 and older are limited to a maximum of 270 days, but people forced to retire at 60 may have to wait up to five years before they are eligible for the National Old Age Pension or Basic Pension. In 2023, only 40 percent of people 60 and older received a National Old Age Pension. Sixty-seven percent received the Basic Pension, which provides financial support for people 65 and older on low incomes, including those on low pension incomes from the National Old Age Pension.

Monthly payments under both pension programs are low. The National Old Age Pension was just 27 percent of the Seoul Metropolitan Government’s living wage and 31 percent of the national minimum wage in 2023. The Basic Pension was just 16 percent of the national minimum wage in 2024.

With a relative poverty rate of 38 percent of people 65 and older, those on low incomes may be eligible, irrespective of age, for income, medical, and housing support through the Basic Livelihood Security Program.

In 2023, 1.2 million people 60 and older received support under this program. Income support is available to those whose income is 32 percent or less of the national median income, and medical and housing assistance to those living on 40 and 48 percent or less respectively, all below the relative poverty line of 50 percent of the national median income. This means that some people below the relative poverty line, but above the eligibility thresholds, will not receive support under this program.

South Korea should take steps to meet its obligations under international human rights law and enable those older people who wish to continue working to do so on an equal basis with others.

Such steps include the National Assembly abolishing the mandatory retirement age and the peak wage system and ensuring all differential treatment based on age is subject to justification tests to make sure it is not discrimination. It should adopt a comprehensive anti-discrimination law to provide equal protection against all forms of discrimination, including age-based discrimination against older people, and a duty to eliminate ageism.

The Ministry of Health and Welfare should review re-employment programs to ensure older people have access to employment opportunities in all sectors and on an equal basis with others. It should also review whether the Basic Pension, the National Pension System’s Old Age Pension, and other social security entitlements are adequate to guarantee older people an income of at least equivalent to a living wage, and ensure it is available to everyone.

 

Recommendations to the South Korean Government

To the National Assembly

• Remove article 4(5) of the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion, which allows exceptions to the prohibition on age discrimination without reasonable grounds, so that all differential treatment based on age in employment is subject to justification on reasonable grounds.

• Abolish the mandatory retirement age of 60 or older by removing article 19 of the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion.

• Amend article 21 of the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion to prohibit employers from imposing less favorable working conditions on older workers because of their older age.

• Amend article 6.3 of the Act on the Protection of Temporary Agency Workers to limit the time workers age 55 and older may be employed under temporary agency contracts so that the same limits exist for older and younger workers.

• Abolish the peak wage system.

• Adopt a comprehensive anti-discrimination law that provides equal protection against all forms of discrimination, including age-based and other forms of discrimination against older people, and codifies a government duty to eliminate ageism.

• Amend article 11 of the Constitution to include age as a prohibited ground for discrimination in political, economic, social, or cultural life.

To the Ministry of Justice

• Provide guidance to courts that justification for differential treatment based on age should not be based on stereotypes, including ageist stereotypes about older workers.

To the Ministry of Employment and Labor

• Support employers to retain older workers, including by ensuring employers provide ongoing training and professional development opportunities for older workers to maintain and enhance their skills, and programs to promote better health.

• Require employers to introduce flexible or gradual retirement programs for those who wish to gradually retire from work, without using a peak wage system or a mandatory retirement age.

• Prohibit, and enforce punitive measures against, employers imposing less favorable working conditions on older workers because of their older age.

• Conduct a campaign to raise awareness of workplace discrimination against older workers and its harms, including derogatory language and stereotypes about productivity based on older age; promote positive attitudes about older people’s abilities to work and place in society; and end the culture of workplace discrimination against older workers.

• Review and adjust the national minimum wage so that it provides an income of at least a living wage.

To the Ministry of Health and Welfare

• Review employment programs to ensure older people have access to paid employment opportunities in a wide range of sectors on an equal basis with others.

• Amend the unemployment benefit and other social security programs to ensure older people who are forced to retire or cannot find work before they are eligible for the National Old Age Pension and/or Basic Pension receive an income of at least equivalent to a living wage.

• Amend the National Old Age Pension, Basic Pension, and other social security programs to ensure they are adequate to guarantee older people an income of at least a living wage.

• Ensure that everyone has access to social security without interruption, including when transitioning between work, or from work to retirement.

 

Methodology

Human Rights Watch interviewed 34 South Korean workers, aged 42 to 72, between February and September 2024. The age listed for each interviewee is their age at the time of their interview. Legislation prohibiting age discrimination at work in South Korea defines “older people” as 55 and older and “middle-aged people” as between 50 and 54. However, we also interviewed people in their 40s to understand the experience of those under 50 who may also face discrimination related to their older age.

Of those interviewed, 7 identified as men and 27 as women. Interviewees worked in the public and private sectors, in transport, customer service, online services, cleaning, health care, finance, sport, education, publishing, advertising, and caregiving. Four were union representatives.

All interviews were in person in Seoul, except one that was online. Interviews were conducted in Korean with English interpretation, except two in English. Human Rights Watch obtained informed consent from all interviewees and used pseudonyms, indicated by given names and surname initials, as desired. Interviewees were not compensated.

In addition, Human Rights Watch consulted 41 Korean researchers, academics, human rights experts, union workers, an international journalist, and representatives of nongovernmental organizations (NGOs), including three staff of international NGOs. We also reviewed national legislation and reports in Korean and English produced by the government, academics, workers’ associations, the media, and international institutions.

Human Rights Watch did not investigate individual employers that implement age-based retirement policies in line with current domestic law and government policy. Instead, we documented how those laws and policies discriminate against older workers. Our research aims to support advocacy to reform the resulting system that allows this discrimination.

In February and March 2025, Human Rights Watch requested information on the impact of age-based employment policies from the South Korean Ministry of Employment and Labor, Korea Enterprises Federation, Korea Railroad Corporation (KoRail), Seoul Metro, and Seoul National University Hospital. The Ministry of Employment and Labor and KoRail responded on March 26, 2025, and the information they provided is reflected in the report. Korea Enterprises Federation declined to respond and referred Human Rights Watch to the Ministry of Employment and Labor.

In June 2025, Human Rights Watch provided the Ministry of Employment and Labor and the Ministry of Health and Welfare with a summary of its findings and invited their response. The Ministry of Employment and Labor responded on June 23, stating that they would consider the report's findings when improving their policies. The Ministry of Health and Welfare referred Human Rights Watch to a number of its departments, but none had responded at time of writing.

Human Rights Watch also provided KoRail, Seoul Metro, and Seoul National University Hospital with a summary of its findings in June 2025 and requested information on their age-based employment policies. Seoul National University Hospital declined to respond. KoRail and Seoul Metro responded on June 9 and June 20, respectively. The information they provided is reflected in the report.

At the time of the interviews, 1,000 Korean Republic Wons (KRW) were worth US$0.75, and one US dollar (US$) was worth KRW1,335.

 

Background

Population Ageing

South Korea has one of the highest life expectancies in the world.[1] Girls born in 2025 can expect to live until they are 87; boys until they are 81.[2] South Korea also has the lowest fertility rate in the world.[3] High life expectancy and the low fertility rate contribute to South Korea’s population ageing, with 20 percent of the population age 65 and older in 2024.[4] Among women, 22 percent are age 65 and older; for men that figure is 18 percent.[5]

Dual Labor Market

“Regular” and “Non-regular” Work

South Korean law recognizes both “regular” and “non-regular” work within the labor market.[6]

Statistics Korea defines non-regular work as: limited-term, fixed-term, part-time, or on-call work; special types of employment; temporary agency work; subcontracted work; and home-based work. Trade unions also include day labor as non-regular work.[7] People work under non-regular working conditions across a wide range of industries and occupations: from health and social work to manufacturing, and from professionals to machine operators.[8]

Regular jobs are those with permanent, full-time contracts, and together with non-regular work contribute to South Korea’s dual labor market structure.[9]

Statistics Korea data shows the proportion of non-regular workers is rapidly rising, from 32 percent of wage earners in 2015 to 38 percent in 2024, the majority of whom - 57 percent - were women.[10] Older workers are disproportionately represented among non-regular workers. In 2024, of the 8.5 million non-regular workers, 2.8 million (33 percent) were 60 and older, and 1.6 million (20 percent) were 50 to 59.[11] In 2023, 69 percent of the 3.8 million older people earning a wage were employed in non-regular work, nearly twice the proportion of workers of all ages, at 37 percent.[12]

Non-regular jobs are often lower paid than regular jobs. In 2022, the monthly wage of older people in non-regular jobs was estimated to be half of that of older people in regular jobs, based on figures from Statistics Korea.[13]  

A large number of older people work and do not earn a regular wage. Of the 14.2 million people 60 and older in 2024, 2.1 million were self-employed.[14] Half a million were family members working without wages or a contract for a family business—known as “unpaid family work”—making up 51 percent of all unpaid family workers.[15]

Company Size

Company size is also a prominent feature of the labor market, with labor statistics often presented by the number of full-time employees. Large companies, including family-owned conglomerates known as “chaebol,” have dominated South Korea’s economic growth and pay higher wages than small- and medium-sized enterprises.[16] Working conditions are also affected by company size, for example working hours, with those in companies with over 300 full-time employees least likely to work over 52 hours per week.[17]

Large companies include those in the textile, steel, car, and electronics industries. In 2025, 3.4 million people worked in companies with more than 300 full-time employees, while 16.7 million worked in companies with fewer than 300 full-time employees.[18] In 2024, 885,953 people 55 and older worked in large companies.[19]

Responsibility for Protection Against Discrimination at Work

The Ministry of Employment and Labor’s promise to the people of South Korea is a “country where the people fulfill themselves in desired positions.”[20] As part of its mission, the ministry aims to “strengthen employment assistance tailored to age and gender” and foster “a discrimination-free workplace.”[21]

South Korea’s constitution guarantees nondiscrimination and the right to work to all citizens, and the Labor Standards Act guarantees equal treatment in employment on the grounds of gender, nationality, religion, and social status.[22] Promotion of nondiscrimination at work is central to the Ministry of Employment and Labor’s employment policy.[23] To this end, the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion prohibits age discrimination in all aspects of employment, including retirement.[24] The Welfare of Senior Citizens Act states that national and local government shall provide job opportunities for older people.[25] The National Human Rights Commission of Korea Act established the National Human Rights Commission of Korea to carry out inquiries into and find remedies for violations of human rights guaranteed under the Constitution and discriminatory acts, including those based on age.[26]

The National Assembly, South Korea’s 300-member elected legislature, has the power to enact, amend, and abolish national laws.[27] Local governments, at city, province, county, and district level, are responsible for local administration under the Local Autonomy Act.[28] This includes responsibility for the promotion of local industry and support for small and medium enterprises.[29]

The South Korean judiciary operates a three-instance trial system through district courts, high courts and finally the Supreme Court, the country’s highest court.[30]

Retirement

“Retirement” in the context of work is generally understood as when people, usually older, leave a career or long-serving job. Retirement can also mean the period of life after leaving a career or long-serving job.[31] Statistics Korea reported in 2024 that 8 percent of “household heads and their spouses” in South Korea felt they were well-prepared for retirement, and 53 percent that they were not well-prepared.[32]

Long tenure and lifetime employment were prized in South Korea for providing stability and loyalty to an employer but became less common after the 1997-98 economic crisis.[33] Statistics Korea reported that, in 2024, the average age at which people 55 to 79 left their main job—the job with the longest duration in one’s lifetime—was 53. For those 55 to 64, it was 49. The reasons workers gave for leaving included layoffs and businesses closing (29 percent), ill health (19 percent), and family responsibilities (16 percent).[34]

Other contributing factors to this “early” retirement from main jobs include “honorary retirement,” when employers encourage or pressure employees to accept incentives to retire before the mandatory retirement age, and mandatory retirement age itself—the age at which a worker has to retire from their job, and which is discussed below.[35]

While some people stop working completely when they retire from their main job, many (69 percent) want or need to continue working. The average maximum age people want to work until is 73.[36]

Pensions

South Korea has several overlapping pension programs with different eligibility criteria and levels of payment.

Different Pension Systems

Type	System	Eligibility
Public	National Old Age Pension	All citizens except government employees, military personnel, private teachers, and special post office employees
	Basic Pension	People 65 and older on low incomes
	Special Occupational Pension	Government employees, military personnel, private teachers, and special post office employees
Employer	Severance Payment	Private sector employees
	Retirement Pension
Private	Personal Pension	All citizens – voluntary

South Korea introduced a National Pension System in 1988, expanding its coverage from workplaces with 10 or more full-time employees to all workplaces by 2006.[37] Government officials, military personnel, private school teachers, and special post office employees are eligible for separate occupational pension plans.

The National Pension System, which encompasses old age, disability, and survivor pensions, is partly funded by contributions (58 percent in 2023) and partly by returns on investments of a National Pension Fund (42 percent).[38] The contribution rate for the program is 9 percent of income. Employees contribute 4.5 percent while their employers contribute the other 4.5 percent. People who are not eligible to join through their workplace or because they are not employed can apply to join as an individual on a “voluntary” basis and pay the full 9 percent themselves.[39]

The Basic Pension provides financial support for people 65 and older on low incomes, including those on low pension incomes from the National Old Age Pension, but not those in receipt of special occupation pensions.[40] To be eligible for the Basic Pension, the older person’s income must fall below an income threshold which is set by the Minister of Health and Welfare to cover at least 70 percent of those aged 65 or older.[41] In 2025, the threshold below which an older person’s monthly income must fall to be eligible for the Basic Pension was KRW2,280,000 (US$1,600) for a single person and KRW3,648,000 ($2,500) for a couple.[42]

Other pensions include government employee pensions and private sector employee pensions. Private sector companies must provide a severance payment program when someone who has worked for at least one year, leaves.[43] If the majority of employees agree, these can be converted into retirement pension programs.[44]
 

I. Hostile Working Environments for Older Workers

If I still worked in a major company, I might not have a job at this age since clients and co-workers would think I was too old.

—K. Soo Jin, 43, worker in a small online advertising agency, Seoul, August 28, 2024

Ageism toward Older Workers

Workplace culture in South Korea reflects wider social norms around hierarchy and respect linked to social status and age. A strict ranking system is applied to job positions, and it is considered inappropriate to manage someone older than oneself.[45] In companies, the more formal, polite level of speech in the Korean language (jondaetmal), used with strangers, older people, and in formal situations, is always used when speaking to superiors or to colleagues who are older. The less formal level (banmal), usually used among friends and family and in casual settings, can be used by managers with those they manage or with younger colleagues.[46] But “there is a double standard in Korea,” said Gwon Oh Hoon, 52, a labor attorney and education director at Gikjang Gabjil 119, an organization that works to combat workplace bullying. “People respect older people – and they despise them.”[47]

Older workers told Human Rights Watch about derogatory language colleagues or clients used toward or about them based on their older age.[48] Language that perpetuates negative stereotypes and prejudices about older age and older people is verbal abuse and a form of ageism.[49] The World Health Organization has defined ageism as the stereotypes (how we think), prejudice (how we feel), and discrimination (how we behave) toward people based on their age.[50]

Kkondae is a term used to refer to someone, typically as an insult, who is authoritarian, condescending, or rigid in their thinking, and can be used to refer to someone of any age.[51] While rigid and hierarchical workplaces may foster kkondae attitudes, because the term is often used to refer to older people, it can contribute to stereotyping older people as outdated or unwilling to change. C. Sung Ho, 57, has worked for a public corporation for 29 years. “Before we used to guide or correct [younger colleagues],” he said. “But now they think we are old kkondae or useless.”[52]

Older women may be referred to as ajumma, a frequently derogatory term meaning a married or middle-aged woman.[53] L. Mi Kung, 72, has been a care worker for 25 years in a sector dominated by older women workers. She described disrespectful relationships with clients’ families. “Families look down on us and mistreat us,” she said. “They don’t call us by the name for a care worker but call us ajumma.”[54]

The United Nations Committee on the Rights of Persons with Disabilities states that the use of words that perpetuate “difference and oppression,” including based on age, is harassment, a form of discrimination that creates hostile environments where people feel offended, degraded, or humiliated.[55] The World Health Organization and the International Labour Organization have recognized that discrimination and harassment at work, including related to age, pose a risk to and undermine mental health.[56] Studies show that workplace age discrimination increases job-related stress and undermines older workers’ mental health.[57]

Although the Korean word for older person, noin, is not in itself derogatory, it has a negative connotation. J. Mi Sook, 53, who works in human resources for a large company, said: “It means being useless, that you can’t do anything.”[58] She said that where she works, younger people say older colleagues are “old-fashioned and can’t keep up with younger people’s mindset.”[59]

A. Hyun Joo, 47, was laid off from her job with an online service company when she was 46. She was still not working when she spoke to Human Rights Watch and was worried she would never get another job. “I feel too old to be re-employed,” she said. “Companies consider future employees’ age and compensation when they choose people. If, at age 47, I go to a company where the majority of workers are in their 20s and 30s, I don’t think they’d hire me although I have years of experience. They’d think, why hire an older person?”[60]

Older Workers Seen as a “Burden”

In a 2021 survey, Korea Enterprises Federation found that 58 percent of companies surveyed felt that employing people beyond the age of 60 would be a burden because of older workers’ declining productivity, the additional salary-related costs of continuing to employ older workers, and an unspecified negative impact it would have on hiring younger workers.[61]

A number of studies have identified South Korea’s seniority wage-based system as a key reason companies do not wish to employ older workers.[62] Under this system, introduced during South Korea’s early industrialization period to recruit and retain skilled workers, companies pay young, entry-level workers low wages with the promise that these will increase with the number of years they work.[63] However, according to Korea Labor Institute, a public research institution, only 20 to 30 percent of companies were still using a seniority wage-based system in 2023 and had instead moved to a wage system that takes into account performance evaluation results and job performance ability, in addition to years of service.[64] Some employers also use a “peak wage” system, discussed below, where older workers’ wages are reduced in the three to five years leading up to their mandatory retirement in order to lower the cost of continuing to employ them.

Policymakers, too, have contributed to this hostile working environment for older workers. In February 2024, 38 members—one-third—of the Seoul Metropolitan Council, the capital’s local government legislative body, proposed exempting people 65 and older from the Minimum Wage Act in the belief that employers would be more likely to hire them if they were paid less than younger workers.[65] At time of writing, the sub-committee to which the proposal was submitted had not discussed it further, following trade union protests that the exemption discriminated against older workers.[66]

 

II. Discriminatory Age-based Employment Laws and Policies

South Korea’s Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion prohibits age discrimination without reasonable grounds in all aspects of employment.[67]

International human rights law defines discrimination as any distinction, exclusion, restriction, or preference or other differential treatment that is directly or indirectly based on prohibited grounds of discrimination and which has the intention or effect of nullifying or impairing the recognition, enjoyment, or exercise, on an equal footing, of all rights or freedoms.[68]

International treaties listing specific prohibited grounds of discrimination include “or other status.” The inclusion of “other status” indicates that other grounds may be incorporated in this category, which may include age.[69] UN treaty bodies have recognized age as an “other status.”[70] “Differential treatment” based on stereotypes because of age is discrimination.[71] States can only treat people differently because of their age or any other grounds if they can justify such differential treatment as reasonable and objective.[72] To be reasonable and objective, differential treatment must:

1. Have a legitimate aim that is compatible with international human rights standards[73];

2. Be proportionate, meaning the harmful impact of the differential treatment must not outweigh benefits in relation to “the aim sought to be realized”[74]; and

3. Be necessary, meaning alternative, less harmful actions must be considered first.[75]

Differential treatment is discrimination if it fails any one of these three tests—namely it does not have a legitimate aim that is compatible with international human rights standards, or it causes harm disproportionate to the benefits of the aim, or it is unnecessary because less harmful alternatives could be used.

Mandatory Retirement Age

It’s an infringement of human dignity. Just because I’m older, I can’t work where I’ve worked my entire life.

—Gwon Oh Hoon, 52, attorney, Seoul, August 27, 2024

In 2013, the average age set by employers at which full-time workers had to retire from companies with 300 or more employees was 58.[76] This was based on the practices of 2,854 companies and affected 2.4 million workers.[77] In the same year, the National Assembly amended the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion to include a minimum age that employers had to respect when setting their workers’ mandatory retirement age.[78]

A mandatory retirement age is the age at which a worker is forced to retire from their job. It is “mandatory” for the worker because the worker must stop working when they reach a certain age regardless of whether they wish or have the ability to continue working. Depending on the law or policy in place in any given country, employers may be required to use a mandatory retirement age, or they may be permitted to use one if they wish. In either case (whether the employer is required or permitted to use a mandatory retirement age), once set, the retirement age is still mandatory for the worker.

Mandatory retirement ages should not be confused with pension eligibility ages, which refer to the age at which someone is eligible to receive a pension.

The Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion allows employers to set a mandatory retirement age “under labor contracts, rules of employment, collective agreements, etc.”[79] The 2013 amendment to the act stated that employers, if they use a mandatory retirement age, “shall set the retirement age of workers at 60 years of age or older” so that they could not set their mandatory retirement age at 59 or younger.[80] The amendment came into force in 2016 and applies in both the public and private sectors.[81]

In the public sector, the mandatory retirement age of 60 or older applies to full-time employees of national and local governments, as well as public institutions and corporations.[82] The mandatory retirement age of public officials is 60 under the State Public Officials Act.[83] However, the mandatory retirement age of some public officials, such as firefighters and public teachers, is set under legislation specific to their professions and may be 60 or older.[84]

In the private sector, the mandatory retirement age of 60 or older has applied to large companies employing 300 or more regular workers (who have permanent, full-time contracts) since 2016 and to those with fewer than 300 regular workers since 2017.[85] Private sector employers are not obligated by the law to apply a mandatory retirement age, but those who choose to, must set it at age 60 or older. In 2023, 95 percent of companies with 300 or more employees had a mandatory retirement age, the average age of which was 60, the lowest possible age.[86] At that time, 3.1 million people were working on permanent contracts in companies with 300 or more employees.[87]

While the mandatory retirement age forces older workers to retire from their main or career jobs, it does not prevent them from going on to seek work with employers who do not use a mandatory retirement age. In 2023, only 21 percent of companies with 299 or fewer employees had a mandatory retirement age, the average age of which was 61.5.[88] At that time, 13.6 million people were working on permanent contracts in companies with 299 or fewer employees.[89]

Korea Enterprises Federation attributed this difference between large and small companies in setting mandatory retirement ages to solving labor shortages since the smaller the company, the more likely they are to be affected by labor shortages. Smaller companies are less likely to apply a mandatory retirement age as they wish to retain older workers, the federation stated.[90] Mandatory retirement ages do not apply to non-regular workers, including those on fixed-term or temporary contracts, and day laborers.

Incompatible with International Human Rights Law

The Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion prohibits age discrimination carried out without “reasonable grounds” in all aspects of employment, including retirement.[91]

However, the act allows four specified exceptions to this prohibition where differential treatment “shall not be deemed age discrimination.” [92] These exceptions were inserted into the act in 2008 and are where:

1. Age limits are “inevitably” required to carry out certain jobs.

2. Salary and benefits are offered linked to the employee’s length of service.

3. Retirement ages are set under contracts, rules of employment, or collective agreements.

4. Measures are taken to maintain or promote employment of certain age groups.[93]

By naming these as exceptions to the general prohibition of age discrimination in employment without reasonable grounds, the law removes the need for employers to justify any differential treatment in these areas. This includes setting mandatory retirement ages.[94] Because of this permissible exception to the prohibition on age discrimination, the National Assembly was able to amend the act in 2013 to include the age from which employers can set their mandatory retirement age without requiring them to justify it on reasonable grounds.[95]

International human rights law provides that differential treatment is not discrimination only if it can be justified as reasonable, objective, and having a legitimate purpose.[96] Differential treatment cannot be based on stereotypes.[97] By allowing exceptions to the prohibition of age discrimination, the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion removes certain differential treatment, including the use of a mandatory retirement age, from requiring such justification. This means that workers are not protected against age discrimination in relation to the use of a mandatory retirement age, as well as the other three named circumstances.

South Korea has an obligation under the international human rights treaties that it has ratified to ensure that its laws, both as drafted and implemented, do not discriminate or permit discrimination.[98] Under the Labor Standards Act, employers are prohibited from dismissing or laying off workers without “justifiable cause.”[99] However, by making all 60 or older mandatory retirement age programs lawful and exempting them from justification as reasonable, the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion allows differential treatment regardless of whether it is justifiable or not. This is incompatible with applicable international human rights standards on equality and non-discrimination.

Under the Labor Standards Act, employees are also guaranteed the right to request a remedy if they are unfairly dismissed.[100] However, the exception from the prohibition of age discrimination without reasonable grounds denies older workers the right to make a claim of unfair dismissal due to age discrimination when they are subjected to a mandatory retirement age, or to seek remedy and redress for it. International human rights law guarantees everyone the right to seek justice for a violation of their rights, [101] including the right to work.[102]

Human Rights Watch could find no cases or investigations by the National Human Rights Commission of Korea on whether the use of a mandatory retirement age is discrimination on the basis of age or is justifiable on reasonable grounds.[103] Human Rights Watch could also find no cases in which the Supreme Court of Korea examined whether the use of a mandatory retirement age was discrimination on the basis of age or justifiable on reasonable grounds.[104]

South Korea’s constitution guarantees equality.[105] However, there have been very few cases on the mandatory retirement age before the Constitutional Court.[106] In 2015, the court dismissed a claim that the different entry-into-force dates of the mandatory retirement age of 60 or older for companies with more than 300 employees in 2016 compared to that for companies with fewer than 300 employees in 2017 was a violation of the constitutional guarantee of equality.[107] The case did not address whether the mandatory retirement age itself was discriminatory. In 2002, before mandatory retirement ages were made an exception to the prohibition of age discrimination without reasonable grounds, the court dismissed a challenge that a mandatory retirement age was a breach of the constitutional guarantee of equality, stating that “age, unlike sex, religion, or social status, is not enumerated under article 11 of the Constitution as a factor not to be used as a basis for differential treatment.”[108]

By making mandatory retirement at 60 or older lawful and exempt from justification, people affected have no apparent means to make a claim of age discrimination or seek redress under South Korea’s laws.

Causes Disproportionate Harm

Differential treatment based on age is discrimination if it causes disproportionate harm, where the harm it causes outweighs any benefits in relation to its aim.

The Ministry of Employment and Labor stated that the aim of having a “retirement age” starting at 60 was to create “a social environment where the older people who want to work longer can do so.”[109] The aim of setting the retirement age at 60 or older was to reduce early retirement and keep older people in their main jobs until at least 60.[110] In 2013, when the National Assembly amended the law to include a retirement age of 60 or older, the average age at which people left their main job according to the Ministry of Employment and Labor was 53, and early retirement practices such as honorary retirement were common, particularly in white-collar jobs in large companies.[111] While the labor ministry and law refer to a “retirement age,” by exempting retirement ages from the prohibition of age discrimination, employers can force workers to stop working at a certain age regardless of whether they wish or have the ability to continue working, which makes the retirement age mandatory for the worker.

Limited Benefit to Older Workers

Since coming into force in 2016, the mandatory retirement age of 60 or older has had limited impact on people working longer in their main jobs.

Statistics Korea data shows that between 2014—two years before it came into force—and 2023, the average age of retirement from a main, lifetime job stayed the same, at 49.4.[112] Korea Labor Institute has cautioned against reliance on this figure since it excludes older people who were working at the time of the survey, combines wage jobs and self-employed jobs, as well as full-time jobs and temporary jobs, and could include people who left their main job at any age, not just when they were older.[113] The institute’s own analysis shows that among workers 60 and older, there was a minimal increase in the average age of retirement from their main job, from 54.1 in 2016 to 54.9 in 2023.[114] In 2024, Statistics Korea reported that the average age at which people 55 to 79 left their main job was 53. For those 55 to 64, it was 49.[115]

Human Rights Watch wrote to the Ministry of Employment and Labor, KoRail, Korea Enterprises Federation, Seoul Metro, and Seoul National University Hospital between February and June 2025, requesting information on the impact of the mandatory retirement age on keeping older workers in their main jobs until 60 or older and other benefits since it came into force in 2016. Korea Enterprises Federation declined to respond and referred Human Rights Watch to the Ministry of Employment and Labor.[116] Seoul National University Hospital declined to respond.[117]

The Ministry of Employment and Labor responded on March 26, 2025, sharing a report that it had commissioned Korea Labor Institute to produce and publish in 2020.[118] The institute found that the impact of the mandatory retirement age of 60 or older on keeping older workers in their jobs for longer depended on a number of factors, including age, the presence of strong unions, and company size:

• The average length of time that 55- to 64-year-old workers who had already retired had spent in their main job, and the age at which they had retired from it, had not significantly changed. However, the age at which 53- to 62-year-old workers retired was increasing.

• The impact on increasing the time older workers worked for was greater in the public sector, which had previously guaranteed retirement age, than in the private sector, and greater in companies with unions with effective bargaining powers.

• Employment of older workers increased in small- and medium-sized companies where there was already a higher proportion of older workers; employers retained older workers as it was hard to hire new workers; and employers did not reduce older workers’ already low wages. Larger companies, on the other hand, attempted to reduce the number of older workers by offering honorary retirement programs and vocational training to prepare them for work elsewhere.[119]

KoRail responded on March 26, 2025, saying it had no information on the benefits of the mandatory retirement age but providing data on the number of workers retiring each year from 2021 to 2024. Their data showed that of all workers retiring, the proportion retiring at the mandatory retirement age had decreased while those retiring earlier due to honorary retirement or other reasons such as resignation had increased over the four-year period.[120]

Seoul Metro responded on June 20, 2025, but did not provide information on the benefits of the mandatory retirement age.[121]

Based on this data and our interviews, Human Rights Watch did not find evidence indicating that the mandatory retirement age of 60 or older has significantly extended the time older people remain in their main jobs, which was the government’s stated goal in adopting this legislation.

Harm to the Mental Health of Older Workers

The older workers whom Human Rights Watch interviewed said work gave them a sense of purpose, belonging, and self-fulfillment.[122] Yang Myung Ju, 55, is facing mandatory retirement at 60 from her part-time job in customer service in a call center. She works nine hours a day, five days a week, and takes pride in her work despite finding the work stressful and the pay low at KRW1.5million (US$1,125) per month after tax. “I know what I’m doing, I know I do it right, and that gives me a kind of pride,” she said.[123]

Being forced to retire because of age removes this sense of belonging and purpose, and the dignity older workers can get from work.[124] G. Young Soo, 59, has worked for 36 years for an insurance company. He joined the company at 23 as an office worker and has worked as a branch director, a sales team leader at the company’s headquarters, and a team leader conducting training. “I feel a sense of reward, and I’m happy to work there,” he said, but is facing mandatory retirement in one year.[125]

Older workers forced to retire described to Human Rights Watch the fear, anxiety, loss of belonging, purpose and dignity, and financial worries, all indicating significant emotional and psychological distress and harm to their mental health and well-being. The World Health Organization recognizes that “a sense of confidence, purpose and achievement” at work can protect mental health, while job insecurity, exclusion, and discrimination pose risks to it.[126] A study in South Korea looked at the effects of retirement on depressive symptoms and found that the negative effects of completely exiting the workforce before the average age, which the study cites as 72.3 in South Korea in 2018, increased as the retirement age lowered, and was greater among younger people forced to retire.[127]

Y. Kyung Hee, 59, is a professor in a public research institute where she has worked for 27 years. She is also facing mandatory retirement in one year. For her, work is not only a way to earn money but also something meaningful she does every day. “I’m worried about the mandatory retirement age as I can’t imagine not going to work every day,” she said. “I feel afraid.”[128]

After working as a nurse for 36 years, D. Young Sook, 59, is anxious about loneliness and isolation after she is forced to retire at 60. “I can’t imagine myself being out of this organization,” she said. “It would feel like standing by myself on a windy road.”[129]

In research on the effects of the mandatory retirement age of 60 or older, commissioned by the Ministry of Employment and Labor, Korea Labor Institute found that workers may experience significant psychological distress as they struggle to adjust to being dismissed by companies they were committed to.[130] Older workers told Human Rights Watch about the injustice of being forced to retire when they were able to continue working. Kim Dai Hun, 63 and forced to retire at 60 from his job as an office worker at Seoul Metro, a local public corporation, said the mandatory retirement age was not fair. “Compared to the past when [South] Korea was economically poor, we are now healthier compared to our age, but we have to retire way too early,” he said. “If there were no mandatory retirement age, those who can work longer would not be deprived of the right to choose [whether to continue working or not].”[131]

Financial Harm to Older Workers

Mandatory retirement also forces people into lower-paid, more precarious non-regular work, despite the labor ministry’s aim to reduce non-regular employment, for example by directly employing previously sub-contracted public sector workers.[132] Some forced retirees told Human Rights Watch that they found employment doing a similar job but for a sub-contractor, for lower wages, or on short, fixed-term contracts. Park Hae Chul, 58, started working for the Korean Railroad Corporation (KoRail), a public corporation and national railway company, in 1994 and is executive committee chair of the Korea Rail and Metro Unions’ Council. He said that KoRail has a mandatory retirement age of 60. “When people retire from the company, around 30 percent of them go to outsourcing companies for KoRail and do the same work, but their income is lower.”[133]

In 2024, the Ministry of Employment and Labor reported that the average monthly wage of workers 60 and older was 29 percent less than that of workers 59 and younger.[134]

Some workers are disproportionately disadvantaged if employers set different mandatory retirement ages for different jobs. As a nurse, D. Young Sook must retire at 60. However, the mandatory retirement age for doctors and medical school professors at the hospital where she works is 65. This policy risks discriminating based on gender, as nurses in South Korea are predominantly women and doctors predominantly men.[135]

In addition, under a peak wage system, workers whose wages are reduced in the three to five years leading up to their mandatory retirement also experience financial harm before they are forced to retire.[136] The financial harms of these wage reductions prior to the mandatory retirement age exacerbate the financial harms of mandatory retirement itself.

Human Rights Watch wrote to KoRail, Seoul Metro, and Seoul National University Hospital in June 2025 asking for information on the aim and scope of their mandatory retirement age policies, processes they followed to assess whether the retirement ages would not be discriminatory in violation of basic rights, and how they periodically review them. Seoul Metro and KoRail responded that their mandatory retirement age for employees was 60, with KoRail, additionally setting the age for “specialists” under separate employment contracts.[137] Neither provided information on assessments or periodic reviews of mandatory retirement age policies. Seoul National University Hospital declined to respond.[138]

Based on this evidence and our interviews, Human Rights Watch considers the mandatory retirement age to be disproportionate, with the harm it causes outweighing any benefit to its stated aim of keeping people in their main jobs until 60.

Is Unnecessary

The Ministry of Employment and Labor has a policy to subsidize businesses that re-employ workers when they reach the employer’s mandatory retirement age, raise the retirement age, and/or abolish the mandatory retirement age.[139] The ministry says these subsidies are incentives for employers to retain older workers in their main jobs for longer.[140] The need for such incentives, including for abolishing mandatory retirement ages, can be interpreted to mean that the ministry itself believes that the mandatory retirement age of 60 or older is not keeping older workers in their main jobs—the ministry’s original aim—and is not necessary.

Alternative measures are available for retaining older workers in their main jobs that do not force them to retire at 60 or older. These include ongoing training and professional development opportunities to maintain and enhance skills; flexible or part-time work for those who wish to reduce their hours or transition toward retirement at a time of their choosing; or programs to support better health.[141]

Furthermore, the alternative of abolishing the mandatory retirement age and enabling workers to continue working on their current terms and conditions if they wish to is less harmful to older workers than re-employing them after mandatory retirement on lower-paid, more precarious temporary contracts, as discussed in the section below on re-employment policies.

“Peak Wage” System

Older people are mistreated and discrimination against them is rampant. And in the middle of that is the peak wage system.

—Park Hae Chul, 58, railway engineer, Seoul, August 30, 2024

The “peak wage” system reduces workers’ wages at a certain age or freezes them so that they do not rise any further. This system is a way to reduce the cost of employing older workers under a seniority-based wage system where salaries rise in line with length of service. Some companies introduced peak wage systems in South Korea in the mid-2000s, reducing older workers’ salaries in exchange for guaranteeing their employment until retirement age.[142]

When the government amended the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion in 2013, stipulating that the mandatory retirement age should be 60 or older, it also legislated for employers to restructure their wage systems “in consideration of the conditions at the relevant business or place of business.”[143] With more people expected to work until 60, the Ministry of Economy and Finance produced guidelines in 2015 to accelerate the adoption of a peak wage system among public institutions to reduce workers’ wages in the three to five years before their mandatory retirement age.[144] At the same time, the Minister of Employment and Labor said that the seniority wage system, where wages increase with each year worked, “must ultimately be reformed to focus on job competency and performance.”[145]

The peak wage system could be applied where the retirement age had not changed (retirement age maintenance), where the retirement age had been raised (retirement age extension), and where re-employment occurs after retirement age on a contract on a lower wage.[146]

The aim of the peak wage system was to create new jobs for younger employees in order to increase productivity.[147] The guidelines stipulated that, for every employee whose employment was extended until 60, a younger employee should be hired in an entry-level position. The savings made from reducing the salary of the older employee would be used to pay for the younger employee. Institutions were free to decide the exact rate and duration of the salary reductions.[148]

The government also made adoption of the peak wage system part of public institutions’ performance evaluation and considered subsidizing each new employee hired.[149] By the end of 2015, all 313 public institutions had decided to adopt it.[150] Alongside extending mandatory retirement ages by an average of 2.5 years, they reduced salaries in the 3 years before mandatory retirement to about 83 percent, 77 percent, and finally 70 percent of the original salary in the final year before mandatory retirement.[151]

While not compulsory for private companies, the government encouraged them to adopt the peak wage system.[152] By 2022, 51 percent of private companies with a mandatory retirement age and more than 300 employees, and 21 percent of private companies with fewer than 300 employees had adopted it.[153]

The courts in South Korea have not treated the peak wage system as an exception to the prohibition on age discrimination without reasonable grounds.[154] Under the Labor Standards Act, employers are prohibited from reducing the wages of workers without “justifiable cause.”[155] In 2022, South Korea’s Supreme Court considered the following in deciding whether use of the peak wage system is reasonable or discriminatory: the legitimacy of aim and necessity, degree of disadvantages to older people, whether reduced wages meant reduced workload or intensity of work, and whether expenses saved were actually used for the original purpose.[156]

The Supreme Court determines the invalidity of a company’s peak wage system on a case-by-case basis. For example, in May 2022, the court ruled that reducing labor costs and increasing performance was not a justifiable reason for a research institute to reduce the wages of workers from age 55 to their existing mandatory retirement age of 61, and that no measures had been taken to offset the disadvantages to the older workers affected.[157] However, in March 2024, the court ruled that a bank’s peak wage system was justifiable because its aim of hiring experienced workers under an efficient labor cost system was reasonable, and because the reduction in wages was accompanied by an extension of the mandatory retirement age. Consequently, the court said that, although those affected worked for an extra year, the overall loss to their base salary over the period the peak wage system was applied—10 percent—was not a significant disadvantage coupled with a reduction in hours and duties and other incentives offered.[158]

In a review of lawsuits on the peak wage system, the Korea Economic Daily found that, after the Supreme Court first ruled that the peak wage system could be discriminatory in May 2022, the number of cases doubled from 111 in 2022 to 213 in 2023. They noted a particular rise in cases initiated in the lower courts, from 80 in 2022 to 187 in 2023.[159]

Of 17 discrimination complaints on the peak wage system to the National Human Rights Commission of Korea between 2022 and 2024, the commission dismissed all eight where the applicants’ wages were reduced in the years leading up to a retirement age that had been extended to 60 or older, often citing the additional years of work as a benefit to the worker despite the reduced pay. In contrast, it only dismissed three of the nine complaints when applicants’ wages were reduced in the lead-up to a retirement age of 60 or older that was unchanged.[160]

Based on an Ageist Stereotype

International human rights law prohibits treating people differently based on a stereotype, including ageism, as this constitutes discrimination.[161]

The peak wage system aims to create new jobs for younger workers in order to increase productivity.[162] Paying older workers less to free up wages to employ younger ones, in order to increase productivity, assumes that older workers are less productive because of their age. The Ministry of Employment and Labor based the peak wage system on the concept that it would contribute to increased productivity by reducing employees’ wages in line with their “reduced productivity and work performance” after a certain time, and hiring younger employees with the money saved.[163]

Studies on age and productivity in South Korea have shown that ageing is not associated with lower productivity at work.[164] Concluding that all older workers are less productive than younger ones is an ageist stereotype. Kim Ki Hee, 60, a care worker, said: “People’s physical age and capabilities are different, and you can’t limit their ability to their age.”[165]

Since the peak wage system is based on this ageist stereotype, it is unjustifiable and is discriminatory.

Causes Disproportionate Harm

Government Has Not Demonstrated the Benefit to Younger Workers

As mentioned, the peak wage system’s aim was to hire more younger workers. Meeting its intended aim is one of four tests the Supreme Court of South Korea uses to justify such differential treatment of older workers.[166] In 2015, when all public institutions had decided to adopt the peak wage system, the youth employment rate (age 15 to 29) was 42 percent.[167] In 2024, it had risen to 45 percent.[168] However, despite the Ministry of Economy and Finance guidelines stipulating that a younger worker should be employed for each older employee whose employment is extended and wages reduced, Human Rights Watch found limited evidence to show the peak wage system has been a direct benefit to younger workers.[169]

Findings in studies on the impact of the peak wage system on employment of younger workers published at different times using different data are inconsistent. One 2017 study of companies with more than 100 workers found that the peak wage system had no impact on youth employment.[170] Another, in 2021, found that introducing a peak wage system had no long- or short-term effects on employment although it did decrease over time the number of regular workers and increase the number of non-regular workers, whose working conditions are generally less favorable.[171] A third study in 2023 found an increase in the proportion of younger to older workers when the peak wage system was used, as well as a negative impact on the proportion of older workers where the retirement age had been extended.[172]

The government’s original intention was to “closely review job creation under the new wage system.”[173] Human Rights Watch wrote to the Ministry of Employment and Labor in February 2025 to ask for the results of its monitoring of job creation for younger workers. The ministry responded in March 2025 stating it did not have this information.[174] For C. Jung Hoon, an insurance company union representative, the failure of the government to monitor whether companies are reducing the workloads of those subject to the peak wage system or using the money saved to hire younger workers, as it had committed to, gives rise to legal disputes between companies and workers.[175]

Three employees in two public institutions and two in a private company who spoke to Human Rights Watch said that they had not observed their workplaces using the money saved to hire more younger workers.[176]

Y. Kyung Hee, 59, has worked in a public research institute for 27 years. She said: “It's not easy for the institution to hire younger people because we are a public organization and so there is [only] a certain number of people they can hire.”[177]

Hyun Jung Hui, 58, has worked at Seoul National University Hospital, a special corporation, for 29 years, first as a midwife and then as a union representative.[178] She said: “The peak wage system has no impact. We get a reduced salary, but the number of people the hospital hires is set. The money is not set aside by itself [to hire younger workers] but is just used for annual costs.”[179] Human Rights Watch wrote to Seoul National University Hospital in February and June 2025 to ask for the results of its monitoring of job creation for younger workers with money saved from reduced wages under the peak wage system. The hospital declined to respond.[180]

Seoul Metro informed Human Rights Watch that it introduced a peak wage system in 2015. However, the corporation said that if, in any given year, savings from reduced wages were insufficient to hire one younger employee for each 59-year-old worker placed under the peak wage system, it reduced the number of younger employees it hired, with approval from the Ministry of the Interior and Safety. [181]

While private companies do not necessarily have fixed numbers of staff, their employees may face similar problems to those encountered by public employees. G. Young Soo, 59, expressed disappointment that his employer had not used the savings from his reduced wages to strengthen the company. “When the peak wage system was first introduced, the company promised to use the finance to hire younger workers. But if you look at the employment statistics [of the company] over the last five years, this is not true,” he said.[182]

In February 2025, Human Rights Watch asked Korea Enterprises Federation for information on how its members and private sector businesses were monitoring the use of money saved under the peak wage system to hire younger workers. The federation declined to respond, saying that its request should be addressed to the Ministry of Employment and Labor.[183]

Harm to the Mental Health of Older Workers

Being paid less because of older age can have a significant impact on older workers’ sense of dignity. Gwon Oh Hoon, 52, attorney, expressed feeling very frustrated. “I feel as I’m getting older, I’m becoming useless, and the company doesn’t want me anymore,” he said.[184]

Others felt demotivated,[185] a sense of deprivation,[186] and anger at how they had been treated.[187] This harmful impact on mental health and well-being can be exacerbated for those whose level of responsibility decreases alongside their wages. Although the hours and intensity of G. Young Soo’s workload at his insurance company stayed the same under the peak wage system, his decision-making authority was reduced. After 36 years of loyal service, he felt the company mistreated him. Under the peak wage system, he said, “Regardless of your career or your position, you are pulled out from managerial positions such as team leader or director.”[188]

G. Young Soo said he finds the peak wage system particularly unjust because South Korea is shifting away from a seniority wage system to a performance-based one that does not pay older workers more because of their age. “For example, in my company there are younger workers who get a higher salary than me,” he said.[189]

Also, according to the public transport worker C. Eun Jung, 55, the fact that the peak wage system is not applied universally causes a sense of injustice among those who are subjected to it. “Civil servants are not affected by the peak wage system,” she said. “So many people feel it is unfair.”[190]

Financial Harm to Older Workers

The reduction in salary has a significant financial impact. In a 2024 survey of 69 companies in the public and private financial sectors, the Korea Labor and Social Research Institute found that employers reduced wages of those under the peak wage system by an average of 35 percent a year.[191]

In its 2020 report, Korea Labor Institute warned that while the mandatory retirement age of 60 or older may extend an older worker’s tenure at certain companies, the accompanying use of the peak wage system had the potential to force workers into poverty.[192] Government guidelines for public institutions state that the system should not be applied to anyone earning 150 percent or less of the minimum wage, which was KRW3,091,100 or (US$2,316) or less in 2024, at the time of Human Rights Watch’s interviews.[193] However, these guidelines do not apply to private companies. The media has reported cases where earnings fall below the national minimum wage once the peak wage system is applied.[194]

The peak wage system can have a negative knock-on effect on other financial entitlements. G. Young Soo and his employer pay a total of 9 percent of his salary into the National Pension System. “Since my salary is being reduced by the peak wage system,” he said, “then the amount that I [and my employer] contribute to the [National Pension] System will also be reduced and so my total savings will be less and therefore the amount I receive when I am eligible [for my pension] will be less.”[195]

Severance pay, a legally guaranteed payout at resignation or retirement after at least one year of continuous service,[196] can be significantly reduced if it is based on a final, reduced wage, rather than the peak wage before reductions. H. Kyung Ok, 57, said her husband retired at 57 before his company’s peak wage system would have affected him because if he had stayed until 60, his severance pay would have been based on a salary reduced by 50 percent.[197]

Unemployment payments under the Employment Insurance System can also be negatively affected by the peak wage system. Unemployment payments are based on 60 percent of the average usual earnings of the three months prior to being forced to retire, and so reduced wages under the peak wage system leading up to mandatory retirement would also reduce the level of unemployment payments.[198]

“Honorary retirement” is where employers encourage employees to voluntarily retire before the mandatory retirement age.[199] G. Young Soo, said his employer “pressured” workers to resign in 2013 and 2016. The company offered a special bonus to 55-year-old employees to resign instead of working longer under the peak wage system. He said only 18 percent chose to keep working. “We needed a lot of courage to choose to work until the age of 60 under the peak wage system.”[200]

Such “early” retirement resulting from the enforcement of the mandatory retirement age and peak wage system contributes to the low average retirement age from a main job of 54.9 years.[201]

Employers’ Inconsistent Application of the Peak Wage System

Since employers are free to decide the exact rate and duration of salary reductions, discrepancies in how different employers apply the peak wage system disproportionately disadvantage some older workers. [202] G. Young Soo said his employers first reduced his salary by 20 percent when he was 56. They further reduced it by 10 percent each year so that at age 60, he would earn only 52 percent of what he earned at age 55. “It is discrimination because our income has been reduced because of our age,” he said. “It is not justified.”[203]

Seoul National University Hospital, by comparison, has a peak wage system of one year, at age 60, when workers can choose to work full-time for 100 percent of their salary or stop working and participate in “merit training” courses to prepare for life in retirement at 60 percent of their salary.[204] Hyun Jung Hui, who works at the hospital branch of the Korean Health and Medical Workers Union, said the union was instrumental in securing the extent of the wage reduction and its duration at the aforementioned hospital. “If the union had said nothing, we would still only receive 80 percent [of our salary] at the age of 59 and 70 percent at the age of 60,” she said.[205]

Older workers in lower-level positions, already on lower pay, may also be disproportionately affected. The public corporation where C. Sung Ho, 57, works has six staff levels. Those in the lowest three levels receive a 25 percent salary reduction at ages 58 and 59, whereas those in the top three levels have a 25 percent reduction only at age 59.[206]

Compensation Does Not Remedy Reduced Wages

Some employers offer programs or opportunities as compensation for the reduction in salary. These vary from one employer to another and can include reduced working hours, extra vacation days, training opportunities, or being paid to train other staff.[207]

However, in an April 2024 survey of 69 companies in the public and private financial sectors by the Korea Labor and Social Research Institute, 44 percent said the working conditions of those under the peak wage system remained the same, despite their wage reductions.[208]

Even when compensation is provided, some of those interviewed for this report do not regard it as a good substitute for the loss of wages. Kim Dai Hun, 63, who was forced to retire at 60 and whose salary was reduced by 14 percent in the first year of the peak wage system and 28 percent in the second, told Human Rights Watch that he got two extra vacation days per month under the peak wage system and could train staff for five hours a month for KRW200,000 ($139). He said: “Yes, I took the vacation days, and I did the training, but because I believe the loss was way bigger than the reimbursement, I felt a strong sense of deprivation.”[209]

Is Unnecessary

One of the peak wage system’s aims was to encourage youth employment. However, there are other options for increasing youth employment that do not cause such mental and financial harm to older workers for South Korean authorities to explore. Retaining the peak wage system is not a necessary component of these policies.

The Organisation for Economic Co-operation and Development (OECD), a standard-setting intergovernmental organization of 38 members,[210] cites several reasons for South Korea’s high youth unemployment, including the impact of the Covid-19 pandemic, a mismatch between high levels of tertiary educational attainment and available jobs, and a decline in vocational education.[211]

The Ministry of Employment and Labor has a number of policies to support young people in their job search and starting businesses, and employers in hiring them.[212] They include the National Employment Support System, which provides an allowance, career counselling, and vocational training opportunities to groups struggling with low employment rates, prioritizing those age 15 to 34, among others.[213] In 2024, the labor ministry piloted two youth employment programs, the “Youth Employment Leap Incentive Program,” which subsidizes employers who employ younger workers, and the “Regional Youth Employment Networking Program,” which supports younger people in their job search.[214] The ministry also funds the University Job Plus Center Project, which runs over 120 career centers in universities, supporting students and local young people to find jobs.[215] Human Rights Watch wrote to the Ministry of Employment and Labor in March 2025 to ask for information it had on the impact of other policies or programs aimed at increasing youth employment since 2016. The ministry responded in March 2025 stating it did not have this information.[216]

Many companies have indicated they do not find the peak wage system helpful. In a 2021 survey of 1,021 companies by Korean Enterprises Federation, of the 594 that said that retaining older workers beyond the age of 60 under the mandatory retirement age was a burden, only one-third felt that the peak wage system was a suitable measure to relieve that burden. Others suggested alternatives including reforming the wage system and skills training for older workers.[217]

 

III. Re-Employment Programs Disadvantage Older Workers

The government tries to create more jobs for older people, but they switch from regular jobs to contract [non-regular] ones that are outsourced to private companies.

—Park Hae Chul, 58, railway engineer, Seoul, August 30, 2024

The mandatory retirement age and peak wage system necessitate the “re-employment” of older people wishing to work after being forced to retire from their main jobs because of their age. Others who have left their main jobs for other reasons, including honorary retirement, may also wish to re-enter the workforce. However, jobs available to older people are limited and segregated into certain types of work that are often low-paid and precarious.

Limited Government Services

To address the low retirement age from main jobs and re-employment, local and state governments have invested in various re-employment programs to get people 50 and older into work. These programs are underpinned by legal guarantees.

The Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion not only establishes a mandatory retirement age of 60 or older, but also government support for employing older and middle-aged people, including research, training and counseling services, guidance and subsidies for employers who hire older and middle-aged people, and employment service centers.[218] The Welfare of Senior Citizens Act also provides for dedicated employment agencies for older people.[219] The Framework Act on Low Birth Rate in An Aging Society tasks state and local governments to create an environment in which older people who wish and are able to work can do so, and to encourage their participation in leisure, cultural, and social activities.[220]

Demand for training is high, so the government has expanded such programs.[221] For example, Seoul 50 Plus Foundation, which is funded by Seoul Metropolitan City Council, provided training or job information to 1.32 million middle-aged people through their 4 campuses and 12 centers across Seoul, and to 9.7 million via their website, between 2015 and February 2023.[222] In 2022, a program for people age 60 and older on low incomes run by the Korea Labor Force Development Institute for the Aged (KORDI) on behalf of the health ministry—the Senior Employment and Social Activity Support Program (SESAP)— placed 881,535 older people nationwide in jobs.[223]

However, 71 percent of the placements KORDI oversaw in 2022 were “public service” positions, which are volunteer roles, such as supporting other older people.[224] While these play an important role in improving older people’s sense of connection and contribution to their communities,[225] they are not employment. Only 9 percent were social service jobs; another 9 percent were employment placements in the private sector; 5 percent were paid internships; another 5 percent were involvement in small enterprises; and 0.3 percent were jobs at “senior-friendly” companies.[226]

Lower-Paying, More Precarious Jobs

When middle-aged and older people leave or are forced to retire from their main job because of their age, the new jobs they get are often lower paid. Korea Labor Institute reported that the wages of those who retired from their main job in 2014 significantly dropped two years before retirement and then continued to decline over three years of re-employment.[227] The institute also reported that the proportion of people working for less than the national minimum wage increased from 10 percent in the year before they retired to 30 percent three years later.[228]

In 2022, the average monthly wage from an employment placement with KORDI, including part-time positions, was KRW1,497,079 ($1,121)—lower than the monthly national minimum wage of KRW1,914,440 ($1,543) at that time.[229] Labor ministry data shows that the average monthly wage of people 60 and older earning a salary in 2024 was KRW2,720,000 ($2,040), 29 percent less than the average monthly wage of workers 59 and younger.[230]

Work after leaving or being forced to retire from main jobs is also often more precarious, non-regular work. Of people 60 and older earning a salary in 2023, 69 percent had non-regular jobs.[231] This is nearly double the rate of non-regular workers in the general population (age 15 and older) at 37 percent.[232]

Relatedly, according to Korea Labor Institute, the stability of older people’s work deteriorates as the proportion of full-time jobs declines and that of temporary, fixed-term and casual jobs increases.[233] The average length of an employment placement through KORDI was just 4.6 months in 2022.[234]

Older workers are provided less protection than younger workers under the Act on the Protection of Temporary Agency Workers. The act limits the time workers are employed under temporary agency contracts to one year, with a maximum of two consecutive one-year contracts possible before the employment status must be changed. However, workers 55 and older can be employed for over two years on temporary agency contracts.[235]

Jang Geum-Nyeo, 64, left her job as a journalist when she was 56 and has been a care worker since then. Although the government paid for her to retrain as a care worker, she still only has the security of a one-year contract. “There is an agency between the government and us as care workers,” she said. “The agency hires us. I have a one-year contract.”[236]

Many older workers do not have the security of a regular salary. In August 2024, 27 percent (1.8 million people) of non-waged workers were 50 to 59, and 39 percent (2.6 million) were 60 and older. Half of all non-paid family workers were 60 and older, as were 42 percent of self-employed people with no employees.[237]

Such precarious work can have a negative impact on older workers’ health. A study on the impact of employment transitions among older people in South Korea found that those who moved into self-employment, precarious work, and unpaid family work were more likely to report poor physical health than those who moved into non-precarious work.[238]

Legally Permissible Less Favorable Working Conditions

Part of the reason for worsening job conditions is that the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion allows employers to re-employ individuals who have been mandatorily retired under less favorable conditions than before their retirement. Employers can exclude the employee’s previous employment period when calculating entitlements and set a different, lower wage.[239]

At the public research institute where Y. Kyung Hee, 59, is a professor, employees may work for one more year after mandatory retirement at 60. “You can teach twice a week and get KRW2.5 million ($1,873) per month,” she said. Her salary before it was reduced under the peak wage system was KRW6.5 million ($4,869) per month.[240]

Occupational Segregation

People work in a wide range of jobs before retiring. Data from Statistics Korea shows that the proportion of older workers in professional or “expert” positions, office, services and sales, and machine-operating jobs declines as they get older but rises in farming and fishing, and work described as “simple labor.”[241] Statistics Korea classifies occupations in a number of different categories. “Expert” includes engineering, health, education, and legal professionals, while “simple labor” includes construction, transport, domestic workers, and cleaners.[242]

The Ministry of Employment and Labor subsidizes companies to re-employ middle-aged people, ages 50 to 54. However, it excludes for re-employment, among others, those occupations with an already high proportion of workers 50 and older. This includes forestry and fishing workers, clergy and other religious workers, chefs and cooks, tailors and seamstresses, clothing manufacturers, care workers, and security guards.[243]

The jobs older people can get may be jobs that others do not want. C. Sung Ho, 57, currently assesses people’s eligibility for social security entitlements. He has heard from workers older than him that he could get a job as a janitor managing a building after he is forced to retire.[244] Older men can find such work as janitors or security guards, while older women often find that their only paid employment option is as a care worker. Kim Ju Ran, 59, has been a care worker for four years. She said that young people avoid becoming care workers:

A lot [of care workers] are in their late 60s and 70s, but there are no young people entering our industry because, compared to the workload, the income is so low. You have to bathe, cook, and change their diapers when they urinate and defecate. Young people are overwhelmed by this.[245]

Older workers are concentrated in specific occupations that are seen as suitable for older people and which younger people do not wish to do. These jobs are often low-paid, physically demanding, and perceived as low status. Occupational segregation such as this based on age is a form of systemic discrimination.[246]

Together, these three policies—forcing people to retire, paying them less because of their age, and moving them into lower-paid, more precarious, and often more physically demanding work—violate older people’s rights to work and non-discrimination. They also reinforce negative, ageist attitudes about older people’s abilities and place in society in South Korea today.

 

IV. Limited Social Security

For older people in South Korea, the impact of mandatory retirement, the peak wage system, and being forced into lower-paid, more precarious work is compounded by the limited coverage and inadequacy of social security in older age.

South Korea calculates its relative poverty rate as the percentage of the population whose income is 50 percent or less of the national median income. In 2023, the annual national median income was KRW37.6 million (US$28,200).[247] At that time, the relative poverty rate among people 65 and older was 38 percent, compared to 15 percent across the whole population.[248]

Pension Eligibility Ages

The age at which contributors are eligible to receive the National Old Age Pension depends on the year they were born, including whether they opt to take it early at a reduced rate.

Year of Birth	Eligibility Age	Early Eligibility Age
Up to 1952	60	55
1953-1956	61	56
1957-1960	62	57
1961-1964	63	58
1965- 1968	64	59
1969 onwards	65	60
Source: National Pension Service, “National Pension Statistics: Facts Book 2023,” December 2024, https://www.nps.or.kr/eng/rsrhinst/ntnlpnsrsrhinst/getOHAI0085M0.do?menuId=MN25000006 (accessed May 9, 2025), Table 27, p. 68.

Because people forced to retire at 60 must wait three to five years (depending on when they were born) before they can access the National Old Age Pension without early eligibility age reductions, mandatory retirement creates an income gap that older people told Human Rights Watch they cannot afford. Park Hae Chul will be forced to retire as a railway engineer when he is 60 and will be eligible for the National Old Age Pension at 64. “When I retire, I’m going to get the unemployment benefit for 9 months. And then I’ll use my savings. I’ll try to look for another job,” he said. “If I retire at the age of 64 and there’s no gap, then that would be better.”[249]

The eligibility age for the Basic Pension is 65 regardless of year of birth.[250]

In August 2024, a member of the National Assembly proposed a bill to amend the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion, to raise the minimum mandatory retirement age in order to close the gap between it and the pension eligibility ages. The bill proposes a gradual increase in the minimum mandatory retirement age to 63 in 2027, 64 between 2028 and 2032, and 65 in 2033.[251]

Limited Coverage

Pensions

Coverage of the National Pension Service’s Old Age Pension is limited. By 2023, 22.4 million people were insured by the program, which also provides disability and survivor pensions.[252] The majority (two-thirds) are insured through their workplace, where the employer and employee share the contribution payment equally, and where contributions are waived in the event of unemployment or parental leave, for example.[253] South Korea has one of the highest rates of self-employment among OECD countries: 23 percent in 2023.[254] Those who are self-employed, unpaid family workers, informal sector workers, or not working may find it difficult to pay the full contribution themselves. In 2024, six million people were self-employed, and one million were unpaid family workers.[255] Fewer women contribute to the program than men.[256]

In 2023, 6.6 million people received a pension under the National Pension System. Of these, 5.5 million received the National Old Age Pension, just 40 percent of South Korea’s 13.7 million people 60 and older.[257] That same year, only 38 percent of recipients of the National Old Age Pension were women.[258]

In 2023, 6.5 million people—67 percent of all those 65 and older—received the Basic Pension.[259] Women made up 60 percent of all recipients.[260] According to the threshold set by the minister of health and welfare in 2025, to be eligible for the Basic Pension, an older person’s monthly income must fall below KRW2,280,000 ($1,563) for a single person and KRW3,648,000 ($2,500) for a couple.[261]

Access to workplace pensions in the private sector is also limited. While the number of workers participating in private sector retirement pension plans is increasing, the coverage rate in 2023 was about 53 percent. Across industries, the rate was highest among finance companies at 76 percent, and lowest among accommodation and food services at just 24 percent.[262] In 2023, 3.2 million people had a private pension. However, early withdrawals from personal retirement plans are permissible in certain circumstances, and in 2023, early withdrawal for buying and renting houses was particularly high among those 30 to 39.[263]

Workers on one-year contracts and working less than 15 hours per week are not eligible for private sector severance payment programs.[264]

Other Social Security Entitlements

The National Old Age Pension program is one of four social insurance programs, along with workplace accident, health, and unemployment insurance.

Workers covered by unemployment insurance who are made unemployed involuntarily, including through mandatory retirement, are eligible for unemployment payments at 60 percent of their average earnings in the three months prior to losing their job. Those age 50 and older are eligible for unemployment payments for 120 to 270 days, depending on the number of years they have contributed to the program. Workers 65 and older can only be part of the program if they are working in a job they had before they were 65.[265] In 2023, the National Human Rights Commission of Korea recommended that this eligibility age limit be raised in order to protect the right to social security for those 65 and older who start a job or their own business after the age of 65.[266] In 2024, the commission found that the Ministry of Employment and Labor had only partially accepted their recommendation by considering to raise the eligibility age but making no concrete plan to do so.[267]

Older people on low incomes may be eligible for other means-tested social assistance including income, medical, and housing assistance. In 2023, 1.2 million people 60 and older received support under the Basic Livelihood Security Program.[268] Regardless of age, those whose income is 32 percent or less of the national median income are eligible for income support, and those living on 40 and 48 percent or less are eligible for medical and housing assistance, respectively.[269]

The relative poverty line is set at 50 percent or less of the national median income, which is above these eligibility criteria. As a result, some people whose income is above these thresholds but still below the relative poverty line are not eligible. Those who have exceeded the maximum number of days they are entitled to the unemployment benefit but whose income is above these income thresholds, including those who still fall below the poverty line, are not eligible for social assistance.

Inadequate Monthly Payments

The value of monthly National Old Age Pension and Basic Pension payments are low.

National Old Age Pension

In 2023, the average monthly payment of the National Pension Service’s Old Age Pension was KRW620,300 ($468).[270] This was just 27 percent of Seoul Metropolitan Government’s Living Wage for the city’s public sector workers of KRW2,331,813 ($1,760) per month in 2023.[271] And it was just 31 percent of the 2023 national minimum wage of KRW2,010,580 ($1,518) per month.[272]

The amount recipients get each month is based on an income replacement rate (the percentage of a worker’s pre-retirement income that is paid out by the pension) of 40 percent.[273] This is well below the average income replacement rate for pensions among OECD countries, at 61 percent in 2022.[274] In September 2024, the government announced reforms to the National Pension System to ensure its financial sustainability.[275] Under the reforms, the government proposed to gradually increase the monthly premiums from 9 to 13 percent of an individual’s salary, and the income replacement rate would rise by just 2 percent.[276]

The number of years the recipient has contributed to the program also affects the amount of their pension. In 2023, the average monthly payment for those contributing for 20 years or more was KRW1,036,854 ($783), compared to KRW419,461 ($317) for those contributing between 10 and 20 years.[277] Even those who have contributed for 20 years or more are still only receiving half of the national minimum wage, and just under half of Seoul’s Living Wage.

Older women are particularly disadvantaged. Fewer women have contributed to the program than men. In 2023, only 38 percent of recipients of the National Old Age Pension were women, compared to 90 percent of recipients of the Survivor Pension which had a lower average monthly payment of KRW342,283 ($258), just over half of that of the National Old Age Pension.[278]

Basic Pension

In 2025, those who have not contributed to the National Old Age Pension, whose National Old Age Pension is KRW513,760 ($353) or less, who receive a survivor or disability pension, or who receive financial support through the National Basic Living Security program were eligible for the standard amount of the Basic Pension.[279] Others who do not meet these criteria but whose income falls below the income threshold are subject to a reduction in the pension amount.[280]

In 2023, 89 percent of recipients of the Basic Pension received the standard Basic Pension amount.[281] In 2024, at time of Human Rights Watch’s interviews, this was KRW334,810 (US$252), just 16 percent of the 2024 monthly national minimum wage of KRW2,060,740 (US$1,553).[282] In September 2024, the Ministry of Health and Welfare proposed to raise the Basic Pension for those eligible to KRW400,000 (US$301) per month by 2027.[283] In 2025, it had increased to KRW342,510 (US$235).[284] Even if an older person receives the National Old Age Pension and is eligible for the standard Basic Pension amount, their maximum income from the two programs in 2025 would be just KRW856,270 ($588) per month, just 41 percent of the national minimum wage and 35 percent of Seoul Metropolitan Government’s Living Wage.[285]

 

V. South Korea’s Legal Obligations

South Korea’s government has legal obligations under national and international law to guarantee everyone over age 18 their rights to nondiscrimination, work, and social security. However, Human Rights Watch found that three age-based employment laws and policies do not meet these obligations.

By naming the use of mandatory retirement ages as an exception to the prohibition on age discrimination without reasonable grounds, the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion removes the need for employers to justify as reasonable this differential treatment of workers on the basis of their age. Not requiring such justification is incompatible with international human rights law, which provides that differential treatment is discrimination unless it can be justified as having a legitimate aim, is proportionate and necessary, and is not based on stereotypes.

In addition, the harm the law causes outweighs its intended benefits since it has limited impact on its aim of keeping older people in work until 60, while causing grave mental and financial harms to older people. Human Rights Watch found that being forced to retire solely because of older age affects people’s dignity, purpose, and self-fulfillment and pushes them into lower-paid, more precarious work. Human Rights Watch considers the mandatory retirement age in the Act on Prohibition of Age Discrimination in Employment and Elderly Employment Promotion also to be unnecessary because there are other, less harmful ways to keep older people in the jobs for which they are skilled and trained.

The peak wage system aims to create new jobs for younger workers to increase productivity. Under this system, employers can reduce older workers’ wages in the three to five years before their mandatory retirement and should use the savings to hire younger workers to increase productivity. That retaining older workers reduces productivity is a false assumption based on a stereotype about older workers’ inevitable declining performance, as studies in South Korea have shown that older workers are not less productive than their younger colleagues. Differential treatment is discrimination under international human rights law when based on stereotypes.

In addition, Human Rights Watch found no evidence that the government is achieving its aim of hiring younger workers under the peak wage system or that it is monitoring how employers use the savings to this end. The system has, however, caused mental and financial harm. When older people are paid less because of their age, this not only impacts their dignity and wages but can also result in reduced severance pay and pension contributions.

The re-employment programs of local and state governments, under which older people who want to continue working must be re-employed, are legally guaranteed. However, the Ministry of Health and Welfare’s ‘Korea Labor Force Development Institute for the Aged’ reports that 71 percent of its placements were for volunteer roles. Post-retirement jobs are often more precarious, “non-regular” work, which is lower-paid and less secure than “regular” work on permanent, full-time contracts. Those re-employed earned less than they did before they retired, and the proportion of people earning below the national minimum wage rose from 10 percent before retirement to 30 percent three years after they retired from their main job. Finally, older people have limited employment opportunities, often in occupations that younger people do not want to do, such as care work and building security and management. This is occupational segregation, which is a form of systemic discrimination.

Together, these three age-based employment policies—forcing people to retire, reducing their wages because of their age, and moving them into lower-paid, more precarious work— reinforce negative, ageist attitudes about older people’s abilities and place in society in South Korea today.

The lack of adequate, universal social security increases the negative impact of these three policies. Unemployment benefits for those forced to retire are limited to a certain number of days, leaving a significant gap in coverage because they may have to wait up to five years before they are eligible for a pension. Monthly pension payments are below a living wage.

Relevant International Human Rights Law

Right to Nondiscrimination

The UN Human Rights Committee, which monitors the implementation of the International Covenant on Civil and Political Rights (ICCPR), which South Korea has ratified, has defined discrimination as any distinction, exclusion, restriction or preference which is based directly or indirectly on a number of identified grounds, and which has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise by all persons, on an equal footing, of all rights or freedoms. [286]

The UN Committee on Economic, Social and Cultural Rights (CESCR), which monitors the implementation of the International Covenant on Economic, Social and Cultural Rights (ICESCR), which South Korea has also ratified, has defined systemic discrimination as discrimination against groups that is:

pervasive and persistent and deeply entrenched in social behaviour and organization, often involving unchallenged or indirect discrimination. Such systemic discrimination can be understood as legal rules, policies, practices or predominant cultural attitudes in either the public or private sector which create relative disadvantages for some groups, and privileges for other groups.[287]

 

Age Discrimination

Among the core international human rights treaties, only the International Convention on the Protection of the Rights of All Migrant Workers and Members of their Families explicitly lists age as a prohibited ground for discrimination.[288] However, both the ICCPR and the ICESCR prohibit discrimination based on “other status,” which their respective monitoring committees have recognized includes age.[289] South Korea therefore has obligations to ensure no one is discriminated against because of their age, including older age.

Differential Treatment

Under international human rights law, states can only treat people differently because of their age or any other status if they can justify such “differential treatment” as reasonable and objective.[290] To be reasonable and objective, differential treatment must:

• Have a legitimate aim that is compatible with international human rights standards;[291]

• Be proportionate, meaning the harmful impact of the differential treatment must not outweigh benefits in relation to “the aim sought to be realized”;[292] and

• Be necessary,[293] meaning alternative, less harmful actions must be considered first.[294]

Justification for differential treatment cannot be based on stereotypes, which includes those based on age.[295]

Right to Work

ICESCR article 6, recognizing the right to work, enshrines “the right of everyone to the opportunity to gain his living by work which he freely chooses or accepts,” thus guaranteeing older people the right to work on an equal basis with others.[296] The CESCR has stated that all workers should be protected from age discrimination and stressed the need for states to implement measures to prevent age discrimination at work.[297] The CESCR has also called on states to eliminate “systemic discrimination and segregation in practice,” which includes in the workplace.[298] The ICESCR also guarantees the right to “just and favourable” conditions of work, including fair wages and safe working conditions.[299]

UN human rights bodies are increasingly calling for the abolition of mandatory retirement ages. In 1995, the CESCR called on states to expedite the trend of eliminating age discrimination, including mandatory retirement ages.[300] The Committee on the Elimination of Discrimination against Women, which monitors the implementation of the Convention on the Elimination of All Forms of Discrimination against Women, recommended in 2010 that states ensure older women are not forced into early retirement so that they can continue to work if they choose and accumulate pension entitlements on par with men.[301] Older women often have fewer financial resources than men of the same age due to life-long experiences of gender discrimination.[302]

More recently, in 2021, the UN independent expert on the enjoyment of all human rights by older persons, Claudia Mahler, said, “Anti-discrimination legislation must avoid exceptions, exemptions or justifications that mask ageist biases that limit the autonomy of older persons and their ability to participate in society on an equal basis with others.”[303] She urged governments to “review, amend or abolish existing laws, regulations, customs and practices that promote and constitute age discrimination, including mandatory retirement ages, and age-segregated laws and policies that deny older persons access to training and education, health or other services, which constitute derogations to the rule of age equality that are underpinned by ageist assumptions.”[304]

The International Labour Organization’s Older Workers Recommendation 1980 (No. 162) provides that older workers should “without discrimination by reason of their age, enjoy equality of opportunity and treatment with other workers,” including regarding access to employment.[305] The organization defines “decent work” as including equality of opportunity, a fair income, and security in the workplace.[306]

Right to Social Security

Older people have the right to social security under the ICESCR.[307] According to the CESCR, the social security system should cover everyone, and social security entitlements should be sufficient to realize everyone’s right to an adequate standard of living.[308]  The committee also stated that governments should set appropriate pension eligibility ages taking into account the nature of the occupation, particularly hazardous work and the “working ability of older persons.”[309]

Relatedly, the International Labour Organization’s Recommendation No. 202 on social protection floors states that governments should guarantee basic income for older people at a level that allows for a dignified life.[310] 
 

Acknowledgments

This report was researched and written by Bridget Sleap, senior researcher on the rights of older people. Audrey Gregg, senior associate in the Asia Division, provided additional research. The report was edited by a senior editor and reviewed by Elizabeth Kamundia, director of the Disability Rights Division. Holly Cartner, deputy program director, Babatunde Olugboji, former deputy program director, and Sari Bashi, former program director, provided programmatic review. James Ross, legal and policy director, provided legal review.

Lina Yoon, senior Koreas researcher, assisted with strategy, research, specialist review, and outreach. The following Human Rights Watch staff also specialist review: Matt McConnell, researcher, Lena Simet, senior researcher, Sylvain Aubry, deputy director, and Arvind Ganesan, director, Economic Justice and Rights Division; Brian Root, senior quantitative analyst, Technology, Rights and Investigations Division; and Suze Bergsten Park, officer, and Heather Barr, associate director, Women’s Rights Division.

Joya Fadel, senior associate in the Children’s Rights Division, and Federica Nucita, associate in the Disability Rights Division, gave production assistance and support. Layout and production were done by Travis Carr, publications manager, and Fitzroy Hepkins, senior administrative manager. Visuals for the report were designed and prepared by Laura Navarro Soler, Digital Division information designer. Zhi Ping produced the digital multimedia accompanying this report. Joo Hui Judy Kwon, deputy communication director, Asia, provided assistance with strategy and outreach. 

The Samuel Centre for Social Connectedness (SCSC) and AARP generously supported this work. We offer our deepest thanks to SCSC for their unwavering partnership and to AARP for their steadfast commitment.

Most importantly, Human Rights Watch thanks the older people who courageously shared their personal stories and experiences for this report.

Summary

I remember a time when it felt like everything in life stopped. There was no living or moving forward. I don’t remember a lot of the feelings. I just remember looking at walls.

—Prosper Niyonzima, incarcerated in immigration detention in 2012-2016, November 2022

In 2013, Prosper Niyonzima stopped communicating. According to an external audit of Canada’s Immigration and Refugee Board, he experienced “a complete mental collapse after 16 months in [immigration] detention, when his [permanent resident] application was refused.” He remained unresponsive for the next three years in detention, and during this period, the auditor observed, “his mental health situation is increasingly cited in [detention review] decisions as demonstrating that he would be a flight risk and a danger to the public if released. … Decisions repeatedly find that because he is non-verbal and virtually immobile, he cannot be trusted to report to [the Canada Border Services Agency].” Prosper could not participate in his legal proceedings, but his monthly hearings went ahead because the tribunal appointed a “designated representative” for him—a person empowered to make decisions and speak on his behalf. The designated representative never communicated with Prosper, but continued to represent him over the course of two years at detention review hearings. The auditor noted:

The presence of the [designated representative] seemed to give the [tribunal] the assurance that all was in order but meanwhile the detained person had never spoken to the [designated representative] and was being held in a catatonic state, off his medication and without proper treatment. The one time he was brought into the video room for a hearing, he seemed unaware of his surroundings and just put his head down on the table.

Every year, thousands of people are deprived of their liberty in Canada’s immigration detention system. Since 2016, of the 45,000 people placed in immigration detention, over 90 percent were held on grounds unrelated to public safety—most commonly because authorities believed they may not appear for an immigration proceeding. Many people experience severe consequences for their mental health, some with lasting effects that haunt them years after they are released from detention. Persons with disabilities, including mental health conditions, experience discrimination throughout the detention process. As in Prosper’s case, in addition to being deprived of their liberty in detention and placed in solitary confinement, persons with disabilities can be stripped of their legal capacity rights.

Based on research conducted between March and June 2024, including interviews with eleven lawyers—three of whom also worked as designated representatives—and a leading disability rights expert, as well as three people who were previously detained and had designated representatives, Human Rights Watch documented violations of legal capacity rights that persons with disabilities face in immigration detention. In the years since the 2018 external audit, there have been no federal legislative or regulatory changes to increase legal protections for persons with disabilities under the designated representative regime in Canada’s immigration detention system. The guideline of the Immigration and Refugee Board, which determines whether an individual should remain in detention, continues to maintain the authority of designated representatives to make substitute decisions on behalf of those being detained, in violation of international human rights standards.

When they operate in supportive roles, designated representatives can be invaluable help in navigating tribunal hearings. However, rather than strictly providing support for individuals in making decisions, designated representatives are legally empowered to make decisions on their behalf. Every lawyer interviewed in the course of conducting research for this report indicated that the impact of a designated representative on their case depends entirely on the specific individual selected.

This is largely because the scope of legal authority and role of designated representatives under Canada’s immigration system is sweeping, unclear, and contested. The immigration detention system is set out in such a way that, in some cases, designated representatives make substitute decisions on behalf of people in detention to avoid further rights violations, such as prolonged detention or refoulement. In other words, the immigration detention system places people in circumstances where the only way they could be released from detention is by leaving Canada and potentially subjecting themselves to more severe risks in their country of nationality. 

Concerns around the designated representative program in immigration detention are longstanding. The 2018 external audit commissioned by the chair of the Immigration and Refugee Board (IRB) found inconsistencies in the roles assigned to designated representatives at detention review hearings. In 2024, despite revisions, the IRB’s designated representative guide still fails to address severe gaps that pave the way for serious human rights violations.

As this report highlights, the inconsistency in the roles and effectiveness of designated representatives, coupled with the lack of support and clear limitations on designated representatives’ authority, continues to exacerbate the plight of persons with mental health conditions in immigration detention across Canada. Systemic flaws within this system—including lack of proper assessment in appointing designated representatives; the sweeping, unclear, and contested scope of designated representatives’ role; incompetence and inadequate training; and designated representatives’ power to make substitute decisions—underscore the urgent need for comprehensive reform.

Meaningful accommodations for persons with disabilities in immigration detention require a prioritization of their agency, choice, and informed consent as the bedrock of the right to health and other human rights. A human rights-based approach centers on a holistic response to the person’s needs—one that addresses the combined impact of social, physical, emotional, and environmental factors, including discrimination against persons with disabilities, structural racism, and other forms of exclusion and repression.

To align with international human rights standards, Canada’s federal government should ensure the legal capacity of all people in immigration detention, especially those with disabilities, is recognized and respected. This entails moving away from substitute decision-making to a model that prioritizes support and accommodation—a model that empowers people in immigration detention to make informed decisions about their lives.

Legislative and policy changes are imperative to address the structural deficiencies within the immigration detention system. Establishing clear guidelines for the appointment and responsibilities of designated representatives, providing adequate training and resources, and ensuring regular oversight and accountability can mitigate the risks of abuse and neglect.

Ultimately, Canada should abolish immigration detention. In the meantime, Canada should shift its approach to one that prioritizes safeguarding the rights and dignity of people in immigration detention.

 

Methodology

This research builds on analysis and findings documented in the 2021 joint report by Human Rights Watch and Amnesty International, “I Didn’t Feel Like a Human in There”: Immigration Detention in Canada and its Impact on Mental Health, as well as a 2022 joint private submission to the IRB by Human Rights Watch and the New Society Institute (formerly known as the Institute for Research and Development on Inclusion and Society in Canada or IRIS Institute), A Disability Rights Review of The “Designated Representative Guide”.

Human Rights Watch conducted research for this report between March and June 2024, interviewing 15 people. Researchers interviewed 11 lawyers from Montreal, Ottawa, Toronto, and Vancouver, with an average of 12 years of professional experience in this field (ranging from 4 to 22 years). Three of the lawyers interviewed have also worked as designated representatives. Researchers also interviewed Michael Bach, a leading disability rights expert on legal capacity, and three people who had designated representatives while in immigration detention, in addition to analyzing transcripts of sixteen detention review hearings pertaining to eight individuals who had designated representatives in immigration detention.

In June 2024, Human Rights Watch partnered with the New Society Institute to organize a roundtable on legal capacity in immigration detention, alongside advocates from the disability rights and migrant rights communities, which guided this report’s recommendations.

Access to individuals who had designated representatives while in immigration detention was a key challenge. Human Rights Watch relied on lawyers to identify people willing to be interviewed. However, many of these individuals were either deported, not in good enough health to speak with researchers or feared reprisal by the Canada Border Services Agency (CBSA), and some had passed away since their release from detention.

Researchers informed all interviewees of the purpose of the interview and the way in which the information would be used. No remuneration or incentives were promised or provided to interviewees. Interviews were conducted on a voluntary basis and lasted 60 to 90 minutes. All interviewees were asked to consent before the interview began and were told they could decline to answer questions and end the interview at any time. Interviews were conducted via video call, in English and with the help of interpreters, where necessary.

Human Rights Watch assigned pseudonyms and withheld the names of interviewees who had lived experience in immigration detention, with the exception of publicly reported cases. All pseudonyms appear in quotation marks on first reference. Identifying information and distinctive case details have also been withheld to respect confidentiality and protect from possible reprisals by CBSA or agents of persecution in individuals’ countries of origin. The names of lawyers and designated representatives interviewed for this research were also withheld to protect their clients from reprisals by CBSA. Pro bono lawyers and experts reviewed the report’s findings and recommendations.

Finally, researchers reviewed documents obtained through Access to Information Requests. Human Rights Watch shared the report’s findings with CBSA and the Immigration and Refugee Board in September 2024 and invited both government bodies to meet and respond to the findings.

 

Background

Immigration detention in Canada is an administrative form of detention under the Immigration and Refugee Protection Act (IRPA), administered by the Minister of Immigration, Refugees and Citizenship Canada, and enforced by the Minister of Public Safety.[11] Under the jurisdiction of the Minister of Public Safety, CBSA has sweeping police powers, including the powers of arrest (including without a warrant), detention, intelligence-gathering, and search and seizure.[12]

In the context of immigration detention, CBSA decides who is arrested and detained under IRPA, the grounds of detention, what evidence is brought against—and disclosed to—individuals in detention, and where people are detained. Broadly speaking, CBSA plays the roles of the police, prosecutor, jailer, and it also conducts surveillance in the community. Despite its sweeping powers and wide discretion over rights of frequently marginalized non-citizens in Canada, CBSA continues to be the only major law enforcement agency in Canada without independent civilian oversight.[13] This has contributed to serious and widespread human rights violations, including arbitrary deprivation of liberty, prolonged solitary confinement, discrimination on the basis of disability, child detention, and family separation, as well as disproportionately coercive measures against racialized individuals.[14]

Grounds of Detention

Since 2016, Canada placed approximately 45,000 people in immigration detention, including refugee claimants, children, persons with disabilities, pregnant persons, and permanent residents.[15] Since 2016, over 90 percent of people in detention were held on grounds unrelated to public safety: they were detained because authorities suspected they may not appear for an immigration or refugee status determination proceeding, because authorities were not satisfied with their identity documents, or for the purposes of an examination upon entering Canada.[16] For some people detained on public safety grounds, previous interactions with the criminal justice system may be the sole reason they are alleged to be a danger to the public.[17]

Detention Review Hearings

CBSA’s allegations against people in immigration detention are tested by an administrative tribunal—the Immigration Division of the IRB—that conducts regularly scheduled detention review hearings.[18] The tribunal is an independent quasi-judicial body, and it determines whether to order release or continue detention; it holds an initial hearing 48 hours following arrest, and if the person is not released the tribunal holds another hearing 7 days day later, and every 30 days thereafter, until the individual is released from detention or deported from the country.[19] Detention review hearings are adversarial proceedings involving two opposing parties: the person in detention, who may be—but is not required to be—represented by a lawyer, versus CBSA hearings officers—representing the minister of public safety.

Despite the regularly scheduled hearings, there is no legal limit on the duration of immigration detention.[20] Therefore, people are at risk of getting stuck in an indefinite cycle of detention review hearings, without end in sight. The longest instance of immigration detention in Canada lasted over 11 years, and it involved a man with an apparent mental health condition.[21] Since 2016, about 400 people have been placed in immigration detention for longer than a year.[22]

Site of Immigration Detention

The tribunal is limited in the scope of its review: it can order continued detention or release from detention.[23] The tribunal may consider—but not order changes to—the conditions and site of detention; CBSA has full authority to decide where to place immigration detainees.[24]

Although people in immigration detention are held on administrative grounds—that is, for non-criminal purposes—Canada subjects them to some of the most restrictive detention conditions in the country. People in immigration detention are regularly handcuffed and shackled during transport, and they are held with little to no contact with the outside world. The majority are held in one of three immigration holding centers, operated by CBSA with support from contracted guard services.[25] These facilities resemble and operate like medium security prisons, with significant restrictions on privacy and liberty, as well as constant surveillance, repeated searches, rigid rules and daily routines, and punitive measures.[26]

According to CBSA policy, people may also be incarcerated in a correctional facility “in regions where an [immigration holding center] does not exist,” or where CBSA “determines an individual cannot be effectively managed within an [immigration holding center].”[27] Furthermore, CBSA’s policy on “special considerations for vulnerable people” indicates that persons with mental health conditions may also be incarcerated in a correctional facility for access to “specialized care.”[28] A 2023 investigation found that an “alarming” number of immigration detainees in Ontario jails had pre-existing mental health conditions.[29] Previous research also found that racialized people, particularly Black people, appear to be incarcerated for longer periods in immigration detention and have often been detained in provincial jails, rather than immigration holding centers.[30]

Since 2000, at least 17 people died in immigration detention; most of them were incarcerated in a jail.[31] Evidence presented at the 2023 coroner’s inquest into the death of Abdurahman Hassan, a Black man with mental health conditions who was arbitrarily detained for three years while CBSA was unable to deport him to Somalia, revealed shocking details about ongoing conditions of incarceration in provincial jails, including prolonged use of solitary confinement.[32] The inquest jury’s first recommendation was to end the use of jails for immigration detention.[33]

CBSA has been relying on bilateral agreements and informal arrangements with provincial authorities to incarcerate people in provincial jails. However, between July 2022 and March 2024, all 10 of Canada’s provinces committed to severing these agreements and arrangements, and effectively end the use of provincial jails for immigration detention (as of the writing of this report, Quebec and Ontario have granted extensions to CBSA’s contracts).[34] In response, the federal government passed legislation under its 2024 Budget to expand immigration detention into federal prisons.[35]

Discrimination Against Persons with Disabilities

Immigration detention can have devastating effects on mental health. Many people in detention develop suicidal ideation as they lose hope, particularly those fleeing traumatic experiences and persecution in search of safety and protection in Canada. People in immigration detention can develop anxiety, depression, despair, psychological distress, psychosis, and catatonic withdrawal.

Individuals with disabilities, including intellectual and psychosocial disabilities, experience discrimination throughout the immigration detention process, in breach of international human rights law:

• People’s disabilities may play a role in authorities’ decision to detain them, as they are deemed ‘unreliable’ or ‘uncooperative’;

• People’s disabilities may lead to detention in correctional facilities to facilitate access to “specialized care,” as per CBSA policy;

• In some provincial jails, authorities have placed persons with mental health conditions or those who express suicidal ideation in solitary confinement; and

• Persons with disabilities also face significant barriers to release from immigration detention, including onerous release conditions in the community.[36]

As further detailed below, persons with disabilities in immigration detention may also be stripped of their legal capacity rights to make decisions about their legal matters, which may lead to continued deprivation of liberty, or even deportation.

 

Violations of Legal Capacity Rights

Persons with disabilities in immigration detention may face violations of their legal capacity rights—or the right to make one’s own decisions—and this has potentially life-altering, or even life-endangering, consequences.

Under the IRPA, in cases where a person in detention is “unable, in the opinion of the [tribunal], to appreciate the nature of the proceedings, the [tribunal] shall designate a person to represent the person.”[38] In practice, IRB adjudicators appoint “designated representatives” for people in detention who have a diagnosed or suspected mental health condition.[39] In such cases, the tribunal selects, appoints, and pays a designated representative, typically from a roster of contracted individuals, to “protect and advance the interests” of the person in detention.[40] Designated representatives must be at least 18 years old, they must “understand the nature of the proceedings,” and “be willing and able to act in the best interests” of the person in detention and not have a conflict of interests with them.[41]

Designated representatives can be invaluable support for the person detained. As one lawyer indicated, “anyone stuck in detention is limited in collecting evidence,” and designated representatives can act as “essentially an extension of the client on the outside who has more liberty to build a case for release.”[42] According to another lawyer, detention review hearings “can be so adversarial and traumatic for people in detention,” and designated representatives can act as a “buffer” to make the experience “less harsh.””[43]

However, rather than strictly providing support for individuals in making decisions, designated representatives are legally empowered to make decisions on their behalf. Every lawyer interviewed for this report said the impact of a designated representative on their cases depended entirely on the specific individual selected.[44] This is largely because the scope of legal authority and role of designated representatives is broad and inadequately defined.  

Lawyers interviewed for this report indicated that people in detention with a designated representative generally have a mental health condition and tend to be racialized,[45] detained for lengthy periods (of at least several months),[46] and incarcerated in provincial jails.[47]

The designated representative system attempts to solve a “genuine problem” pertaining to people in immigration detention with mental health conditions, as one lawyer noted:

It becomes difficult for the IRB to live up to its statutory mandate when someone is in the middle of a psychotic episode or experiencing extreme depression and is unable to participate in the hearing. The designated representative smooths over the problem. But the problem the IRB is solving is of its own making – that is, detaining people with mental health conditions in the first place.[48]

In May 2024, the federal government attempted to introduce legislative amendments to expand the scope of designated representatives beyond the realm of tribunal hearings, whereby CBSA would be able to appoint designated representatives in contexts where people may be isolated in immigration detention without access to legal advice, interpretation services, or other vital supports. This could have empowered designated representatives to waive people’s rights to make refugee claims or other legal applications preventing refoulement, with potentially life-endangering consequences. While this legislative amendment was subsequently withdrawn, the government has indicated its intention to re-introduce it in the future. 

Lack of Proper Assessment in Appointing Designated Representatives

The tribunal appoints designated representatives in the course of hearings following a determination that the individual in detention is ‘unable to appreciate the nature of the proceedings.’ The tribunal’s guideline on detention indicates that in determining whether a person fits this profile, adjudicators should consider:

• Whether the person can understand the reason for the hearing and can instruct counsel;

• The person’s statements and behavior at the hearing;

• Expert evidence on the person’s intellectual or physical faculties, age, or mental condition; and

• Whether the person previously had a designated representative.[49]

Lawyers described the tribunal’s assessment as “entirely informal and based on subjective views,”[50] “not at all standardized,”[51] “superficial and cursory,”[52] “extraordinarily variable,”[53] and completed in a matter of minutes.[54] One lawyer indicated that at the start of a hearing, the adjudicator “goes around the room and asks, ‘who thinks this person needs a designated representative?’” The same lawyer stated: “It makes me uncomfortable to participate in this system where I have to give an opinion on a client’s mental state and fitness to represent themselves, but I’m pushed to provide one in most cases out of a duty to their own legal interests.”[55]

Every lawyer and designated representative interviewed for this report confirmed that CBSA regularly makes recommendations and submissions to the tribunal regarding appointments of designated representatives. Human Rights Watch made an Access to Information and Privacy request to CBSA for “Records of the most recent policy manuals, guidelines, training materials used by the [CBSA] when assessing whether an individual in immigration detention needs a designated representative appointed because of mental health or capacity concerns.” In response, CBSA indicated that this record “does not exist.”[56]

It is unclear how the tribunal weighs the opinions of CBSA officers and lawyers, both of whom may have only had limited interactions with the person detained prior to the hearing.

In some cases, adjudicators examine the person detained by asking broad questions like, “Do you know where you are? Do you know why you are detained?”[57] One lawyer noted that, “These questions are not hard to answer, and sometimes people can respond but that doesn’t mean they don’t need support.”[58]

In other cases, there is “no official assessment,” and a decision is made based on medical information on file.[59] One lawyer indicated that sometimes “CBSA asks the tribunal to appoint a designated representative, and I don’t know what kind of communication they send to them because we are not looped in.”[60]

The tribunal generally appoints designated representatives from a regional roster, and individuals in detention do not have a choice as to who is appointed.[61] Once the tribunal appoints a designated representative, “it doesn’t matter whether a detainee is unhappy with them.”[62] The IRB guide does not set out a process for individuals in detention to fire or replace tribunal-appointed designated representatives.

Sweeping, Unclear and Contested Scope of Designated Representatives’ Role

According to the IRB’s guide, “the key role of the [designated representative] … is to protect and advance the interests of the subject of the proceedings they represent.”[63] The responsibilities set out in the guide include preparing the case with the person in detention, retaining and instructing counsel, making decisions or assisting the person in making decisions regarding IRB proceedings, and keeping them informed about their case.[64] Designated representatives are also required to assist in gathering evidence, potentially appear as a witness at hearings, and ensure the best possible case is presented.[65] They are required to attend all hearings, sign documents on behalf of the person in detention, and explain the outcomes and impacts of the hearings in consultation with counsel.[66]

The IRB’s guide notes that the role of the designated representative “may vary” depending on “the level of understanding” of the person in detention: individuals the tribunal deems ‘unable to appreciate the nature of the proceedings’ may have “some ability to participate in making decisions, depending on the type of decision that has to be made and the nature and severity of their impairment.”[67]

Lawyers indicated that designated representatives can be useful in several ways. One lawyer stated that designated representatives that “take the role seriously” tend to “visit the individual in detention multiple times between hearings, trying to ascertain what that individual wants to achieve.”[68] Designated representatives are also useful in providing guidance to deal with difficult situations, inquiring about and making applications for housing and community support programs in order to build an alternative to detention,

and assisting the person in detention to communicate their needs to the tribunal.[69] For example, one lawyer stated:

Some clients may express frustration and authorities may interpret this as “non-cooperative” or “hostile,” as opposed to getting to the substance – which is “I’m not doing well here.” The designated representative may explain why the person in detention is feeling restless. … The designated representative is useful in providing a shield and humanizing the person detained by providing context.[70]

Given the broad scope of their authority, designated representatives can also harm the rights of the person in detention, including by inserting themselves into discussions about legal applications, waiving rights to legal applications or withdrawing refugee claims, firing lawyers who make complaints about them, signing authorizations to obtain medical files or other records of the person in detention, and signing travel document applications.[71] One lawyer noted: “There are some designated representatives who actually stand in the way of lawyers doing their job.”[72]

In some cases, designated representatives may explicitly act against the will of the person in detention, in deference to CBSA. For example, several lawyers pointed to cases where designated representatives determined, in alignment with CBSA, that it is in the best interest of the person in detention to remain in detention.[73] The reasons cited ranged from cold winter conditions and lack of housing, to general safety in the community, and in some cases, designated representatives provided no reasoning, stating simply: “I’ve read the materials, and it’s clear that they are better off in detention.”[74] Where designated representatives are not in agreement with the individuals they represent in detention, “this is an impossible situation for counsel … An ethical quagmire.”[75]

One lawyer described cases prior to the IRB’s 2018 external audit, involving “truly atrocious examples of designated representatives collaborating with CBSA, or at least justifying CBSA’s inaction on files by assuring that everything was fine with the client.”[76] The same lawyer described the case of a man detained as a flight risk for five years in a provincial jail while his designated representative did not retain a lawyer, but signed off on documents allowing CBSA to publish the individual’s photos internationally to confirm his identity, and also tried to allow CBSA to take a DNA sample from the person against his will.[77] According to the same lawyer, prior to the 2018 external audit, the “abuse was extreme” but “nothing in the legislation has changed since then. … If this [abuse] could occur within the existing legislative parameters, there need to be more guardrails in law.”[78]

Given the adversarial nature of detention review hearings and CBSA’s enforcement mandate, several lawyers expressed significant concern about CBSA’s approach to designated representatives. As one lawyer told Human Rights Watch:

[CBSA] will use designated representatives to facilitate removal as soon as possible. … There is rush and zeal to remove people [from Canada], with no concern about the Charter [of Rights and Freedoms (Canada’s Constitution)]. The rush is at the expense of the person’s rights. It’s running over rights as quickly as possible, hoping no one will notice.[79]

One designated representative stated: “I’m supposed to assist clients in navigating procedures, but CBSA’s point of view is that I get in the way.”[80] Several lawyers indicated that CBSA has pressured designated representatives to waive detainees’ rights to legal applications designed to prevent nonrefoulement—assessing risks they may face upon removal from Canada.[81] In a 2022 case, CBSA contracted a designated representative to waive the right to such a legal application for a 22-year-old woman in detention who was diagnosed with depression and schizophrenia. According to the Federal Court:

Throughout her detention, Ms. Lee has been mute and her condition has worsened significantly. … Ms. Lee has not spoken for over three months … Yet, by contracting out a third-party to act on her behalf, [the government] stripped Ms. Lee of an opportunity to meaningfully participate in her proceedings. If anything, the requirements of procedural fairness are actually heightened in this case; to allow Ms. Lee to fully participate, her mental health conditions must be accommodated.[82]

As one lawyer noted: “Waiving rights to legal applications is beyond the broad authority granted to designated representatives, yet it happens nonetheless because of the IRB’s permissive guidelines and lack of legal clarity on the role.”[83]

The same lawyer described the challenges that arise in “grey areas,” where designated representatives give detention authorities “assurance that detainees’ rights are being protected without anyone being legally obliged to make a probing inquiry to ensure their rights are actually being protected.”[84] For example:

Where a client is truly not comprehending anything about proceedings – where a person is basically in a catatonic state, mute, and unable to communicate – in those cases, the designated representative gives instructions to counsel. This carries with it a host of potential abuses but can also assist counsel in advocating for release. If the designated representative previously ascertained the detainee’s goal, they could assist counsel with that goal even when the client can’t communicate. But if the designated representative doesn’t know the client’s wishes, and acts based on external stimuli, including CBSA pressure, that’s a problem.[85]

Aggravating the difficulties associated with the sweeping, unclear, and contested scope of designated representatives’ role is that their legal authority is not typically explained to immigration detainees. One lawyer observed that “usually [adjudicators] summarily explain the role of designated representatives, but they don’t explain their power – like waiving rights, withdrawing legal applications, or hiring and firing a lawyer.”[86] Another lawyer noted there is a risk that people in detention conflate designated representatives with lawyers: “In hearings, there are five voices on the phone, and it’s not clear who is who; depending on what the designated representative is telling [the person in detention], they might think this is legal advice from their lawyer.”[87]

Incompetence and Inadequate Training

The IRB’s designated representative “competency profile” sets out expected behaviors, personal qualities, and skills for designated representatives.[88] The core competencies include demonstrating integrity and respect, working effectively with clients, showing initiative, and “thinking things through: understanding a situation, issue, challenge.”[89]

However, lawyers interviewed for this report expressed significant concerns related to incompetence and inadequate training of designated representatives.

Several lawyers indicated that designated representatives who tend to play a passive role are unhelpful.[90] One lawyer indicated, “in the majority of cases, the IRB appoints the same designated representative, who is not very competent and mainly assists by being present during calls and interviews between the CBSA and a client, and by attempting to contact family members.”[91] Other lawyers noted, “there is no oversight or quality control,” and

“the biggest concern is where designated representatives don’t care, don’t take the role seriously, and don’t know the consequences of their decisions.”[92]

In some cases, designated representatives refuse to give instructions because they are “not trained or resourced to understand the people they are meant to represent.”[93] In particular, designated representatives do not receive training on working with people who have a mental health condition.[94] In some cases, designated representatives change in the course of a person’s detention, such that there is “no consistency, no opportunity to build trust with the detainee.”[95]

Most designated representatives also do not visit the people they represent in detention; instead, they are in contact over the phone or just review disclosure documents and “give lawyers their two cents before the hearing.”[96] One lawyer observed: “How can you instruct counsel and say you’re protecting [detainees’] best interests if you don’t even meet with them?”[97] 

While the IRB amended its guide to provide more details to designated representatives following the 2018 external audit, there remains “little direction as to designated representatives’ responsibility.”[98] Designated representatives are not provided training, funds, resources, or support to carry out their responsibilities.[99] As one lawyer observed: “All the things that the auditor raised [in 2018] continue to be present … That audit has been buried and there’s been backsliding.”[100]

Substitute Decision-Making

The most consequential power of designated representatives is their authority to make decisions on behalf of people in detention, in violation of their legal capacity rights. The IRB’s guide empowers designated representatives to “[s]peak for the [person in detention]” at hearings, and “make decisions on their behalf, as necessary.”[101] 

Although the IRB’s code of conduct requires designated representatives to “keep confidential all information gained in the course of providing services to the [person in detention],”[102] the tribunal may require designated representatives to share information at hearings regarding the detained person’s “behavior, medications, diagnosis, interactions,” as well as the designated representative’s impressions about the person’s “limitations, mental health and medical issues.”[103]

Lawyers confirmed that designated representatives routinely make substitute decisions on behalf of people in detention. One lawyer noted, “designated representatives are the voice of the [person in detention], replacing them.”[104] When a person in detention refuses to attend their hearing out of protest, the hearings proceed and “run roughshod over the [person in detention],” and the presence of the designated representatives “superficially makes things move forward.”[105]

In such cases, “the default, the expectation of the IRB is that the designated representative will ‘stand in’ for the detained person.”[106] According to one lawyer, in the course of a hearing, the IRB may (on its own initiative) also turn off the microphone of the person in detention if they speak out of turn, and “the Board is comfortable proceeding as per the designated representative’s suggestion, even as it pertains to decisions on behalf of the detained person.”[107]

Substitute decisions, particularly when made against the will of the person in detention, can also create barriers to legal representation. As one lawyer indicated:

There is no provision for counsel to overrule or challenge the direction of a designated representative where we have a reasonable belief that they are not acting in the client’s best interest, or is overruling client’s stated interest, in cases where the client may not understand technicalities but has expressed a clear interest. For example, where a client says they don’t want to be in detention, but the designated representative says they are safer in detention than in the community. The process is such that I can be dismissed as counsel if I argue for release. This is a statutory- or regulatory-appointee inserting themselves in the middle of a solicitor-client relationship and instructing counsel.[108]

Substitute Decision-Making Under International Law

Legal capacity is a fundamental human right enshrined in core United Nations human rights treaties.[109] Under the Convention on the Rights of People with Disabilities (CRPD), persons with disabilities have the right to recognition everywhere as persons before the law. The CRPD rejects the notion that persons with disabilities are unfit to exercise agency, and makes it clear that their will and preferences should always be respected.[110]

Importantly, mental capacity and legal capacity should not be conflated. Although a person’s mental capacity can vary depending on environmental or social factors, this does not, at any point, negate their legal capacity. The Committee on the Rights of Persons with Disabilities, an independent expert body created under the CRPD to oversee its implementation, has instead stressed the importance of ensuring that persons can exercise legal capacity by putting the right decision-making supports in place. [111] To this effect, Article 12(3) of the CRPD requires states party to “take appropriate measures” to provide persons with disabilities access to “support they may require in exercising their legal capacity,” including through “supported decision-making.”[112] Importantly, the CRPD Committee makes clear that “support in the exercise of legal capacity … should never amount to substitute decision-making.”[113]  

Canada ratified the CRPD but made a reservation and interpretative declaration to Article 12.[114] According to several legal scholars, given the CRPD’s mandate of “affirming maximum independence, equality, and participation of persons with disabilities in society,” Canada’s reservation on the legal capacity of persons with psychosocial disabilities “severely interferes with the Convention’s object and purpose.”[115]

The CRPD also obligates governments to take all appropriate steps to ensure reasonable and procedural accommodation is provided.[116] This includes situations in which persons with disabilities have been deprived of their liberty in a prison or other legally mandated detention facility.[117]

In order to protect the legal capacity rights of people in immigration detention, the role of designated representatives should be transformed to ensure it is a mechanism exclusively for supported decision-making.[118] Detention review hearings in which persons with disabilities cannot fully participate should not proceed by simply appointing a designated representative to ‘stand in’ for them and make substitute decisions on their behalf.[119] Such proceedings infringe on detainees’ rights to due process and legal capacity. Canada’s failure to provide procedural accommodations to immigration detainees with disabilities violates the CRPD.[120]

Immigration Detention Places Rights in Tension

In some circumstances, because of the framework of the immigration detention system, substitute decisions are necessary to safeguard other rights of detained persons, such as liberty rights or nonrefoulement.[121]

One lawyer described a 2021 case of a man with Syrian and Russian nationalities, who had a mental health condition.[122] He was detained as a flight risk and went on a hunger strike in protest of his detention conditions.[123] He was placed in solitary confinement, where he further deteriorated. According to his lawyer: “He was vomiting blood and was close to dying, so he was taken to the hospital, where he was forced to eat.” Ultimately, after eight months of detention, and with no prospect of CBSA consenting to his release, the designated representative overrode the man’s decision to remain in the country, and he was deported to Russia. “We took a decision against his will in order to save his life,” his lawyer said.

In some cases, the immigration detention system places people in circumstances where the only way they could be released from detention is by potentially subjecting themselves to more severe risks. One lawyer described a 2018 case where a man who was diagnosed with a mental health condition decided to return to Afghanistan because this was the only way for him to get out of detention.[124] Although he had an ongoing refugee claim, CBSA refused to consent to his release while the claim was processed. [125] According to the man’s lawyer, although it was in his best interest to remain in Canada, “he decided, ‘I’m tired of being in jail here, I just want to go back to Afghanistan.’”[126] The man’s designated representative insisted it was not in his best interests to return, but ultimately respected his decision to return to Afghanistan: “His clear, consistent intention over the course of weeks was to withdraw his application and return [to Afghanistan].”[127]

Substitute decision-making may prevent irreparable harm in these cases but violate other rights. As one lawyer observed:

We find it to be an almost impossible situation: recognizing the inherent right of everybody to make their own decisions, but also recognizing our ethical duty not to participate or allow CBSA to proceed with an action that we think is going to cause serious harm that the person [in detention] appears not to understand. And the designated representative is just not an adequate substitute. … The priority should be to release the person from the coercive context.[128]

Even where legal capacity rights are not at risk, under international human rights standards, immigration detention may only occur if it is reasonable, necessary, and proportionate to achieve a legitimate state interest, taking into account whether there are less restrictive means of achieving the same end.[129] As noted by the UN Working Group on Arbitrary Detention: “Immigration detention should gradually be abolished.”[130] 

Article 14(1) of the CRPD states that “the existence of a disability shall in no case justify a deprivation of liberty.”[131] The UN Human Rights Committee has also stated that decisions regarding the detention of migrants must take into account its effect on mental health and make available adequate community-based services for persons with psychosocial disabilities.[132] Immigration detention disproportionately impacts persons with disabilities, and has been found to exacerbate mental health conditions.[133] The UN Working Group on Arbitrary Detention has concluded that immigration detention of persons with disabilities “must not take place.”[134]

In accordance with this guidance, Canada should move away from immigration detention for persons with disabilities and eventually all people. Meanwhile, in cases where the lack of effective support for decision-making—and the likely exacerbation of mental health conditions due to detention itself—renders detainees with mental health conditions unable to exercise their legal capacity and access hearings with due process, Canada should release them from detention and provide them with the support they require outside of detention.

 

Recommendations

Overarching Recommendation to Canada’s Federal Government

• Gradually abolish immigration detention, starting with the immediate end to the use of correctional facilities for immigration detention.

Key Steps Toward Achieving the Overarching Recommendations

To Public Safety Canada, CBSA, IRB, and Immigration, Refugees and Citizenship Canada:

• Expand localized programs of community-based alternatives to detention that provide support rather than surveillance and are operated by local nonprofit organizations independently from CBSA. Support services should take a holistic view of a person’s requirements, including housing, healthcare, mental health services, education, employment, children’s needs, and legal representation.

• Maintain effective, supportive, voluntary, and culturally-appropriate mental health services in the community that are available and accessible to citizens and non-citizens alike. Consider reallocating funding from CBSA’s budget to support community-based health services and alternatives to detention.

• In line with the guidance of the UN Working Group on Arbitrary Detention, stop holding persons with physical or psychosocial disabilities in immigration detention. Persons’ disabilities should also be taken into account when determining the legality, necessity, and proportionality of any non-custodial immigration enforcement measure.

As long as Canada continues to engage in immigration detention of persons with disabilities:

• Ensure all designated representatives and detention authorities, including IRB personnel, CBSA officers, immigration holding center personnel, and provincial jail authorities, receive regular, effective, and ongoing training on how to support and interact with persons with disabilities, which should be developed in consultation with persons with disabilities.

• Detention authorities should contract disability support organizations to recruit and offer ongoing guidance to designated representatives, the IRB, and CBSA. Immigration authorities and designated representatives should be resourced to connect people in immigration detention, as well as people at risk of being detained, with rights-respecting community-based alternatives to detention.

• Ensure the right to legal capacity and due process of all persons with disabilities in immigration detention. Specifically:

• Clarify and limit the roles and responsibilities of designated representatives to facilitating supportive decision-making. Strictly prevent designated representatives from engaging in substitute decision-making that infringes on legal capacity;

• Ensure people in immigration detention can select, remove, and replace their designated representative;

• Order release from immigration detention and ensure effective support for decision-making outside of detention in cases where the support for decision-making in detention is not adequate to ensure persons with disabilities can access hearings with due process and exercise their legal capacity through the support of a designated representative (e.g., where the representative is not able to communicate with or understand the person’s will and preferences sufficiently to be guided by them); and

• Appoint an ombudsperson to provide oversight for designated representatives, and to ensure the will and preferences of people in immigration detention are respected in supported decision-making processes, and that their rights to health, due process, and legal capacity are protected.

To the Prime Minister and Canada’s Cabinet:

• Withdraw Canada’s declaration and reservation to Article 12 of the CRPD.

• Conduct a national independent review of the immigration detention system focusing on systemic racism and discrimination against persons with disabilities.

• Establish an independent body responsible for overseeing and investigating CBSA, with which immigration detainees can lodge complaints of abuse, neglect, or other human rights concerns, to hold the government accountable. This oversight body should have the authority to order meaningful remedies and penalties and initiate its own reviews and investigations, including unannounced inspections, and not be driven solely by complaints. The oversight body should also allow for third parties, such as nongovernmental organizations, to make complaints regarding matters relating to individual cases, as well as CBSA policies and practices.

• Refrain from expanding the designated representative regime beyond the scope of IRB proceedings, unless the above safeguards are instituted.

 

Acknowledgments

This report was researched and written by Hanna Gros, consultant in the Disability Rights Division of Human Rights Watch, with significant research and writing support from Samer Muscati, associate director in the Disability Rights Division of Human Rights Watch.

The report was edited at Human Rights Watch by Carlos Ríos Espinosa, associate director of the Disability Rights Division; Farida Deif, Canada director; Bill Frelick, director of the Refugee and Migrant Rights Division. Babatunde Olugboji, deputy program director of Human Rights Watch, provided programmatic review, and Maria McFarland Sánchez-Moreno, senior legal advisor at Human Rights Watch, provided legal review.

We are grateful to the expert reviewers who provided invaluable guidance and feedback. A special thank you to Michael Bach, Doris Rajan and others at the New Society Institute for their expertise and support, including organizing a roundtable on legal capacity in immigration detention, alongside advocates from the disability rights and migrant rights communities.

Alysha Orbach, US Program associate, and Joya Fadel, Children’s Rights senior associate, provided editing and production assistance. The report was prepared for publication by Travis Carr, publications officer; Fitzroy Hepkins, senior administrative manager; and Jose Martinez, administrative officer.

Estelle Bloom, lead consultant of Making It Clear, created the easy-to-read version of this report.

The report was translated from English to French by Zoé Deback. The French version of the report was edited for Human Rights Watch by Peter Huvos, web editor.

Human Rights Watch would also like to thank the lawyers and designated representatives who shared their insights and analyses with us or otherwise provided assistance.

A special thank you to the Samuel Family Foundation and Kathryn Cottingham for the financial support that made this research and report possible.

Most importantly, Human Rights Watch thanks the people with lived experience in immigration detention, who shared with us their insights, memories, and perspectives. We are grateful for your trust and courage.

Summary

From the day the war broke out, they destroyed what was inside us. They demolished my house and my room, which held all my memories. They took everything that helped me to live, like my devices, my boot, and my wheelchair. How can I go back to how I was without all this?

— Ghazal, a 14-year-old girl with cerebral palsy in Gaza

Following the Israeli military order to evacuate Beit Hanoun in northern Gaza, 13-year-old Malek Al Kafarna fled south with his parents, 7-year-old brother, and 14-year-old sister. They first sought refuge in Jabalia refugee camp, then moved to Al-Shati refugee camp before eventually settling in Deir al-Balah, hoping for safety. However, on October 24, 2023, when Malek and his mother were at the central market in Nuseirat refugee camp, waiting for food coupons, an Israeli strike hit the market, blowing off Malek’s left arm. Malek waited for hours before receiving medical assistance due to an overwhelmed healthcare system, staff shortages, and lack of medical supplies.

Malek is just one of thousands of children in Gaza who have acquired a disability from injuries caused by explosive weapons since October 7, 2023. Before then, 98,000 children in Gaza between the ages of 2 and 17 already had a disability and were now encountering enormous difficulties to survive. Ghazal, a 14-year-old with cerebral palsy, had to flee from the north to the south of Gaza without her assistive devices, which she had lost in an attack that struck her family’s home. As of early May, Ghazal was displaced in a tent in Rafah, without proper and dignified access to water, food, and sanitation, or access to school and the physiotherapy she received prior to October 7. The challenges faced by Ghazal highlight some of the unique risks faced by children with disabilities in Gaza.

The actions by the Israeli military and the government’s blockade of Gaza, including severe restrictions on humanitarian aid, have inflicted profound trauma and suffering on Palestinian children, which has had a disproportionate impact on children with disabilities. As of September 18, ongoing Israeli strikes and ground operations have killed more than 41,000 Palestinians, including more than 16,750 children according to the Ministry of Health in Gaza. Previously, the Palestinian Civil Defense estimated more than 10,000 adults and children were missing under the rubble of destroyed buildings in Gaza. Attacks have also caused serious injuries that have led to permanent disabilities and lifelong scarring for Palestinian children. As of September 18, the Health Ministry in Gaza reported that more than 95,500 people had been injured. The World Health Organization estimates that more than 22,500 people of those injured as of July 23, 2024, have sustained “life-changing injuries,” requiring rehabilitation services “now and for years to come”. UNICEF reported that thousands of children have lost one or two limbs within the first three months of the hostilities.  

Israel launched its military operations in Gaza following the Hamas-led Palestinian armed groups’ attacks in southern Israel on October 7, 2023, in which, according to Agence France-Presse (AFP), more than 800 civilians, including 36 children were killed. The Palestinian armed groups took 251 people as hostages, including 40 children, according to AFP. Israeli airstrikes and ground attacks on Gaza, and resistance by Palestinian armed groups, including rocket strikes on Israel, have continued since then. In June, the UN Secretary-General Antonio Guterres issued his annual report on children and armed conflict – his “list of shame” – and for the first time included the Israeli armed forces to the list of parties to armed conflicts committing “grave violations” against children. The report found Israeli forces responsible for 5,698 grave violations, including the killing and maiming of children and attacks on schools and hospitals during the 2023 calendar year. Palestinian armed groups also committed 137 violations against children.

A million children are among the 1.9 million Palestinians who have been displaced from their homes and communities since October 7, and at least 19,000 children became orphans or otherwise ended up without a caregiver. Israeli government restrictions on humanitarian aid have deprived children of access to essential resources, like food, water, and medical care, resulting in a sharp rise in the number of children suffering from acute malnutrition. As of September 16, 38 Palestinians, the majority being children, have died of malnutrition and dehydration in hospitals, according to Gaza’s Health Ministry. In June, UNICEF reported that almost 3,000 malnourished children were at risk of death.

While the Israeli government’s longstanding blockade and more recent attacks have impacted all Palestinians, children with disabilities—whether acquired prior to October 7 or since—encounter particular risks due to both their age and disability. They face additional challenges in accessing essential food, water, sanitation, medical treatment, medicines, assistive devices, and services, all of which are extremely hard, if not impossible, to obtain due to frequent Israeli strikes and major ground operations and restrictions on the entry of humanitarian aid. Children with disabilities are also at heightened risk of death or injury from additional challenges they face when forced to flee attacks. People with disabilities are also at greater risk when Israeli forces do not provide civilians effective and accessible advance warning of attacks and adequate evacuation procedures.

The Israeli military has been using starvation of Palestinian civilians as a method of war in Gaza. This tactic has placed children with disabilities who require a specific diet at a particularly high risk of malnutrition and starvation. Israeli restrictions on water and destruction of Gaza’s water infrastructure have left the population without sufficient access to safe water or sanitation, which have further affected children with disabilities.

Israel’s arbitrary denial of and restrictions on humanitarian assistance have been exacerbated by Israeli forces’ attacks on hospitals, harming children requiring urgent medical assistance—including the loss of limbs in attacks—or ongoing care to meet the needs of children with disabilities or chronic health conditions. Injured children in need of immediate medical attention have endured inordinately long waiting times and undergone invasive surgeries without anesthesia. Children with disabilities and chronic health conditions have endured months without access to essential and other medicines. The uncle and caregiver of Muhammad, a 5-year-old boy with cerebral palsy and developmental disabilities, said his nephew does not have access to anti-convulsant and anti-epileptic medication that he used to take twice a day prior to October 7 due to unavailability or high costs. “I am so scared he will have muscle spasms,” his uncle said. “I would buy it regardless of the cost if I could just find it.”

The International Court of Justice, in its July 19, 2024 Advisory Opinion on the Occupied Palestinian Territory, held that the law of occupation still applies to Israel’s conduct in Gaza. As an occupying power that maintains significant control over many aspects of life in Gaza, Israel has obligations under international humanitarian law to ensure the welfare of the population there, specifically to provide for the food and health care of the population. Israel also has obligations under international human rights law including ensuring the population’s rights to food, water, health, and housing, among other rights, which are applicable during armed conflict as well as in peacetime. Israel’s continuing 17-year blockade of Gaza as well as severe restrictions on humanitarian assistance has resulted in violations of these rights.

Additionally, while UNICEF considers all children in Gaza to have experienced psychological harms from the violence and deprivation they have endured or witnessed, the mental health of children with disabilities has been uniquely impacted because of the challenges they face and their consequent worries and fears. “Mama, it’s over, leave me alone and run away,” Ghazal said, begging her parents, who had to carry her during their escape from northern to southern Gaza, to leave her and save themselves. Her mental health was further affected by the loss of her assistive devices that would have allowed her to take care of herself, and later, by her fear of a potential attack on Rafah and wondering how she would survive. Lack of access to schools, which have not been able to operate in Gaza for almost a year and many of which have been destroyed, exacerbates the mental health impact.  

The Israeli military’s use of explosive weapons with wide-area effects, such as aerial bombs and missiles, in densely populated areas raises significant concerns over Israel’s compliance with international humanitarian law, and has resulted in deaths, injuries and permanent disabilities among children. The nongovernmental organization Humanity & Inclusion reported in December that the main types of injuries sustained from the use of explosive weapons in Gaza are traumatic amputations—where a body part is partly or fully severed or lost during injury—of one or more limbs, fractures, peripheral nerve injuries, spinal cord injuries, traumatic brain injuries, and burns. Overcrowding and lack of medical equipment, supplies, and medicines has meant that beleaguered hospitals have been unable to prevent avoidable amputations or provide rehabilitation.

Both international humanitarian law and international human rights law provide for the protection of people with disabilities, including children, during armed conflict. International humanitarian law obligates warring parties to provide effective advance warning of attacks unless circumstances do not permit. Meeting this obligation generally requires that the intended recipient receives the warning and is able to act on it – such critical, life-saving information needs to be accessible to people with disabilities. International humanitarian law also recognizes the need to proactively identify people with disabilities in the distribution of humanitarian aid when humanitarian agencies assist warring parties to meet their obligations.

The UN Convention on the Rights of Persons with Disabilities (CRPD), ratified by Israel in 2012, obligates states parties to take “all necessary measures,” in accordance with international humanitarian law and international human rights law, to ensure the protection and safety of people with disabilities in situations of armed conflict.

In South Africa’s case alleging that Israel is violating the Genocide Convention, the International Court of Justice issued provisional measures on January 26, March 28, and May 24, 2024. In particular, the court ordered Israel to enable the provision of basic services and humanitarian assistance into Gaza, prevent genocide against Palestinians in Gaza, and ensure unimpeded access for fact-finding and investigative bodies, among other binding measures.

All parties to the conflict should comply with their obligations under international humanitarian law. Specifically with respect to people with disabilities, including children, in Gaza, Israel should refrain from using explosive weapons with wide area effects in populated areas; end the blockade and restrictions on humanitarian aid to Gaza and ensure the provision of adequate humanitarian aid in and throughout Gaza; cease unlawful attacks on hospitals, humanitarian convoys and staff; and adopt measures with respect to effective advance warnings of attacks and evacuation orders that take into effect the impact on people with disabilities.

Countries supporting Israel, notably the United States, United Kingdom, Canada, and European Union member countries, should condemn laws-of-war violations by all parties. They should specifically raise the harm to children during the conflict, including Israel’s use of explosive weapons in populated areas, its Gaza blockade and restrictions on humanitarian aid, and unlawful attacks on hospitals. In particular, concerned countries should press Israel to address the needs of Palestinian children with disabilities.

States should suspend military assistance and arms transfers to Israel so long as Israeli forces are committing abuses amounting to war crimes with impunity. States providing military and security assistance to Israel risk complicity in war crimes and grave human rights violations. All governments should also use their leverage to press Israel to comply with the ICJ’s orders to prevent any acts of genocide and further mass atrocities, including by ensuring the unhindered provision of humanitarian aid. 

 

Methodology

Between December 17, 2023 and May 22, 2024, Human Rights Watch interviewed 20 family members of children with disabilities, a 14-year-old with a disability, five medical doctors, and eight representatives of humanitarian agencies, including the United Nations Children’s Fund (UNICEF), the UN Relief and Works Agency for Palestine Refugees in the Near East (UNRWA), the Palestine Children’s Relief Fund (PCRF), Medical Aid for Palestine (MAP), and the International Rescue Committee. Human Rights Watch remained in contact with 6 of the 20 family members until September 16, 2024, to include their most up-to-date information in the report.

All of the families we interviewed were displaced from their homes in Gaza. Five families had been evacuated—four for medical treatment—and were in other countries at the time of the interview; the rest were still in Gaza. All but two interviews with the families were conducted by phone in English with Arabic interpretation. Due to telecommunication and internet disruptions, some interviews took several days to complete, and a few were conducted through voice messages. One interview was conducted in person in Bosnian in Sarajevo, Bosnia and Herzegovina. Some interviewees asked Human Rights Watch not to use their full names for their protection, which we respected.

Human Rights Watch reviewed medical records of several children with disabilities included in this report with the permission of their families. Human Rights Watch also reviewed over 50 videos and photographs showing the aftermath of attacks shared directly with researchers or collected from social media platforms, including Facebook, Telegram, YouTube, and X (formerly Twitter). By matching landmarks in the videos with satellite imagery, street-level photographs, or other visual material, and comparing information with open-source reports by other organizations, Human Rights Watch was able to corroborate some, but not all, of the witness accounts about attacks.

To protect the privacy and dignity of survivors and victims, Human Rights Watch has not included links to graphic videos and photographs available online. The videos and photographs used in the analysis of this report have been preserved by Human Rights Watch in case they are removed from online sources.

Human Rights Watch could not visit Gaza because Israeli authorities have blocked entry into Gaza and its crossings since October 7, 2023. Israel has repeatedly denied many Human Rights Watch requests to enter Gaza over the past 17 years.

On April 26, 2024, Human Rights Watch provided the Israeli military and Ministry of Defense with a summary of our findings and sought responses to specific questions. The letters are included as an annex. Neither had replied by time of publication.

This report is one in a series of in-depth research products that Human Rights Watch is publishing on the current hostilities between Israeli forces and Palestinian armed groups in Gaza.

 

Background

Israel’s Closure of Gaza

The Gaza Strip has been under Israeli occupation since June 1967.^[1] Despite having no troops permanently stationed in Gaza since 2005, in light of the continuing controls Israel has exercised over Gaza’s inhabitants, Israel remains the occupying power under international humanitarian law (IHL), also called the laws of war.^[2] Israel has maintained overarching control over the movement of people and goods, territorial waters, airspace, population registry, and infrastructure.

Since 2007, Israel has imposed a closure of Gaza and banned, with narrow exceptions, Palestinians from leaving through Erez, the passenger crossing from Gaza into Israel, through which they can reach the occupied West Bank and travel abroad via Jordan.[3] Israeli authorities have also restricted the entry of goods via a second crossing point, the Kerem Shalom crossing on the Egypt border.[4] The Israeli government has instituted a formal “policy of separation” between Gaza and the West Bank, despite international consensus that these two parts of the Occupied Palestinian Territory form a “single territorial unit.”[5] Israeli authorities have also denied Palestinian refugees in Gaza—people who were expelled or fled in 1948 from what is now Israel and their descendants, constituting more than 80 percent of Gaza’s population—from returning to the areas they are from.[6]

Human Rights Watch has found that under international humanitarian law during an occupation, Israel’s prolonged closure of Gaza is a form of collective punishment.[7] In addition, Israeli authorities have been committing crimes against humanity of apartheid and persecution against Palestinians, including in Gaza.[8]

Prior Hostilities and Israeli Military Actions in Gaza since October 7, 2023

Over the past 17 years, Israel and Palestinian armed groups in the Gaza Strip have engaged in several rounds of hostilities, including in 2008-2009, 2012, 2014, 2018, 2019, and 2021.[9] Human Rights Watch and others have documented numerous grave violations of the laws of war, many amounting to war crimes, committed by Israeli forces and Palestinian armed groups.[10] There has largely been impunity for abuses by both sides.[11]

On October 7, 2023, Hamas-led Palestinian armed groups carried out an assault on military targets and civilians in Israel. Agence France-Presse said it assessed that 815 civilians were killed during and after the attack, including 36 children—at least two of whom had a disability—and the taking of 251 hostages, including 40 children.[12] Human Rights Watch concluded that during the attack, Palestinian armed groups committed war crimes and crimes against humanity of murder and unlawful imprisonment.[13] Israeli forces responded with almost a year-long military assault on Gaza that has resulted in the killing of more than 41,000 Palestinians as of mid-September 2024, according to the Ministry of Health in Gaza, including more than 16,750 children, the UN Committee on the Rights of the Child reported.[14]

Thousands more children are reported missing and may be trapped under the rubble of destroyed buildings.[15] More than 95,500 people have reportedly been injured, according to the Gaza Ministry of Health.[16] The Palestinian NGOs Network (PNGO) reported on June 29 that about 10,000 people, half of them children, are estimated to have acquired a disability since October 2023.[17] The World Health Organization estimates that more than 22,500 people of those injured as of July 23, 2024, have sustained “life-changing injuries,” requiring rehabilitation services “now and for years to come”.[18] Save the Children reported in January that more than 10 children were losing one or both legs per day.[19]  

Since the October 7 attacks, Israeli authorities cut off essential services, including water and electricity, to Gaza and blocked the entry of all but a trickle of fuel and critical humanitarian aid, acts of collective punishment that amount to war crimes.[20] Israeli authorities have also been using starvation of civilians as a method of warfare in Gaza, which constitutes a war crime.[21]

Israeli forces continue to conduct numerous airstrikes and large-scale ground operations in the hostilities in Gaza with Palestinian armed groups. Many of these attacks, including attacks that were unlawfully indiscriminate, have hit residential buildings and hospitals, reducing large parts of neighborhoods to rubble.[22] As of mid-March, Israeli authorities had ordered the evacuation of everyone from northern Gaza, which displaced 1.7 million people, about 75 percent of Gaza’s population. More evacuations have occurred since then in southern Gaza as well. According to the United Nations Office for the Coordination of Humanitarian Affairs (OCHA), as of August 7, 1.9 million people are internally displaced, amounting to 90 percent of Gaza’s population.[23]

On January 26, the International Court of Justice issued binding “provisional measures” that require Israel to prevent genocide against Palestinians in Gaza, enable the provision of basic services and humanitarian assistance, and prevent and punish incitement to commit genocide, among other measures. The court ordered Israel to take all measures in its power to prevent the commission of any acts prohibited under the Genocide Convention in relation to Palestinians in Gaza, including killing members of the group, causing serious bodily or mental health harm to members of the group, and deliberately inflicting on the group conditions of life calculated to bring about the group’s physical destruction in whole or in part.[24] Human Rights Watch found that Israeli authorities were not complying with the court’s orders by obstructing the entry of lifesaving aid and services into Gaza.[25] On March 28, the court found that its January 26 order did not “fully address the consequences arising from the changes in the situation,” and issued new provisional measures ordering Israel to ensure the “unhindered provision” of humanitarian assistance. On May 24, the court issued a third order, ordering Israel to ensure humanitarian assistance among other provisional measures.[26]

The impact of Israel’s military actions on children in Gaza

Israel’s military offensive in Gaza has taken a tremendous toll on the civilian population, particularly children, who make up almost half of the population.[27] The government’s actions have inflicted profound trauma and suffering upon Palestinian children, including those with disabilities, who were 15 percent of children in Gaza, according to the UN.[28] Although there are no official numbers of how many children with disabilities are among the more than 16,750 children who, according to data from the Gaza Ministry of Health cited by the UN, have been killed since the start of Israel’s military operations in Gaza, media outlets have reported on the killings of both children who had a disability prior to October 7 and children who have acquired a disability since.[29] Israeli military strikes and ground attacks have also caused serious injuries that have led to permanent disabilities and lifelong scarring for Palestinian children. Referring to child casualties, the UN secretary-general Antonio Guterres said that Gaza is becoming a “graveyard for children” where “hundreds of girls and boys are reportedly being killed or injured every day.”[30]

In June, Guterres issued his annual report on children and armed conflict—his “list of shame”—and for the first time included the Israeli armed forces to the list of parties to armed conflicts committing “grave violations” against children.[31] The report found Israeli forces responsible for 5,698 grave violations, including the killing and maiming of children and attacks on schools and hospitals during the 2023 calendar year.[32] Palestinian armed groups also committed 137 violations against children. The secretary-general noted reported but unverified grave violations against 3,900 Israeli children and 19,887 Palestinian children during 2023.

Guterres said, “I am appalled by the dramatic increase and unprecedented scale and intensity of grave violations against children in the Gaza Strip, Israel and the occupied West Bank, including East Jerusalem, despite my repeated calls for parties to implement measures to end grave violations.” He “urge[d] all parties to the conflict to immediately end and prevent grave violations against children … and to adopt immediately clear, time-bound commitments to end and prevent grave violations against children, as proposed by the United Nations, and to comply with international humanitarian law and international human rights law.”[33]

Save the Children reported in June that up to 21,000 children were estimated to be missing, including many dead under rubble, detained, buried in unmarked graves, or separated from their families.[34] The UN Committee on the Rights of the Child reported in mid-September the “outrageously high number of children in Gaza who continue to be killed, maimed, injured, missing, displaced, orphaned and subjected to famine, malnutrition and disease,“ citing Israel‘s “attacks on Gaza using explosive weapons with wide-area effects in densely populated areas and its denial of humanitarian access,“ which has displaced at least 1 million children and pushed 3,500 children to risk death from malnutrition.[35]

While the Israeli government has repeatedly stated that its war aims are to destroy Hamas and to free the hostages taken during the Hamas-led attacks on Israel on October 7, several statements by Israeli officials, indicate an intent to inflict harm on the civilian population, including children. On October 28, 2023, prior to undertaking a ground attack on Gaza, the Israeli prime minister invoked the biblical story of the total destruction of Amalek by the Israelites, stating: “you must remember what Amalek has done to you, says our Holy Bible. And we do remember.”[36] He referred again to Amalek in a letter sent on November 3, 2023, to Israeli soldiers and officers.[37] The relevant biblical passage is: “Now go, attack Amalek, and proscribe all that belongs to him. Spare no one, but kill alike men and women, infants and sucklings, oxen and sheep, camels and asses.”

Similarly, during an October 12 press conference and referring to Palestinians in Gaza, where over one million of the population are children, President Isaac Herzog stated: “It’s an entire nation out there that is responsible. It’s not true this rhetoric about civilians not aware not involved. It’s absolutely not true. … and we will fight until we break their backbone.”[38]

In addition to the prime minister, the only other remaining member of the emergency government with decision-making power is the Israeli Minister of Defense, Yoav Gallant, who stated that Israel was “imposing a complete siege on Gaza. No electricity, no food, no water, no fuel. Everything is closed. We are fighting human animals and we are acting accordingly.”[39] He also stated that: “Gaza won’t return to what it was before. We will eliminate everything. If it doesn’t take one day, it will take a week. It will take weeks or even months, we will reach all places.”[40] He further announced that Israel was moving to “a full-scale response” to the Hamas-led attack and that he had “removed every restriction” on Israeli forces. "Hamas wanted to see a change in Gaza – the reality is Gaza will make a 180. They will regret [their actions]," Gallant said.[41]

 

Serious Injuries to Children from Israeli Military Use of Explosive Weapons

Serious Injuries to Children

Children have unique vulnerabilities to the direct effects of explosive weapons.[42] For instance, they are more susceptible to burns and are more likely to die from blast injuries than adults.[43] UNICEF has said that the physical injuries caused by explosive weapons also have severe psychological, educational, and social impacts; and result in economic and environmental degradation, “severely affecting children’s access to essential services, like healthcare, education and water.”[44]

Humanity & Inclusion, an international organization focused on providing support to people with disabilities, including in Gaza, reported in December that the main types of injuries sustained from the use of explosive weapons in Gaza were traumatic amputations (where a body part is partly or fully severed or lost during injury) of one or more limbs, fractures, peripheral nerve injuries, spinal cord injuries, traumatic brain injuries, and burns.[45] According to UNICEF, in the first three months of the Israeli military campaign in Gaza, thousands of children lost one or both of their legs, and many were amputated and treated without anesthetic.[46]  

Unexploded ordnance is an additional concern, particularly to children. Humanity & Inclusion said that while it was impossible to know the full extent of the explosive remnant contamination in the Gaza Strip, a “significant increase” was expected, which will “undoubtedly cause further loss of life, limb, and psychological trauma for many years to come.”[47] The UN Mine Action Service said in late April that the exposure to unexploded ordnance in Gaza was now at its “most dangerous stage.”[48]

Three doctors, including two in emergency medicine—Dr. A.G. (a pseudonym), who worked at al-Shifa Hospital in Gaza City; Dr. Haytham Ahmed, who worked at Al-Nasser hospital in Khan Yunis; and Dr. Seema Jilani, a pediatrician and senior technical advisor for emergency health at the International Rescue Committee, who completed a two-week-long medical mission in Gaza—told Human Rights Watch that the majority of injuries they had seen among children were from burns. The next most prevalent type of injuries were traumatic limb amputations.[49] Dr. A.G. described injuries he treated or witnessed:

We are talking about a huge number of traumatic amputations, especially in children, leaving children with permanent disabilities. Also, many children who were wounded by shrapnel all over their faces and bodies, and I have seen children lose their eyesight due to injuries.[50]

Dr. Jilani, who worked in Al Aqsa Hospital between December 25 and January 8 for the International Rescue Committee and Medical Aid for Palestine, described seeing limbs blown off from explosive weapons in children. She also observed children with head trauma and severe burns.  

Family members told Human Rights Watch about injuries sustained by their children from Israeli forces’ use of explosive weapons.[51]

Malek, 13 (Traumatic Amputation)

Leila Al Kafarna, a mother of three children ages 7, 13, and 14, said the Israeli order to evacuate Beit Hanoun in northern Gaza led her and her family to flee on foot to Jabalia refugee camp on October 9 at around 1:30 a.m. She said their nighttime journey was harrowing, especially for her young children and her 84-year-old husband, who has prostate cancer and difficulties walking. She said, “There was no help or transportation available, so I carried my husband on my back to Jabalia.” They arrived at about 4:30 a.m. at the crossing near Abu Zaytoun Schools. Leila said that a strike by Israeli forces hit the area that morning and killed an unspecified number of people from her husband’s family. Some of the names of those killed in the Al Kafarna family, provided by Leila, match the description of an October 9 attack in Jabalia documented by Airwars, a nongovernmental organization (NGO) that investigates civilian harm in conflict zones.[52]

The following day, fearing that Jabalia might be attacked again, Al Kafarna and her family fled to Al Shati refugee camp, where her brother had a house. According to Al Kafarna, five days later—around October 16—an apparent Israeli strike hit the mosque next to the house, destroying the second floor of her brother’s house. “We were all injured, but thank God most of the injuries were not severe,” Al Kafarna said. Her family fled yet again to a nearby school, in Beach Camp, where they sustained minor injuries in another nearby attack, which a witness said may have targeted a car with Palestinian fighters.[53] Al Kafarna said that the head of the school then advised people sheltering there to leave because the school was at risk. Al Kafarna’s family subsequently walked miles along the beach to Nuseirat camp in central Gaza, which the Israeli military had declared safe, and where Al Kafarna’s aunt had a house.[54] She described the journey: “I carried my husband on my back, and we kept walking on foot through the sand and gunfire over our heads and planes dropping leaflets. Our children screamed along the way. It felt like the whole world ran and screamed with fear.”

Al Kafarna recounted experiencing a strike, which the UN Office for the Coordination of Humanitarian Affairs (OCHA) reported as a series of Israeli airstrikes on October 24 that damaged Abu Dalal Mall, Nuseirat camp’s central market, and left at least 20 people dead.[55] Al Kafarna said:

We finally felt a bit relieved and on October 20, Malek, my 13-year-old son, and I went to the market…. We went there for four consecutive days, waiting in line to get our [food] coupon, and it was on our fourth day that the attack happened.

We were there for an hour-and-a-half. Suddenly, I felt something was off. I took Malek’s hand and told him we needed to leave, and that was when I heard something breaking from the walls. I looked up as the missile [munition] was hitting the supermarket, and I lost consciousness…. We were thrown away by the impact and surrounded by rubble. There were people and bodies around and on top of us. Body parts were everywhere.

I woke up with a fire near my face, like a meter away, and I was still holding my son’s arm, so I started running, thinking I’m running with my son.... I was screaming at him to run fast before they bomb again, and then I felt like my son was light, as if there was no weight on the arm. So, I looked and didn’t see my son anywhere near me, and that was when I discovered that I was holding only his arm.

I put the arm down and ran back, and I saw my son running and screaming “Allah, Allah,” and he started telling me to forgive him for any day he treated me badly, as if he was saying goodbye. Malek then fainted.[56]

An ambulance took them to Al-Aqsa hospital. Malek survived, but he lost his left arm. Al Kafarna and Malek were evacuated to the United Arab Emirates (UAE) on December 19, where Malek underwent several surgeries and received a prosthetic. Malek was still receiving treatment as of July 20. Al Kafarna had to leave her two other children and her husband behind in Gaza and they had not been reunited as of September 2024.

Human Rights Watch verified video taken after the attack and posted to social media on October 24 showing dead and wounded people in civilian clothing, including children, in front of the supermarket.[57] Media outlets reported that the apparent target of the attack was a house above or next to the mall.[58] The Israeli authorities have not provided any information about the attack.

Ahed, 17 (Traumatic Amputation)

Dr. Hani Zouher Bseiso, an orthopedic surgeon who previously worked in al-Shifa Hospital, Gaza City, said that his 17-year-old niece Ahed had part of her leg blown off when an Israeli tank shell hit their house in Gaza City on December 19 at about 10 a.m. He believed it was an Israeli tank shell because tanks had surrounded their house for days before the incident. Ahed had gone up to the roof to call her father, who lives in Belgium, like she did every day. Bseiso said that only civilians lived in the house, adding that:

What affected me the most is that I wasn’t there for her when she got injured, it took me like three or four minutes to reach her…. She kept asking for me, saying “bring my uncle,” so I arrived and didn’t know what to do or where I should start. For a second, I just stood there and froze. I didn’t have anesthesia or my medical equipment and I had to decide the best and easiest way to save her life.[59]

Bseiso operated on Ahed on a dining table because they could not reach a hospital due to the heavy presence of Israeli forces.[60] He did not have the necessary equipment, such as surgical suture, so he used a sewing needle and thread for stitches.[61]

Human Rights Watch reviewed a video, first posted on Instagram on January 15 and published by media outlets later that month, that appears to show Ahed lying on a dining table with the lower half of her mangled right leg missing. Bseiso explains as he washes her leg in a bucket that he is forced to amputate without anesthesia.[62]

According to Reuters, the Israeli military did not respond to specific questions about the December 19 shelling of the Bseiso family home.[63]

Alaa, 7 (Traumatic Amputation)

Ahmed, the father of Alaa, 7, and Omar, 3, said their family was injured in an aerial attack by Israeli forces on November 21 at 4 a.m., which hit their building in Nuseirat refugee camp, where he and other displaced families from northern Gaza had taken refuge.[64] According to Yasser, Ahmed’s brother, this attack killed 13 family members, including Alaa and Omar’s grandfather, aunt, and cousins, including children. Alaa lost a hand in a traumatic amputation.[65]

Both Ahmed and Yasser said that their building housed only civilians. “The stairs were completely destroyed, only one room was standing, that’s where we were and why we survived,” Yasser said. “It took us 10 days to realize who was alive and who was killed.”[66]

When Alaa and Ahmed were taken to a hospital, Yasser said he was shocked to see staff operating without anesthetic.[67]

Human Rights Watch has not been able to independently confirm the details of the attack.

Ahmed, 9 Months (Traumatic Amputation)

Mohammed and Tahani Abu Masir, father and mother to 9-month-old Ahmed Abu Masir, independently told Human Rights Watch that Ahmed’s head and legs were injured during Israeli airstrikes on their residential neighborhood in Deir al-Balah between 10 and 11 a.m. on December 2, 2023, the day after the temporary ceasefire ended. Ahmed lost his left leg and his right leg was seriously injured. Mohammed said:

We thought they would update or push for a ceasefire for another day, but then the attacks started. I was at my house with my family. We are civilians, we don’t have anyone who is with Hamas: I am a driver; my wife is a teacher; my brothers, most of them are drivers; some wives are at home with kids. The attack that happened that day hit my house and my uncle’s house. Nine people died from my uncle’s house and two from mine. In addition to Ahmed, 14 other people were injured, including my second cousin’s child.[68]

Tahani described the moment of the attack, as children were playing and adults were carrying out household chores:

When we were hit, everything turned dark. It took us a while to realize what was happening. You lose a sense of what’s happening around you, even who you are. It was such a shocking experience that I didn’t even realize Ahmed had lost a leg in the attack. When I arrived at the hospital, I saw that one leg was gone.[69]

Sara, 9 (Severely Injured Hip)

Khuloud, Ahmed Abu Masir’s aunt and a mother of three, recounted the same attack. Her 9-year-old daughter, Sara, who had Ahmed in her lap at the time, suffered severe injuries and has since been unable to walk. Sara’s family had fled to Deir al-Balah from Zaitoun, following the Israeli authorities’ order to evacuate to the south, and was sheltering at the Abu Masir home. She described the same attack:

There was no warning, just a loud sound. Everything became dark, and it took me a moment to realize we had been targeted. Everyone started screaming, trying to find each other.

We heard Sara’s voice under the rubble. We removed the rubble with our bare hands, and when we found her, we saw she was badly injured. Her uncle carried her toward the hospital, and I started running after them barefoot.[70]

Khuloud said Sara’s hip was broken and the flesh covering it was gone.[71]

Both Tahani and Khuloud Abu Masir said two of their extended family members—siblings Nour, 7, and Kinan, 5—were killed in this attack.

Khuloud said that 9 or 10 people were killed in the house next door, including two children. Khuloud’s brother and father had been killed by an earlier attack during these hostilities.

Layan, 12 (Medical Amputation)

After Israeli authorities ordered Palestinians living in northern Gaza to evacuate on October 13, 12-year-old Layan Al Atta and her family left the Shejaiya neighborhood of Gaza City to seek safety in Deir al-Balah.[72] On December 2, while standing outside her tent in the yard of Deir al-Balah Martyrs School, Layan sustained multiple fragmentation injuries from apparent artillery that reportedly struck the Anas Ibn Malik mosque, which was close to the school.[73] Human Rights Watch reviewed medical records and spoke to Raghda, who said that Layan received critical injuries to her back, chest, and right leg. A medical assessment of her injuries reviewed by and on file with Human Rights Watch indicated that her injuries were consistent with fragmentation (or metal fragments) from the munition detonation.[74]

“They hit us without warning even though the school was known to be full of people, especially kids and women,” Raghda said. 

Airwars collected preliminary information about civilian casualties in this December 2 incident, which it listed as a contested strike due to lack of sufficient information. Airwars and other sources suggest that suspected Israeli artillery struck Anas Ibn Malik mosque, with at least four children wounded in the nearby shelter school.[75]

Layan was among the few injured Palestinians allowed to leave Gaza for treatment, albeit a week after her injury. Due to the delay, by the time she got medical treatment in Egypt, her wounds were infected and gangrenous and she had developed sepsis and liver dysfunction. Doctors decided to amputate her right leg below the knee.[76] Later, Layan had to have another surgery to treat an ulcer on her left buttock. On April 4, Raghda said Layan urgently needed adequate rehabilitation and access to a prosthetic that was difficult to obtain in Egypt. On July 21, Layan was evacuated to the United States for further treatment.[77]

Dr. Haytham Ahmed, an emergency doctor at Nasser Hospital in Khan Younis, southern Gaza, said that due to heavy fighting, many of the injured cannot always reach a hospital to receive adequate treatment in time to avoid an amputation: “Yesterday, a girl came in four days after her injury. Her thigh injuries were gangrenous. We are fighting against time.”[78]

Two family members of children who had disabilities and chronic health conditions before October 7 described injuries the children received from aerial attacks.

Nour, 14, with Down Syndrome (Fragmentation Injuries)

Nour Ghandour, a 14-year-old girl with Down syndrome, was seriously injured during an apparent Israeli airstrike on her home in Khan Yunis on December 3, according to her 35-year-old sister Doaa, who said she heard an airplane a few seconds before. Human Rights Watch reviewed media reports and video posted to social media on December 3 showing the family’s building heavily damaged and Nour in the hospital covered in dust with a serious injury to her arm, which Arabic language media attributed to Israeli airstrikes.[79]  

Doaa’s parents, a sister, and a brother were killed, according to Doaa, who said no warning preceded the attack. Nour’s father was a prominent lawyer, a former director general at the Ministry of Justice and a former head of the Legal Department at the Ministry of Foreign Affairs in Gaza. Doaa recounted the attack:

[On December 3] I checked my phone and saw it was 6:53 a.m. Minutes later, I heard the sound of a warplane very, very close; I never heard it so close before. At that moment, before I could do anything or even blink my eyes, I felt the whole world start shaking extremely hard….

When I regained consciousness, I found myself in a room filled with dust. There was a guy standing at the end of this room; I can remember his shocked eyes. I heard another person say to me, “Please help us to get you up.” I realized there were two guys, one holding my arms and the other holding my legs. They were trying to get me up…. Soon after, I was shocked to realize I was already on the ground floor, which was unbelievable to me since just a few minutes earlier I had been lying in my bed in our apartment on the third floor.[80]

Doaa said she feared she had lost her youngest sister, Nour, who had been sleeping in the same room as her. It was only when Doaa reached the hospital that she found Nour with fragmentation injuries to her face and a severe injury to her right arm, which required surgery. While at the hospital, she learned that her parents, two siblings, and a sister-in-law had been killed.

Osama, 3, with Combined Immune Deficiency (Inhaled Dust)

The mother of Osama, a 3-year-old boy with severe combined immune deficiency, a life-threatening health condition affecting the immune function, said that he inhaled dust following an attack on the Al-Shujaiya neighborhood in Gaza City in late October 2023.[81] For people with Osama’s condition, the inhalation of foreign particles like dust can be extremely dangerous. Following the attack, Osama, who had previously been prescribed and received regular physical respiratory therapy, experienced difficulties breathing, so his mother took him to Al-Nasr Pediatric Hospital, west of Gaza city, on October 30. Due to its lack of medical staff and equipment, Osama could not receive adequate treatment and his condition deteriorated further.

Al Jazeera reported that the Israeli military attacked the entrance of Al-Nasr Hospital on November 4.[82] His mother said she was still in the hospital with him when the Israeli military attacked, causing Osama to inhale more dust. The two fled the hospital on November 7 because Israeli forces were at the hospital gate, his mother said.

On November 10, medical staff and health officials told Al Jazeera they evacuated the hospital on the Israeli military’s order.[83] That day UNICEF raised concerns over reported attacks against al-Nasr Pediatric Hospital.[84]

Osama’s breathing deteriorated at home and “he was completely unable to eat,” said his mother. She also said she did not have access to nutrient-rich food that Osama required because of his condition. She herself faced additional risks as she was in the advanced stages of pregnancy when the Israeli military operations in Gaza began. She described being delayed in reaching a hospital due to security concerns when she went into labor. She lost a significant amount of blood during the delivery on October 18, but the hospital lacked the facilities to provide her with a blood transfusion. The family was struggling to obtain food, which harmed her ability to breastfeed her newborn daughter. “There wasn’t any healthy food,” she said. “I was living on anything we could find.”

As of March, nearly 60,000 pregnant women in Gaza were suffering from malnutrition, dehydration and lack of proper health care, according to the Ministry of Health in Gaza.[85]

When Osama’s condition deteriorated, his mother went back to Al-Nasr Hospital. “I could not find any pediatricians,” she said. “I was told they had either been abducted by the occupation forces or had left to the south.” The Israeli military has detained at least 310 healthcare workers while on duty in Gaza since October 7, according to the Gaza Ministry of Health, including 128 who remain in detention according to the World Health Organization.[86] Since no adequate treatment was available in Gaza City by that point, Osama’s mother took him to Al-Aqsa Martyrs Hospital in Deir al-Balah, where doctors inserted a nasogastric tube to provide him with nutrients and prevent dehydration. “Due to his condition, they told me he needed immediate medical attention outside of Gaza,” she said. Two weeks later, they were evacuated to the UAE, where, as of March 1, Osama was still receiving treatment at a hospital and regaining his weight.

Use of Explosive Weapons in Populated Areas

The Israeli military has extensively used explosive weapons in populated areas in Gaza. The effects of the use of explosive weapons on civilians are increasingly well-known and well-documented.[87] The Israeli military has reported that between October 7 and February 20, it carried out 29,000 airstrikes in Gaza.[88] According to a CNN investigation published in mid-December, the United States Office of the Director of National Intelligence assessed weapons used by Israeli forces and found that about 40 to 45 percent of the 29,000 air-to-ground munitions fired against targets in the Gaza Strip were unguided.[89] Israel’s military has dropped 75,000 tons of explosives on the Gaza Strip as of April 2024, according to figures released by the Government Media Office, where 10 percent did not explode.[90]

The use of explosive weapons with wide-area effects in populated areas is one of the gravest threats to civilians in armed conflict. According to the International Network on Explosive Weapons—co-founded by Human Rights Watch—when explosive weapons are used in populated areas around the world, approximately 90 percent of those killed and injured are civilians.[91] They both cause civilian casualties directly, and frequently damage or destroy civilian infrastructure, such as hospitals and schools, causing indirect long-term or “reverberating” harm to civilians. Their use raises serious concerns that attacks are likely to indiscriminately harm civilians and civilian objects in violation of international humanitarian law.

Explosive weapons used in populated areas force people to flee their homes, exacerbating humanitarian needs. Munitions with large amounts of explosive material can spread fragmentation unpredictably over a wide area and produce a powerful blast wave that can cause severe physical injuries, blunt force trauma, physical damage from flying debris, and cause or exacerbate other injuries or existing disabilities.

States Providing Arms and Military Assistance to Israel

The United States is the biggest supplier of weapons to Israel, and it has increased its military assistance since October 7. The US has provided at least $12.5 billion in military aid to Israel at the time of this writing in 2024.[92]

Germany is the second biggest supplier to Israel, with €862 million ($916 million) in arms sales to Israel between 2015 and 2019.[93] In 2023, the government authorized military equipment worth approximately €326.5 million, marking a tenfold increase from 2022.[94] Other major providers include the UK, Italy, and Canada.[95] 
 

Impact of Attacks on Health Care and Children with Disabilities

Damage and destruction of Gaza’s healthcare facilities during the hostilities, coupled with harm to medical professionals and health workers, has undermined the right to health. Children are the most affected and children with disabilities who are in need of ongoing access to medical care have been disproportionally impacted.[96]

The following section looks at the impact of Israeli military attacks that have damaged or destroyed hospitals and other healthcare facilities in Gaza and the difficulties civilians, particularly children with disabilities, have faced in gaining access to medical care during the hostilities.

Attacks on Hospitals

Between October 7, 2023 and August 20, 2024, Israeli forces carried out 505 attacks on healthcare in Gaza, causing 752 deaths and 982 injuries, according to WHO.[97] The attacks have left Gaza with 17 partially functioning hospitals, making it nearly impossible to respond to the enormous needs of the population.[98] According to Medical Aid for Palestine, the Israeli military’s continued bombardment of Gaza and attacks on healthcare facilities have severely affected health workers, whose deaths reportedly surpassed the total reported deaths of healthcare workers in global conflicts in 2021 and 2022 combined.[99] The organization concluded that “there is no safe place left in Gaza – not for healthcare workers, not for children, not for civilians, not for aid workers.”[100]

International humanitarian law provides special protections to medical personnel, hospitals and other medical facilities, including transports. While other presumptively civilian structures become military objectives if they are being used for a military purpose, hospitals lose their protection from attack only if they are being used, outside their humanitarian function, to commit “acts harmful to the enemy,” and if a reasonable warning to cease this misuse is given.[101]

The Israeli military has alleged that Hamas has used hospitals for “command centers” and other military purposes.[102] Human Rights Watch found that Israeli forces have committed repeated, apparently unlawful strikes on medical facilities, personnel, and transports, which alongside Israel’s blockade has decimated Gaza’s healthcare system and impacted the ability of staff to provide medical care.[103]  

Dr. Seema Jilani, who spent two-weeks at Al-Aqsa Hospital, said her visit was cut short by Israel’s order to evacuate the hospital:

I saw a semi-functional hospital become unable to function because of the mass casualties, lack of supplies, inability of staff to reach the hospital, and security constraints. One day while I was there, a bullet went in through the ICU. And in the following few days, Israel dropped leaflets in the surrounding area, the red zone, asking people to evacuate. We were not able to return after that.[104]

A December 2023 discussion paper by the UN special representative of the secretary-general on children and armed conflict highlighted that attacks on hospitals and their detrimental effects may be exacerbated for children with disabilities who may need ongoing or specific medical care, rehabilitation, or assistive technology.[105]

Human Rights Watch found that family members of children with disabilities and medical staff said that the Israeli forces’ actions have reduced the capacity of healthcare service providers and the availability of healthcare goods necessary for both urgent medical assistance and ongoing treatment. Two of the children with disabilities previously received regular medical care at al-Rantisi hospital, which has not been operational since November 2023.[106] 

Even before October 7, the Israeli government exercised full control over the type and amount of medical goods and supplies that could enter Gaza.[107] Since 2010, Israeli authorities have restricted and often prohibited what they deem “dual-use” items (civilian items that could be used by Hamas and other armed groups for military purposes).[108] However, according to WHO, the government’s “dual-use” list includes both overly broad categories and items that are vital to meet the needs of the population in Gaza, including certain kinds of medical equipment, including X-ray equipment and spare batteries for electric wheelchairs and other equipment needed by people with disabilities.[109] OCHA has said that these “restrictions impede the delivery of humanitarian assistance, basic services and reconstruction programs, and undermine the response capacity for emergencies.”[110]

Human Rights Watch has previously documented that the Israeli government’s closure of Gaza and restrictions on movement severely limited access for people with disabilities to services needed because of their disabilities, such as early intervention, and services designed to minimize and prevent further disabilities.[111] People with disabilities in Gaza also reported they faced difficulties obtaining assistive devices, such as wheelchairs and hearing aids, due largely to Israeli import restrictions.[112]

Since October 7, Israeli authorities have repeatedly refused to allow UN aid teams to deliver many types of necessary medical supplies, including anesthetics, into Gaza.[113] In addition, certain medication and supplies specifically needed by people with disabilities, such as ventilators, psychosocial support kits, and assistive devices, such as crutches, were denied entry.[114]

Such practices limit access to health services and to good quality health facilities, goods, and services, especially for people with disabilities and other groups facing higher risks during conflict.[115]

Aid workers said that the limited amount of aid and the arbitrary rejection of critical items have meant that the enormous need for aid cannot be met.[116] Israeli authorities have not provided a list of barred items, and inspections staff were rejecting entire truckloads in an apparently arbitrary manner without explanation or the possibility of appeal.[117] Israeli authorities generally do not allow aid agency representatives to be at the checkpoints where aid trucks are inspected.

Difficulties Obtaining Adequate Care at Hospitals

Even where there is a functioning medical facility in their vicinity in Gaza, children, particularly those with disabilities, face an array of serious obstacles when seeking care. These include the lack of safe access to health facilities; inadequate access to healthcare goods and services in hospitals; overcrowding in functioning hospitals; the inability of hospitals to provide children necessary treatment; the unavailability or unaffordability of essential medicines for children; closure of pediatric hospitals; shortages of early intervention services and treatments; and a need for evacuations outside Gaza to obtain adequate care.

Lack of Safe Access to Health Facilities

Even where hospitals continue to function, if only barely, the presence of Israeli forces, such as armored vehicles, has effectively prevented civilians needing medical care safe access.  

Dr. Bseiso, who operated on his niece Ahed’s leg at a dining table, described his emotional pain and fear because it was not safe to take her to a medical facility:

I used whatever equipment I had in the house and in the kitchen. I had to use a normal string instead of a medical one to stitch it to stop the bleeding….

The Israeli tanks were surrounding us and after I did her surgery, she asked, “If the Israelis come in, are you going to leave me?” I told her, “Your fate and my fate are the same, I won’t leave you.”[118]

They waited for five days, while Ahed’s situation deteriorated without adequate treatment, until the Israeli army had left, and Dr. Bseiso felt it was safe enough to take Ahed to Al-Shifa Hospital. Unable to access care in Al-Shifa Hospital, Dr. Bseiso took Ahed to another clinic. “We did perform most of the surgeries she needs,” he said. “But she needs additional operations on her left leg and most importantly, the installation of a prosthetic.”[119] In February 2024, PCRF evacuated Ahed to the United States for treatment.

Inadequate Access to Healthcare Goods and Services in Hospitals

Semi-functioning hospitals have been overcrowded and lack goods and supplies, including medicines needed by children with disabilities. Médecins Sans Frontières (MSF) reported in late April that people with chronic conditions or people with other medical needs were unable to receive the care they require because the few remaining functioning facilities were “being pushed to the brink, overwhelmed with patients with conflict-related trauma injuries.”[120] MSF also said that people with mental health conditions, such as bipolar condition or schizophrenia, do not have access to their regular treatment because the only psychiatric hospital in the Gaza Strip, which was in Gaza City, ceased functioning on November 6, 2023.[121] MSF said: “Without access to medical care, thousands more lives will be lost, beyond those killed in the Israeli bombardments seen in the news – these are Gaza’s ‘silent killings.’”[122]

The Office of the UN High Commissioner for Human Rights says that states’ obligations to the population under their effective control during armed conflict includes ensuring the availability, accessibility, and acceptability of quality health facilities, goods, and services.[123]

Dr. Haytham Ahmed, who works at Nasser Hospital, said that the lack of medical supplies and personnel has impacted the hospital’s ability to treat injured children. He added that the staff uses the term “hopeless case” to refer to a child or adult with high-degree burn injuries or multiple fragmentation injuries to the abdomen; he believed they could have received better treatment if specialists, specialized equipment, and even medical staff in general had been available. “We are left to deal with injuries that we do not know how to deal with, and without the right equipment,” he said.[124] Dr. Victoria Rose, a consultant plastic surgeon who was on a mission to European Gaza Hospital in Khan Yunis between March 21 and April 7, similarly said: “Lots of people are dying that do not necessarily need to die if we had the right number of doctors and nurses and kit.”[125]

Dr. Ahmed added that time is another obstacle, because due to the high number of injuries and staff shortages, staff cannot invest the hours normally needed to treat a serious traumatic injury. He said: “If this happened in [another country], this kind of operation would take 12 or 15 hours, but we do not have this luxury of time in the war.”[126]

Dr. Rose described a 16-year-old boy who had died from severe burn injuries:

It would be difficult to say if we would be able to save him if we had more capacity, but we definitely didn’t have the ability to carry out the management I would as a plastic surgeon in the UK. We didn’t even have the proper dressing we needed to cover him.[127]  

For burn victims, Dr. Rose said they lacked not only the proper dressing, but also enough saline to clean wounds.

Overcrowding in Functioning Hospitals

Parents of children who had been injured and acquired a disability described the chaos they encountered when bringing their child to one of the few remaining functional hospitals in Gaza. They described waiting several hours or longer before receiving medical attention. Tahani Abu Masir, mother of 9-month-old Ahmed, shared her experience getting his head and leg injuries treated:

As soon as we reached the hospital, it was chaotic. The hospital was full of people, everybody was screaming, everybody needed help…. Even after his surgery, there was no place for us, we stayed in the lobby.[128]

Leila Al Kafarna recounted “hours of suffering” for her son Malek when he could not receive immediate assistance following a traumatic amputation of his left arm:

My son was on the floor, he was losing blood and his entire body started shaking, his mouth was shaking, and at that moment, I started to scream for help, screaming at health professionals: “I am losing my son, please anyone help him.” They [the medical staff] had a shortage of everything, including gauze and medical staff, so many people around us were also injured and needed help. Most had lost a leg or an arm, and there were even bodies around us with no heads attached. I saw people who had considerable parts of their face blown away.[129]

After three hours, Malek was taken for surgery, but in the absence of supplies, they could only stop the bleeding. His mother said: “They didn’t have enough places or beds and covers for all the injured people.”[130]

Khuloud and her daughter Sara, a 9-year-old whose hip and legs were seriously injured, were referred to the European Hospital since there was no space in Al Shahd Aqsa Hospital, where they first took her. However, Khuloud said they could not go because the Israeli army had closed Salah al-Din Road, blocking passage that way. Receiving only painkillers for Sara, they waited for one-and-a-half week alongside other injured patients in the hospital’s yard, which at the time was a sanctuary for displaced people.

Eventually, Khuloud was able to take Sara to Egypt and then to Türkiye, where Sara underwent surgery twice.[131] 

According to Dr. Seema Jilani, the inability of the healthcare system to provide children with adequate medical treatment for urgent injuries, such as traumatic amputations, was also partly due to the high volume of patients and need to triage:

One day, a one-year-old child was brought in with both his right arm and right leg blown off. His diaper was all bloody and the flesh was hanging from his injuries. In [other countries], this boy would have been taken directly to an operating room. But since there were more life-threatening injuries than his, the orthopedic surgeon just applied a tourniquet to stop the bleeding.[132]

The high volume made it impossible for doctors to treat everyone with adequate care. Dr. Rose described:

You cannot continue to care for everyone. It is a constant battle. There were people we intended to get back to the operating room, but we could never quite keep up.… There was so much coming through the door. Even if we worked all night, all day, we were never able to keep up.[133]

Dr. A.G. said hospitals in Gaza have been unable to also provide any kind of regular treatment to children with disabilities or chronic health conditions, including due to overcrowding. “They can die simply due to lack of space in the hospital,” he said. “Keep in mind that children who had a disability prior to the war have also acquired new disabilities due to lack of access to health care or injuries.”[134]

The use of hospitals as shelters for displaced people further contributed to overcrowding, Dr. Rose said:  

The first thing that shocked me when I got there was the huge number of internally displaced people living on the hospital grounds. … [Families were] everywhere, in corridors and stairwells. As you walk through the hospital, on both sides, you see tents erected with carpets and sheets, some people sleeping on stairs. You see families of three or four children and grandparents. It’s quite shocking.[135]

Inability of Hospitals to Provide Children Necessary Treatment

The decimation of Gaza’s healthcare system, the extreme shortage of resources, and the arbitrary constraints on humanitarian assistance allowed into Gaza have forced doctors to make agonizing decisions. An MSF program director said as an example that they must choose between “sedating a patient in order to intubate them and save their life, or treating a seizure, as the same medication is needed.”[136]

Dr. Haytham Ahmed, an emergency medical physician at Nasser hospital, observed in January that Gaza’s healthcare system could not provide injured children and children with disabilities or chronic health conditions with the necessary treatments and rehabilitation—especially given the impacts of Israel’s attacks and blockade.[137] In April, MSF reported that the absence of a functional health system had resulted in numerous avoidable amputations and lost limbs.[138]

Dr. Rose, the plastic surgeon, spoke about the inability of Gaza’s health care system to provide children who have acquired a disability with the reconstructive surgeries they need:

There is one plastic surgeon in all of Gaza. He and I could do reconstructive surgeries in principle, but they take four or five hours in regular settings. In a hospital in Gaza, they would take even longer because of the lack of personnel and assistance…. You would have to spend lots more time to prepare. There would only be two of us [in Gaza], whereas at home [in the UK], there would be at least four of us and a scrub team of three or four nurses.[139]

“We had to make decisions to not allow one patient to occupy a whole day,” she said. At the rate patients were arriving, “if we had given one person the full day required, it would have had a detrimental impact on four or five other patients.”[140]

She said the closure of the Rafah crossing in May had made the situation worse. “None of the EMT [emergency medical technicians] are coming in, and more casualties are coming in.”[141]

Dr. Ana Jeelani, a pediatric orthopedic surgeon, spoke about “a cohort” of children and adults who had been seriously injured and acquired a disability who did not have access to the treatment they needed:

Some of them had been displaced from other hospitals, their wounds were infected; some had external fixators on longer than what was needed; many needed limb reconstruction surgeries they couldn’t receive.

And yet there is no access to reconstruction. Physical therapy and mobility aids, such as crutches or wheelchairs, are in short supply. Children who have acquired a disability due to sustained injuries need proper nutrition so their bones can heal, clean water so their wounds don’t get infected, monitoring as they grow.[142]

She raised concerns that due to lack of access to adequate treatment, including reconstructive surgeries and rehabilitation, children who have been injured and acquired a disability at a young age will be susceptible to developing further disabilities as they grow.[143]  

According to Humanity & Inclusion, significant damage has been inflicted upon critical rehabilitation and mental health and psychosocial support services and infrastructure, including to the Sheikh Hamad bin Khalifa al-Thani Hospital for Rehabilitation and Prosthetics, the first facility specialized in installing prosthetic limbs and providing rehabilitation in Gaza.[144] Humanity & Inclusion also noted that health care and rehabilitation services had already “experienced damage and destruction in previous wars and continue to be under operational and structural duress due to the closure imposed by Israeli authorities since 2007.”[145] Human Rights Watch documented in 2020 that children in Gaza who lost limbs had difficulty getting and replacing prosthetic and assistive devices due to the Israeli government’s closure of Gaza.[146] As of January, according to Dr. M. G., there were no rehabilitation programs left in Gaza.[147]

Lack of Essential Medicines for Children

Relatives of children who have a disability or a chronic health condition said that since October 7, their children have often been forced to forgo or otherwise ration medication, taking it in amounts or ways without a physician’s recommendation to extend its supply. Israel’s blockade and attacks have created serious shortages of medical equipment, supplies, and medication. Frequent bombardments have also made it dangerous and difficult for people to go to pharmacies, hospitals, and other health facilities to obtain medication and necessary medical equipment, even when available.

Amid the general shortage of medical supplies and medicines, a representative of Medical Aid for Palestine said in January 2024 that the organization was unable to provide medications to children with disabilities.[148] This remained the case as of August 7, 2024.[149]

Dr. Jilani described that during her two-week mission at the Al-Aqsa hospital she observed that children with chronic health conditions were unable to get necessary treatment:

When I was doing rounds in pediatric wards, I saw a 3-year-old immunocompromised patient who was clearly getting more ill and didn’t have access to medication to boost his immune system. He was having difficulty breathing and, because breathing took so much effort, he was also having difficulty eating.

Another patient, approximately 4-years-old, has cystic fibrosis, and similarly, they were unable to receive the medication they needed and were admitted to the hospital for respiratory infection and difficulty breathing.[150]

The hospital had run out of morphine and was unable to provide adequate pain medication to dying children. “We had to treat them on the floor,” Jilani said. “There was no bed, no dignity even in death.”[151]

With respect to the right to health during armed conflicts, the Office of the UN High Commissioner for Human Rights has said that states have obligations to the population under their effective control to fulfill all minimum core obligations to the right to health, including access to essential medicines.[152]

Closures of al-Rantisi Pediatric Hospital

Two families with children with disabilities reported that, prior to October 7, their children received regular treatment at al-Rantisi Pediatric Hospital in Gaza City. Following the blockade, that hospital faced difficulties providing regular treatments due to fuel and medication shortages. It ceased functioning in November 2023, after Israeli forces ordered the hospital evacuated before bombing it.[153]

Bader, a 15-year-old boy with hemophilia, a condition where blood does not clot properly, used to receive regular injections of Factor IX for treatment at al-Rantisi.[154]

He was injured on the morning of October 14, in an attack on Deir al-Balah, where his family had fled to from their home in Al Sabra neighborhood, Gaza City, after Israeli army leaflets ordered residents of northern Gaza to head south.[155] His sister said at least 15 others were killed in the strike, including their cousins, ages 6 and 17. For months since then, Bader has been unable to receive medication he needs to effectively stop the bleeding; as of February 15, he was experiencing internal bleeding in his joints. His sister shared photos of large, fist-sized, dark purple bruises on his legs.[156]

“Every day, my dad goes to the hospital, risking his life,” she said. “And every day, they [the doctors] tell him there is no treatment” available for Bader. She reported that Bader was finally evacuated to the UAE in late March and is receiving treatment.  

Since the start of the hostilities, Raisat and her 12-year-old nephew, Fadi, have been unable to access medications for their health conditions.[157] Fadi, who has cystic fibrosis, can no longer obtain pancreatic enzymes—a medication for people with cystic fibrosis, which is on WHO’s List of Essential Medicines—that he had previously received every month at al-Rantisi hospital.[158] In April, the Ministry of Health in Gaza issued a referral for Fadi for treatment abroad stating that the treatment he needs is not available in Gaza.[159] Raisat also has a disability and is a breast cancer patient. Like Fadi, Raisat has lost access to medicine necessary to treat her health condition, in her case hormone therapy, a widely prescribed breast cancer treatment.[160] As of August 20, Raisat and Fadi were both still in Gaza and did not have access to their medication.[161]

Unavailability or Unaffordability of Medication for Children

Wesam Hammad, the uncle of Muhammad, a 5-year-old with cerebral palsy, said their family could not obtain Muhammad’s required medication, including important anti-convulsant and anti-epileptic medications that he is supposed to take—and had previously taken—twice per day. “It’s been a week since he last had it,” Hammad said in December. “I am so scared he will have muscle spasms. I would buy it regardless of the cost if I could just find it.”[162] As of April 3, Hammad continued encountering challenges obtaining medication for Muhammad, because it was either unavailable or prohibitively expensive when available.[163]

After October 7, Ghazal, a 14-year-old with cerebral palsy, had to stop intensive physical therapy and missed a scheduled procedure that would have helped with her mobility.[164]

Dr. Ahmed Shahin said that his son Osman, a 16-year-old with cerebral palsy, was having more frequent convulsions because he did not have regular access to the anti-epileptic and anti-convulsant medication that he had taken twice per day before October 7. He believed the only reason his son survived the situation before the family left Gaza on November 16 was because he is a pediatrician and could personally attend to his son’s needs, including by obtaining the necessary injections through his connections and administering them.[165]

Early Intervention Shortages

Representatives from Palestine Children’s Relief Fund (PCRF) and Medical Aid for Palestine said the Israeli military operations in Gaza had made it impossible for them to continue with their regular, non-emergency programs, including specific ones that provided support and services to people with disabilities, and that they were focusing on emergency support. A PCRF representative said they feared that Palestinians with disabilities and chronic health conditions would die because of inadequate access to specialized care. Referring to the general inability to treat people, the representative said: “We are not able to respond to individual cases, no organization is.”[166] This remained the case as of August 7, 2024.[167]

Early intervention treatments that can provide significant, positive long-term effects on a child’s life and development are also lacking in Gaza. For example, Dr. Jeelani, the pediatric orthopedic surgeon, described the inability of the healthcare system to provide children with treatable conditions such as clubfoot with early intervention, including surgeries. There are no clubfoot specialists in Gaza or sufficient time to properly treat the condition, which involves weekly casting and recasting the foot to strengthen it before putting it in a brace for five years. Such braces have not been made in Gaza since the only site producing the braces was damaged and shut down and the only person trained to produce them at the site had been killed.[168]  

Dr. Jeelani said that three out of four children casted during her two-week medical mission were about 2 months old; the fourth child had started casting in Al-Shifa hospital but had to stop the treatment after October 7. Dr. Jeelani was concerned that, without treatment, those babies will not be able to walk. “I was able to cast them, they responded well, but now I’ve left and there is no one there to do the casting,” she said. “There is no brace to make. They will end up with disabilities.” After leaving Gaza, Dr. Jeelani acquired boxes of braces to send to Gaza, but she said this was impossible due to the closure of the Rafah crossing.

She said she also saw other children with developmental conditions and disabilities who needed medical care in Al-Aqsa Hospital, but that there was generally no treatment being provided to these children. “Health care is overloaded with acute cases.”[169]  

When children with developmental conditions and disabilities cannot access health care, rehabilitation, and early intervention programs, their conditions may become more complex or they may acquire further disabilities. 

Evacuations

Israel controls who can leave Gaza to get medical treatment for injuries sustained from the hostilities or for any chronic condition. Gaza Ministry of Health data indicates that over 95,500 people have been injured since October 7.[170] That number does not include people in Gaza with a disability or chronic health condition who need ongoing medical care.

According to the Ministry of Health in Gaza, 25,000 Palestinians in Gaza are in need of medical treatment abroad.[171] The number of those who have been able to evacuate for treatment reached 4,895 as of July.

Of those, many were being evacuated to Egypt, whose healthcare system has limited ability to treat their conditions. Layan, the 12-year-old who had her leg medically amputated in December after her evacuation to Egypt, highlights the inadequacy of health care there. On April 4, she developed fourth-degree bedsores—the most severe type of pressure ulcer and can be life-threatening—due to lack of access to physiotherapy and prosthetic.[172] Heals Palestine, a non-profit organization, evacuated Layan to the USA for treatment in July 2024.

Since May 7, when Israeli forces closed the Rafah crossings as part of its military operations against Rafah, Palestinians faced further difficulties to be evacuated for medical care, leaving tens of thousands of Palestinians in need of urgent medical care unable to receive treatment in Gaza or abroad.[173]

 

Unique Risks for Children with Disabilities during Attacks, Evacuations, and Forcible Transfers

According to the United Nations Office for the Coordination of Humanitarian Affairs (OCHA), as of August 7, 1.9 million people were internally displaced, amounting to 90 percent of Gaza’s population.[174] Civilians typically flee their homes during armed conflict to avoid fighting or reach safer areas, on the orders of a party to the conflict to evacuate for lawful security or military reasons, or because a party to the conflict unlawfully forcibly transfers them.[175] Human Rights Watch previously documented the severe difficulties civilians with disabilities face when fleeing buildings that Israeli forces attacked during fighting between 2009 and 2014, as well as their need for help to reach safety.[176]

Under the Fourth Geneva Convention applicable to occupied territory, a party to the conflict may not forcibly transfer the civilian population in whole or in part, unless required by the security of the civilians affected or for imperative military reasons.[177] 

Evacuations and the war crime of forced displacement disproportionately affect people with disabilities.[178] According to the International Committee of the Red Cross, when international humanitarian law permits such evacuations, “all possible measures must be taken in order that the civilians concerned are received under satisfactory conditions of shelter, hygiene, health, safety and nutrition and that members of the same family are not separated.” [179] In this regard, the specific needs of persons with disabilities must be taken into account when evaluating what is satisfactory from their perspective.”

The CRPD requires governments to take “all necessary measures” to ensure the safety and protection of people with disabilities, such as by providing necessary transportation and accommodation. In June, the UN Commission of Inquiry found that Israeli forces did not offer assistance to those who were unable to evacuate due to age, illness or disability or other status.[180]

Children with disabilities face unique risks during fighting and displacement. They are less able to flee attacks; lack access to assistive devices, including those needed to flee; and risk being abandoned during flight.[181] They also have greater needs for basic services, such as health care, WASH facilities, and education. These vulnerabilities may be compounded by experiences of stigma, abuse, and psychological harm.[182]

A December 2023 discussion paper by the special representative to the secretary-general for children and armed conflict specifically addressed the unique risks facing children with disabilities. It found that children with disabilities “are at an elevated risk, not only of enduring grave violations, but also of experiencing more detrimental consequences of these violations in comparison to their peers.”[183]

Families of children with disabilities whom Human Rights Watch interviewed described difficulties in following evacuation orders and fleeing attacks. Heavy destruction made it extremely difficult to use wheelchairs and other assistive devices. The lack of electricity has stopped elevators from functioning, making it extra difficult for families of children with certain physical disabilities who live in high-rise buildings to leave their homes.  

Lack of Effective Advance Warning and Adaptable Evacuation Procedures

The laws of war provide that warring parties give effective advance warning of attacks affecting civilians, unless circumstances do not permit.[184] Where the Israeli military did not provide such warnings, children with disabilities were exposed to higher risks during Israeli airstrikes and other attacks. In the following cases, in which families of children with disabilities described strikes on their homes or neighborhoods, they said there were no warnings prior to the attacks.

Ghazal, 14

Hala Al-Ghoula, mother of Ghazal, a 14-year-old girl with cerebral palsy, said that an Israeli airstrike struck their home in Al-Shujaiya neighborhood, Gaza City, and destroyed nearly all of the family’s possessions, including Ghazal’s orthotic shoe, wheelchair, and another device she used at night. As the attacks intensified, the family fled south. Ghazal’s mother and father took turns carrying Ghazal, but they quickly tired. Hala Al-Ghoula said:

Most of the time, Ghazal would tell me, “Mama, it’s over, leave me alone and run away. You should leave me in the street.” It was one of the worst days of my life, with a very difficult feeling that can never be described. I was confused: whether to stop while we were under bombardment or to walk and leave Ghazal.[185]

Orfat, 14

Orfat, 14, also lost his wheelchair when, according to his mother, his home in Zeitoun neighborhood, Gaza City, was hit in an attack. His mother, a single mother of six children, managed to secure a wheelchair from neighbors to move with Orfat to Rafah.[186]

Name Withheld, 14

A. J. 27, uses a wheelchair. His father has quadriplegia, his sister has a visual disability, and his 14-year-old cousin has a mobility disability. A.J. said his family did not follow the October 13 order to flee to the south nor the automated messages he got on his phone in the middle of the night instructing him to go south, since they had no way to do so with so many family members who have a disability. “I called the Red Cross and told them that we are people with disabilities and that we need help to evacuate, but they said that they were unable to help,” A.J. said.

On November 13, after the ground invasion by Israeli forces, A.J. and his family fled south, with A.J.’s 14-year-old cousin sitting on his lap. He said they had to walk 10 kilometers to Nuseirat. He said that Israeli military checkpoints along Salah al-Din Road were particularly difficult for people who use wheelchairs to navigate:

I put my cousin on my wheelchair, we held white flags and tried to cross the checkpoint on Salah al-Din Road. There was lots of sand. The Israeli army used the sand to build lots of ups and downs as part of their checkpoints, like small mountains of sand. I can usually roll my own wheelchair, but this time, it was impossible because of the sand, so another cousin was pushing me with my 14-year-old cousin on my lap. We fell twice. And no one else helps you, everyone is trying to survive the checkpoint.[187]

Osman, 16

Dr. Ahmed Shahin said it was difficult to carry Osman, his 16-year-old son with cerebral palsy, whenever they had to flee a new bombardment of their residential neighborhood in Gaza City:

We experienced hell every day. For example, one day, Israelis attacked a house in the neighborhood and the blast shattered all the windows in our house. Since the attack was so close and unexpected, we ran out of our house carrying Osman, and it’s not easy to carry him, especially while running. We ran that day for like half a kilometer to an area we thought would be safer, but it wasn’t safe. The Israeli army attacked that area as well, and we fled again.[188]

When the family decided to flee south, Osman’s wheelchair ultimately did not make leaving much easier. Dr. Shahin said:

Fleeing to the south was extremely difficult for my family, especially because of Osman. We first left by car, but due to the destruction, we had to leave our car behind. We then rented a horse and put Osman on a cart that was pulled by the horse, but after five kilometers, we also had to give up on the cart and continue on foot. It was hard because even though we had Osman’s wheelchair, there were potholes everywhere and lots of destruction. We were all sick after this journey, but Osman especially. He had a fever and was vomiting; he was sick for more than 10 days.[189]

In the cases examined by Human Rights Watch, Israeli forces do not appear to have taken into account the specific risks faced by people with disabilities, including their ability to flee attacks.

Human Rights Watch in November published its findings on the difficulties people with disabilities experienced fleeing attacks in Gaza and that the Israeli military’s October 13 order to all civilians in the northern Gaza Strip to evacuate to the south did not take into account the needs of people with disabilities, many of whom were unable to leave.[190] Human Rights Watch found that the order disproportionately exposed people with disabilities to the dangers of the hostilities and did not ensure they would be provided with proper accommodation and satisfactory conditions.

The failure of the Israeli military to provide adaptable evacuation procedures for children with disabilities who have been forced by attacks from their homes or temporary residence violates their rights under the CRPD. This has increased their likelihood of additional injury or even death.

Conditions in displacement

All children and their families that Human Rights Watch interviewed have been displaced, living in schools or in tents in makeshift camps. They all described conditions of severe overcrowding and poor hygiene, and lack of access to basic services, including sanitation.

Ghazal, 14, who has cerebral palsy, can only use the toilet or shower if her mother or sister are present to help her.[191] According to a water, sanitation, and hygiene technical advisor at Oxfam, as of January there were 500 people per toilet and 3,000 people per shower in southern Gaza.[192]

Several interviewees could not find diapers needed by a child with disabilities in their family. Wissam struggled to find and, if available, afford diapers for his nephew Muhammad, 5, who has cerebral palsy: “I need diapers for him, and I just cannot find his size. I’ve been searching all around, but even if I find it, it will cost me 50 shekels [US$14] to buy 36 diapers.”[193]

Dr. Ahmed Shahin said there were several days when Osman ran out of diapers and had to use towels instead.[194]

Loss of Parents and Caregivers

For children with disabilities, losing parents, other caregivers, and support networks is especially difficult because many of these children may need additional support compared to other children. For instance, as documented in this report, some children with disabilities need extra support to flee attacks. Moreover, because children with disabilities often experience social isolation, discrimination, and stigma, their immediate caregiver often acts as their advocate to ensure access to basic rights, such as food, health and education.[195] Thus, losing those caregivers, in addition to the trauma it brings, also harms their basic rights.

As of August 2024, according to the United Nations, at least 19,000 children in Gaza have been orphaned or otherwise found themselves alone without an adult to care for them.[196] Dr. Ana Jeelani, the child orthopedic surgeon, said she regularly saw children at Al-Aqsa Hospital who had no parents and were being cared for by strangers. She recounted seeing a 6- or 7-year-old boy in a wheelchair and with a fixator (metal frame) on his leg; his family had been killed, so the patient in the next bed was watching over him.[197]

The UN special representative on children and armed conflict, in the December discussion paper, highlighted that children who have been separated from caregivers during attacks or displacement are at higher risk of being killed or seriously injured.[198]

Nour, 14

The parents, brother, one sister, and a sister-in-law of Doaa, 35, and Nour, 14, who has Down syndrome, were killed in an Israeli airstrike on their home in Khan Yunis on December 3, according to Doaa. Nour was seriously injured. Now, Doaa is the sole caregiver of Nour, and she described the impact:

Whenever Nour sees other children with their parents, she turns to me and asks me: “My mom and dad used to do that with me as well. Who will do that for me now?” and I tell her, “I will do that for you. I will always take good care of you.” But my answer upsets her, and she says, “But it’s just you.”

Sometimes she starts crying and calling out for her mama and baba [dad]. Some days, before she goes to sleep, she tells me she hopes to see them in her dreams. One night, I heard her say, “Oh mama and baba, I am so sad you both left me. Both of you! Why did you both leave me?”

Doaa also said it is difficult for her to take care of Nour. “I used to take care of her before as well, but I wasn’t the one tracking her health needs and I don’t know much about it.”[199]

Muhammad, 5

Wesam Hammad, 25, currently takes care of his 5-year-old nephew, Muhammad, whose father, an emergency nurse, was killed in an attack. Hammad said: “Before we left Jabalia, my brother told me: ‘If I die, the responsibility is on you to take care of my child.’” He added that it is difficult to fulfill that responsibility due to lack of medicine, lack of the specific food that Muhammad needs, and their constant displacement.[200]

Anguish from Leaving Family in Gaza

Several parents who left Gaza with only their injured child spoke about the anguish they have felt being separated from their other children. Leila Al Kafarna, who left Gaza with her son Malek (who had a traumatic amputation) on December 19, has two other children, 7 and 14, she had to leave behind in Gaza with her 84-year-old husband because the evacuation permit was only for Malek and herself:

My children cry every time I call them. They are very scared, and they keep repeating that people are being killed in Gaza and begging me to bring them. Hearing their cries is heartbreaking because I cannot save them. My husband is very old; he has heart problems, diabetes, and prostate and kidney problems. He is very tired and cannot take care of the kids.[201]

Leila also described the impact on Malek, “He acts strong in front of me, but I do see his pain and how much he misses his siblings.”[202]

As of September, Leila was still in the UAE and had not been reunited with her children or husband.

Impact of Israeli Government Blockade on Children with Disabilities

After October 7, the Israeli government cut off essential services, including water and electricity, to Gaza and blocked the entry and distribution of humanitarian assistance, including food, water, and medicine, to the civilian population.

The Fourth Geneva Convention provides that the occupying power has the duty of ensuring food and medical supplies to the population.[203] Warring parties must allow and facilitate the rapid and unimpeded passage of humanitarian relief for civilians in need. They may not arbitrarily refuse to allow humanitarian assistance actions. They are also required to “permit the free passage of all consignments” of essential food, clothing and medicine, “intended for children under fifteen, expectant mothers and maternity cases.”[204]

Israeli officials have publicly stated that humanitarian aid to Gaza would be conditioned either on the release of hostages held by Hamas or on the elimination of Hamas.[205] However, Human Rights Watch has found that Israel’s effective blockade of Gaza constitutes collective punishment of the civilian population and the use of starvation as a method of warfare.[206] These are grave breaches of the Fourth Geneva Convention and customary international humanitarian law, and amount to war crimes.

Israel’s severe restrictions on access to humanitarian aid and services has been particularly harmful to children. Among other things, this has resulted in a sharp rise in the number of children suffering from acute malnutrition.[207]

This is especially true for children with disabilities who need specific support services and goods, including medication, specific food, assistive devices, hygiene products, and accessible sanitation. Israel’s decision to cut off electricity to Gaza soon after October 7 has imposed particular hardships on people with disabilities who require electricity in order to use certain medical equipment, blenders to blend food, chargers for devices such as hearing aids, power wheelchairs and other assistive devices that require electricity, and elevators needed to evacuate buildings before Israeli airstrikes.

Israel has an obligation under the CRPD to take “all necessary measures” to ensure the safety and protection of people with disabilities during armed conflict. This would entail, among other things, ensuring people with disabilities have access to the means necessary for their survival, including food, water, medication, health care, and assistive devices, all of which have mostly been absent in Gaza due to the blockade.

Impact of Starvation as a Method of Warfare on Children with Disabilities

Israeli forces have been using starvation of the civilian population as a method of warfare.[208]

In March UNICEF reported that 31 percent children under 2 in northern Gaza “suffer from acute malnutrition” and that 4.5 percent of children in the north suffer from “severe wasting,” the most life-threatening form of malnutrition.[209] Also, in March, WHO officials reported “children dying of starvation” in both Kamal Adwan and al Awda hospitals in northern Gaza.[210] On April 3, Oxfam said people in northern Gaza have been forced to survive on an average of 245 calories a day, “less than a can of fava beans,” since January.[211] 

Save the Children confirmed that 27 children died from starvation and disease in April.[212] As of September 16, 38 Palestinians, the majority being children, have died of malnutrition and dehydration in hospitals, according to Gaza’s Health Ministry.[213] Also in June, the WHO stated that 8,000 children under 5 have been diagnosed and treated for acute malnutrition, including 1,600 children with severe acute malnutrition.[214] UNRWA stated that more than 50,000 children of all ages required treatment for acute malnutrition.[215] According to the WHO, only two stabilization centers for severely malnourished patients were able to operate because of insecurity and lack of access.[216]

While there is no official data on the number of children with disabilities among the children who have died or are acutely malnourished, existing research demonstrates that children with disabilities are in general at a higher risk of malnutrition.[217]

In March, Reuters news agency reported finding 10 seriously malnourished children—including Isra, a 5-year-old girl who has quadriplegia and epilepsy—during a visit to al-Awda Health Centre, Rafah.[218] Photographs and videos showing signs of acute malnourishment in Fadi al-Zant, a 6-year-old boy with cystic fibrosis, lying in a bed at Kamal Adwan Hospital, northern Gaza, were posted on social media and by Reuters and other media outlets in mid-March.[219] Media outlets and social media have also reported that several children with disabilities have died from starvation-related complications, including malnutrition and dehydration, including Yazan al-Kafarna, 12, who had cerebral palsy and died on March 4.[220]

Malnutrition can also have serious physical and cognitive impacts, which can lead to a disability.[221]

Children with Disabilities Needing Specific Food

All relatives of children with disabilities interviewed by Human Rights Watch expressed having difficulties acquiring adequate food for their families. Dr. Ahmed Shahin said his son Osman, who uses a gastrostomy feeding tube, lost seven kilograms between the beginning of the hostilities and November 16 (when they were able to leave Gaza), because the family lacked access to both the specific foods he needed, such as vegetables, and electricity to blend his food.[222]

Wesam Hammad had great difficulties securing food for his 5-year-old nephew Muhammad, who has cerebral palsy and is lactose and gluten-intolerant and can only eat blended food. He said:

Most of his food should be fruits and vegetables, which is what I try to buy. But all I can find and afford are oranges. The problem is that he cannot

chew, so we need to break down the food for him. Everything is very expensive.[223]

Suhair, a single mother of six, including two children with disabilities, said she is unable to secure any additional food apart from the canned food she receives twice a day in the school where she and her family were displaced. “I don’t know how I or my children will survive,” she said, adding that she is afraid of health complications due to lack of access to fresh food, including sources of protein such as chicken or fish.[224] 

Raisat—aunt of 12-year-old Fadi, who has cystic fibrosis—and her family have had to eat much less due to the unavailability and unaffordability of food. She said:

There is no food or drink, we live on cans of cheese and beans, thank God. The prices of everything have increased by up to 70 percent…. We eat one meal in the morning and some cheese in the evening.[225]

Raisat herself also has a disability and is a cancer patient. Her 85-year-old mother uses a wheelchair, has diabetes, and is on dialysis. Raisat said that her family already lived in poverty before October 7, relying on charitable assistance from others, but that the current displacement has made obtaining adequate food and health care even more difficult.[226]

Several representatives of humanitarian organizations confirmed their inability to provide food for children on special diets or even to reach them. In January, a PCRF representative said they can only provide baby formula and thus cannot respond to the needs of children with specific diets.[227] As of August, the PCRF continued to face difficulties providing special food items to children with disabilities in Gaza due to Israel’s military’s restrictions on aid.[228] Medical Aid for Palestine said the special food items they had in storage ran out quickly, and since then, they have been unable to find and provide those in need with specialized food items:

Assistance is barely coming in: a quarter of the population is at risk of famine. Under these circumstances, people with disabilities and [people in vulnerable situations] suffer the most. When you speak about food, it’s hard to support people who need a specific diet and medical assistance.[229]

A staffer at an UN agency corroborated these challenges, saying that the conditions imposed by Israeli authorities have prevented them from implementing a dignified humanitarian response, including toward children and adults with disabilities.[230]

Impact of Lack of Access to Water on Children with Disabilities

Starting October 9, the Israeli government has maintained a policy to deny adequate access to water to civilians in Gaza, which has led to deaths from starvation and dehydration, and outbreaks of waterborne diseases. This has been done through restricting the entry of water entering Gaza through water pipelines; cutting electricity and restricting fuel that is required for to operate water, sanitation and hygiene (WASH) facilities; destroying and damaging WASH infrastructure; obstructing the ability of Gaza’s WASH authorities, and humanitarian actors, to make repairs; and blocking and restricting the entry of WASH-related supplies into Gaza. The authorities’ denial of adequate water to the civilian population is a war crime.

The Office of the UN High Commissioner for Human Rights has said that states that are party to the International Covenant on Economic, Social and Cultural Rights involved in armed conflicts jeopardize and violate their obligations to the right to health when they threaten or restrict access to safe and potable water and adequate sanitation.[231] In December, UNICEF reported that children in Gaza have access to only 10 percent of their normal water supply.[232] In just one week in mid-December UNICEF recorded 3,200 new cases of diarrhea in children per day.[233] In January, UNICEF reported that displaced children and their families in Gaza were unable to maintain the necessary levels of hygiene to prevent disease, which it attributed to the lack of safe water and sanitation, with many resorting to open defecation.[234] UNICEF reported in May that 9 out of 10 children under 5 in Gaza are having one or more infectious diseases and that levels of acute watery diarrhea are 20 times higher than typical.[235] 

In June, UNICEF raised the alarms that the very few functioning hospitals were unable to adequately treat disease outbreaks because they were so focused on responding to the high number of injured patients.[236]  A month later, on July 19, UNICEF reported that waterborne illnesses were spreading further, causing skin diseases and rashes on children.[237] In July, Gaza’s Ministry of Health and the WHO announced that the highly infectious vaccine-derived poliovirus had been identified at six locations in sewage samples collected by UNICEF.[238] By August 23, both the Palestinian Ministry of Health and the World Health Organization had confirmed the first case of polio in an unvaccinated 10-month old child in Gaza.[239]

Healthcare facilities also cannot operate without clean water, presenting significant challenges to conducting surgeries, providing treatment for disease and infections, and treating wounds for the thousands of wounded individuals in the Gaza Strip.

UNICEF had previously reported that children with disabilities generally face additional difficulties accessing water, sanitation, and hygiene compared to other children.[240]

The families of children with disabilities interviewed by Human Rights Watch said they experienced limited availability and access to clean drinking water. Some reported that their child with a disability also faced difficulties with accessing adequate sanitation, including necessary hygiene products, such as diapers.

Without access to safe and sufficient water, several interviewees said they began using groundwater for personal and domestic use, including drinking, even though, according to UN OCHA, it is almost entirely “unfit for human consumption.”[241]

Dr. Ahmed Shahin’s family did not have enough water, and clean drinking water is especially important for his 16-year-old son Osman, who has cerebral palsy and needs to be fed by a tube. He told Human Rights Watch how they managed:

We had a filter for the tap water, but for this filter to work, you need electricity, which we didn’t have. So, at the beginning of the war, we would boil the tap water, especially because of my son Osman. However, a week later, even this water was cut off. We then had to find different ways to get water. There was a house we had to walk to that had groundwater; but we could never get as much as we needed for personal and hygiene use.[242]

When they fled south, they all became sick, including due to unclean water, but Osman suffered the worst and longest with a fever and vomiting. Dr. Shahin said Osman was sick for more than 10 days.

A.J., 27, who uses a wheelchair and fled with his 14-year-old cousin who also has a mobility disability, explained that it is harder for both children and adults with disabilities to physically access adequate water. “Because I am in a wheelchair, I am not able to go out and look for water,” he said. The water they get from the school where they were staying has been scarce: they received only one liter per person, and there were days when they received none.[243] As of August, A.J. had fled Rafah for Deir al-Balah where he has been living with his family in a tent.[244]

The mother of 14-year-old Ghazal, who has cerebral palsy, worried that the lack of access to clean water would increase Ghazal’s risk of infections and diseases. She said Ghazal has had diarrhea more than once since their displacement to Rafah.[245] At the time of our interview in December, Wesam Hammad, the uncle of 5-year-old Muhammad, who has developmental disabilities, said his nephew had been sick for a week with vomiting and diarrhea due to the conditions of their displacement and lack of access to water.

Raisat described family members struggling with vomiting and diarrhea due to their lack of access to clean drinking water and healthy food. At the time of our interview, Raisat lived with her 12-year-old nephew Fadi and 11 other relatives, including 4 other children, in a tent. They could not afford bedding, covers, or winter clothes, and Raisat said the cold gave Fadi chest pain.[246] Dr. Seema Jilani explained that children with cystic fibrosis are at higher risk of respiratory illnesses during the flu and cold season, as colder weather can exacerbate cystic fibrosis symptoms.[247] As of August, Raisat and Fadi had been displaced for the fifth time and were living in a tent in Deir al-Balah, where they continue to struggle to access water.[248]

Research has shown that children with disabilities, especially if they do not have access to adequate nutrition, are at elevated risk of experiencing serious infections, including diarrhea, fever, and symptoms of acute respiratory infection.[249]

 

Psychological Harms to Children with Disabilities

Months of “violence, displacement, starvation and disease on top of nearly 17 years of a blockade have caused relentless mental harm to children in Gaza,” according to Save the Children.[250] UNICEF estimated that almost all of the 1.2 million children in Gaza are in need of mental health and psychosocial support, twice the figure compared with before October 7.[251]

Children whose mental health has been severely harmed may acquire a psychosocial disability. This impact is aggravated for children with disabilities who fear inability to flee attacks, abandonment, and have concerns about how their situation may put family members at risk.

Health and humanitarian professionals in Gaza told Human Rights Watch that for children with disabilities, constant fear, loss of family members, displacement, hunger, lack of access to health care and proper hygiene, and loss of assistive devices caused severe harm in their mental health. A teenage girl with cerebral palsy and several relatives of children with disabilities relayed personal accounts of these experiences.

Acquiring a disability without adequate support can be extremely difficult for children. Dr. Haytham Ahmed said physical injuries, especially burns and amputations, take an enormous toll not only on a child’s physical health, but also on their psychological well-being.[252] Speaking about children who have had their limbs amputated and are unable to receive the reconstructive surgery and rehabilitation they need, including mental health support, he said: “We are talking about children who are dealing with extreme trauma, horrific fears, and physical harms. They will need therapy and psychosocial support for life.”[253]

Dr. Jeelani, the child orthopedic surgeon, similarly said:

The psychological trauma is massive and it’s not quantifiable. Children are resilient to physical injuries: with adequate treatment, they bounce back really well compared to adults. But the psychological aspect of it, I don’t know how you quantify it in a place like Gaza. It’s not just their own injuries and lack of treatment, but they are seeing things they shouldn’t see. There are children there who had told me they have seen 10 bodies of [Palestinians killed in Israeli attacks], they shouldn’t be seeing this kind of stuff.[254]  

Khuloud observed changes in her daughter Sara, 9, whose hip and legs were seriously injured: 

Her own injury and everything she witnessed, all of that hit her psychologically. I can see a change in her. Sara is getting more nervous, pulling her hair and biting her nails, and her voice has gotten really loud since the attack happened. She is loud with me, raises her hand, and then she feels bad about it. She is not the same child.[255]

Ghazal, the 14-year-old with cerebral palsy, said:

From the day the war broke out, they destroyed what was inside us. They demolished my house and my room, which held all my memories. They took everything that helped me live, like my devices, my boot, and my wheelchair. How can I go back to how I was without all this?[256]

Caregivers of children with disabilities are impacted, too, which is important given their important role not only in caring for, but also advocating for their children with disabilities’ access to health and assistive devices, among other basic needs. The blockade and the ongoing attacks have everyone on edge. Dr. Shahin described how emotions ran higher at night. “Everything was difficult, but it was Jahannam [hell] when it got dark,” he said. “No water, no food, no electricity, people are hungry, thirsty, everyone is under stress, irritated.”[257]

Raisat—the aunt of 12-year-old Fadi, who has cystic fibrosis—felt unsafe everywhere and described her fear, including from hearing projectiles:

The feeling that you have, you wish to be dead, this is not a life to be living. We have not had a proper night of sleep since the war started. The constant destruction, constantly seeing dead people, this is not something that anyone can handle…. The sound of missiles and shrapnel alone gives me enough horror and nightmares. You are not safe anywhere. If you are near a school, near a hospital, you are not safe anywhere.[258]

Raisat said she dreads the prospect of having to flee once more, especially because of the challenges faced by her mother, who uses a wheelchair, and her older father who also has mobility difficulties. “I fear the Israeli army will drop leaflets and will attack Rafah,” she said. “I don’t know what our fate will be in the coming days.”[259]

Mental health and psychosocial support services, which were already difficult to access prior to the current hostilities, have grown even scarcer since the start of the Israeli military’s attacks on Gaza. Medical Aid for Palestine, Palestine Children’s Relief Fund, and UNICEF are all unable to provide mental health services and psychosocial support.[260] “Psychologists and social workers are themselves in a survival mode,” said a UNICEF representative.[261]

Furthermore, the mental health of children with disabilities is uniquely impacted by their fears that their disability will affect their and their family members’ ability to flee and by the additional impediments they face to accessing services. Ghazal wondered what to do, now that her devices are destroyed: “I need my devices to help me walk…. Now I am unable to get up and when I want to move, my mother or sister must help me. But I am afraid: what if they ask us to leave Rafah. How do I leave?”[262]

Dr. A.G. said that in the hospitals, the lack of access to anesthesia and pain-relieving medicines has caused significant suffering and emotional distress.[263]

The psychological challenges for people with disabilities are not new: Human Rights Watch in 2020 reported that children and adults with disabilities in Gaza experienced additional psychological distress because of their inability to flee, fears of future attacks, and how to survive them.[264]

Another psychological impact of the recurring hostilities and crises is the loss of education. Nearly 90 percent of schools in Gaza have been damaged or destroyed, and hundreds of thousands of students have been out of school for the 2023-2024 school year, including the children with disabilities whose families Human Rights Watch interviewed.[265]

Ghazal, as one such child, dreams of returning to school. “I wanted to complete my education and continue my life normally,” she said. “I was one of the outstanding students in school.” Without prompting, many families shared that their child or children with disabilities loved going to school and their favorite subject. Access to education is crucial because safe and protective environments like schools can provide a sense of normalcy essential to children’s development and psychological well-being.

 

International Humanitarian and Human Rights Law Relating to Children with Disabilities

International humanitarian law and international human rights law provide protections for children with disabilities that are applicable during armed conflict.

International humanitarian law

Under international treaty provisions, notably the Fourth Geneva Convention and Protocol I to the Geneva Conventions, and customary international humanitarian law, children affected by armed conflict are entitled to special respect and protection.[266]

Under the Fourth Geneva Convention, parties to a conflict are required to take all necessary measures to ensure “children under fifteen, who are orphaned or are separated from their families as a result of the war, are not left to their own resources.”[267] All parties to a conflict must allow the free passage of relief intended for certain groups, including children under 15.[268] Occupying powers such as Israel must “facilitate the proper working of all institutions devoted to the care” of children in occupied territory.[269]

Protocol I and Protocol II specifically provide for the privileged treatment of children during armed conflict and requires parties to a conflict to provide children “with the care and aid they require, whether because of their age or for any other reason.”[270] Protocol I reiterates the rights of children to medical care and to temporary evacuation where the child’s health or medical treatment needs require it.[271]

International Human Rights Law

The Convention on the Rights of the Child (CRC) applies to all children, including children with disabilities, and guarantees their rights to survival; develop to their fullest potential; and be protected from harmful influences and abuse. It also makes specific reference to children with disabilities, outlining the principle of non-discrimination and the special efforts states should make to realize the rights of children with disabilities.[272]

In situations of armed conflict, the Convention on the Rights of the Child directs states to “undertake to respect and ensure respect of rules of international humanitarian law which are relevant to the child and ensure protection and care of children who are affected by the armed conflict.”[273]

The Convention on the Rights of Persons with Disabilities (CRPD) affirms the rights of people with disabilities to equality and non-discrimination; freedom from violence and abuse; and to the highest attainable standard of health, among other rights.[274] Article 11 calls for states to take “all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk,” including armed conflicts, in accordance with their obligations under international humanitarian law and international human rights law.[275] UN Security Council Resolution 2475 reaffirms this duty by obliging all parties to an armed conflict to take measures to protect civilians with disabilities.[276]

Everyone, including children with disabilities, has the right to enjoy the highest attainable standard of mental health, including psychosocial services.[277]

In areas under its effective control, Israel is obligated to ensuring the provision of services designed to minimize and prevent further disabilities, including access to rehabilitation.[278]

In its concluding observations on Israel from October 9, 2023, the UN Committee on the Rights of Persons with Disabilities, called on Israel to identify and prevent:

[T]he risks and harms faced by persons with disabilities during military operations and [identify] their requirements in that context, [to prevent] attacks on and damage to infrastructure and civilian premises, including hospitals, rehabilitation centers and ambulances, and [to protect] schools from military attacks.[279]

The UN High Commissioner for Human Rights has stated that parties to the International Covenant on Economic, Social and Cultural Rights—which obligates states to respect, protect, and fulfill the rights to food, water, adequate sanitation, and health including during armed conflicts—should pay particular attention to the treatment of persons rendered vulnerable by conflict, including children and people with disabilities.[280] 

 

Recommendations

To the Government of Israel

Protection and Safety of Children with Disabilities

• Refrain from using explosive weapons with wide area effects in populated areas, the use of which raises serious concerns that attacks are likely to indiscriminately harm civilians, including children, and civilian objects in violation of international humanitarian law.

• Take all necessary measures for the protection and safety of children with disabilities in Gaza as obligated by international humanitarian law and international human rights law, including the Convention on the Rights of Persons with Disabilities (CRPD).

• Specifically consider the protection and safety of children with disabilities in military operations in accordance with international humanitarian law, including by raising awareness and sensitization at all levels of the military on the particular risks and harms to people with disabilities and their needs during military operations.

• Provide effective advance warning of attacks, unless circumstances do not permit, in accessible and inclusive manners and formats, to allow people with disabilities sufficient time to evacuate.

• Do not unlawfully displace civilians in violation of international humanitarian law. In case of evacuation orders, take into account the needs of people with disabilities, many of whom are unable to leave without assistance. Ensure that evacuation areas are capable of providing for the needs of people with disabilities.

• Facilitate the evacuations of children with disabilities and their families to voluntarily receive medical care elsewhere, while ensuring their right to return to Gaza.

• End the closure regime and permit free movement of people and goods to and from Gaza, subject to the restrictions permitted under international law, recognizing the acute risks to children with disabilities caused by the longstanding closure of Gaza. 

• Dismantle all forms of systematic domination and oppression against Palestinian children with disabilities, including in Gaza, and ensure they have access to rights equal to Israeli citizen children with disabilities.

International Court of Justice Orders 

• Comply with provisional measures ordered by the International Court of Justice to protect Palestinians in Gaza from genocide.

Access to Humanitarian Aid

• Stop obstructing aid—particularly food, including those items needed by children on a special diet, water, medicine, assistive devices, and fuel—from entering Gaza by fully opening its crossings, urgently opening additional ones, and not placing unjustified restrictions that prevent humanitarian goods from entering Gaza.

• Eliminate the “dual-use” label on medical-related supplies, assistive aids, and accessible technology like eyeglasses, wheelchairs, walkers, canes, hearing aid, and other assistive devices needed by people with disabilities, the restriction of which invariably has a disproportionate negative impact on civilians compared to any military advantage.

• Restore access to water and electricity.

• Ensure the protection of aid workers, including by ending attacks on humanitarian convoys, humanitarian workers, and officials in Gaza responsible for protecting and distributing aid. 

• Ensure aid can reach all parts of Gaza and that civilians can safely receive it, including by ending attacks on civilians gathered to collect aid.

• Support the provision of sustainable, timely, appropriate, inclusive, and accessible assistance to civilians with disabilities, in line with UN Security Council Resolution 2475 (2019).

Access to Health Care

• Ensure the right to the highest attainable standard of health.

  • Do not conduct unlawful attacks on medical personnel, facilities, and transports as well as on the wounded and sick, or obstruct access to health care, particularly as a punitive measure.

  • Comply with all non-derogable components of the right to health, including ensuring the equitable distribution and access to health facilities, goods, and services on a non-discriminatory basis.

  • Provide access to essential medicines, particularly those defined as such by WHO’s Action Programme on Essential Drugs.

• Support the provision of mental health and psychosocial support services to children, and ensure they reach and are accessible to children with disabilities.

Reparations

• Develop and implement a reparations program, on the basis of meaningful and effective consultations with victims, that includes targeted reparations for children who have acquired a disability and children with a pre-existing disability, including those with psychosocial disabilities, who have been harmed as a result of violations of international human rights or humanitarian law. Ensure they have access to free, quality, and rights-respecting medical, psychosocial, and mental health care services, including rehabilitation for the acquired disability and assistive devices.

To All Parties to the Conflict in Israel and Palestine

• Abide by the requirements of international humanitarian law, including the provisions on the methods and means of conflict and the laws of occupation.

• Do not carry out deliberate, indiscriminate or disproportionate attacks on civilians and civilian objects.

• Respect the special protection afforded to medical personnel, facilities, and transports.

• Take all feasible measures to ensure that civilians under the control of a warring party are protected against the effects of attacks.

To All Governments

• Publicly condemn violations of international humanitarian law and grave international crimes.

• Use arms embargoes, targeted sanctions, including travel bans and asset freezes, and other forms of leverage to press Israel to comply with their obligations under international humanitarian law and international human rights law, including the CRPD.

• Press Israel to comply with international humanitarian law provisions on the provision of humanitarian assistance, including to urgently approve and facilitate the entry into Gaza of all medical necessities, including anesthetics and other critical and essential medicine, including for children with disabilities, and assistive devices.

• Press Israel to ensure child medical and mental health specialists can enter Gaza without restrictions.

• Publicly support the work of the International Criminal Court in its ongoing Palestine investigation. Uphold the court’s independence and publicly condemn efforts to intimidate or interfere with its work, officials, and those cooperating with the institution.

• Support foreign domestic investigations and prosecutions under the principle of universal jurisdiction, as relevant and appropriate, of those credibly implicated in serious crimes in Gaza.  

• Address long-standing impunity by Israeli authorities and Palestinian armed groups for serious crimes under international law. Plan and support efforts to survey, clear, and destroy explosive remnants of war from the ongoing hostilities in Gaza.

• Collaborate with the Palestinian and Egyptian authorities to identify children, including those with pre-existing disabilities, who need medical treatment abroad and facilitate their evacuation for treatment. 

• Facilitate access to trainings and education, including through support and scholarships, for medical, social, and mental health staff from Gaza.

To States Providing Arms/Military Assistance to Israel

• Suspend military assistance and arms sales to Israel so long as its forces commit violations of international humanitarian law with impunity.

• Enforce domestic legislation limiting the transfer of arms and military assistance for violations of international human rights and humanitarian law.

To UN Security Council Members

• Urgently press Israel to protect both children and adults with disabilities in Gaza, in line with its obligations under international humanitarian law, international human rights law, including the CRRPD, and Security Council Resolution 2475.

To the UN Secretary-General and the Special Representative on Children and Armed Conflict

• Ensure the inclusion of children with pre-existing and acquired disabilities as part of its efforts to monitor and report on grave violations against children in Palestine (and in all armed conflicts), in particular killing and maiming, attacks on schools and hospitals, and denial of humanitarian access.

To Donors and Humanitarian Organizations

• Cooperate to ensure that children with different types of disabilities are included in all humanitarian responses in Gaza to provide them equal access to food, including specific food items needed because of their disability or health condition, water, medical care, psychosocial services, rehabilitation, and education.

• Cooperate to ensure humanitarian assistance includes programming to address long-term mental health impacts and trauma.

 

Acknowledgements

This report was researched and written by Emina Ćerimović, associate director in the Disability Rights Division.

Open-source research was conducted by Sophia Jones, open-source researcher in the Digital Investigations Lab. Milena Ansari, Israel and Palestine assistant researcher, provided research assistance and support for this report, including open-source research.

This report was edited by the senior editor in the Disability Rights Division and Samer Muscati, acting deputy disability rights director. Tom Porteous, deputy program director, and James Ross, legal and policy director, provided programmatic and legal review respectively.

The following Human Rights Watch staff provided specialist reviews: Mark Hiznay, associate director, Mary Wareham, deputy director, and Belkis Wille, associate director, in the Crisis, Conflict, and Arms Division; Matt McConnell, researcher in the Economic Justice and Rights Division; Bill Van Esveld, associate director in the Children’s Rights Division and acting Israel/Palestine director in the Middle East and North Africa Division; Bridget Sleap, senior researcher on the rights of older people in the Disability Rights Division; Balkees Jarrah, associate director in the International Justice Program; Nadia Harman, researcher in the Refugee and Migrants Rights Division; Heather Barr, associate director in the Women’s Rights Division; Sam Dubberley, director, in the Technology, Rights and Investigations Division; Abier Almasri, senior assistant researcher in the Middle East and North Africa Division; Omar Shakir, Israel and Palestine Director, Eric Goldstein, former deputy director in the Middle East and North Africa Division; Milena Ansari, Israel and Palestine assistant researcher, Adam Coogle, deputy director in the Middle East and North Africa Division; Niku Jafarnia, Bahrain and Yemen researcher; Hiba Zayadin, senior Syria and Jordan researcher; Louis Charbonneau, United Nations director; Claudio Francavilla, associate EU advocacy director; Yasmine Ahmed, UK director; Sarah Yager, Washington director; and Farida Deif, Canada director.

Subhajit Saha, senior coordinator in the Disability Rights Division, provided editorial assistance as well as production assistance and support. Christopher Choi, acting associate in the Disability Rights Division, assisted with desk research. The layout and production were done by Ivana Vasić, graphic designer; Travis Carr, publications officer; Jose Martinez, administrative officer; and Fitzroy Hepkins, senior administrative manager.

Taurai Maduna, Christina Curtis, and Ifé Fatunase, in the Multimedia division, and Abier Almasri in the MENA division were instrumental in the creation of the audiovisual materials accompanying this report. Yousef Mashharawi and Ahmad AL lulu conducted the videography for this report.

Human Rights Watch expresses its gratitude to non-governmental and humanitarian organizations who shared their knowledge and expertise as well as the frontline workers who are working in Gaza to provide critical health care amid the ongoing hostilities and for generously sharing their experiences on the ground.

We offer our deepest thanks to Kim Samuel and The Samuel Family Foundation for their generous support, unwavering partnership, and steadfast commitment to ensuring the voices of children with disabilities in Gaza are amplified.

Most importantly, Human Rights Watch thanks the children and families whose courage and dignity in sharing their stories and experiences made this report possible. We recognize the acute trauma they and their communities were experiencing at the time of the interviews and continue to experience.

Summary

Currently, due to my age [56], I am not eligible for the Personal Assistants Program provided by the National Integrated Care System, which is regulated by the 2015 law. Instead, I have access to a smaller program of 20 hours per month for personal assistance. Due to my physical disability, I need support to get out of bed, take a shower, and eat my meals. A person comes three times a week for two hours to help me with some of these tasks. On other days of the week and during the weekend, my partner supports me. I prefer [the assistant to come for] morning shifts, although there is no option to choose the schedule that suits me best.

—Adriana Paciel, 56, lawyer with a physical disability, Montevideo, August 22, 2023

The 2015 law referenced by Adriana Paciel (Law No. 19353), created the National Integrated Care System (Sistema Nacional Integrado de Cuidados, SNIC), which provides personal assistance services for people with disabilities under 29 years old and people 80 and over via the Personal Assistants Program (Asistentes Personales).

Paciel, like thousands of other people in Uruguay with disabilities, depends primarily on her family members’ support in her personal and professional life, as state-provided personal assistance is insufficient for people with disabilities to fully live their lives and exercise all their rights. Many are outright excluded from coverage. Most people with disabilities who are between 29 and 79 years old (inclusive), like Paciel, are barred from accessing the Personal Assistants Program. While a few, like Adriana, qualify for the extremely small Partial Support Program (Apoyo Parcial), this program only applies in the departments of Canelones, Cerro Largo, Montevideo, Paysandú, Rivera, and Rocha; serves a limited number of people; and lacks flexibility.

Uruguay is a pioneer in Latin America for implementing a support system for people with disabilities and older people that is integrated into its national care system. However, its program includes multiple eligibility restrictions for adults with disabilities, greatly limiting its reach.

In addition to age restrictions that keep people between 29- and 79-years-old (inclusive) from accessing the personal assistance program, Uruguay’s care system also excludes people who live in institutions like Carlos Ignacio Sánchez, a 27-year-old with cerebral palsy, who has been institutionalized in a home for people with disabilities since childhood. The Personal Assistants Program would have allowed Sánchez a modicum of control over his life and daily activities; without it, he remains entirely dependent on the schedules set for him by the institution’s staff.

Those who can access the Personal Assistants Program receive a maximum of 80 hours of support per month from the Ministry of Social Development. This limited number of hours hinders their ability to perform their daily activities on an equal basis with others. Such is the case of Leonardo Fabián Fernández Sosa, a 37-year-old man with cerebral palsy who uses the program, but for whom the number of hours is insufficient to carry out daily activities. Like many others with disabilities who access personal assistance services under this scheme, Fernández has no choice but to limit and compress his activities into the time when the assistant is available. As a result, people like Fernández find it difficult to realize their right to independent living.

Furthermore, several people with certain disabilities—including sensory disabilities (blind and deaf people), Down syndrome and other intellectual disabilities—and developmental disabilities with high support requirements, described how the program was inadequately tailored to meet their needs, limiting its value to their ability to live independently.

Disability is an umbrella term encompassing various impairments, including physical, sensory, intellectual, and psychosocial ones. However, aspiring personal assistants in Uruguay have very basic training, which focuses on supporting people with physical activities, such as with hygiene or mobility. Personal assistants are not trained to support people with non-physical disabilities or with certain physical or other disabilities who have complex, high-support requirements, such as people with autism.

Human Rights Watch research indicates that there is little government oversight over the quality of service provided by personal assistants or accountability measures, including for poor quality of service, such as punctuality and performance, or potential conflicts in the contractual relationship between personal assistants and people with disabilities. The labor courts remain the only avenue for resolving labor conflicts with personal assistants, and the person requiring assistance must pay out of pocket for legal representation, despite their already difficult financial situations. Meanwhile, the government pays for legal representation for the personal assistant. This creates a risk of problems in service provision and even abuse by personal assistants.

One of the core aspects of implementing disability rights policies is enabling people with disabilities, through their representative organizations, to actively participate in designing, implementing, and monitoring public policies. However, despite the National Integrated Care System having a consultative body—the Advisory Committee—with disability representation, disability organizations, especially those focusing on diverse disabilities other than physical, do not directly participate in its activities and are not represented on the Advisory Committee. This makes it difficult for disability organizations to represent those with a broad range of disabilities and provide effective support for independent living.

Outside the National Integrated Care System and its Personal Assistants Program, Uruguay has robust social policies to support people with disabilities, including:

• A non-contributory disability pension program for those with high-support needs, which is compatible with employment (that is, people may receive this pension and work), unlike in some other Latin American countries.
• A contributory early disability retirement program for workers who acquire a disability that prevents them from continuing to work, which is not compatible with employment.
• A program that provides support for women with disabilities to raise children.
• A range of technical assistance services for people with disabilities, such as wheelchairs, hearing aids for the deaf or hard of hearing, and rehabilitation services.
• Small telecare programs for some older people.
• An accessible housing program, which includes modifications to make homes livable for people with physical disabilities and older people.

Under international human rights law, all people with disabilities have the right to support for independent living, enshrined in the Convention on the Rights of Persons with Disabilities (CRPD). Uruguay, as a state party to the CRPD, is obligated to progressively realize this right to the maximum of its available resources, including by developing a concrete plan of action around the convention, in addition to expanding its care system to meet the CRPD and other international and regional standards. The National Integrated Care System is groundbreaking in many ways, but aspects of the system and its implementation so far, particularly its age restrictions and insufficient at tailoring to individuals’ requirements, raising concerns from a human rights perspective.

To align its legislation, policies, and systems with international human rights law and standards on independent living for people with disabilities, Uruguay should harmonize legislation and policies to specifically refer to the right to independent living for adults as distinct from the concept of “care.” Likewise, to conform to the human rights-based model of disability, Uruguay should review the concept of “dependency” in its legal and policy frameworks.

The human rights model of disability focuses first and foremost on the inherent dignity of the human being; it only focuses on a person’s medical characteristics if necessary. It centers the individual in all decisions affecting them and, most importantly, locates the main “problem” in society, not in the person. The “problem” of disability under this model stems from a lack of responsiveness by the state and civil society to disability as a facet of human diversity. The state in particular has a responsibility to tackle socially created obstacles in order to promote respect for the dignity of all persons and ensure their full and equal rights.

Uruguay’s law defines “dependency” as “the state in which individuals require the assistance of another person or persons or significant help to carry out basic activities and satisfy the needs of daily life.” Legislation and bills regarding the so-called dependency of people with disabilities describe it as a condition characterized by the inability of the person to perform activities on their own and that requires the intervention of a third party to carry out daily living activities. The underlying idea of “dependency” is that some people with disabilities cannot carry out daily living activities on their own and thus are not autonomous, which is a misconception. As a result, the term can stigmatize people with disabilities and older people as a burden to society and their families.

Uruguay should review the age-based restrictions on its Personal Assistants Program, which risk leading to arbitrary results. Instead, Uruguay should work progressively to the maximum of its available resources toward making its programs of support for independent living, including the provision of personal assistants, universal on the basis of a person’s needs to thrive in their communities. Such needs include what they require to study, work, and participate in recreational activities, among others. Uruguay should have a concrete plan to achieve this objective. If universal support is not possible in the short term due to resource constraints, Uruguay should ensure that the eligibility criteria it uses is objective, reasonable, transparent, and avoids the stigmatization of beneficiaries.

 

Methodology

Globally, there is a significant movement to include the right to care and support for various populations, including children, people with disabilities, and older people as a cornerstone of social policy. In Latin America, this movement is quickly gaining ground in several countries, such as Argentina, Brazil, Colombia, Ecuador, Mexico, Panama, Peru, and Uruguay. Because Uruguay was the first country to implement a national care system in the region, Human Rights Watch decided to conduct research on how Uruguay developed its care policy.

The general discourse around the right to care and support does not adequately address all the necessary components for a care and support policy that is fully consistent with international human rights law. This research seeks to better understand and unpack the elements necessary for a robust policy of care and support. Our findings and recommendations can serve as guidance for countries currently developing national care policies to create ones fully aligned with international human rights law, and for those with existing national care policies, like Uruguay, to make theirs even stronger.

Human Rights Watch conducted the research for this report in August 2023 in Montevideo and Salto departments in Uruguay. We interviewed 60 people, including 30 with various forms of disabilities, including people with physical disabilities, blind people, deaf people, people with intellectual disabilities, including autism, and people with psychosocial disabilities. Of the people with disabilities interviewed, 25 did not have access to personal assistance services: 19 of whom were ineligible for the Personal Assistants Program because they fell outside the eligible age range; the program did not meet the personal requirements of the other 6.

Some of the people with disabilities interviewed have access to other government programs for people with disabilities, such as the disability pension, disability retirement pension, and personal assistants through the Partial Support Program.

Our connections with people with disabilities were facilitated by human rights activists, specialists, and referrals by interviewees themselves.

We also interviewed people who worked as personal assistants, including the leader of the union of personal assistants in Uruguay and members of a cooperative of personal assistants operating in Salto.

Human Rights Watch also interviewed public officials, representatives of UN Women, gender experts, national and international disability rights experts and specialists, and representatives of civil society organizations, including organizations of people with disabilities and human rights organizations. We also interviewed employees of organizations that provide services to people with disabilities.

Human Rights Watch supplemented interviews by reviewing government documents, including laws relating to social protection, people with disabilities and care, as well as relevant reports and resolutions of United Nations treaty bodies, the Organization of American States (OAS), regional human rights bodies, like the Inter-American Commission on Human Rights, and non-governmental organizations.

This report specifically focuses on how support for independent living is being managed for people with disabilities at the national level, hence our selection of Montevideo and Salto departments. Montevideo department is home to Uruguay’s capital city and is where most of the Personal Assistants Program operates. Salto department is home to the first cooperative of personal assistants under the Personal Assistants Program.

Human Rights Watch conducted interviews in Spanish. For deaf interviewees, we used Uruguayan sign language interpreters: we used a professional interpreter during an interview with a leader in the deaf community and informal interpreters (that is, friends or relatives of interviewees) to assist during interviews with other deaf individuals.

Government agencies are not authorized to disclose the names of individuals to whom they provide personal assistants. As a result, we relied on private referrals to identify those using this service, which limited our ability to find relevant people and the overall number of accounts we received. A significant number of interviewees were not part of the program, primarily due to its age restrictions: only individuals under 29 or 80 and over can access the Personal Assistants Program.

Human Rights Watch used pseudonyms or withheld full names to protect the privacy of some interviewees. Before each interview, we explained the purpose of our research and sought each interviewee’s consent, which they verbally provided. We informed all interviewees of their right to end the interview at any point or decline to answer any question without repercussions.

For accessibility purposes, some interviews were conducted in groups, especially those with people with intellectual disabilities. While most interviews were conducted in person, a few were completed remotely using video conferencing platforms, like Microsoft Teams or Zoom.

Human Rights Watch sent letters to government agencies regarding the concerns detailed in this report, including the Ministry of Social Development (National Institute for Women and the National Secretariat on Care and Disabilities), the Social Security Bank, and the National Institute of Employment and Vocational Training. A list of agencies to which Human Rights Watch wrote letters can be found in the annex to the online version of this report. The Ministry for Social Development, through the National Secretariat on Care and Disabilities was the only agency that responded. The response is published in full in in the annex and reflected in various parts of this report.

 

Background

Uruguay adopted an innovative care law (Law No. 19353) on November 27, 2015, creating the National Integrated Care System (Sistema Nacional Integrado de Cuidados, SNIC), which includes sections related to personal assistance services for people with disabilities and older people.^[1] The original bill did not recognize the concept of a personal assistant, which was later added when the bill was signed into law in 2015. The concept had previously been recognized in another bill, the Personal Assistance project, drafted by leaders of the disability rights movement, which never became law.^[2]

According to Law No. 19353, the care system is the set of actions that society undertakes to ensure the comprehensive development and well-being of those in a “situation of dependency.”[3] This law lists three categories of people who have the right to receive care: children up to age of 12, people 65 years old and over, and people with disabilities under 29 who are in a “situation of dependency.”^[4] While the law establishes that people over age 65 can access the benefit, the National Care Board is implementing it progressively, and is thus prioritizing people 80 and over.[5]

Dependency is defined as “the state in which individuals require the assistance of another person or persons or significant help to carry out basic activities and satisfy the needs of daily life.”^[6] Officials from the National Integrated Care System, established by the care legislation as an institutional structure with a specific budget program enabling the design of care plans for all populations covered by the care system, clarified to Human Rights Watch that disability does not always equate to dependency.^[7] Thus, a person with a disability is not necessarily in a situation of dependency. Whether someone is eligible for personal assistant services depends on an assessment of that person’s level of dependency, which officials determine using the National Integrated Care System’s Dependency Scale.^[8]

Dependency is an overarching concept used by Uruguay’s legislation to describe children under 12 and people with disabilities and older persons who require the assistance of another person or persons or significant help to carry out basic activities and satisfy the needs of daily life as described above.[9] Dependency is a problematic concept when used to refer to people with disabilities or older people, as it implies that their condition is a purely individual deficiency that can be determined and measured objectively, disregarding the social environment in which the person develops. It also fails to frame their requirements for exercising their rights in a positive way. A narrative based on dependency projects a negative image of persons with disabilities and older persons, portraying them as a burden.

The care legislation also established the National Care Board (Junta Nacional de Cuidados, JNC), which operates under the authority of the Ministry of Social Development and is responsible for coordinating the entire care system.[10] The JNC has an Advisory Committee composed of unions, academia, and civil society actors, including some representatives of organizations of people with disabilities, who provide non-binding advice on the general operation of the National Integrated Care System.[11] The committee meets periodically to advise the National Secretariat on better practices to achieve the care system goals.[12]

Personal Assistants Program

The Ministry of Social Development administers the Personal Assistants Program, which is deployed across the country and available to certain categories of people with disabilities. The Social Security Bank manages the funds designated by the National Integrated Care System for personal assistants, which covers the assistant’s fees, including obligations related to social security, termination before three months, and retirement. However, the individual requiring assistance must cover any severance pay if they dismiss the assistant after three months of service.^[13]

Data from the 2011 national census indicates that of the 3,251,654 people in Uruguay, 517,771—that is, 16 percent of the total population—have a disability.^[14]

However, not everyone with disabilities has the right to a personal assistant. This is only available to those who are considered to have “severe” disabilities and a “high level of dependency”; who do not reside in an institution; who qualify based on means testing; who are under 29 years old or are 80 or over; and those whose income is below a certain threshold.

In a report on its first five years (2015-2020), Uruguay’s National Care System provided its rationales for the age cut-offs, noting that these were established based on a general policy of progressivity in access to social protection programs. With regard to people under 29, the report stated that the care system prioritized this age group because childhood is a crucial time for the development of various abilities, and it is important to have appropriate programs to shape the development of children and youth and promote their participation in other spaces, including work. With regard to older people, the report stated that there was an initial proposal to begin with people 85 and over, which in 2017 was amended to allow people to apply for support upon turning 80. The report said that this was appropriate due to the “marked increase in severe dependency starting at age 80 and the high incidence of severe dependency starting at age 85,” a rate of 30 percent. The report noted that it is harder to ensure people at these older ages receive needed care due to a reduction in support networks and also that a large share of older people live with other older people, who might also be in a process of “fragility.”[15]

The National Secretary of Care and Disability told Human Rights Watch that age restrictions in law and administrative directives were budgetary.[16] In their written response to the main findings of this report, the National Secretary of Care said “they were currently working on determining a sustainability analysis of the programs and the possibility of expanding them”, which would be the way forward.[17]

The primary role of the personal assistant is to offer support and care, which does not include decision-making. The Personal Assistants Program emphasizes that personal assistants do not replace other professionals, such as educators or rehabilitation specialists.^[18] The personal assistant visits the individual’s home at a mutually agreed upon time, and they only deal with the person requiring assistance, not family members, and are not expected to undertake domestic chores.[19]

Number of Beneficiaries

According to official information from the National Integrated Care System, by December 2023, there were a total of 6,048 active personal assistance services, with 1,462 new services registered in 2023.^[20] The population using the program is composed of men and women in similar proportions. In December 2023, it included 3,141 men and 2,907 women.[21]

Personal Assistant Profile

Personal assistants must be at least 18 years old and have completed elementary school education and a 152-hour basic dependency care course offered by the National Institute of Employment and Vocational Training (INEFOP).[22] 

Cost of a Personal Assistant

Eligible people with disabilities receive a subsidy to hire a certified personal assistant for up to 80 hours per month to support them in areas such as personal hygiene, cleanliness, dressing, eating nutritiously, studying, and participating in leisure activities.^[23]

The size of the subsidy depends on an assessment of the severity of the disability and the level of “dependency” as well as income, which would include contributions of family members, as defined by the Civil Code of Uruguay.[24] The subsidy can be 33, 67, or 100 percent of the cost of the personal assistant. As of January 2024, the full cost for 80 hours of assistance was 28,414.20 Uruguayan pesos (US$ 708.89) per month, including both salary and benefits.^[25]

For adults requiring service, the subsidy’s linkage to their family’s income is problematic. This policy results in people 18 and over being economically dependent on their family members, which can lead to situations of abuse and even violence.[26] The income used to determine eligibility for the Personal Assistants Program should be solely that of the adult requiring the service, regardless of their family’s income.

The Personal Assistants Program aims to provide a social safety net for personal assistants, and the state (via the Social Security Bank) directly provides their salary and benefits, like social security and retirement benefits.^[27]

Provision of Personal Assistance

The Uruguayan government provides personal assistants to eligible people with disabilities in two ways. The first involves hiring a government-paid personal assistant who receives direction on the nature of the assistance from the individual in need or their family. Current legislation does not clearly detail how individuals with intellectual or learning disabilities are supported to direct their own support through a personal assistant. The other way is through cooperatives, which are organizations created to fulfill a social purpose.[28] This second method has not been fully implemented and currently exists only as a pilot program that started in 2021 in certain departments of Uruguay, including Salto and Tacuarembó.^[29]

Other Support-Related Programs

In addition to the Personal Assistants Program, there are other programs that benefit people with disabilities, that are not part of the care program, including disability pension programs, the Partial Support Program, and support for the rehabilitation of children and adolescents with disabilities, housing, and women with disabilities to raise children. There is also a telecare program for older people.

Disability Pension Programs

The Social Security Bank implements some of Uruguay’s policies through social security mechanisms that protect people with disabilities. Disability pensions, contributory or non-contributory, are one way that the Social Security Bank provides benefits.[30]

The government provides a non-contributory disability pension for people with a “severe disability,” which is determined using a specific scale for assessment.[31] This pension is compatible with employment and recipients are allowed to claim it while in paid employment up to a certain monthly salary limit.^[32] People with disabilities can receive this pension from childhood, and it is lifelong for those with permanent disabilities.^[33]

In addition, Uruguay offers a contributory pension in the form of the early disability retirement program. This option allows individuals who can no longer work due to a disability to retire early on disability grounds. This pension is incompatible with employment as it centers on the recipient becoming unable to work.^[34] Uruguayan law also has a provision for early retirement (and a contributory pension) at the age of 45 for individuals whose aging process is accelerated due to their disability, such as people with Down syndrome.^[35]

Partial Support Program

The Ministry of Social Development has a program that began before the implementation of the care legislation called the Partial Support Program (Apoyo Parcial).^[36] The program lacks flexibility as each personal assistant serves three individuals, making it challenging to adjust timings to cater to each recipient’s preferences.^[37] Furthermore, it exists only in 6 of Uruguay’s 19 departments: Canelones, Cerro Largo, Montevideo, Paysandú, Rivera, and Rocha.^[38]

Support and Services for Rehabilitation of Children and Adolescents with Disabilities

The Social Security Bank provides a range of extraordinary aids and services to support the rehabilitation of children and adolescents. These benefits include hydrotherapy and financial assistance for purchasing technical aids, such as wheelchairs, belts, and hearing devices for individuals with impairments, if they are prescribed by a doctor. ^[39]

Housing Support Program

The Social Security Bank offers a housing support program, which includes the construction of accessible housing designed for individuals with physical disabilities. It also provides a rental subsidy and financial support for older people who live in long-stay residences. However, it does not offer financing for long-stay residences specifically for people with disabilities.^[40]

Support for Women with Disabilities to Raise Children

The Support for Women with Disabilities to Raise Children Program (Apoyo a la Crianza a Mujeres con Discapacidad), launched in 2021 under the purview of the Secretariat for Care and Disability of the Ministry of Social Development, aims to support women with disabilities who are pregnant or have children under the age of 6 in their care. Accordingly, it identifies and provides the support that a woman requires to exercise her right to raise children. The program includes the development of personalized parenting support plans and home visits to support the woman with disabilities and offers certain material benefits such as cribs and bottles, among others. As of January 2024, this program only covered the departments of Canelones, Montevideo, and San José.[41]

The program, which only covers women with disabilities, is problematic because it excludes men with disabilities who may be providing care for their children and should thus have access to these same services. Uruguay’s provision of assistance only to women perpetuates gender stereotypes and risks furthering the pattern of women doing the bulk of unpaid childcare work.

Telecare Program

Finally, there is a nascent telecare program for older people, which currently serves a limited number of beneficiaries. At time of writing, the specific eligibility criteria were unclear.^[42] Telecare is a service through which a person calls previously authorized companies to receive recommendations regarding personal care. It can be a quick health consultation, including for mental health, or it can address emergency situations in which older people may find themselves.[43] To use the program, the beneficiary needs access to newer digital devices.^[44]

 

Challenges Regarding Personal Assistant Services

Several times, I’ve tried to compete for a public position as a lawyer. Once, I was very close to getting hired, which ultimately did not happen. But [if I did get the position], not having access to a personal assistant who could come early [in the morning] would have been challenging.

—Adriana Andrea Paciel Navarro, Montevideo, August 22, 2023

People with disabilities in Uruguay face several challenges in accessing government-funded personal assistant services, which have age- and residence-based restrictions, provide only a limited number of hours of support, cover only limited types of daily activities, inadequately support people with disabilities with caregiving responsibilities, and cannot meet high-support needs due to inadequate training.

Age- and Residence-Based Restrictions to Access with Inadequate Alternatives

Twenty-five people with disabilities Human Rights Watch interviewed were not eligible to benefit from the Personal Assistants Program due to age-based or location-based requirements.

Only people under 29 years old or 80 or over are eligible. Care system officials told Human Rights Watch that age limits were set for strictly budgetary reasons. They also said there are no current plans to expand age-based eligibility because the system is currently focusing on addressing other issues, including updating the basic dependency care course that all aspiring personal assistants must complete, as many individuals providing personal assistance services had not completed the course.^[45] Additionally, because of the Covid-19 pandemic, during 2020-2023, home evaluation visits of people with disabilities to determine their eligibility for personal assistants were halted and the course was not delivered.^[46]

Human Rights Watch spoke to two people with disabilities who did not qualify for the Personal Assistants Program due to their age but were able to access the smaller Partial Support Program.

If the beneficiary of the Partial Support Program needs to change their schedule, they must seek authorization from the Ministry of Social Development.^[47] While exceptions may be granted for medical appointments or other events, such as a job meeting or recreational opportunities, advance notice is necessary for any schedule change.^[48] In one interviewee’s experience, it is easier to adhere to the predetermined schedule, so she made fewer and fewer scheduling adjustments due to the general constraints of the service.^[49] Furthermore, the personal assistants operating under this program do not work on weekends or holidays.^[50] Thus, if a beneficiary’s designated personal assistance day falls on a holiday, they would not receive service that day. Beneficiaries cannot choose when they would receive assistance, as they must follow a schedule established by the ministry the week before the service.^[51]

Adriana Andrea Paciel Navarro, a 56-year-old lawyer with a physical disability, has lived with her partner Gerardo for 14 years. Due to her age, she does not qualify for the care system’s Personal Assistants Program, but she was able to access the Partial Support Program.^[52]

Under the Partial Support Program, a personal assistant provides support for her at home three times a week, assisting with daily activities such as hygiene, getting out of bed, and dressing. The assistant typically arrives any time from 10 a.m. to 12 p.m., even though Paciel prefers to receive assistance in the morning, so she does not miss any professional activities later in the day. However, because government jobs generally start at 9 a.m. and Paciel cannot guarantee she can start working until 12 p.m. given her personal assistant’s schedule, she has been unable to access government jobs, despite applying several times.^[53]

Isabel Santos, a 55-year-old woman with a physical disability, also does not qualify for the Personal Assistants Program because of her age. For some time, she had accessed the Partial Support Program.^[54] Like others we interviewed, Isabel described the personal assistants’ lack of consistency, including their arrival time. While the Ministry of Social Development dispatched the same assistant some of the time, they sent different individuals to cover different shifts at other times.^[55]

This inconsistency meant that Isabel frequently had to re-explain the detailed tasks the assistant needed to undertake. She shared her frustrations:

Having to explain and provide instructions to the different people [the ministry] sent to support me was overwhelming. Some assistants thought that the reusable catheters that I use were disposable, so in several instances, I found them in the trash because they had been discarded by the assistant.[56]

The Personal Assistants Program’s reach is further constrained by the requirement that care can only be administered in private homes, not in institutions. Some people with disabilities in Uruguay live in institutions because Uruguay does not have any programs to support young people with disabilities who do not have suitable family nor other social support networks.^[57] Carlos Ignacio Sánchez, 27, is one such person and has resided in an institution for individuals with disabilities since 2010. Although he meets the age criteria, he is ineligible for the Personal Assistants Program because he lives in an institution. He told Human Rights Watch that he wanted the support of a personal assistant for his secondary education:

I don’t get along with my mother. I barely knew her, so when I was a kid, I entered this place [the institution] and I studied [in an] elementary school. I then wanted to go to high school, but this institution is understaffed, so they could not support me or take me to school. This is why I’d like to get a personal assistant, but [the government] told me that it was for people who did not live in institutions.[58]

Sánchez also hopes to find employment outside the institution. Currently, he can only leave the institution to go to a center providing services for people with disabilities, which he does a few mornings every week. He remains confined to the institution at all other times, including weekends.^[59]

Limited Hours of Government-Funded Assistance

Interviewees with disabilities using the Personal Assistants Program told Human Rights Watch that while government-funded personal assistant services were extremely valuable, the government has not been paying for enough hours of support.

Vanessa Barbosa, a 35-year-old woman with cerebral palsy since birth and the mother of a 5-year-old daughter, said the 80 hours per month of personal assistant services provided by the Social Security Bank are insufficient. Vanessa requires extensive support for daily activities, including personal hygiene, feeding, and caring for her daughter. ^[60] Because of the insufficient government-funded hours, she has had to hire personal assistants—at her own expense—to assist with tasks such as getting out of bed and cleaning during weekends. This means that she has been diverting resources from other essentials such as buying clothes or engaging in recreational activities.^[61] Barbosa and her mother, with whom she lives, depend on government benefits for people with permanent disabilities and for her daughter’s care.^[62]

Leonardo Fabián Fernández Sosa, a 37-year-old man with cerebral palsy, also said the allocated hours were insufficient to manage all his daily activities, often forcing him to prioritize certain ones.^[63] He was compelled to choose between having a personal assistant in the morning to help him get out of bed or in the afternoon to support him at school. “I use my personal assistant to go to school in the afternoon, to help me take notes, and to go to the bathroom,” he said. “In the morning, my parents help me with personal care, and on weekends, I have no personal assistance, so I stay at home.” Staying home during weekends has forced him to curtail his social interactions and physical rehabilitation, among other activities. Occasionally, he arranges with his personal assistant for extra hours, incurring additional costs that he cannot regularly afford.^[64]

Fernández Sosa also highlighted the challenges faced by individuals with disabilities in securing employment. His sole income is a permanent disability pension, which he has received since childhood, of about 15,000 Uruguayan pesos ($385 per month).^[65]

Oscar de los Andes (pseudonym), a 43-year-old man with a lifelong physical disability, described how the personal assistant service is indispensable for him, especially for his personal hygiene and occasional outings. Oscar relies on a state-provided disability pension because of the difficulties he faces in going to school or finding employment, a problem shared by other people with physical disabilities.^[66]

Unlike some of his peers, de los Andes transitioned from the Partial Support Program to the care system for support. Because he lives with his parents, who can provide some assistance, he can manage within the state-allotted 80 hours per month of personal assistance. While he possesses considerable discretion in adjusting his personal assistant’s schedule, the 80 hours leave little to no time for leisurely outings or other outdoor activities because of how long his essential hygiene tasks take. On weekends, his mother helps him with sponge baths. However, his mother struggles to fully meet his support needs. At times, de los Andes has also sought the assistance of his neighbors. When his personal assistant is unavailable for long periods of time—like during their annual 20-day leave, during which the program does not provide a replacement—it has been particularly challenging. “I too wish to enjoy the summer, but it’s not feasible due to my personal assistant’s vacation,” Oscar lamented. Echoing the sentiments of others who use personal assistant services, Oscar felt the hours provided by the care system fall short of addressing all his needs.^[67]

Coverage for Only Limited Types of Activities

Under international human rights law, all people with disabilities have the right to independent living and to be included in the community regardless of the type of their disability or the intensity of their support needs.[68] Disability is an umbrella concept that includes people with different types of physical, sensory, intellectual, or psychosocial impairments that can lead to exclusion when interacting with social, cultural, and attitudinal barriers.[69]

Human Rights Watch’s research in Uruguay indicates that personal assistants did not have the necessary training or tools to provide diverse types of support to meet users’ specific requirements.

The Convention on the Rights of Persons with Disabilities (CRPD) establishes a variety of support mechanisms to actualize the rights to participation and independent living for people with disabilities.[70] The CRPD encompasses all types of disabilities, regardless of the intensity of their support needs, including those individuals with high requirements. It recognizes the diversity of disabilities and the resulting diversity of support needed.[71] Thus, personal assistants should be equipped to provide a wide spectrum of support, beyond activities related to physical mobility or basic hygiene tasks, so all people with disabilities can enjoy their rights.

The current training for individuals working in personal assistance in Uruguay does not cover the wide variety of supports required to serve people with various disabilities. Some of these supports may be basic, but others demand different types of community interventions.[72]

To become a personal assistant one must have completed elementary education and taken a 152-hour basic dependency care course, although this focuses on support for older people and not people with disabilities.^[73] There is little involvement of organizations for people with disabilities in providing course content, such as the philosophical underpinnings of the right to independent living and the need to respect the will and preferences of individuals regarding the support they receive.^[74]

The course is also not tailored to support the independent living of people with intellectual disabilities, including through supported decision-making.[75] Interviewees with disabilities described the hardships they faced due to the limited types of activities covered by personal assistant services.

José Manuel Ceijas, a 27-year-old man with autism, told Human Rights Watch that he had to leave university after his first semester because crowded classrooms were very difficult environments for him. He said he would require more specific, individualized educational support to manage his educational tasks effectively if he returned to university, including receiving additional explanations for certain course topics.^[76]

Human Rights Watch met with nine young people with Down syndrome and other intellectual disabilities. None of them used the Personal Assistants Program because the activities and support it provided did not meet their needs. The CRPD protects the right of people with disabilities to live independently and be included in the community "with choices equal to others," and to ensure the full enjoyment of this right, states should provide support services, including personal assistance.[77] But the Personal Assistant Program should be tailored to the specific barriers and challenges the individual with disabilities faces, to meaningfully ensure fulfillment of the right to live independently. For example, individuals with intellectual disabilities should have access to personal assistance that allows them to process information more easily and that could include support for decision-making, depending on the individual’s will and preference.^[78] However, this aspect of support has not been developed in Uruguay.^[79]

Mateo (full name withheld), a 27-year-old with Down syndrome who works at a law firm, noted his specific support needs for making cash transactions. “Using my debit card is straightforward for me, but handling cash payments and understanding change is very complicated,” he explained. “I would benefit from assistance with these types of activities.” However, the care system’s Personal Assistants Program does not cover this.[80]

The Uruguayan Down Syndrome Association, composed of relatives of individuals with Down syndrome, said that because of the challenge of independent living for people with this type of disability, they typically live with their families. Representatives of the association shared one rare exception of an adult with Down syndrome living independently without the support of a personal assistant.^[81]

According to Pablo Zelis, the president of the Union of the Blind of Uruguay (UNCU) and a person who is blind, personal assistant services could benefit blind people, particularly those who recently became blind as adults, as a transitional tool to help them adapt to their new situation. However, he pointed out that the services provided by personal assistants under the care system do not fully cover the type of support required by individuals who are blind. As a result, they do not commonly utilize the care system.^[82]

Human Rights Watch interviewed two deaf individuals, including Luis Lavega, a mediator within the deaf community. He said members of the deaf community hire mediators, instead of using the Personal Assistants Program, because mediators function like personal assistants. Beyond interpreting information into sign language, mediators undertake broader cultural interpretation tasks for the deaf community, such as interpreting behaviors that might be considered unusual by people unfamiliar with deaf culture. For example, while it is perfectly acceptable to stomp your feet on the ground to ask for attention in deaf culture, this behavior may seem odd to those outside the deaf community.[83]

Inadequate Support for People with Disabilities in Caregiving

The Personal Assistants Program does not address caregiving activities carried out by people with disabilities even though some have childcare responsibilities and could benefit from supports typically used for caregiving.

Vanessa Barbosa, a woman with cerebral palsy and the mother of a 5-year-old daughter, uses the personal assistant service, but she can only do so for her own personal needs, like feeding and dressing herself.^[84] Vanessa’s mother provides support for all tasks related to caring for Vanessa’s daughter. Vanessa’s daughter receives an economic benefit because she is a child.[85]

Inadequate Training to Meet High-Support Needs

Human Rights Watch spoke to several people who said personal assistants are not trained to aid people with high-support needs, especially children and older people.

Human Rights Watch convened a meeting with five members of the Autism Federation of Uruguay, many of whom have children with autism and require substantial support. Lourdes Mantras, who has a 17-year-old son with autism and high-support needs, highlighted that finding a suitable assistant is challenging. She said that just one or two days after establishing a working relationship, personal assistants often left because they were overwhelmed by the difficulties of providing quality support for her son. The training and profiles of current personal assistants are not well-suited to meet the needs of individuals with autism, who sometimes require alternative communication techniques and considerable patience for certain behaviors. She said, “People prefer other jobs, such as being an autonomy facilitator in schools, which is perceived as less demanding than supporting a person with autism requiring high support.”^[86]

Sandra Mónico, the mother of a teenage daughter with autism, said she uses the personal assistant services, which she found was especially useful when her daughter was young. She believes the quality of the service depended more on the personal skills of the personal assistant rather than their training, which she felt was very basic.^[87]

Cristina Arbiza, the mother of a 23-year-old man with autism, told Human Rights Watch that she had used the Personal Assistants Program when her son was younger. However, as he grew older and became more active, she found that personal assistants were not equipped to handle a young adult who required more intensive attention and consequently stopped using the service. Like Lourdes Mantras, Arbiza observed high turnover among assistants, saying that assistants often lasted only two weeks due to the demanding nature of their jobs. Some individuals with autism struggle to trust new people, so such frequent changes and the accompanying need to constantly adapt to new assistants can render the service ineffective.^[88]

Rosana Fierro, the mother of Jessica Almeida, a 25-year-old woman with autism, recounted her experience with the Personal Assistants Program. She did not receive the entire subsidy due to her family’s income and eventually stopped using the service because of a widespread concern within the autism community that personal assistants were inadequately trained to effectively support individuals with autism. She said:

I always have to be vigilant with Jessica; I can’t afford to be distracted. When she crosses the street, she does so without looking, which could lead to an accident…. The level of support Jessica requires is very high, so it would be more beneficial for me to receive financial assistance so that my family can help with her care, rather than relying on someone who may not be adequately trained for the necessary tasks.[89]

Human Rights Watch also spoke with Pablo Correa, the father of Santiago, a 20-year-old man who has spinal muscular atrophy. Pablo said he does not utilize the Personal Assistants Program because Santiago’s needs are so extensive that current personal assistants could not meet them. Santiago uses a respirator and gastric tubes for feeding, both of which necessitate very frequent and meticulous maintenance, which the Personal Assistants Program does not provide.^[90]

 

Oversight and Accountability Challenges

In the beginning [2018], the person assigned to me as my personal assistant was quite good. However, during the pandemic, when the Uruguayan government started to provide more benefits to people with disabilities, my personal assistant began to show anger and resentment toward me. She started to insult me, and one day, she just stopped coming. I reported this situation to the integrated care system, but they told me it was an issue I had to resolve directly with this person. As I don’t have the resources to pay for severance, the personal assistant continues to charge the government but has stopped coming and no longer provides me with the service.

—Lucía Machiarena Silveira, Montevideo, August 15, 2023

The legal framework regulating personal assistant services establishes an employment relationship between the person requiring assistance (also referred to as the “user” or “beneficiary”) and the personal assistant.^[91] First, the individual requiring assistance conducts interviews with personal assistants from a list provided by the Ministry of Social Development. Then, upon reaching an agreement, the service commences. The service guidelines allow a three-month trial period for both the individual requiring assistance and the personal assistant to determine if he or she meets their expectations. After this period, if the user chooses to terminate the personal assistant, they themselves must provide severance pay, which is usually a percentage based on how long the service was provided.^[92]

Additionally, the system does not provide a replacement when the personal assistant takes their annual 20-day vacation entitlement.^[93]

The National Integrated Care System and the Social Security Bank do not have systems to hold personal assistants accountable when problems arise. This lack of oversight can result in service deficiencies.

Challenges for Individuals Requiring Assistance

The labor courts resolve any disputes between the assisted individual and the personal assistant.[94] According to a care system official, Uruguayan labor laws are highly protective of the rights of workers (in this case, the personal assistant), including by offering free legal representation for their defense against wrongful termination.[95] Conversely, employers (in this case, the individual requiring assistance) do not have access to the same benefit, which can put them at a disadvantage.[96] Furthermore, although the Uruguayan government pays the wages of personal assistants, it does not cover termination costs. Consequently, if a user dismisses a personal assistant after three months, the user must provide severance pay.

“This creates significant difficulties for the service user who, because they are legally treated as an employer, lacks state-provided assistance to navigate conflicts in the labor courts,” a high-level care official told Human Rights Watch.^[97]

Lucía Machiarena Silveira, a 33-year-old woman with a physical disability and autism, qualified for the Personal Assistants Program when she was 27. She received the maximum 80 service hours per month and full disability pension. Initially, Machiarena Silveira had a very good relationship with her personal assistant, but they started having problems when the assistant began intruding into her and her mother’s private lives. Machiarena Silveira’s mother also had a physical disability and lived with her until her death. The personal assistant offered unsolicited advice regarding their medications, and Machiarena recalled how the assistant once prevented Machiarena Silveira’s mother from taking a required Covid-19 test for hospital admission, which meant her mother could not receive the medical treatment she needed.^[98]

During the early years of the pandemic, Machiarena Silveira and her mother had to live under strict health security measures, and the government provided them with additional support, including food and other benefits. Machiarena Silveira said her personal assistant began to resent the provision of these benefits and questioned why they received so much from the government. Machiarena Silveira said the personal assistant unexpectedly showed up at her home at 9 p.m. one day, yelling for about two hours that it was unfair for her to receive so many benefits before she left. Machiarena Silveira said her personal assistant never returned.^[99]

Machiarena Silveira said she informed the authorities, who said it was a private matter that should be resolved directly with the personal assistant, possibly by reaching a settlement.^[100] Because she is completely reliant on her disability pension, which she said she spends almost entirely on rent, Machiarena Silveira has had to take out loans to cover her other financial obligations. As a result, she was unable to pay the severance fee to terminate her personal assistant. Machiarena believed the assistant continued to receive a salary from the Social Security Bank even though she stopped providing Machiarena Silveira’s with services in 2020.^[101] Human Rights Watch was unable to corroborate this account with the personal assistant because she was unavailable.

Due to Machiarena Silveira’s disability, she requires support for her mobility at home. She has to go downstairs to exit the building, and now that she lives alone without a personal assistant, it is difficult for her leave her home. “I could very well benefit from the Personal Assistants Program,” she said. “But since I already have a personal assistant registered in the system, I cannot request another person to support me.”^[102]

Another example of the problems posed by inadequate monitoring and redress mechanisms in the care system can be seen in the situation of Florencia Santos. Santos, 32, reported difficulties with a personal assistant from the care system who violated the confidentiality and respect for private life clauses in their service contract by sharing details of Santos’ daily activities with her family members. Santos said she was forced to dismiss the personal assistant and seek a resolution from the labor court to avoid paying severance, which the court granted.^[103]

Challenges for Personal Assistants

Some personal assistants form cooperatives for providing services.^[104] Under this model, interested users who need support or care approach the cooperative, and the entity then selects the personal assistant from among its members. This model already operates in some departments, including Salto.^[105] In Uruguay, Law No. 18407 regulates cooperatives, which are defined as “autonomous associations of people who voluntarily unite on the basis of self-effort and mutual aid, to satisfy their common economic, social, and cultural needs, through a jointly owned and democratically managed enterprise.”^[106]

Various members of the cooperative in Salto department told Human Rights Watch that their organization could defend the interests of personal assistants.^[107] They spoke of instances where service users engaged in bad practices, such as waiting until just before the end of the three-month trial period to stop services to avoid paying severance.[108] The cooperative in Salto protects the interests of personal assistants during situations like this, including by mediating conflicts between users and personal assistants when conflicts arise.[109]

This model could be replicated for users with disabilities in a way that defends their interests. Economic cooperatives protect the interests of individuals who come together to undertake economic activities, but it could also be worthwhile for people with disabilities to explore user cooperatives in which they have a space for interaction and the collective defense of their interests. One model for such organizations could be centers for independent living, which have been operating in some countries like the United States.[110] Centers for independent living have also been working in other countries such as Costa Rica.[111]

 

Lack of Involvement of Organizations of People with Disabilities in the Design and Implementation of the Care System

The Independent Living Movement for People with Disabilities in Uruguay drafted a proposal to regulate personal assistant services. In 2015, the law creating the integrated care system was passed, and it included an entire chapter prepared by the movement. However, the resulting product is different and does not align with the philosophy of independent living and international rights law. The disability organizations that are part of the movement were excluded from the debates, and in reality, they are not taken into consideration in the management of the system.

—Raquel González Barnech, member of the Independent Living Movement for People with Disabilities in Uruguay, Montevideo, Uruguay, July 20, 2023

The National Integrated Care System established an Advisory Committee that involves various sectors of civil society, including organizations of people with disabilities.[112] However, these groups’ level of influence on government policy has not been very significant according to some of their leaders.[113]

The care policy in Uruguay has been driven by the pro-care movement, a civil society collective focused on promoting recognition of unpaid care work, which is largely carried out by women.[114] A representative of the pro-care movement said organizations of people with disabilities did not participate actively in the design of the care system.[115] Another representative noted that due to the different disabilities among their representatives, organizations of people with disabilities struggled to agree on common points and present unified proposals concerning the system.[116]

Some organizations and experts working on disability rights have expressed concerns that the role of the personal assistant, as established in the 2015 legislation, and the growing world care agenda in general, does not align with the philosophy and values of the independent living movement for people with disabilities.^[117] From their perspective, a personal assistant should be treated not merely as a care worker, but also as an enabler of the exercise of rights of people with disabilities. For example, they may enable a person with a disability to be able to live independently in the community and fully exercise their rights protected under the CRPD. They are concerned that the current design of the system leans too heavily toward a medical approach.[118]

Furthermore, people with disabilities were not included in designing the basic dependency care course, according to a representative from the National Institute of Employment and Vocational Training (INEFOP).[119] An official explained their exclusion by pointing out that the course focused more on the care of older people, despite including some components on supporting people with disabilities.[120]

Finally, people with autism face additional challenges. Five members of the Autism Federation of Uruguay said they did not have the opportunity to directly participate in the implementation of the care system, including by formally putting forward their needs. They also were not asked to share the perspectives of families of people with autism, who have significant requirements for support, in the development of personal assistant services.[121]

 

The Right to Live Independently

According to international law, the full realization of the right to live independently and the right to be included in the community in the context of support and care policies requires universal access to support for all people with disabilities and the involvement of people with disabilities in support services.

International Legal Framework

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) represents a paradigm shift in addressing the rights and needs of people with disabilities, including by recognizing their equality and right to equal recognition before the law as well as the autonomy and independence of adults. 

The CRPD’s core principle of autonomy, articulated in articles 3 and 12 and further elaborated on in the CRPD Committee’s General Comment No. 1, includes the right of people with disabilities to make their own choices.^[122] Ensuring their autonomy requires the transformation of traditional care policy frameworks into support systems that empower independent living and respect the will and preferences of individuals, enabling them to manage their own lives.

Article 19 of the CRPD enshrines the right to live independently and be included in the community, and CRPD Committee General Comment No. 5 provides further guidance on this right.[123] The General Comment emphasizes that support services should enable people with disabilities’ full participation in all aspects of life, as tailored to the individual’s needs and choices, thereby fostering their autonomy and self-determination.[124]

Institutionalization is a significant challenge to autonomy and self-determination. To address this, the CRPD Committee’s guidelines on deinstitutionalization strongly recommend that states parties move away from institutional care to providing community-based services that underscore the individual’s right to live independently.^[125]

In summary, the CRPD’s provisions, the CRPD Committee’s General Comments, and its guidelines on deinstitutionalization use language focused on placing support at the center for the exercise of rights.[126] While the word “care” appears in some articles of the CRPD in the context of health care and support for people with disabilities to care for their children, as well as respite care, the word is not used in the context of the right of people with disabilities to independent living, which is precisely where the right to human support, including personal assistance, is developed, marking a shift from a “care” paradigm to one with support systems for independent living. This shift would not only change the terminology, but also reflects a deep commitment to the dignity, rights, and active participation of persons with disabilities in society.

Support for Independent Living for All People with Disabilities

Article 19 of the CRPD emphasizes the importance of independent living for all people with disabilities.^[127] For their full participation in society, the related right to support for independent living is crucial.^[128] These rights and others in the CRPD foster an inclusive world where any individual, including a child, with any type of disability can live independently and engage with their community on an equal basis with others.^[129]

According to the CRPD Committee, the core elements of the right to live independently and be included in the community require states parties to “develop a concrete action plan for independent living for persons with disabilities within the community, including taking steps towards facilitating formal supports for independent living within the community.”[130] The right to access individualized, assessed support services is an economic, social, and cultural right that states parties need to progressively realize by taking steps to the maximum of their available resources.[131]

Support services should be “available, accessible, affordable, acceptable and adaptable to all persons with disabilities” and be “assessed using a personalized approach and tailored to the specific activities and actual barriers to inclusion in the community that persons with disabilities face.”[132] States should also make sure that personnel working in disability-related services are adequately trained on independent living in the community.[133] The CRPD Committee has indicated that such support should extend beyond mere assistance; it should facilitate choice, control, and freedom over the lifespan of a person with disabilities.^[134]

Age-based restrictions on support for independent living can have far-reaching adverse impacts on the exercise of fundamental rights, such as the rights to have children, to work, and to education.[135] While Uruguay’s programs are important steps toward the realization of these rights, its restriction of access to the Personal Assistants Program based on age is likely to lead to arbitrary results. While the government’s rationale is that certain age ranges are likely to correlate with “dependency” or greater need, in practice, those ranges risk excluding many people who may have a greater need for access to the program than those included, potentially leading to arbitrary outcomes.[136] 

There is also a robust body of research documenting that means-tested or so-called poverty targeted social protection programs, as a result of their design and implementation, are expensive, error prone, exacerbate social divisions and mistrust in government, and fail to adequately protect rights.^[137]

From a rights-based perspective, Uruguay should work toward progressively providing universal coverage based on need. To the extent it engages in targeting of benefits meanwhile, it should ensure that eligibility criteria are objective, reasonable, and transparent, and avoid the stigmatization of beneficiaries.

Human Rights Model of Disability and Support for Independent Living

Under the human rights-based model of disability enshrined in the CRPD, the state’s role in administering support should focus on enabling that person to lead an independent life.^[138]

Unlike medical and charity models of disability, which focus on the deficits of the person with a disability, the human rights model recognizes disability as a relational concept; that is, it understands disability in relation to the person’s environment and society.^[139] It acknowledges that different people with disabilities may require different forms of support to lead an independent and autonomous life. Under this approach, any determination for support should be tailored to the individual, as opposed to a one-size-fits all assessment, by identifying not just their personal requirements, but also the social, attitudinal, and environmental barriers they face.^[140]

Independent living is inextricably linked to the enjoyment of a wide range of other rights, including the rights to freedom of expression, to form a family, and to participate in community life.^[141] Without support for independent living, many people cannot exercise these rights, effectively denying them the opportunity to contribute to and engage with society on an equal basis with others.[142]

Involvement of People with Disabilities in Support Services Design and Implementation

A core principle of international disability rights is the need for the active participation of people with disabilities in all decisions that concern them, including support services.^[143] This is important because when people with disabilities lead and manage support services, they bring first-hand knowledge that can make these services more responsive and tailored to the needs of the disability communities they serve.^[144] Such participatory governance ensures that policies and programs consider the realities of those who will use them, thereby fostering empowerment and increasing their effectiveness and relevance.^[145]

In fact, the CRPD directs states parties to consider disability in all policies and to ensure that people with disabilities are given the same consideration as others before the law.^[146] In addition, to account for disabilities, such a policy should adopt a gender and life-course perspective in recognition of the unique needs and rights of women, children, and adolescents with disabilities.^[147]

 

Recommendations

To the Congress of Uruguay

• Reform Law No. 19353, which establishes the National Integrated Care System, to:

  • Decouple the concept of “personal assistance” from “dependency,” and explicitly establish the right to independent living for people with disabilities and older people;

  • Add “support for independent living” as a form of assistance for adults with disabilities;

  • Broaden support for daily activities to include assistance in decision-making or activities related to caring for children

  • Increase the number of hours for and days on which personal assistance can be received, including on weekends, on government holidays, and through alternative coverage during the regular personal assistant’s vacations, allowing for flexibility to cover the needs of the individual requiring assistance; and

  • Create a government-funded mechanism for organizations of people with disabilities to provide personal assistance services, modeled after centers for independent living, that are managed mostly, if not entirely, by people with disabilities.

• Reform the civil legislation of Uruguay, including notary legislation, to recognize the right to full legal capacity of all people and their right to access supported decision-making.

To the National Institute of Employment and Vocational Training (INEFOP)

• Establish guidelines that require the government to proactively invite organizations of people with disabilities, according to international human rights law, standards, and principles, including the right to independent living, and that allow such organizations to directly participate in developing the content for the basic dependency care course for aspiring personal assistants.
• Develop and implement mandatory training and coaching programs for personal assistants to cover the needs of people with different disabilities recognized by international law, including people with physical, sensory, developmental, intellectual, and psychosocial disabilities (or mental health conditions).
• Develop and implement mandatory training and coaching programs specifically for personal assistants for people with disabilities with high-support needs.

To the Ministry of Social Development

• Publicly demonstrate how the government is using the maximum of its available resources to provide personal assistant services to the broadest possible number of people with disabilities, and develop a public plan outlining how the government will, as expeditiously and effectively as possible, increase the level of support to cover the full costs, ensuring that all people with disabilities can access adequate support to live independently and in the community, without limitations based on age, income, and so-called severity of dependency.

• Review the age-based restrictions on its personal assistants program and work progressively to the maximum of its available resources toward making its programs that provide support for independent living, including the Personal Assistants Program, universal on the basis of a person’s needs.

• Eliminate the requirement to consider the income of the family of any adult applying for the service so only the income of the individual requiring assistance is used to determine eligibility.

• Create oversight and accountability mechanisms, involving the direct participation of organizations of people with disabilities, to monitor the services provided by personal assistants and resolve disputes between individuals requiring assistance and personal assistants.
• Conduct studies on people with disabilities and older people living in institutions to:
  • Determine their number and needs so they can exercise their right to live in the community; and
  • Lead to the closure of institutions and sufficient investment in independent living, including adequate supports, so people can live in the community.

 

Acknowledgments

The report was researched and written by Carlos Ríos-Espinosa, associate director in the Disability Rights Division.

It was edited by the senior editor in the Disability Rights Division and Elizabeth Kamundia, acting director of the Disability Rights Division. Babatunde Olugboji, deputy program director, and María McFarland Sánchez-Moreno, senior legal advisor, provided programmatic and legal reviews, respectively.

The following Human Rights Watch staff provided specialist reviews: Bridget Sleap, senior researcher on the rights of older people in the Disability Rights Division; Santiago Mena, researcher in the Americas Division; Rachel LaFortune, researcher in the Women Rights Division; Zama Neff, director of the Children’s Rights Division; and Sylvain Aubry, deputy director of the Economic Justice and Human Rights Division.

Subhajit Saha, senior coordinator in the Disability Rights Division, provided editorial assistance as well as production assistance and support. The layout and production were done by Ivana Vasić, graphic designer; Travis Carr, publications officer; Jose Martinez, administrative officer; and Fitzroy Hepkins, senior administrative manager.

Human Rights Watch thanks Raquel González Bernech, Martin Nieves, and Carla Chiapini for sharing their knowledge and expertise on the care economy and the rights of people with disabilities in Uruguay.

Most importantly, we thank the people with disabilities in Uruguay whose courage and dignity in sharing their stories and experiences made this report possible. We recognize and share their hope that this report will contribute to protecting the rights of people with disabilities in Uruguay.

Summary

I grew up as an orphan. Both my parents died when I was young. My older brother left me with our [maternal] grandparents when he was a teenager. My relatives abused me all the time. Maybe even dogs were treated better than I was….

Both my uncle and grandfather raped me. My uncle started it when I turned 16. He would take me to the shed and rape me there. Once he almost got caught by his own little daughter – she came upon us and asked what he was doing. He closed his hand around my neck and whispered: “Laugh!” I started laughing. And he said to his daughter he was just tickling me.

Later my grandfather started doing that, too. He would take me to “bathe” and then leave me in the shed to sleep. He would tell everyone to leave me alone, said that I was resting there. My grandmother maybe knew something was happening, but she hated me, she blamed me. She would always yell at me, abuse me with her words, beat me.[1]

This is the story of Jazgul A., a 27-year-old woman from a village in the south of Kyrgyzstan, who was living in the country’s only safehouse for women and girls with disabilities when Human Rights Watch first spoke with her in November 2021. She has an intellectual disability and limited mobility that had not been assessed or supported before she came to live at the safehouse. It is difficult for her to speak because of a light speech impairment coupled with how traumatic her experience was, but she insisted on telling her story.

The violence she experienced at the hands of her closest relatives could have continued indefinitely had her brother not decided to visit her after many years away. He found out how her relatives were mistreating her: she had not accessed any education, was kept at home and socially excluded, and severely beaten, often raped, and verbally abused by all those living in the house.

When Jazgul was able to reach the safehouse in February 2021 with the help of her brother and “Ravenstvo” – an organization of people with disabilities (OPD) – she had no understanding of personal and menstrual hygiene, could not speak in long sentences, could not write, or do math, and resisted any attempt to help her, disability rights activists told Human Rights Watch.[2]

It took her about a year to start feeling safe enough to open up and socialize.

Jazgul’s experiences of severe abuse at the hands of family members are sadly not isolated or unique. The problem of domestic violence against women and girls with disabilities in Kyrgyzstan is serious and widespread. Urgent action is needed by authorities to address these acute concerns and support survivors of such abuse.

Disability rights advocates and experts told Human Rights Watch[3] that while people with disabilities in general are not aware of their rights and obligations, which contributes to their social exclusion and inadequate social integration, women and girls with disabilities face disproportionately more discrimination. Although there are no official statistics, these experts noted that women and girls with disabilities have less access to education, work, and socialization in their daily life, compared to boys and men with disabilities, and are more often subjected to psychological and sexual abuse both inside and outside the home.[4]

In Kyrgyzstan, gender-based violence against all women both in the home and outside is widespread, and its underreporting and normalization in society are a serious concern.[5]

While the authorities do collect data on domestic violence, it is not disaggregated by specific populations, including women and girls with disabilities. Official statistics on victims and survivors of sexual violence, domestic violence, and forced and child marriage practice do not include any information about disability, nor are there any official or non-governmental studies that accurately measure the prevalence of the various types of domestic violence against women and girls with disabilities, although there is disaggregation by age.

Only the most egregious cases, such as that of Jazgul, make it to the media and receive some attention from law enforcement and judicial authorities in the country.[6] Almost all violence and abuse by caretakers, family members, partners, or former partners against women and girls with disabilities goes unreported and unaddressed.

For these reasons Human Rights Watch undertook research between February 2022 and July 2023 in several regions of the country.

In 52 interviews with survivors of domestic violence who have a disability, service providers, community leaders, and experts, Human Rights Watch documented cases of long-term physical, psychological, sexual, and economic violence committed by their caregivers, family members, partners, or former partners.

Human Rights Watch heard stories of women and girls with disabilities being beaten, raped, sexually exploited, neglected, humiliated repeatedly, forcibly kept in their homes, banned from communicating with anyone other than family members, left without assistance for movement or personal hygiene, socially excluded, and deprived of access to education and welfare payments by relatives who control their financial lives. As a 23-year-old woman now living at the Center for Independent Living in Bishkek told us:

I am nobody for my family; my relatives use my money. My welfare card has long since been theirs, I have not seen it for so long. I wear old hand-me-downs from my siblings and I am the scapegoat when my family needs to let off steam. They mostly hit me in the head when beating me because no one will notice it. I don’t want to go back home, nobody is waiting for me there, they don’t care about me. I want to continue learning skills, like I do here [at the school for independent living], to live independently and be an activist.[7] 

The risks of violence increase when people are made dependent on others and cannot access their rights. Both women and men with disabilities in Kyrgyzstan face isolation, physical and communication barriers, prejudice, and paternalism that deprive them of agency and limit their access to social assistance or specialized services for survivors of violence, as well as basic services such as education.

However, women and men experience disability differently: while encountering the same obstacles, women with disabilities also face systemic and compounding gender discrimination throughout their lives. As a result, the risks of psychological, verbal, physical, sexual, and economic abuse and exploitation are higher for women with disabilities, and when they occur, they are often present and hidden for long periods of time, which is consistent with experiences of gender-based violence by women without disabilities.[8]

Venera J, 35, a participant at an independent living summer camp organized by the Kyrgyz NGO Ravenstvo, told Human Rights Watch that since her childhood her parents verbally/ emotionally abused her and forbid her from participating in society due to stigma: “My parents did not allow me to attend school, make friends, they said I would never have children and that no one would want to marry me. They wanted me to stay home forever. I have lived in constant isolation until now.”

The subordinate position of women and girls coupled with bias and negative attitudes towards people with disabilities in Kyrgyz society increase the risk of violence and abuse for women and girls and girls with disabilities. The intersection of gender and disability marks the violence with specific characteristics. For example, deprivation of aids for independent mobility or deprivation of basic means of communication can lead to complete social exclusion, and denial of assistance with personal hygiene, especially problematic and potentially harmful during the menstrual cycle, is demeaning and can create health risks and deepen social isolation. NGO social workers Human Rights Watch interviewed mentioned cases of girls immobilized as a result of their disability staying home in bed for days with unchanged diapers in a room that was rarely cleaned.

International human rights standards require governments to guarantee equal rights for people with disabilities and ensure they can live free from violence and neglect, including by family members, partners or former partners, and ensure their access to justice. The Preamble of the Convention on the Rights of People with Disabilities notes that “women and girls with disabilities are often at greater risk, both within and outside the home, of violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation.”

In a welcome step, in 2019 the government of Kyrgyzstan ratified the Convention on the Rights of People with Disabilities (CPRD) following eight years of preparatory work. By ratifying the treaty, the Kyrgyz Republic has committed to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity”. However, Kyrgyzstan’s national legislation falls short of a CRPD-compliant legislative framework for both children and adults with disabilities.[9] For example, it does not include normative provisions for “reasonable accommodation” (modifications or adjustments to a product, service, or environment to enable use by individuals with disabilities) or for “universal design” (a design approach that considers the needs of all individuals, including those with disabilities, from the initial stages of product or service development). As a result, there is no legal framework in Kyrgyzstan that requires accommodation for the needs of people with disabilities in medical or educational facilities, or in transportation or rehabilitation services. And there are few disability-specific measures to ensure protection from domestic violence, access to justice and to services for survivors.

Neither existing legislation dealing specifically with protection of women from domestic violence, nor the broader legal architecture addressing protection of individuals from violence more generally takes into account the intersectional needs of women and girls with disabilities. The existing legal framework is ableist as it presupposes mobility and other physical abilities for these laws to be applied to women with disabilities. While many women and girls without disabilities are also financially dependent on their intimate partners or family members, they are more likely to have the physical capacity to leave a site of abuse and find shelter elsewhere; at present, women with various forms of disabilities are quite literally physically dependent on family members who might be perpetrators of violence towards them.

Inadequate laws, burdensome and discriminatory evidentiary standards, as well as the inaccessibility of the justice system make it extremely difficult for women with disabilities in Kyrgyzstan to protect themselves from domestic violence and to seek justice for it. This is exacerbated by their lack of access to targeted services from existing crisis centers and shelters, as well as inadequate and almost exclusively medicalized approaches to disability prevalent within state agencies and civil society.

There is momentum in Kyrgyzstan to change this. The Law on the Rights and Guarantees of People with Disabilities, adopted in 2008, is currently under consideration for modification by a group of Kyrgyz MPs. According to disability rights activists, the new law, if passed, would change the very architecture of disability support in Kyrgyzstan from a medical and charity-based model to a social and human-rights based approach. At the time of writing, legislation on protection from domestic violence, criminalized in 2019, was also under reconsideration in the Kyrgyz parliament.

The Kyrgyz government and society should seize the opportunity to ensure equal access to all human rights for women and girls with disabilities, including their right to be free from domestic violence.

In order to do this, Kyrgyzstan should align its Law on Rights and Guarantees of Persons with Disabilities and the Law on Protection from Domestic Violence with the UN Convention on the Rights of Persons with Disabilities and the UN Convention on Elimination of all forms of Discrimination against Women, emphasizing reasonable accommodations and the right to legal capacity, and transitioning from a medical to a human rights model of disability. Strengthening prevention and protection measures against domestic violence for women and girls with disabilities by ensuring accessibility and adapting standard procedures to their needs is essential. Laws and policies should also ensure rigorous investigation and prosecution of domestic violence cases against women and girls with disabilities and provide accountability for abusers/perpetrators and appropriate penalties for law enforcement and judicial officials who fail to investigate or prosecute such cases.

Key Terms

Consistent with the language of the Convention on the Rights of Persons with Disabilities (CRPD), this report refers to “women and girls with disabilities” rather than “disabled women and girls.”[10] The CRPD acknowledges that disability is “an evolving concept,” but also stresses that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.”[11] As explained by the World Health Organization (WHO), “defining disability as an interaction means that ‘disability’ is not an attribute of the person.”[12] Progress on improving social participation can be made by addressing the barriers that hinder persons with disabilities in their day-to-day lives.

The terms below acknowledge the complex interactions between a person and social norms that comprise the experience of disability. Common language references to disabilities also appear in direct quotes when this language has been used by interviewees.

Cerebral palsy: Cerebral palsy is a neurological condition that affects body movement, muscle control, muscle coordination, muscle tone, reflex posture, and balance. It can also impact fine motor skills. Every case of cerebral palsy is unique to the individual. Other complications such as cognitive delay, seizures and vision or hearing impairment also commonly accompany cerebral palsy.[13]

Domestic violence: All acts of physical, sexual, psychological or economic violence that occur within the family or domestic unit or between former or current spouses or partners, whether or not the perpetrator shares or has shared the same residence with the victim.[14]

Intellectual disability: Characterized by significant limitations in intellectual functioning (reasoning, learning, problem solving) and adaptive behavior, which cover a range of everyday social and practical skills. Intellectual disability is a subset within the larger world of developmental disability, but the boundaries often blur as many individuals fall into both categories to differing degrees and for different reasons.[15] Examples of cognitive disabilities include Down Syndrome and some forms of cerebral palsy.

Legal capacity: The right of an individual to make his or her own choices about his or her life.[16] The concept of legal capacity encompasses the right to personhood, being recognized as a person before the law, and legal agency, the capacity to act and exercise those rights.[17]

Organizations of Persons with Disabilities (OPDs): Organizations where persons with disabilities constitute the majority of members and the governing body and which work to promote self-representation, participation, equality, and integration of all people with disabilities.[18]

Psychosocial disability: The preferred term to describe people with mental health conditions such as depression, bipolar, schizophrenia, and catatonia. The term “psychosocial disability” describes conditions commonly referred to—particularly by mental health professionals, courts, lawyers, corrections officials, and media—as “mental illness” or “mental disorders.” The Convention on the Rights of Persons with Disabilities recognizes that disability is an evolving concept and that it results from the interaction between people with impairments and social, cultural, attitudinal, and environmental barriers that prevent their full and effective participation in society on an equal basis with others. The term “psychosocial disability” is preferred as it expresses the interaction between psychological differences and social or cultural limits for behavior, as well as the stigma that society attaches to people with mental impairments.[19]

Methodology

This report investigates domestic violence and neglect of women and girls with disabilities in Kyrgyzstan, focusing on lack of adequate support and protection by the government of Kyrgyzstan. It is based on Human Rights Watch research conducted in February-March, May, August-September 2022, and June-July 2023 in three regions in Kyrgyzstan: Bishkek and Issyk-Kul in the north and Osh in the south.

These cities were selected following consultations with local community-based organizations and were chosen to enable us to interview survivors representing diverse socioeconomic and ethnic backgrounds. Interviewees were mostly with ethnic Kyrgyz women, and a smaller number of them were ethnic Russian. No ethnic Uzbek respondents were available for interviews, and the NGOs that facilitated many of the interviews did not work with this population. Mostly resident in Southern Kyrgyzstan, ethnic Uzbeks continue to be socially isolated from ethnic Kyrgyz, following interethnic conflict in 2010. However, experts Human Rights Watch talked with were familiar with the experiences of ethnic Uzbek women with disabilities and have shared some of their stories.

Human Rights Watch interviewed 35 female survivors of domestic violence and neglect ranging in age from 18 to 55. Although the research refers to women and girls with disabilities, no one under the age of 18 was interviewed – the reference to girls is in recognition of many of the violations that have happened when these women were under 18. Although, according to UN statistics,[20] globally 46 percent of people aged 60 and older are people with disabilities compared to 15 per cent of the total population; Human Rights Watch did not interview any older women with disabilities due to lack of access. Older women and men, especially with disability, in Kyrgyzstan are subjected to greater social isolation with fewer opportunities for mobility, and rarely are in contact with organizations working with people with disabilities.

The majority of those interviewed were women with pre-existing or acquired physical, developmental, intellectual or psychosocial disabilities as a result of repeated violence.

Respondents had experienced physical, psychological, or economic violence, and some had also experienced sexual violence or a combination of these types of violence. Fourteen reported abuse by their parents, twelve by their siblings or sibling in-laws, and nine by other close relatives. Survivors came from Chuy, Issyk-Kul, Jalal Abad, Naryn, and Osh provinces of Kyrgyzstan. They came from both rural and urban areas, but most did not have access to education or had only primary level education. A small number of interviewees in the 40-to-55-year bracket had graduate degrees.

Human Rights Watch identified survivors with the support of local community-based nongovernmental organizations (NGOs). Interviews were conducted in Russian or Kyrgyz.

Interviews with survivors were conducted at places of their choosing, including a shelter, NGO offices, cafes, or private rooms at conference centers. Human Rights Watch informed all interviewees of the purpose of the interview and how information collected would be used and received verbal consent before conducting the interview. All respondents were informed of their right to stop or pause the interview at any time. No incentives were provided for interviewees, although in cases where the interview took place at a café Human Rights Watch paid for the meal.

Human Rights Watch referred survivors to available services where appropriate and possible and took care to minimize re-traumatization of interviewees.

Human Rights Watch also spoke with 17 representatives of law enforcement and the criminal and civil justice systems, public service providers, NGOs, and community leaders. These included six staff members of crisis centers and a shelter, three activists, as well as four representatives of the police, three lawyers, and one sign language interpreter. Four representatives of international NGOs and United Nations agencies were interviewed. Additional information was gathered from published sources, including laws, government data, United Nations documents, academic research, and media.

Human Rights Watch submitted written information requests to the Internal Affairs, Social Development, Health, and Justice ministries, as well as to the Prosecutor General’s Office in July 2022; no written responses had been received at the time of writing. Human Rights Watch met with representatives of the Ombudsman for Human Rights, and the Interior Affairs, Labour, and Social Development ministries in August 2022 and their perspectives have been reflected in the report.

Human Rights Watch, in August 2022 and in February 2023, also made unannounced visits to a small number of police stations in Bishkek and Osh and undertook informal interviews with on-duty police officers on areas of the research.

Human Rights Watch wrote to the Ministry of Labor, Social Welfare, and Migration, Ministry of Interior, and Prosecutor General’s Office in November 2023 with a summary of the research findings and a request for input and comments. Responses were received from the Ministry of Labor and the Prosecutor General’s Office and are reflected in the report.

All survivors’ names are pseudonyms and most identifying details have been withheld for their security and privacy. Pseudonyms are represented by a first name and initial at the first mention, and then simply the pseudonymous first name. Where actual names and the exact titles of expert [non-survivor] interviewees are used, Human Rights Watch received express consent to do so. However, in some cases these interviewees asked not to be identified, in which case a pseudonym was used, following the same system.

Interviewing women with disabilities, the majority of whom had experienced neglect, which included lack of both formal and informal education and socialization, surfaced an ethical dilemma of knowledge traumatization – i.e., the act of categorizing their experience as survival of violence and/or abuse, which until the interview, the respondents may not have identified as such. This raises the issue of a researcher’s responsibility towards respondents that should extend beyond data collection and analysis, to possibly include human rights education of the respondents and advocacy for their rights with state bodies.

A specific methodological issue that arose regarding this dilemma was the need to reformulate the interview questions in such a way as to avoid direct leading questions, while leaving space for clarifications. One way this was done was by asking how a certain experience made the respondents feel to gauge whether the respondent registered the experience as an abusive one or not. In cases when the experience clearly presented as an abusive one to the researcher, but the respondent did not register it as such, the researcher made a note of it to herself. These issues were later brought to the attention of the grassroots activists that helped organize most of the interviews with women with disabilities for their future use in empowerment or advocacy work with this community.

I. Background

Kyrgyzstan is a landlocked country in Central Asia with a population of 7 million people. The country has a vibrant socio-political environment with an active civil society, political opposition, and independent media. However, these conditions are increasingly under threat from the government’s attempts in recent years to suppress freedom of expression and assembly. There are also serious concerns regarding the lack of accountability of law enforcement agencies and a lack of independence in the judiciary. 

Gender-based Violence

Kyrgyzstan’s cultural fabric is interwoven with traditions that influence societal dynamics, including notions of family honor, patriarchal norms, and customary practices.

Gender-based violence in Kyrgyzstan is a deeply entrenched systemic issue, stemming from the subordinate status of women within family and societal structures. Factors such as women’s economic dependency, limited employment opportunities, and restricted involvement in decision-making processes contribute to this problem. However, accurately assessing the extent of gender-based violence in the country is challenging, as incidents remain underreported due to social pressures, geographical and resource constraints of available crisis support centers, and the ineffectiveness of existing legal mechanisms that often fail to break the cycle of violence.

In reports in 2015 and 2019, Human Rights Watch shed light on the alarming failure of the Kyrgyz government to provide services and support for survivors of domestic violence, investigate and prosecute cases, and hold perpetrators accountable.[21] The reports detailed distressing cases of severe physical, sexual, and psychological domestic abuse, with women recounting horrifying incidents of violence inflicted upon them by their partners, former partners, or family members. These acts included brutal physical assaults, such as head pounding, fractures, stabbings, and threats of murder. Some survivors also revealed they were forced into marriage, often through abduction, even when they were below the legal age of 18. 

The prior reports also found that survivors of domestic violence in Kyrgyzstan face a multitude of obstacles in seeking help, protection, and justice. Social pressures to preserve family integrity, coupled with shame and stigma, economic dependence, and the fear of retaliation by abusers, deter survivors from reporting incidents. Insufficient support services, such as shelters, and reluctance or hostility from law enforcement and courts, who often refuse to believe the survivors, further compound the difficulties that survivors encounter. This situation raises significant concerns, and places Kyrgyzstan in violation of both its own domestic violence legislation and its binding international human rights commitments.

Despite high rates of domestic violence against women and girls in Kyrgyzstan, few cases are reported, and even fewer are prosecuted. Government data highlights that only a fraction of domestic violence complaints reported to the police make it to court, with many cases considered administrative offenses rather than crimes, resulting in lenient penalties.[22] 

Domestic Violence Against Women and Girls with Disabilities

These issues are further exacerbated for people with disabilities, and even more so for women and girls with disabilities. 

According to information provided by the Ministry of Labor, Social Welfare, and Migration, more than 212,000 people with disabilities were registered with the social protection system in Kyrgyzstan as of 2023,[23], of which, according to the Kyrgyz national statistics committee, about 47 percent were women and girls.[24]  Registration with the system affords people with disabilities access to medical benefits and welfare payments provided by law for “socially vulnerable” categories of population. It is noteworthy that not all people and children with disabilities are registered with the social protection system, which is reported to be corruption-prone, with parents requested to pay an informal fee (effectively a bribe) to the disability assessment committees to be able to receive a disability certificate[25].

In 2011, Kyrgyzstan signed the UN Convention on the Rights of Persons with Disabilities (CRPD), ratifying it in 2019 and subsequently approving national programs that seek to align with CRPD principles. While the country does provide disability benefits and basic social services such as welfare payments including disability pension, domestic assistance for those living alone, free rehabilitation and medical care in inpatient institutions, free provision of prosthetic and orthopedic products, provision of technical and special means for mobility in areas like employment, education, or access to justice, it lacks programs to provide comprehensive support to people with disabilities. Many public buildings, including hospitals, lack necessary accessibility features – the latter is especially pronounced in the system of justice, which does not provide reasonable accommodations for people with disabilities, including accessibility of complaint mechanisms and of information (e.g. material in easy-to-understand formats or in Braille). Activists highlight a lack of political will and leadership as key factors contributing to the stagnation in implementing disability rights reforms.

For individuals with disabilities in Kyrgyzstan, the risk of experiencing violence is amplified when they face additional barriers that limit their autonomy, legal capacity, and civil rights. These barriers encompass restricted mobility, isolation, communication challenges, social prejudice, and a paternalistic approach to social assistance that emphasizes charity rather than recognition of their rights. This combination of factors presents formidable hurdles for people with disabilities when dealing with various social and legal matters, including accessing justice and asserting their rights within society.

Negative attitudes significantly impact social relationships, creating formidable barriers for women and girls with disabilities and depriving them of the opportunity to lead a life in accordance with their desires and beliefs. Civil society experts and crisis center professionals point out instances of complete isolation experienced by women and girls with disabilities, particularly in rural areas and remote regions, where prevailing prejudices foster a sense of shame regarding the presence of a family member with disabilities.

Consequently, in certain cases, women and girls with disabilities are limited to communicating solely with their immediate family members, forbidden from interacting with visitors and house guests, which compels them to conceal themselves within their homes, restricts their mobility, and denies them the freedom to leave their residences.

More often than not, women and girls with disabilities are deprived of education due to prevailing prejudices that lead to their social isolation as well as systemic issues with lack of access to inclusive education, which is in violation of the country’s Law on Education.[26]

Legal and Policy Framework

Framework on Rights of People with Disabilities

The legal and policy framework concerning the rights of people with disabilities in Kyrgyzstan is based on what experts refer to as the ‘medical model’, where disability is perceived as the result of a physical condition, which reduces the individual’s quality of life and causes disadvantages to the individual.[27] This model stigmatizes people with disabilities with its dichotomy between ‘normal’ and ‘not normal’ bodies and its exclusive focus on impairment.

The main law that regulates the rights of people with disabilities is the Law on the Rights and Guarantees of Persons with Disabilities adopted in 2008, and amended in 2009, 2016, and 2017; it is currently once again under reconsideration. [28] The law defines disability as “health impairments with persistent disorder of bodily functions that lead to a complete or significant loss of ability to work or significant restrictions for independent living.” The law also defines a person with “limited health functioning” (a legalistic euphemism for a person with a disability) as “a person with health disorders with persistent impairment of bodily functions resulting from illnesses, trauma, or defects, which lead to limitations of functioning and call for social protection and rehabilitation”. Together with four other specific laws, this law fundamentally establishes the right of adults and children with disabilities to disability benefits, which include disability pension, some forms of medical treatment and rehabilitation, and provision with personal assistants.[29]

While adoption of the law and its subsequent amendments shifted the policy away from Soviet-era social protection laws that identified people with disabilities as “invalids” and usefully introduced concepts of disability discrimination, accessibility, political rights, and reasonable accommodation, it falls severely short of fully embracing the normative framework outlined by the UN Convention on the Rights of Persons with Disabilities. There are however efforts to bridge this gap.

According to the 2023 Country Report of the UN Partnership on the Rights of Persons with Disabilities,[30] the new draft of the Law on the Rights and Guarantees of Persons with Disabilities currently under consideration attempts to move away from the medical model and towards the social model, recognizing various rights of persons with disabilities, such as the right to social protection and guarantees, and highlighting the full legal capacity of persons with disabilities on an equal basis with others. However, it falls short of how the legal capacity of persons with disabilities would be protected and seems, in contravention of the CRPD, to promote segregation of adults and children with disabilities by including provisions for special services and institutional care.

In February 2023, the Kyrgyz government presented a State Program, “Accessible Country,” for 2021-2030 which boasts a comprehensive set of policies aimed at guaranteeing persons with disabilities in Kyrgyzstan full realization of their right to accessible public spaces, including education, health care, employment, as well as better access to basic social programs and opportunities.

In 2023 the Ministry of Labor and Social Protection presented a draft resolution that seeks to align the socio-medical examination for disability assessment with standards of the CRPD, marking the state’s further transition from a medical model of disability support to a social one.

In 2022, the government of Kyrgyzstan signed the Regulations on Personal Assistants to Children and Persons with Disabilities in need of constant care, which establishes payments for services of a personal assistant, who is defined as a parent, legal representative, close relative, or another person no older than 65 years old, who can aid. Before ratification of the CRPD, paid assistance was only provided for children with disabilities.

In 2019, the Kyrgyz Republic adopted the Concept and Program on Inclusive Education for 2019–2023, which if carried out in a timely manner and with adequate funding could have proved to be an important step toward making inclusive education a reality in Kyrgyzstan However, due to lack of funding and delays in passing legislation to implement the vision of the concept paper, less than 20 percent of planned activities have been initiated by the first half of 2023.[31]

However, despite this progress, there are still areas of significant concern for the rights of people with disabilities, especially with regards to recognition of their legal capacity.

The 1996 Civil Code[32] of the Kyrgyz Republic establishes that every person has the right to full legal capacity upon turning 18, however the Code provides for deprivation of their legal capacity by a court in the event a person has a psychosocial disability and is deemed not to understand the meaning of his or her actions or manage them. If a court deprives a person of legal capacity, the person will be appointed a “guardian” who “is the representative of their ward before the law and carries out all transactions in their name and in their interest,”[33] People who have been deprived of their legal capacity lose their right to vote, marry, open a bank account, make medical decisions in crisis, and other areas of life – all in contravention of the CRPD.

As this report further states, the concept of deprivation of legal capacity of persons with disabilities may lead to them being perceived as unreliable witnesses when seeking justice, being denied their rights, facing abuse in the medical system, and other consequences.

According to a 2021 Situation Analysis on Children and Adolescents with disabilities by UNICEF in Kyrgyzstan, the process of early identification and intervention, where available, lacks coordination, specialized knowledge, and parental involvement.[34] Parents often face a complex, costly process with limited support to identify their child's disability and their support needs. Lack of information about rights, incorrect diagnoses, bribery requests, and administrative complexity compound the challenges.

Although the health care system aims to provide quality services tailored to individual needs, people with disabilities are not treated as service users similar to the general population. Healthcare professionals often view them impersonally as “carriers of diseases” rather than people experiencing disability.[35]

The UNICEF situation analysis also found that the governmental rehabilitation program lacks essential expertise and services, with outdated medical rehabilitation and limited access to social, psychological, educational, and other forms of rehabilitation due to resource shortages. Obtaining age-appropriate assistive devices is difficult, particularly in rural areas, due to a lack of person-centered approaches and prolonged waiting times. People with disabilities are often not aware of their rights to access these programs and support.

In violation of the UN Convention on the Rights of the Child, which Kyrgyzstan ratified in 1994, the public education system segregates mainstream and special education, impeding access to education for children with disabilities, contingent on disability registration forms and the approach taken by schools’ individual staff members. A 2020 Human Rights Watch report titled Insisting on Inclusion: Institutionalization and Barriers to Education for Children with Disabilities in Kyrgyzstan, based on in-person visits to institutions for children with disabilities and extensive interviews with children with disabilities, their parents, institution staff and experts, describes abuses in state care and barriers to education that often lead to segregation and isolation of such children, increasing their risk of physical or psychological violence.[36]

Adolescents and young adults with disabilities who have experienced institutionalization face barriers to employment due to a lack of tailored transition programs and vocational training opportunities, insensitive public employment services, and weak reinforcement of reserved workspaces quotas.

Negative societal attitudes towards disabilities persist, where people with disabilities are perceived as deviant, incapable, defective, unable to live independently and in need of care, as well as dangerous with higher risk of exhibiting aggression and inappropriate behavior, especially concerning people with intellectual and psychosocial disabilities.[37] Service providers often are unaware or guided by traditional models. Families lack information for informed decisions, potentially subjected to biased support due to factors like residence and social status. More broadly, the existing social services provided to people with disabilities are neither sufficiently developed, nor in line with the CRPD.[38] The main factors limiting adequate development and implementation of such services are general poverty within the country, lack of state resources resulting in a shortage of social workers and underdevelopment of universally designed infrastructure, as well as limited understanding on the part of authorities, expert bodies, and families themselves of the needs and rights of people with disabilities, exacerbated in the cases of women and girls with disabilities.[39]

The situation of women and girls with disabilities living in rural areas is even more acute, as the few state-supported centers for rehabilitation and education are largely located in the two biggest cities – Bishkek and Osh. Physical access to recreational facilities, healthcare, social welfare, state institutions, and banks is extremely limited.[40]

State Protection of Women and Girls from Domestic Violence

Kyrgyzstan’s legal framework aimed at tackling domestic violence has been reviewed and updated in recent years. In 2017 Kyrgyzstan adopted a Law on Protection from Domestic Violence, which led to a spike in the issuance of protection orders, which provide short-term, immediate protection from abuse. Although certainly a step in the right direction, the orders are rarely enforced, or violations punished. Human Rights Watch’s reports in 2015 and 2019 found that survivors generally needed support from nongovernmental organizations in accessing the system of protection orders in order for their complaints to be heard, and in accessing justice.[41]

In January 2019, the government made further strides in addressing domestic violence by introducing a "Code of Misdemeanors," which for the first time classified domestic violence as a criminal offence. In the previous legislation it was treated as an administrative offense. However, this re-categorization has done little to prevent domestic violence, as under the new Code, authorities can still close cases on the basis of reconciliation between the parties involved. In the previous, separate, iterations of domestic violence legislation, an administrative offence led to an administrative arrest, which many survivors found to be the only respite from abuse, even if for a few days.

Kyrgyzstan also in 2016 passed a law against child and forced marriage. Again, despite this positive step, lack of enforcement means the practice remains widespread.

In 2022, the 2017 Law on Protection from Domestic Violence came under revision due to the general legal inventory process launched by the government in 2021. A draft of the new Law was in circulation at the time of writing, but, according to disability rights advocates, the draft still lacked any specific reference to women and girls with disabilities as being especially at risk. The draft of the Law had not been considered in parliament at the time of writing.

Despite these steps forward, there remain significant gaps in the protection of women and girls from violence.

Human Rights Watch’s previous research on domestic violence found that weak enforcement of existing laws, such as inadequate implementation of protection orders, contributes to the ongoing exposure of women and girls to violence. Survivors often required support from non-governmental organizations for their complaints to be effectively addressed, and service providers reported that police rarely enforce protection orders. Furthermore, authorities may close cases following reconciliation between survivors and perpetrators, perpetuating a culture of impunity for domestic violence and putting survivors at continued risk.

The situation is exacerbated by scarce government support for services for survivors of abuse, leaving women and girls without a safety net. To date, there is only one fully state-funded shelter for survivors of domestic violence and it is located in Bishkek.[42]

Despite legislative efforts to improve access to protection orders, the system is often cumbersome and poorly implemented.[43] Lawyers and advocates in Kyrgyzstan note that authorities sometimes dismiss complaints, viewing them as routine disputes between women and men.[44]

Adding to these gaps is the lack of explicit references to persons with disabilities in legislation. Many women and girls with disabilities are physically and financially dependent on family members who, although meant to provide them with support, perpetrate violence against them – making it difficult to report them using the law, including and in terms of the issuance and enforcement of the protection orders.

The omission of specific reference to women with disabilities in the 2017 law, particularly procedural accommodations as prescribed in article 13 of the CRPD on access to justice, has resulted in difficulties for disability rights activists engaging with the police on these issues, where the latter often question the woman or girl’s legal capacity to make decisions. Law enforcement and the judiciary are not trained to handle and fittingly respond to cases of domestic violence against women and girls with disabilities. There are no protocols for police, judicial, medical, or social workers addressing needs of women with disabilities.

Exclusion of People with Disabilities from Coordination Efforts

The Kyrgyz Republic government decree titled “On the procedure for the implementation of protection and protection from family violence,” dated August 1, 2019, provides important mechanisms for protection against family violence, including procedures to ensure coordination among relevant state bodies, provision of assistance to survivors, and intervention programs for perpetrators of domestic violence.

However, these mechanisms do not take into account the specialized needs of women and girls who have disabilities, such as requiring accommodations due to being deaf or blind, or having a psychosocial disability (mental health condition) or “musculoskeletal system” conditions, as specified in the Law of the Kyrgyz Republic "On the rights and guarantees of persons with disabilities" (2008).

The National Action Plan for Achieving Gender Equality in the Kyrgyz Republic for 2018-2020 included “solutions to the problems of gender-based violence” as a priority area for eliminating discrimination and expanding access to justice.[45] The plan identifies goals aimed at strengthening legal and other national mechanisms for assistance to survivors and access to justice in cases of gender discrimination and gender-based violence, and developing a culture of intolerance towards discrimination and gender-based violence. However, once again, gender-based violence specifically against women and girls with disabilities was not included in this gender equality strategic plan, as representatives of the groups working with people with disabilities were not invited for input.

The government’s Urgent Action Plan for the Prevention of Domestic Violence developed during the COVID-19 pandemic in 2020 also did not contain special measures for timely response and prevention of violence against women and girls with disabilities, disability rights experts told Human Rights Watch.[46]

Key Stakeholders

The key government stakeholders in prevention of gender-based violence against women and girls with disabilities are the following:

• Council for the Affairs of Persons with Disabilities under the Government of the Kyrgyz Republic together with the National Council for Women and Gender Development under the Government of the Kyrgyz Republic;
• Ministry of Labor, Social Welfare, and Migration as the authorized state body tasked with implementation of the Law on Rights and Guarantees of Persons with Disabilities to Social Protection;
• Ministry of Health;
• Ministry of Interior Affairs;
• Ministry of Education as the authorized body for information and educational activities in the field of gender development, as well as raising awareness and promoting social inclusion in society;
• National Statistics Committee;
• The Prosecutor's Office of the Kyrgyz Republic, which is authorized to ensure the rule of law, the unity and strengthening of the rule of law, as well as the protection of legally protected interests of the individual, society, and the state;
• Local self-government bodies;
• Council on Women's Rights and the Prevention of Gender Violence under the Speaker of the Jogorku Kenesh of the Kyrgyz Republic and the Ombudsman Institute, responsible for parliamentary control over the observance of constitutional human rights and freedoms of Kyrgyz citizens.

Each of these state and municipal authorities is mandated to advance national strategies and state programs on implementation of the state’s obligations under the UN conventions on the Rights of People with Disabilities and on Elimination of all forms of Discrimination against Women. However, in practice this is complicated by compartmentalization or isolation of these tasks within the framework of each ministry or department so an interagency and intersectoral approach that would consider the specific needs and interests of women and girls with disabilities has proven difficult to implement due to lack of clear coordination mechanisms. Human Rights Watch previously noted the government’s commitment to establishing a coordination mechanism on preventing domestic violence, as required by the 2017 domestic violence law; at time of writing this had still not come to fruition.[47]

In meetings with representatives of the Ministry of Labour, Social Welfare, and Migration, and with the Ministry of Interior Affairs in August 2022, Human Rights Watch noted the need for greater cooperation between the different state bodies identified as responsible by the Law on Protection from Domestic Violence and a lack of dedicated resources on this issue.

In its letter to Human Rights Watch in November 2023, the Ministry of Labour noted that the Ministry provides funding to crisis centers and NGOs working on domestic violence through state funding programs, with 7 million Kyrgyz Som provided to 13 NGOs in 2023. These projects include provision of services to survivors of domestic violence, correctional programs for violent perpetrators, and establishment of safehouses. The Ministry also works with local village committees on prevention of domestic violence by providing them with model provisions that include the legal basis for protection from domestic violence and practical advice and examples of actions that can be taken by the committees. The Ministry also noted the planned development of a project that would provide medical, legal, psychological services to survivors of sexual violence through a “single window.”[48]

In the meeting in August 2022 with Human Rights Watch, Ministry of Labour representatives noted a significant lack of funds and human resources to adequately implement their responsibilities within the Law on Protection from Domestic Violence, as well as concerning their obligations towards people with disabilities.

The Prosecutor General’s office in its letter to Human Rights Watch noted it conducts regular monitoring of implementation of legislation on prevention and protection regarding domestic violence throughout the country. According to their data in 2023, the office conducted 43 monitoring visits, during which they have identified 113 procedural violations on the parts of law enforcement and other responsible officials. This resulted in what the office termed 38 recommendations, one order, four disciplinary investigations, and one breach of the law, with 24 officials ‘held accountable’. The office also noted that work on prevention of domestic violence against women and girls with disabilities in Kyrgyzstan is done as part of the general work on prevention of domestic violence.[49]

The Ministry of Interior representatives shared with Human Rights Watch during the meeting in August 2022 that in 2021, as a result of the “Spotlight Initiative” on tackling domestic violence supported by the United Nations and the European Union, two guides were developed for district police officers setting forth standard operating procedures (SOPs) for responding to reports of domestic violence against women and children.

The SOPs have sections on specificities of working with women and children with intersecting forms of discrimination and violence, which includes recommendations on communication with people with different types of disability, as well as a small table of correct and incorrect linguistic terms. While the publications were distributed to all regional police offices in 2022, and have been seen by Human Rights Watch, the ministry officials could not confirm if these recommendations were used in practice, as the implementation of the guides is not binding.

The Ministry of Interior representatives also noted that there was no disaggregation of data on the basis of disability in domestic violence statistics, although according to article 37 of the Law on Protection from Domestic Violence, there is a requirement for statistics to include socio-demographic data on perpetrators and survivors of domestic violence, which implies disaggregation of data along an expanded set of factors, including disability. However, the ministry officials Human Rights Watch spoke with noted that neither the national nor departmental statistics on domestic violence of the ministry or Prosecutor’s Office includes data on women with disabilities among the survivors of domestic violence.

The ministry officials also noted that law enforcement officers are only tasked with collecting data on cases addressed according to established forms and policies, none of which request information about a person’s health or disability status.

In 2014, the then United Nations Special Rapporteur on Violence against Women, Rashida Manjoo, recommended disaggregated data collection not only on disability, but also sex, age, caste, religion, language and other relevant criteria.[50] The lacuna in counting persons with disabilities presents a significant hurdle to providing adequate services and a lack of attention to their needs in government policies and programs—including those aimed at supporting access to justice in cases of sexual violence.

Role of Civil Society Organizations

Civil society organizations play a crucial role in Kyrgyzstan in the fields of disability rights, women’s rights, and domestic violence, working on development of inclusive policies, advocating for increased accessibility and full participation of women with or without disabilities in society, and pushing for improved protection from and response to domestic violence.

In part due to the lack of state resources in these areas and the lack of political will on the part of authorities, NGOs have made significant contributions, both in terms of advocating for legal and policy changes and through provision of services and support, such as shelter, psychosocial support, medical care, and legal assistance for survivors of domestic violence.

There are challenges in this area, however. Government authorities have in recent years criticized some aspects of the work of civil society organizations, which has resulted in stigmatization of NGOs among parts of the public, and in increased difficulties in accessing foreign funds, which often are the only source of financial support for work aimed towards at risk groups of populations.

Many NGOs are also under-resourced and cannot provide support to at risk groups across the country. Most NGOs that protect the rights and interests of people with disabilities are concentrated in the capital or regional centers, and so are inaccessible to hundreds of rural women and girls with disabilities. About 48 percent of such NGOs are registered in Bishkek.[51] The same can be said of domestic violence services: there are at least 18 crisis centers for women throughout the country, but only 4 of them provide shelter for survivors of domestic violence[52], and only one is equipped to support women and girls with disabilities.

According to experts whom Human Rights Watch talked to, among the 257 NGOs registered with the Ministry of Justice that deal with the concerns of people with disabilities, only a few focus specifically on women and girls with disabilities, and even fewer on issues concerning domestic violence against women and girls with disabilities. Out of those working in this area only one, “Ravenstvo” (Equality) provides access to information on sexual and reproductive rights, as well as protection from domestic violence for women and girls with disabilities.

Case Study: “Center for Independent Living” The "Center for Independent Living” for women with disabilities is a project of “Ravenstvo” (Equality), a community-based organization of people with disabilities established in Bishkek in 2021. The center's primary focus is on empowering women (although it does not close its doors to men) with disabilities through a structured curriculum and innovative outreach programs to enhance their independence and awareness of rights.  Gulmira Kazakunova, the director of Ravenstvo, who herself uses a wheelchair, began working on disability issues in 2008 in Karakol, a city in the Issyk-Kul region of Kyrgyzstan.  I was working with adults then, but sometimes I would encounter children with disabilities, who seemed to not have had access to education. I realized that when they grow up, they would become the adults with disabilities that we were working with, who did not know how to live independently, did not know about their rights. After this, I had a dream to set up a center where youth with no education and no social skills, who were overprotected and sheltered, or on the contrary – neglected – by their parents, would be able to come on a regular basis to learn to live independently. Kazakunova notes that by 2021 she had gained a deeper understanding of the challenges faced by people with disabilities through her work in projects on disability issues. She saw that the problem with lack of education and ensuing lack of social skills for independent living was widespread across Kyrgyzstan.  The "Center for Independent Living" focuses on women with disabilities aged 18 and above, who are invited to apply for the Center’s “School of Independent Living”. Participants from outside Bishkek can stay at the Center for free while those living in Bishkek come daily. Through a structured curriculum spanning three to six months per cohort and accommodating 10 to 15 participants, the center aims to address their multifaceted challenges.  The curriculum covers fundamental literacy skills, including reading, writing, and basic mathematics. It also encompasses critical social skills and practical knowledge. Following the first cohort, the program adapted to include a section on personal hygiene, We realized that we needed to add an early section on hygiene because we had girls that did not know how to use menstrual pads, how to wash up, how to change. They must have been neglected by their mothers, who failed to teach them these basics. So, we added hygiene into the curriculum. Then they would learn about self-care as a woman, how to dress, how to look after their clothes, how to clean their rooms and beds. Then we would teach them how to cook simple food, how to boil water, how to make a boiled egg, and a simple sandwich. All of these are a novelty to them because they are not allowed to do any of this at home, as their parents would see them as too fragile or, on the complete opposite end of it – they would just neglect their daughters with disabilities, seeing them as a burden that is not worth investing time and effort in. The curriculum extends beyond the center’s walls. Participants attend external masterclasses such as cooking classes receive life skills training encompassing budgeting and shopping and become proficient in navigating public transportation.  We teach them how to make purchases - starting at the center first, where we teach them about currency, money, and different types of banknotes. Then we play a game where we set up a shop and encourage them to play-buy. We then take them out to the city, where they can practice in a shop buying simple things like bread or milk together with our staff. After this we encourage them to go on their own, while our staff is watching from afar, ready to provide support if needed. The Center also pays very close attention to communication training on self-confidence, teaching how to say “no” if they do not like something, changing their attitude to themselves and to others, to make choices for themselves - all the seemingly basic soft skills that they were not allowed to learn. Kazakunova says that they go so far as to teach the girls to choose the color of their socks when shopping for clothes, the type, the kind as well - which often is the first step in making choices for themselves.  Former students often return as mentors, representing the tangible impact of the program. One case stands out - a participant who initially grappled with the basics but has since transformed into a confident and independent individual. Every time we organize the school we get some truly heartwarming stories, like the case of Alina – the way she came to us, almost a wildling who did not know basics of hygiene, interpersonal communication, and who growled when anyone tried to speak to her, and [comparing that to] how she is now is like the difference between sky and earth. And although her time at the school is long past, she is still staying with us as a helper, teaching the new ones. The "Center for Independent Living" accepted its 5th cohort in autumn 2023 with 12 participants, who will stay at the center for 6 months. Kazakunova hopes that they will not have to move location yet again. In the last two years the center has had to move three times due to increases in rent that went above the budget.  “I wish we had our own building, where we could organize different levels of schools, maybe even house the masterclasses or skills building courses. We would be so much more independent, and we could do so much more!”

II. Family Violence, Abuse, and Neglect

Physical Violence

Crisis center specialists report that women with disabilities experience physical violence, beatings from partners, parents, husbands, and other relatives. Women with disabilities, due to their isolation and the lack of alternatives in obtaining support, are perceived as unable to fight back.

“When we tried talking to her, after we extracted her from that house, she was like a mute scared little animal. She did not respond to any of our questions and did not want to come out of her room. All of her behavior indicated to us that she had experienced great trauma from her relatives,[53]” says Sveta Esengazieva, coordinator of the Center for Independent Living, remembering the story of Aidai J., a 30-year-old woman with a learning and physical disability.

In families, it is common to take out frustrations stemming from other causes on women and girls with disabilities, who are more likely to endure violence due to their high degree of dependence on the people around them, social workers said. Violence can also be used to try to force a woman or girl with a disability to be more active in housework.

Venera J., a 27-year-old woman with a physical disability, told us:

When my sister was yelled at by our parents, she took it out on me. She saw me as the reason she was yelled at. They wanted her to take care of me, but I think she did not want that, she resented it. All the house chores were on her, and she thought I was lazy. One time she hit me in the head. She apologized, of course, but this happened all too often. I was happy when I could finally go off to study at the internat [residential educational institution].[54]

Physical abuse can manifest in various ways, such as hitting, pushing, or restraining the individual. Twenty-two of the thirty-five women interviewed reported some form of physical abuse.

“It was normal for my jenge [sister-in-law, brother’s wife] to pinch me every time I failed to do the task the way she wanted me to do. And I couldn’t exactly do it that way not because I hate her, but because my fingers wouldn’t listen to my command. Is it my fault?[55]” said Jyldyz, a 32-year-old woman with cerebral palsy.

Albina, a 24-year-old woman with cerebral palsy, said:

My mother, before she left for Moscow [as a migrant worker], she was kind to me more than the others, but sometimes she would also get very upset with me and give me a slap on my head when food fell down from my mouth. Maybe she thought she would help me eat better, I don’t know, or teach me how to be more accurate? I don’t know.[56]

Due to their disabilities, women may face particular risks that can intensify the physical abuse they endure. For instance, a person with a physical disability may have limited means to escape or defend themselves from physical violence. Additionally, perpetrators may exploit the dependence of people with disabilities on caregivers, who, may also be perpetrators themselves.

Rita I. is a 34-year-old woman with cerebral palsy, who moves with difficulty on two crutches. She earned money from her house garden, where she grew vegetables and made homemade conserves that she sold on the market. Her partner systematically assaulted her physically and took away her earnings, as well as conserves so he could sell them to buy himself alcohol. Rita reached out to a shelter in Osh, which helped her get a protection order from the police. Although the partner was detained for violating the order, he was quickly released, and this happened several times, which only exacerbated the situation.

A social worker told us:

This went on two or three times. Both were called to the central police office, and we, as an organization, called the district police officer, whom we talked to. We even organized a medical examination, which showed she had minor bodily injuries. However, no one noted that she has a disability, that when he was attacking her, she was in a helpless state, physically unable to answer. So, they would let him off easy. So, she has ultimately decided to stay with him. She told us “I am afraid, but I will live as long as I will live.” From what we know he continues assailing her regularly, but she does not want us to interfere to not make things even worse.[57]

Another type of physical abuse that people with disabilities, including women, often experience in their families is neglect of their physical needs. A social worker[58] told Human Rights Watch that she has seen many households in which girls with physical disabilities who could not move independently would stay in bed wearing one set of diapers for many days in a row, in a room that was rarely cleaned.

I still remember entering that room – it smelled horribly, of all the physical excretions that you can think of, that were not cleaned for many days in a row. The whole family was very poor, but cleanliness does not really require a lot of money. They were just neglectful. The child was a burden to them.[59]

A community leader[60] told Human Rights Watch that the biggest cause of death for people with physical disabilities who are unable to move independently is bedsores, indicating just how dangerous neglect and negligence can be in homes or residential care settings.

Reproductive violence – including discrimination, and abuses such as forced sterilization and denial of access to or ill-treatment in healthcare facilities – is another, often overlooked, type of physical abuse that women with disabilities and activists emphasized.

Jarkyn S., a 29-year-old woman with a physical disability, told Human Rights Watch: “My parents didn’t want me to give birth to my child. They thought it would be born with disabilities too. They wanted to force an abortion and then also sterilize me all at the same time. I ran away from home and came here.”[61]

A social worker from “Ravenstvo” said:

This happens so often – a woman with a disability wants to become a mother, she believes she can be and with proper support of course she can. But no one wants to give this support, no one wants to risk. The doctors, their families, everyone will try to convince them not to do it. Some agree, some don’t – like Bermet. She gave birth to a beautiful baby, and we fundraised to support her during her pregnancy and after.[62]

Sexual Violence

Sexual violence is difficult for any woman to speak out about, especially when it happens in the family. But for women with intellectual disabilities who have been isolated, stripped of their agency, and psychologically manipulated, it is all but impossible. The exercise of their rights depends on decisions of their guardians and they typically lack independent legal capacity. If the abuser is a guardian, there is no way for them to assert or defend their rights without the external intervention of civil society organizations and crisis centers.

Of the 35 women we interviewed, only three shared their stories with Human Rights Watch.

When Bermet D. was 17 years old she was raped by her step-father, who had been pressuring her to give her consent for a year before that:

My relatives rejected me from the moment I was born. I was always scolded, told that I am a fool. They would say that my father was a retard and that I am just like him. My parents divorced after my birth. I grew up in different relatives’ houses with my mom, always feeling guilty that I was burdening them. Then when I was a teenager, my mom got married for the second time. I was happy for her. But after a while my stepfather started driving my mom to places that were farther and farther away from home. It would be just us at home while she was working somewhere. Then one time when she was gone to her job, he raped me for the first time. This lasted for many years. Once he held a knife to my neck and said: “Remember this, if you tell anyone, I will kill your mother!” These words are still ringing in my years, even after so many years.

In February 2021, the case of Jazgul., the 27-year-old girl with a disability who had been physically and sexually abused by her grandfather and uncle for many years, became public in the media due to her brother finding out and asking for help. Jazgul was not educated, was socially isolated, communicating only with relatives, and at the age of 27 she could neither read nor write and did not have the life skills to live independently. With support of the Center for Independent Living and their lawyer, Jazgul was evacuated to Bishkek and admitted to their safehouse. Still living at the center when we spoke with her in October 2022 and still living there as of writing, she had learned the basics of reading and writing. However, social workers there noted she had relapsed several times, forgetting the progress she had made previously. Law enforcement agencies questioned Jazgul's accounts of sexual violence.

Society tends to view individuals with disabilities through a lens of asexuality or hypersexualization, leading to their sexuality being denied, ignored, or dismissed. This perception increases their risk of sexual exploitation, as perpetrators may assume they are less likely to report or be believed. Most cases of sexual violence against women and girls with disabilities remain hidden and go unpunished.[63]

According to Gulmira Kazakunova:

Women with certain levels of learning difficulty, or speech and hearing impairment, can sometimes be considered to be hyper-sexual. We have seen cases when underage girls with cerebral palsy would be manipulated into having sex with someone they knew, with an unwanted pregnancy developing - when this became known the perpetrators would deny it, saying she wanted it. And the police and judges believe them. Nobody thinks about the concept of consent and how it may be different for girls with learning difficulties, how it may be difficult for them to say no to someone they know and trust.[64]

Perpetrators of sexual violence may exploit power differentials, manipulate trust, or use coercion to engage in non-consensual sexual acts.

Asel G., a 22-year-old woman with a mobility impairment, told us:

My uncle raped me. How could I know that someone I respect, and trust had bad intentions? I will never forget that day. He lied to me, saying that I was needed in another village. There he took me to some house, where he tied my hands and feet, and put a piece of cloth in my mouth. Then he raped me from late night until dawn. I think I died that day. All my clothes were covered in blood. I didn’t have the strength to resist or even to move my leg. After all that he left me there.[65]

Women with disabilities face additional barriers to escape or seek help due to lack of support, limited access to sexual and reproductive health services, or the perception that their experiences are not valid.

Jazgul’s Story: Beaten By Grandmother, Raped by Uncle and Grandfather

Jazgul came to the safehouse ran by Ravenstvo NGO, nearly three years ago in February 2021. Social workers at the center describe her as shy, she does not like to look people in the eye. Sveta Esengazieva, coordinator at Center for Independent Living helped Jazgul tell her story.

Jazgul grew up as an orphan. She was born in 1996 with cerebral palsy, learning difficulties, and a level of visual impairment – disabilities that her grandparents told her were most likely a result of repeated kicks and blows Jazgul’s father gave her mother while she was pregnant. Jazgul's disability and support needs have never been formally assessed, as most of her life she spent locked up in her maternal grandparents’ house, who took her in after her parents died when she was young. She has an older brother, who ran away from the family when he was a teenager, unable to take the abusive behavior toward him. “They abused me all the time. Maybe even dogs were treated better than I was when I was with them. Both my uncle and grandfather raped me,” Jazgul said.

When Jazgul turned 16, her maternal uncle took her to a shed in the yard and raped here there for the first time. This happened regularly and did not stop even when he almost got caught by his own child – he forced Jazgul to pretend they were playing. Then her grandfather started taking her to “bathe” where he would also sexually abuse her before taking her to the shed outside the house, telling everyone she was resting.

Jazgul could not tell anyone about what was happening to her, because everyone in the family was an abuser of one or another kind. Her grandmother verbally and physically abused her, saying she was a burden to them. Her uncle’s wife resented her disability and forced her to help her around the house even though Jazgul was never taught any skills. As Jazgul was refused school admission due to her disabilities and did not receive any social service visits, she could not tell anyone outside the family.

Sveta explained:

When her brother learned that Jazgul was being raped, it was sometime in late 2020, he tried to get her out of there. The grandparents denied everything, saying she made it all up, so he came to us eventually. We wanted to take this case to court, but turned out that before he came to us, he signed a document prepared by a previous lawyer that offered his services to him for free. The document said he did not have any claims towards the family. The lawyer must have been bribed [by the family].

Sveta says that when Jazgul arrived at the safehouse she had no understanding of personal feminine hygiene, could not speak in long sentences, could not write or do math. Jazgul’s case did not make it to court. Although an investigation was eventually opened into the abuses she endured, it was closed due to “lack of evidence,” almost certainly in part because police and prosecutors deemed Jazgul’s testimony unreliable given negative stereotypes about her disability.[66]

Jazgul has been staying at the center since her arrival there in February 2021 “I feel so at peace now,” she said.

The social workers at the center note that she is making a lot of progress, even though she regresses and forgets most of what she learned and must start anew. They think it will take her many years to rehabilitate from the abuse she lived through.

Today she is a helper at the center, not just a resident. She has learned how to write and read and the basics of math. She looks after new arrivals and shares with them some of her tips on house chores.

Psychological Abuse

Women and girls with disabilities are often subjected to psychological abuse, often characterized by acts of intimidation, threats, humiliation, neglect, deprivation of necessary resources and means of communication, leaving them alone without assistance (if mobility assistance is required), and various forms of controlling behavior and. manipulation of their disability-related needs. Perpetrators may exploit their disabilities by denying them necessary accommodations, withholding medication or assistive devices, or exacerbating their condition through deliberate acts of harm. This form of abuse perpetuates a cycle of powerlessness, isolation, and dependence, leaving survivors with disabilities more susceptible to continued abuse.

Olesya B., a 30-year-old woman with a mobility impairment, told Human Rights Watch:

Sometimes when they were angry at me my siblings would hide my things from me. My phone, my crutches, or move them away. I had to crawl to get there. They thought it was funny.[67]

Psychological abuse can also manifest as verbal threats, insults, or belittlement. Women and girls with disabilities are often subjected to emotional manipulation and control, which can have severe consequences for their mental health and overall well-being. Furthermore, perpetrators may undermine their self-esteem, diminish their independence, and create an environment of fear and constant surveillance.

Jarkyn A., a 24-year-old woman with cerebral palsy, said:

My family always treated me like I’m not really human, I realize now. They would never let me do anything, saying ‘you can’t do it, look at you’, or they would use slurs against me when they were angry, call me ‘sicko.’[68]

When she just came into the shelter, she did not know what a menstrual pad was. She just bled into her panties, tried stuffing toilet paper in there. She smelled really bad too in the beginning because she just did not have a habit of washing herself. We taught her all of those things. It’s terrifying to think of the conditions in which she lived and the cruelty of her guardians, who did not teach her any of that.[69]

Isolation, Social Exclusion and Dependency

Communication is the only way to ensure safety of women and girls with disabilities, if they have contacts outside their family they can always share what is happening with them. But often what happens is that their families prohibit them from having any friends – fearing ‘bad influence’ in some cases, in others we don’t even know why.[70]

Until age 32 she had never left her house [talking about a woman who uses a wheelchair] - her parents thought she did not need anything apart from food, clothing, a roof under her head. When guests came over, she would be left in the room, encouraged not to communicate with them. If she wanted to go somewhere they would question why.

Then she saw our organization’s ad on TV, we provided a hotline for people with disabilities – she called us, said she wanted to communicate, to have friends. We visited her house, talked with her family, and she began to be allowed to leave and have friends.[71]

In rural areas especially girls [with disabilities] are not let out. ‘What else do you need? Your stomach is full, you’re dressed, what else do you need?!” – they say and honestly believe that this is enough. This is the understanding of disability – a sick person cannot and does not need to live a full life.[72]

They lock them up inside the house, or just in their room, especially when guests are over, because they don’t want unwanted questions or are just ashamed that they have such a child.[74]

Friends of the family, acquaintances of the family will never know that there is a woman with a disability in this family, because if guests come, she is hidden somewhere. If there is no place to hide at all, then she will sit somewhere – in a bathroom or some room where no one enters.[75]

When there are people who always make decisions for you, you will not have life skills, plus the possible lack of education, lack of self-realization lead to poverty. It might seem that it was because of disability that a woman ended up in poverty, but in fact the woman did not receive sufficient skills and resources, and the knowledge that she can do much more...[76]

Intimidation and Threats

My brother and my jenge [brother’s wife] wanted me to give my welfare payments to them, in addition to the assistant payments that they were getting for taking care of me. When I said ‘no’, she said I should learn going to the toilet on my own, that she would not help me anymore.[77]

Economic Abuse and Denied Access to Education

Larisa I. is a young woman with epilepsy who did not get school education.[78] A disability rights activist told Human Rights Watch her story and shared her contacts. In a phone interview Larisa explained that her family makes a living from handcrafted goods, with Larisa doing all of the embroidery. In addition to being kept at home and not allowed to go out, Larisa also does not see the financial fruits of her labor:

Mom sells it at the market, I do the embroidery the whole day at home because I do it the best of them all. And if I am done with it, I just go do other things around the house... I’m not allowed to go out, no, so I don’t have the need for that money.

In Kyrgyzstan attitudes towards girls and boys with disabilities in families differ significantly. If there are several children in a household with a small budget, then the interests and needs of a girl with a disability, as a rule, are not considered as a priority by family members when deciding questions regarding education, vocational training and attending courses. Either children without disabilities are sent for training, or boys with disabilities are preferred.

The girl is often told that education or meeting friends is superfluous, their main task is housework. If a girl with a disability does not cope with housework, gets tired more quickly, or cannot do quality work, she faces rude and neglectful attitudes about her disability and, at times, physical abuse.

“My siblings were constantly saying that my only use is doing homework and even that I cannot do properly,[79]” said Venera J., a 33-year-old woman with limited mobility.

In many cases, family members consider disability benefits as part of the general budget and women with disabilities cannot spend these funds at their own discretion and for their own needs. Adinai B., a 23-year-old woman with cerebral palsy, told us:

I am nobody for my family; my relatives use my money. My welfare card has long since been theirs, I have not seen it for so long. I wear old hand-me-downs from my siblings and I am the scapegoat when my family needs to let off steam. They mostly hit me in the head when beating me because no one will notice it. I don’t want to go back home, nobody is waiting for me there, they don’t care about me. I want to continue learning skills, like I do here [school for independent living] to live independently and to be an activist.[80]

It was just too difficult for [my family] to do this [advocate for a home teaching agreement with the school] and they probably also did not think someone like me even needs education,[81]” said Meerim D., a 27-year-old woman, who uses a wheelchair.

Her father was a school principal. She is a girl in a wheelchair, her intellect is intact, everything is fine, but her father told her: “I am ashamed that I have such a daughter – you will not study.” And this girl did not study. Then we tried to involve her in various events, but she had a complete ban, they did not let her out. We negotiated with the family for her to be let out and join our activities sometimes and we barely managed it in the end.[82]

I am so happy, I learned to read! I can be independent now. I didn’t know how to do this before. There was a teacher that was supposed to come visit me and teach, but she came only a few times when I was small, and then stopped. My mom raised me alone and did not have time to teach me. I was trying to help her as I can. Now I am finally learning.[83]

The families are mostly poor, uneducated, unsupported by the state. They were already struggling when their child with a disability was born. Of course, on the one hand I understand how frustrating this must be. And it feels to them that they have rights to those payments because they are providing them with shelter and food. And what else could they need, right? So, they just take away their money, it’s so normal.[84]

Tanya [85] is an ethnic Russian woman, 45 years old, with cerebral palsy. She had a very loving mother, who took care of her all her life. But she died recently. In the will she indicated her apartment was to be left to Tanya because she would not be able to make a living otherwise. However, her younger brother and his wife were upset with this decision and tricked Tanya into signing a refusal. She did not know what she was signing, trusting her brother. Now she is homeless. We helped her get into a charity house, but we really need to find a more permanent solution, so we’re talking to a lawyer on how to help her get it back.[86]

Alina’s Story: They Took All My Earned Money, Called Me a ‘Prostitute’

Alina D.[87] is a 26-year-old woman with cerebral palsy, who uses a wheelchair for easier mobility, and lived with her family in Southern Kyrgyzstan until recently. She came to the Center for Independent Living as an intern after participating in a UN organized school for disability rights youth, working at the Center for six months, participating in activities of the Center and the “School”. Alina has a dream of helping others like her:

I want to start an NGO that would help people like me and older people [with disabilities], so I am learning everything I can while I am here. I used to think I was good for nothing before the activism school and before this Center. But now I feel like I can do so much despite my physical limitations.

At the start of her stay Alina came across to the center staff as a young woman who had a regular family life, if neglected a bit. She had both her parents and siblings. She was curious, and even though she did not have an education she had a thirst for knowledge. And she was allowed to participate in the few programs aimed at supporting youth with disabilities. However, as Alina grew closer to the Center staff, she shared with them stories of economic and psychological abuse that she had to endure at home.

She won a small amount of money in some NGO youth entrepreneurial contest, which she spent on buying chicken. She wanted to start a business breeding hens and selling them. But when she got the internship with us, she had to leave them with her family. And just a few weeks after she got a call from her siblings that they were planning to sell the chicken and use the money to close a loan her sister had taken out from a bank. Despite Alina’s protests, they just went ahead and did it, paid no attention to her request.[88]

After Alina’s internship was over, she had funds she had been able to save up from her six months of work at the center. Her family asked her to give them the money and when she refused they accused her of prostitution while she was away from them, beat her up, and threatened to lock her up. Every day she was pressured, cursed by the family for having changed, for no longer being submissive and compliant. They forced her to hand over her bank card and took all the savings from her account.

When it got too much, she called us, [she was] suicidal. She said she couldn’t take it anymore. I called her mother and asked if Alina could come back to our center to help us, but she said no, that her character and mood had become worse after interning with us. So, we had to intervene. An activist in Osh bought her a ticket and we evacuated her from that home. She was able to leave under the pretense that she would attend a birthday party of a friend, so she had nothing else on her except what she was wearing when she arrived in Bishkek. We got everything for her here.

Alina is now back in Bishkek, staying at the center again. Her parents tried to get her back through aunts that attempted to kidnap her, according to center staff. The relatives thought that she was engaging in prostitution in Bishkek and needed “saving.” The center staff were able to explain Alina’s true story to them and they let her go.

Alina now plans to support other women: “There are so many women like me out there and I want to dedicate my life to helping them out of this.”

III. Lack of Access to Justice

Jazgul, whose case is profiled on page 43, suffered economic, physical, psychological violence and sexual abuse by her paternal grandparents and uncle. At least in one aspect, her case is an exception in that she was able to escape her home and much of her story became known. After her brother’s appeal, her case was picked up by the media and caused a public outcry, which led to an investigation, although it never made it to a trial. However, most cases of abuse and violence against women and girls with disabilities in Kyrgyzstan go unnoticed and unaddressed, with perpetrators remaining free and not brought to justice. There are many barriers that women and girls face in gaining access to justice in domestic violence cases, as outlined earlier. In addition, according to existing research[89] corroborated by lawyers Human Rights Watch interviewed for this report, there are some additional key issues related to women and girls with disabilities. These include:

• The Statute of limitations, which sets between 2 to 10 years as the timeframe within which a survivor must report a crime before prosecution is no longer possible. This is problematic, as it fails to account for the fact that victims may only disclose or report abuse after a significant period of time, which disproportionately affects women and girls with disabilities.
• Evidentiary standards that prioritize physical injuries and biological evidence, which may be absent in cases of reporting a crime from the past, or in cases when violence, especially sexual, was perpetrated using threats and intimidation, but leaves little or no physical evidence. This also undermines the credibility of victims' testimonies, particularly if they have intellectual or psychosocial disabilities, or have been stripped of their legal capacity.
• Domestic violence investigations are only initiated upon the proactive request of victims or their representatives, leaving many survivors without protection provided by the law, even when prosecutors become aware of a case.
• The lack of effective pre-investigation processes, inadequate identification of at-risk individuals, limited accessible information about sexual violence, and a lack of affordable and accessible legal support, exacerbate the challenges faced by survivors with disabilities.
• Lack of accommodations, and failure to account for disabilities by police, medical and court professionals, even when families, their lawyers, and engaged organizations identify disabilities and corresponding needs. For some women and girls with disabilities, reasonable accommodations—changes in ordinary procedures or practices to meet the needs of a particular person—are key in reporting sexual violence.

Women and girls with disabilities may be more at-risk of abuse and have increased difficulty leaving abusive situations since they are more reliant on families and caregivers.

Alina, a 27-year-old woman with cerebral palsy, said:

I thought I would never make it out of there. They were not going to let me go, they believed the stories my family told them, that I was selling my body to earn that money. I thought I was done for. But thankfully Sveta-eje [respectful way of referring to an older woman in Kyrgyz] was there and she didn’t let go of me. She yelled at them to let me out and she told them everything as it was. So now I’m here.[90]

At the same time, when violence and abuse, especially sexual violence, occurs outside the family, it is the decisions, patience, and perseverance of the guardian that determine how effective legal protection will be and whether the law enforcement system will be able to investigate and charge the perpetrator. In many cases, as experts from crisis centers and lawyers explained to us, guardians are either not interested, for various reasons, to accompany and represent the interests of their wards, or do not have the appropriate legal knowledge and skills to do this effectively.[91]

Women and girls with disabilities—like other women and girls—may face pressure from perpetrators, communities, and even their own families to not seek legal redress. A lawyer specializing in domestic violence cases told Human Rights Watch:

They just decided that they will not pursue this because the perpetrator had denied everything, saying the girl was making it all up. And people had already started talking about this in the village, they believed him because the girl had learning difficulties. Her sister tried not to give up, and submitted a complaint to the police anyway, regardless of what they [villagers] were saying about their family – but eventually she withdrew it. Apparently, the perpetrator had threatened their whole family and told them they had better take what he is offering – cattle – for stopping the case.[92]

Women and girls with disabilities may also face the added trauma of their accounts being discredited on the basis of their disability.[93]The concept of legal incapacitation, while only applying to people with psychosocial disabilities, may influence the reliability of witness testimonies of people with all kinds of disabilities.

Even when a woman with a disability has independent access to legal assistance, she faces additional social barriers in exercising her rights compared to a woman without a disability. In addition to barriers to justice common to all women, such as low levels of legal knowledge, risks of public stigmatization, economic dependence on abusers, and difficulty accessing social support resources, women with disabilities are forced to overcome inaccessible transportation systems, lack of information in a form accessible to them, and extreme difficulty accessing or navigating law enforcement agencies, courts, and crisis centers. Even where resources are available in theory, they are not necessarily accessible in practice. For example, limitations on access to specialized medicines that women with disabilities require can make it difficult for them to leave their place of residence to pursue legal cases, which can take months and require appearances in different locations as the case moves from one district court to another, then to a regional court, or to the national level. As a social worker told Human Rights Watch:

[S]ome benefits or medicines are tied to the place of residence where we live, and this, of course, also plays an important role in life. If there are specialized medicines that can be dispensed by doctors from the local family medicine center, then if I am registered, I go there. I cannot go to another center and get these medicines. It is difficult to change the registration, and all medicines are tied to registration and place of residence.[94]

Women with disabilities experience additional difficulties when contacting law enforcement agencies. For those with physical disabilities, the buildings of law enforcement agencies remain physically inaccessible, since there typically are no ramps, and internal stairs, corridors, and so on are not adapted for the movement of a person in a wheelchair. A lawyer told Human Rights Watch:

All of the district police officers that I know of in Osh are located either in a basement, or on second or third floor of buildings that do not have ramps. So, imagine a woman that uses a wheelchair – she comes to that office, asks for a possibility to submit her complaint. She has to first tell all her story to just the person guarding the police station, so he can direct her to the next officer. Then she has to somehow make her way in and ask for help from random men – because it is absolutely mostly men that work in the police here – to be taken to the necessary room. And what if her perpetrator was a man? She still has to bear with all of them being men and be reliant on their help. There are no accommodations for women with disabilities.[95]

Women with visual disabilities do not have the opportunity to receive timely and complete information about the legal process, and it is difficult for them to navigate the premises of law enforcement agencies since there is no appropriate support. Women with hearing disabilities face a lack of information about the legal process, communication with law enforcement officials is difficult, and sign language interpreters are often unavailable. Moreover, law enforcement officers do not have sufficient skills and resources to interact with people with different types of disabilities.

A sign language interpreter shared with Human Rights Watch:

While there is more visibility and attention now to people with [physical] disabilities, the plight of those with hearing disabilities remains completely unaddressed because sign language is extremely limited only to its users and some members of their families. The cases of violence remain hidden, they don’t even share within their own groups. I have not yet heard of a case when a hearing-impaired person who, for any reason, turned to the police was able to get a service from there.[96]

Articles 3 and 31 of the Law On the Rights and Guarantees of Persons with Disabilities provide for the provision of sign language interpreters during investigative actions or when participating in court processes, and the Ministry of Justice determines the list of certified sign language interpreters with a legal specialization. Lawyers and specialists from crisis centers report that in their experience, the involvement of sign language interpreters occurs mainly on a paid basis and is an expensive service only accessible in Bishkek and Osh.

A lawyer gave examples of an investigator trying to interrogate a person with a hearing disability without a sign interpreter, and of sign translation being carried out by family members of a person with a hearing disability during investigation and trial[97] despite provisions in the law requiring court-appointed sign interpreters.

Yeseniya Ramazanova, a lawyer with extensive experience working with women with disabilities, told Human Rights Watch that stereotypes about disability—that a person with a disability is not a reliable witness—and lack of skills to respond sensitively to the needs of people with disabilities too often lead police officers to refuse to register applications. And low levels of legal literacy and even general literacy among women with disabilities contributes to them being less persistent in getting their cases registered.[98]

As Muhayo Abdurayupova, a lawyer, said: “It is not easy for women with disabilities to turn to law enforcement agencies because of the rough treatment they receive there, because the police just do not want to deal with these cases.”[99]

Problems common to all women in Kyrgyzstan in accessing justice, such as delays in investigations, pressure on survivors of sexual violence with accusations that they did not resist enough or behaved in a provocative matter, dismissal of cases due to insufficient evidence, as well as corruption endemic in the system, are aggravated by these stereotypes, which see women with disabilities as problematic and untrustworthy witnesses.[100]

Police officers whom Human Rights Watch interviewed in unannounced visits to district police offices in Bishkek and Osh were largely uninformed about the specificities of working with women with disabilities.[101] Two of them confirmed they were aware of a standard operational procedure guidebook distributed by the Ministry of Interior in 2022 but were unable to list the recommendations. One of them disclosed that, in their opinion, “even if someone like that came by the police office there would not be a lot of willingness to take up their case” due to difficulties associated with such cases. Another said that there was an epidemic of domestic violence in Kyrgyzstan, “but even those cases, most of them are eventually closed because the sides come to an agreement, and we feel like we’ve lost time trying to gather evidence,” noting that when even “regular cases are closed, there’s no way cases of women with disabilities can have a higher chance of investigation.”

In a case where a 15-year-old girl with learning disabilities was raped by a co-worker at a cafe where she was working to help her mother, who also has a disability, the lawyer who represented the girl said that the police made no attempt to provide procedural accommodations, noting lack of skills among the officers in communicating with someone with a intellectual disability. The lawyer petitioned that in this case, considering the peculiarities of the child's condition, that a confrontation with the accused be omitted. However, this request was not granted by the investigator, nor was any modification of the format of the confrontation made.

She was very afraid of her rapist, she could not stand it, she started screaming, she almost broke all the computers, and after that the confrontation had to be interrupted.[102]

Burdensome evidentiary standards in sexual violence cases further hinder access to justice for survivors, especially those with disabilities. Prosecution of such cases often relies heavily on physical injuries and biological evidence associated with a sexual act. Consequently, if forensic examinations do not find visible injuries or signs of violence, the victim's testimony, particularly if she has an intellectual or psychosocial disability, may not be believed or suffice. Psychological/psychiatric examinations conducted to assess competency often fall short of scientific standards and perpetuate myths and negative stereotypes about sexual violence. These practices contribute to a culture of impunity and systemic discrimination.

Summary

The previous government failed me, and now this government is failing me too.

— Bahija J., a 75-year-old woman in Cape Town, September 21, 2022

Bahija J., 75, has been on the waiting list for state-subsidized housing for 40 years. Her rented house in Cape Town is moldy and damp, and her landlord has promised her hot water since 1996. She is afraid of dying alone in the house but does not want to end up in an “old age home.”

Bahija spent nearly half a century of her life under an apartheid regime, whose racial segregation policies denied the majority of today’s black African, coloured, and Indian/Asian older South Africans a decent education, decent work, and the ability to save for older age. Many were displaced as children or young people by the apartheid government’s forced removals to segregate people on the grounds of race. The cumulative impact of this racial discrimination when they were younger continues to affect them decades on.

In part to address this legacy of apartheid, the post-apartheid government adopted the 2004 Social Assistance Act, which provides for the Older Persons Grant, a non-contributory social security entitlement for people aged 60 and over, and the Grant-in-Aid for those requiring full-time care and support at home. The post-apartheid government also adopted the 2006 Older Persons Act, which enshrines the rights of older people. The act guarantees them the right to live in an environment that caters to their changing capacities and emphasizes community- and home-based care and support services. While the Older Persons Act enshrines the rights of all older people, the vast majority of those who are eligible for government-funded care and support services under the act, the Older Persons Grant, and the Grant-in-Aid, are black African, coloured, and Indian/Asian older people.

Nearly 30 years after the end of apartheid, however, current government policies are undermining the intended remedial impact of the Older Persons Act and are, in fact, compounding apartheid’s legacy. Despite the act’s stated aim, many older people who were displaced during apartheid still do not enjoy their right to live independently and within the community, with hundreds of thousands of older people unable to access the basic care and support services they are entitled to so they can live with dignity in their own homes and communities.

This report documents the experiences of 63 older people across Eastern Cape, Gauteng, and Western Cape provinces. Forty-one were black African, 13 coloured, 3 Indian/Asian, and 6 white. Forty-five were women and 18 were men. Sixty-one received the Older Persons Grant.

Human Rights Watch found that few of the older people interviewed for this report had access to basic care and support services.

Ben Zolile, 75, lives in River Park, Johannesburg, with health that he says goes “up and down.” He used to eat lunch each day at a service center for older people but now cannot make the trip due to bad knees. “No one comes to my house,” he said. “There are no other services that come to my home.”

There are a number of factors that contribute to the unavailability of services, including that the government sets its targets for how many older people should have access to services based on what the government can afford rather than what services older people need. The government has determined that 20 percent of “active vulnerable older persons” and 3 percent of “vulnerable frail older persons” should have access to services. Given what is known about the levels of chronic illness, disability, and dementia among older people, these targets are likely to be extremely low.  

Other factors also limit the availability of services, including disparities in provincial plans to increase access to services; insufficient numbers of social workers; and a lack of coordination between government departments responsible for realizing the rights of older people. In addition, although the government contracts with non-profit organizations to deliver community- and home-based care and support services, overly prescriptive rules on the range of services and insufficient funding impede the organizations’ capacity to deliver those services.

The managers of service centers in the Eastern Cape, which are tasked with providing community- and home-based care and support services, told Human Rights Watch that government funding covered only 40 to 50 percent of their costs. In the Western Cape, one private non-profit service center has to charge older people an annual membership fee and monthly contributions for food to help cover their costs. “The Department of Social Development doesn’t give [us] the full budget,” the center manager said. “Older people must contribute themselves.”

These challenges are exacerbated by the government’s continued over-reliance on family members to provide home-based care and support, even in circumstances where they are unable or unwilling to do so.

For Thembisa Loyila, 70, who lives alone in Mdantsane, Eastern Cape, service delivery depends on whether you have children or not. “The government doesn’t have any responsibility for us,” she said. “As older people, we have to take care of each other. We only have ourselves.”

Older people who receive the Older Persons Grant may also be eligible for a social security entitlement to cover the costs of full-time home-based care and support. The Grant-in-Aid is, however, woefully inadequate as it only provides 20 hours of full-time care and support per month, based on a caregiver receiving the national minimum wage.

Private care and support services are available but unaffordable for all but the very wealthy, exacerbating existing inequalities. Rates for 24-hour live-in care for one month can equal four years’ worth of the Grant-in-Aid.

In addition, Human Rights Watch found, few older people even know the Grant-in-Aid exists. For example, Ben Movenda, a 76-year-old man who uses a wheelchair, had not heard of the Grant-in-Aid. Instead, he has to rely on help from his neighbors to use the communal toilet and enter or leave the shack where he lives in Alexandra, Johannesburg. There are high steps and no ramps, the road surface is uneven, and he does not have the upper body strength to wheel himself. “I’ve got no support,” he said. “I need someone to help me, but who is going to pay for that?” And of those who do know about the Grant-in-Aid, some wrongly think they are not eligible.

The subsequent lack of home-based services negatively impacts older people’s physical well-being and safety and may impede their dignity, autonomy, and independence. Without appropriate care and support, older people may have no option to continue living independently in the community, which can cause profound distress of being institutionalized against their wishes. According to Nosiphiwo Tetana, manager of the Dimbaza Society for the Aged’s service center for older people, “Older people are just literally left on their own.”

Some older people who are left without needed support and services may even be at greater risk of violence and abuse. A government-employed social worker told Human Rights Watch that older people are exposed to various dangers when they are isolated and not getting the home-based care and support they are entitled to:

They’re raped, killed, there’s gender-based violence. When we get a case, we try to do something, for example, remove them to a neighbor’s house or find someone who can assist…. It can take months to find somewhere, and you only get a bed [in an old age home] when someone [there] dies.

Adequate housing is necessary to live independently and within the community. Yet Human Rights Watch found that housing could be unaffordable, unhabitable, and/or inaccessible for older people. Some older people have waited decades for state-subsidized housing. Others feel unsafe in their homes. Sylvia Lusiti, 72, is blind and has lived alone in a government-provided house in Dimbaza since 2016. Her house has no fence or burglar bars. “There’s no security,” she said. “At midnight, people knock at the windows, at the doors.”

South Africa’s democratic government has introduced a promising legal framework to protect the rights of older people, including those enshrined in the 1996 constitution, the Social Assistance Act, and the Older Persons Act. The Older Persons Grant is an important pillar of South Africa’s social security system, on which the country spends a relatively large portion of its gross domestic product (GDP) compared to other upper-middle income countries. Despite this promising framework, Human Rights Watch found that the vast majority of eligible older people are unable to access the basic care and support services they are entitled to, and that the South African government has failed to respect, protect, and fulfill older people’s right to live independently and within the community.

South Africa is obligated under international human rights law to ensure that all older people have an adequate standard of living, including adequate housing. This right must be guaranteed without discrimination. The right to adequate housing also encompasses the right of older people to live independently in the community, and access to care and support services has been recognized as essential to the full enjoyment of this right. The government has a specific obligation to ensure that older people with disabilities, including those with limited mobility and those requiring support with daily activities, can live independently in the community and that they have access to community- and home-based support services and adequate housing. South Africa’s national laws, including its constitution, also guarantee these rights for all older people.

To increase access to these services, the Department of Social Development should put in place a system to determine the number of older people who require community- and home-based care and support. It should urgently review the current funding model for these services and allocate sufficient funding to ensure that those entitled to such services have access. This should include adequate funding to non-profit organizations and public service providers so they can effectively deliver the support older people require.

The government should also review and reassess whether the Grant-in-Aid is sufficient to guarantee older people the resources necessary to access adequate care and support to live independently and within the community, and develop a public plan of action to increase as expeditiously as possible the level of the grant to cover the full costs of such services. The government should also provide accurate, accessible information to older people about the existence of the Grant-in-Aid and its criteria for eligibility.

National and Provincial Departments of Social Development should improve coordination and collaboration between government departments, as well as among the Department of Health, non-profit organizations, and other service providers, to improve implementation of the Older Persons Act and older people’s access to services they are entitled to.

Taking these steps is necessary for South Africa to satisfy its obligations under international and national laws and to address the legacy and cumulative impact of apartheid on many older people.

Recommendations

To the National Department of Social Development

• Fulfill the human rights and statutory obligations of the state to deliver quality care and support services for older people regardless of their ability to pay. To this purpose, the National Department of Social Development should:
  • Urgently develop its capacity to deliver community- and home-based care and support services effectively;
  • Establish and implement a system to determine and make public the number of older people who require community-based care and support services;
  • Establish ongoing monitoring mechanisms to assess accurately the requirements of older persons;
  • Ensure that provincial governments allocate sufficient funds to the delivery of community- and home-based care and support services, based on the number and needs of older people, to cover the full core costs of services envisaged under the Older Persons Act;
  • Ensure that any private providers, including non-profit, non-commercial organizations, involved in the delivery of care services for older people are robustly regulated with clear guidance on ensuring non-discriminatory access and pricing, and that they receive sufficient funding to provide quality services to all without discrimination.
• Develop and implement a strategy to employ and train more social workers with the aim of reaching the numbers required to implement the Older Persons Act.
• Transparently review and assess whether the Grant-in-Aid and/or other social security mechanisms are sufficient to guarantee older people the resources necessary to access adequate care and support so that they can live independently and within the community.
• Publicly demonstrate how the government is using the maximum of its available resources to support the Grant-in-Aid and/or other social security mechanisms for the care and support of older persons, and develop a public plan outlining how the government will as expeditiously as possible increase the level to cover the full costs to ensure all older people can access adequate care and support to live independently and within the community.
• Provide accurate information to older people and those who provide care and support to them about the Grant-in-Aid and its eligibility criteria.
• Improve coordination and collaboration with other government departments, including the Department of Health; non-profit organizations; and other service providers to ensure more effective implementation of the Older Persons Act.

To the Provincial Departments of Social Development

• Set the budget for community-based care and support services, including home-based services, based on an accurate determination of the number and requirements of older people.
• Apply for sufficient funding, based on the number and requirements of older people, for community-based care and support services from the Provincial Treasury as part of the allocation from the Provincial Equitable Share.
• Regulate any private providers, including non-profit, non-commercial organizations, involved in the delivery of care services for older people, with clear guidance on ensuring non-discriminatory access and pricing, and ensure that they receive sufficient funding to provide quality services to all without discrimination.
• Review and revise overly prescriptive rules attached to funds provided to non-profit service providers that restrict all discretion available to them and curtail their ability to provide services that realize the rights of older people in accordance with the Older Persons Act.
• Pay subsidies owed to non-profit organizations in a timely manner.
• Include an allocation for staff salaries in the subsidy for non-profit organizations, for caregivers, managers, cooks, cleaners, drivers, and others whose work is essential for effective service delivery.
• Ensure that the actual costs incurred by non-profit organizations and their staff to provide services under the act are fully covered and ensure that they do not lose money due to the department’s actions or omissions, including by providing back pay if the department is delayed in making payments.
• Improve coordination and collaboration with other government departments, including the Department of Health; non-profit organizations; and other service providers to ensure more effective implementation of the Older Persons Act.
• Actively seek, fund, and build the capacity of new service providers to better respond to older people’s right to community- and home-based care and support services.

To the Provincial Treasuries

• Allocate sufficient funding for community- and home-based care and support services, based on an accurate determination of the number and requirements of older people, as part of the Provincial Equitable Share.

To International Donors

• Support South Africa to generate adequate levels of resources to progressively achieve the realization of older people’s right to live independently and within the community.
• Provide funding for the development of community- and home-based care and support services for older people.

To the African Commission on Human and Peoples’ Rights

• Review and assess South Africa’s efforts to fulfill its obligations towards older people under article 18 of the African Charter on Human and Peoples’ Rights, including with regard to living independently and within the community, including adequate housing, and under article 22 of the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Women in Africa in its next periodic report.
• Develop a set of guidelines for African states on the realization of the right to live independently and within the community.

Methodology

Human Rights Watch interviewed 63 older people between the ages of 60 and 85 in September and October 2022, and May 2023. We used 60 as the minimum age because the South African Older Persons Act applies to people 60 and older. The age listed for each interviewee is their age at the time of the interview.

In addition, Human Rights Watch interviewed seven non-profit service providers, three volunteer community organizers, one non-profit community caregiver, two family caregivers, and one government social worker. Human Rights Watch also consulted 45 South African researchers, academics, lawyers, non-profit service providers, human rights experts, and members of older people’s organizations and 2 international academics. We complemented our interviews by reviewing national legislation and reports produced by governments, academics, international bodies, and local groups.

All interviews with older people occurred in person in their homes or in community centers in three provinces: Eastern Cape, Gauteng, and Western Cape. Human Rights Watch chose these provinces to ensure that interviewees came from different demographic, economic, and geographic settings.

According to Statistics South Africa, Gauteng and Western Cape have the lowest poverty levels of the nine provinces at 33 and 35 percent respectively; Eastern Cape has the second highest at 71 percent.[1] Eastern Cape had the highest proportion in the country of older people, 11.5 percent in 2022, in its overall population; Gauteng’s population of older people, 8 percent, was below the national average.[2] Eastern Cape also had a high proportion, 79 percent, of older people in receipt of social grants in 2021; Western Cape had the lowest proportion at 57 percent.[3] Gauteng, the country’s economic hub, had the highest number of older people participating in the labor force at 15.5 percent in 2020; Eastern Cape had the lowest at 6 percent.[4] While the number of interviewees is not nationally representative, the findings from these three provinces give a strong indication of issues across the country.

In Eastern Cape province, interviews were conducted in the coastal town of East London, the rural village of Gwaba, Mdantsane township, and the town of Dimbaza. In Gauteng province, interviews took place in the Johannesburg suburb of River Park and the township of Alexandra. In Western Cape province, interviews took place in the Cape Town suburbs of Woodstock, Elsie’s River, Grassy Park, and Khayelitsha, a township on the Cape Flats; in Atlantis, an industrial satellite town; and in and around Porterville, a rural town. Human Rights Watch selected these places to ensure a diverse range of geographic settings and experiences since South African society is still predominantly stratified along former apartheid configurations of race.

Older people’s organizations, service centers, and others helped Human Rights Watch identify older people to interview. Criteria for interviewees were that they were aged 60 or over, in line with the definition of an older person in the Older Persons Act; living in the community and not in a residential care facility, often known in South Africa as “old age homes;” and eligible for government-funded home- and community-based care and support services provided for under the Act, should they require them. To be eligible for such services, older people need to be in receipt of the Older Persons Grant. Two older people interviewed did not receive the Older Persons Grant because their income was above the eligibility threshold.

This report refers to the main racial groups recognized by the South African government, which we write as: black African, coloured (a term that refers to Indigenous people and people deemed to be of mixed race in South Africa), Indian/Asian, and white.[5] The interviewees were racially diverse: 41 black African, 13 coloured, 3 Indian/Asian, and 6 white. Forty-five of the interviewees were women and 18 were men.

Interviews were conducted in English or in isiXhosa, isiZulu, Sepedi, or Sesotho with English interpretation. The researcher informed all interviewees about the purpose and voluntary nature of the interviews and the ways that Human Rights Watch would use the information. We obtained informed consent from all interviewees, gave them the opportunity to decline to answer specific questions or end the interview at any time, and took precautions to avoid re-traumatizing the older people interviewed for this report. Human Rights Watch gave no incentives or compensation to interviewees, although it provided them with snacks and covered transportation costs for those who traveled to community centers to be interviewed. We also provided information to interviewees who were unaware of social security entitlements they may be eligible for.

All interviews were one-on-one, when needed also with an interpreter, and they were generally conducted in private settings. Seven older people consented to being interviewed with others in the room: four interviews took place in the presence of a family member and three in the presence of other older people.

To protect interviewees’ privacy, Human Rights Watch has withheld some names. Older people’s real names are only used if the interviewee specifically agreed to allow us to use their name and Human Rights Watch deemed that no risk would follow the publication of their name. For those who did not want their name included, we created pseudonyms that are indicated by given names and surname initials that do not reflect their real names. Human Rights Watch has also omitted the names of some service providers at their request.

At the time of the interviews, the South African Rand (R) was worth US$0.05.

During April and May 2023, Human Rights Watch provided the National Department of Social Development and the Eastern Cape, Gauteng, and Western Cape Provincial Departments of Social Development with a summary of our findings and asked each body to respond to specific questions. The Western Cape department responded on May 23, 2023, and its views are reflected in the report. The other departments had not replied by time of publication. Human Rights Watch also contacted private care and support providers included in the report to check the accuracy of their online data. Human Rights Watch received no response to any of those requests.

I. Background

South Africa’s apartheid system, which lasted from 1948 to 1994, has left a legacy for all those who lived through it and those who were born after it. As a result of apartheid policies of racial segregation, including in education and employment,[6] most black African, coloured, and Indian/Asian people who are now over 60 did not have access to decent education and decent work, which limited their ability to save for older age. Many were displaced as children or young people, separated from their families when the apartheid government forcibly removed whole communities using legislation that systematized the segregation of people on the grounds of race.[7]

Today, extreme levels of inequality in income and wealth and high levels of poverty persist,[8] corruption is rife,[9] and violent crime continues to rise.[10] These factors all impact the delivery of services for older people, for which the Department of Social Development is responsible. The percentage of black African, coloured, and Indian/Asian older people on low incomes and therefore in receipt of the Older Persons Grant is significantly higher than for white older people.[11] This is a direct legacy of apartheid.

Demographics of Older People

In 2022, South Africa had approximately 5.59 million people aged 60 and older,

comprising 9.2 percent of the total population.[12] That means that nearly one-tenth of South

Africans spent at least half of their life under apartheid.

According to government statistics, older women comprise 61 percent of people aged 60 and older.[13] Black African people are disproportionately underrepresented in the older population: they are 81 percent of the total population but only 62 percent of those aged 60 and older.[14] In 2020, 34 percent of older people were not functionally literate,[15] and 55 percent had chronic illnesses compared to only 10 percent of the overall population.[16] Over half, 58 percent, of those aged 75 and older were living with disabilities in 2016.[17]

Economic Situation in South Africa

According to the World Bank, South Africa is the most unequal country in the world.[18] Although racial differences are the biggest contributing factor to income inequality, gender also plays a significant role, with women earning 38 percent less than men.[19]

In recent years, South Africa’s economy suffered because of the Covid-19 pandemic. South Africa experienced a 6.4 percent real decline in GDP in 2020.[20] A 2020 Gallup survey found that 55 percent of workers stopped working at least temporarily during the second half of the year,[21] and by November 2022, the general unemployment rate was 33.9 percent.[22]

Furthermore, South Africa, like other countries affected by the global cost-of-living crisis, saw significant price rises, with the annual food inflation rate at 12 percent in September 2022 and the annual bread and cereal inflation rate at 19 percent, a 13-year-high.[23] The cost of a 750 milliliter bottle of cooking oil rose 30 percent from R31 (US$1.7) in September 2021 to R41 (US$2.3) in September 2022.[24] Despite severe disruptions to electricity supplies, known as “loadshedding,”[25] electricity prices also rose, including because the national power provider raised electricity tariffs by just under 10 percent in the fiscal year 2023 (FY23).[26] Transportation costs increased by nearly 20 percent year-on-year in September 2022.[27] All these increases have particularly strained low, fixed incomes, which the majority of older people live on, with almost 75 percent receiving financial social security entitlements, known as “social grants” in South Africa, that are conditional on a low income.[28]

South Africa has an extensive social security system funded through general taxation,[29] and on which the country spends a relatively large portion of its GDP compared to other upper-middle income countries.[30] At the end of 2022, nearly 19 million social grants reached almost 12 million people every month.[31] The Older Persons Grant, also known as the Old Age Grant, is a means-tested social security entitlement funded by the National Department of Social Development and administered by the South African Social Security Agency (SASSA).[32] The National Department of Social Development’s estimated budget for FY23 for all household financial social security entitlements was R253 billion (US$13 billion), of which the Older Persons Grant was R99 billion (US$5 billion),[33] with approximately 4 million recipients.[34] In October 2022, at the time of Human Rights Watch’s interviews with older people, the grant was R1,990 (US$108) per month for people aged 60 to 74, and R2,010 (US$109) per month for those 75 and older.[35] In February 2023, the National Treasury announced increases of R90 (US$5) and R10 (US$0.50) per month in April 2023 and October 2023 respectively.[36]

Because the majority of older people could not access a decent education or decent work for at least half their lives under apartheid, and therefore faced restrictions to save for older age, 87 percent of black African, 81 percent of coloured, and 58 percent of Indian/Asian older people received means-tested social security entitlements in 2020, compared to only 30 percent of white older people.[37] 

Work opportunities are critical to improve the economic situation of those on low incomes. Despite that, in 2020, only 12 percent of all older people participated in the labor force: 20 percent of white, 11 percent of coloured, 10 percent of black African, and 9 percent of Indian/Asian older people.[38] These low figures may be explained by the fact that, despite constitutional protections against age discrimination in employment and no mandatory retirement age,[39] 60 (or 65 at the latest) is considered the normal retirement age and can be written into employment contracts.[40] In addition, with youth unemployment at 66.5 percent in June 2022,[41] the government has an Employment Tax Incentive (ETI) which encourages employment of people aged 18 to 29.[42] In 2020, 52 percent of older people lived in a household without an employed adult.[43]

Government’s Responsibilities to Older People

The duty to provide care and support services for older people lies with the Department of Social Development, whose mission is to “transform society … through the provision of integrated, comprehensive and sustainable social development services.”[44] The 2006 Older Persons Act is among the parliamentary acts that constitute the legal framework for the department.[45]

Service delivery is decentralized. At the national level, the Department of Social Development is responsible for reforming laws, developing policies, setting norms and standards, running the Older Persons Active Ageing Campaign, and funding the Older Persons Grant. At time of writing, the department had put out for consultation a draft national strategy on ageing for 2022-2027.[46]

Meanwhile, Provincial Departments of Social Development are responsible for the delivery of community- and home-based care and support services under the Older Persons Act in their province. The national regulations on implementing the Older Persons Act specify three categories of service centers. Category A service centers must provide two primary services, such as lunch and physical activity, and have minimal facility and staff requirements. Category B service centers must provide three or more primary services and have more facility and staff requirements. Finally, Category C service centers must provide six primary care services and as many secondary services as possible and have even greater staff and facility requirements.[47]

Provincial governments set the budget and priorities for social development spending, including for services for older people. Provincial treasuries allocate the budget for the Department of Social Development from the Provincial Equitable Share, a system by which national, provincial, and local governments receive an unconditional equitable share of national revenue to carry out their functions and provide basic services.[48]

Provincial departments use part of this budget to subsidize non-profit organizations to fulfill the government’s duties under the Older Persons Act to deliver community- and home-based care and support services.

The Gauteng Department of Social Development plans to shift from this model. In a consultation with non-profit organizations in September 2022, the Gauteng department expressed its aim to reduce the over-reliance on non-profits to deliver services by building state capacity to provide necessary services instead.[49] According to the department, non-profit organizations cannot respond to the scale of needs and the current partnership model is unsustainable because resources are going to non-profits at the expense of developing state capacity.[50] The Western Cape Department of Social Development told Human Rights Watch that it has not identified any need to take over services from non-profits, and it does not have the capacity to render more services directly itself.[51]

Older people who receive the Older Persons Grant and require support with their day-to-day activities are eligible for the Grant-in-Aid, a monthly social grant of R500 (US$27) to pay someone for full-time care and support at home.[52] Older people who require some, or part-time, support are not eligible. The Grant-in-Aid is only available to eligible people who receive two other social security entitlements, the Disability Grant and the War Veterans Grant.[53] As with the Older Persons Grant, it is also funded by the National Department of Social Development and administered by the South African Social Security Agency. The National Department of Social Development’s estimated budget for FY23 for the Grant-in-Aid was R2.1 billion (US$1 million),[54] with approximately 370,000 recipients.[55] In September 2022, at the time of Human Rights Watch’s first interviews with older people, the grant was R480 (US$26).[56] In February 2023, the National Treasury announced increases of R20 (US$1) and R10 (US$0.50) per month in April 2023 and October 2023 respectively.[57]

The Department of Social Development also employs social workers. However, according to the Minister for Social Development, as of March 2022, there was a shortage of 52,000 social workers across the country, including an additional 3,000 necessary[58] to implement the Older Persons Act.[59] The lack of social workers, according to the minister, was due to budget constraints.[60]

All state bodies providing services for older people are supposed to be engaged in executing the Older Persons Act in an integrated way,[61] but their efforts can be uncoordinated. A 2018 survey of service centers for older people subsidized by the Eastern Cape Department for Social Development found that only 1 out of 25 service centers surveyed were affiliated with the provincial health department.[62] Amendments to the act tabled in 2022, but not yet adopted at time of writing, attempt to address this current lack of coordination between the Department of Social Development and others involved in its implementation.[63] To improve coordination, the Western Cape Department of Social Development established an Older Persons Reference Group that meets quarterly and is comprised of various departments, including the Department of Health, and non-profit organizations. It also funds the Western Cape Older Persons Forum, which advocates for the rights of older people.[64]

The Department of Health is responsible for community-based health services, but these have focused on South Africa’s disease burden priorities and have not included social care and support for older people.[65] At time of writing, the Department of Health was developing a strategy on ageing and health for 2022-2027, the initial draft of which included collaborations with the Department of Social Development on community- and home-based care and services.[66]

Corruption

Although not the main focus of this report, the loss of funding due to corruption has impacted the ability of both government and non-profit organizations to deliver services effectively. The Department of Public Service and Administration is responsible for establishing anti-corruption norms and standards.[67]

There have been several inquiries into corruption in South Africa, including the Judicial Commission of Inquiry into Allegations of State Capture, also known as the Zondo Commission.[68] In June 2022, the commission estimated that about R57 billion (US$3 billion) spent by the state had been “tainted” by state capture, namely the redirection of state resources for personal or corporate gain, during former President Jacob Zuma’s tenure in 2009-2018.[69] In September 2022, the Special Investigating Unit said it had evidence that former National Lotteries Commission board members and senior executives had corruptly taken approximately R526 million (US$28.5 million) in lottery funds and that they were investigating a further R906 million (US$50 million).[70] The National Lotteries Commission is a funder for non-profit organizations, including those that deliver services to older people.[71]

Furthermore, corruption related to the South African Social Security Agency grants is of particular concern for older people. Between 2012 and 2022, 1,174 people, including 761 officials, were investigated for unduly benefiting from the social grant system, at an estimated loss of R537 million (US$29 million).[72] 

While the impact that corruption has had on the availability of services and support for older people remains unclear, the findings of these investigations give reason for concern that government resources for older people are being lost to corruption.

Crime

There is no national data on the prevalence of violence, abuse, and neglect of older people in South Africa.[73] However, rates were high in one small localized 2014 study on elder abuse,[74] with 64 percent of older men and 60 percent of older women reporting abuse in Mafikeng, North West province.[75] A 2021-2022 survey found that older people were more likely than the general population to be affected by consumer fraud, robbery, and personal theft.[76] According to a 2019-2020 survey, households headed by older people were as likely as other households to be the victim of household crimes, such as housebreaking and burglary.[77] A further 2019 study found that homicides of those 60 and older mainly occurred in a house, during the week and daytime, while homicides of younger people tended to happen in public spaces, during the weekend and at night.[78] Thus, older people isolated in their communities without access to care and support services may be at greater risk of crime.

These findings remain pertinent as crime rates, including sexual and gender-based violence,[79] continue to rise.[80]  

II. The Right to Live Independently and Within the Community

There are always new problems with the lack of 24-hour assistance. There’s no structure, no programs. Older people are just literally left on their own.

— Nosiphiwo Tetana, service center manager in Eastern Cape, September 28, 2022[81]

The Older Persons Act of 2006 enshrines the right of all older people to “live in an environment catering for his or her changing capacities”[82] and aims to “shift the emphasis from institutional care to community-based care.”[83] In doing so, the act attempts to address an apartheid legacy; namely, the emphasis on residential facilities to provide care and support for older people.

Under apartheid, social services were segregated by race, with far better services available to white people.[84] Although white people comprised an estimated 16 percent of the population in South Africa in 1980,[85] a year later there were 426 old age homes for white older people, 15 for black African older people, and 2 for Indian/Asian older people.[86] In 1982, 11 percent of white people aged 65 or older were reported to be living in state-run, state-subsidized, or private residential care facilities, which was reported to be the highest percentage of older people living in residential facilities in the world at the time.[87] A small number of white older people, therefore, had access to a comparatively large number of facilities, while black African, coloured, and Indian/Asian older people had access to virtually none.

In 2021, 27,623 older people, or 0.5 percent of the total population of older people, were living in the 417 residential facilities registered with the Department of Social Development.[88] Human Rights Watch has not been able to verify the number of unregistered facilities.

As noted above, the South African government established the Older Persons Act to provide a range of community- and home-based care and support services for those whose income falls below a certain level. Community-based care and support services under the act can include economic empowerment, recreational, and intergenerational activities; informational, educational, and counselling services, including on “HIV and AIDS, care for orphans, Alzheimer’s, dementia and basic emergency care;” spiritual, cultural, medical, civic, and social services; nutritious meals; skills-building for livelihoods; professional care and rehabilitation to ensure independent living; and integrated community care.[89]

For those grant recipients who are identified as “frail older people,”[90] the Older Persons Act also provides for home-based care and support services which are “a comprehensive range of integrated services,” professional or lay, that include hygiene and physical care; rehabilitation programs to support mobility, including assisted devices; respite care; informational, educational, and counselling services on ageing to family and community members; and free health care.[91]

Unavailability of Community-Based Care and Support Services

Although the goal of the Older Persons Act was intended to increase the provision of community-based care for older people, Human Rights Watch found that there are insufficient care and support services to realize the rights of older people in South Africa.

In large part, this is due to the government’s failure to set service provision targets based on an accurate assessment of the number of older people eligible for such services. Instead, the government sets targets based on the cost of services and the government’s budget, which inevitably means that these targets do not reflect the real numbers of eligible older people. Furthermore, although there is recognition that service levels are too low, there continues to be a lack of harmonization across provincial plans to increase access. Finally, the government allocates insufficient funding to non-profit organizations that are primarily responsible for providing community- and home-based services. Non-profit service providers are further constrained by the amount of their government-funded subsidy and other government restrictions.

Service Provision Targets Not Based on Scale of Needs

Exact data on how many older people in South Africa currently require care and support services is unavailable. In 2015, the World Health Organization estimated that 38 percent of those aged 65 to 74 in the country and 49 percent of those aged 75 and older required assistance with at least one activity of daily living: eating, bathing, dressing, getting in and out of bed, and/or using the toilet.[92]

In 2016, 35 percent of people aged 65 to 74 had disabilities, rising to 58 percent among people over 75 years.[93] In 2020, 56 percent of older people had one or more chronic illnesses.[94] There is no nationally representative data on dementia.[95] Alzheimer’s Disease International estimated a dementia prevalence rate in sub-Saharan Africa in 2015 ranging from 1 percent among older people aged 60 to 64 to 26 percent for those aged 90 and older.[96] A 2017 study of isiXhosa speakers in a low income rural region in South Africa found higher than expected levels for those aged 60 to 64, at 6 percent, rising to 20 percent for those aged 85 and older.[97]

The Department of Social Development’s target for community-based care and support services “due to affordability” is limited to 20 percent of “active vulnerable older persons,” defined as retired older people who can function independently, are still mobile and self-sufficient, and can perform daily tasks with ease, and 3 percent of “vulnerable frail older persons,” defined as older people whose “physical or mental condition renders them in need of 24-hour continuous care.”[98] Although there is no exact figure of how many older people require care and support services, it is believed to be significantly higher than the government’s current targets, given what is known about who requires assistance with activities of daily living and the levels of chronic illness, disability, and dementia among older people. While the South African Older Persons Forum told Human Rights Watch that the Department of Social Development considered the funding model that sets these targets to be outdated,[99] at time of writing the department had not responded to our request for information on how it set these targets.  

Moreover, the department has not even met its already too low targets. In 2021, the Department of Social Development reported 1,713 registered community-based care and support providers that deliver services to 97,923 older people, 90 percent of which are subsidized by the government.[100] While there is no data on who requires care and support services, that figure is less than 3 percent of the 3.7 million older people who were receiving the Older Persons Grant at that time.[101]

The Western Cape Department of Social Development estimates that, based on poverty levels and other social issues, 60 percent of older people in the province require access to community-based services from one or more of the departments of social development, health, or human settlements.[102]

Sylvia Lusiti, 71, who is blind and visits a service center in Dimbaza, Eastern Cape, is aware that government funding is insufficient for the services that older people are entitled to. “The government says that it’s too much on their shoulders to care for us,” she said. “It’s the money that talks. Food needs money, broken taps and toilets need money. People have different mindsets, they have dementia. There are a lot of things that require money.”[103]

Lack of community-based services can affect older people’s mental well-being. Marhafungana Silwanyana, 75, said there were no services for older people, social workers, or community caregivers where he lives in Mdantsane, a township in Eastern Cape. He expressed feeling isolated and despondent at home all day:

We have nothing to do, just sitting in the house. Sometimes, I wish to go and see people, but I’m always not feeling well. The days are long and boring. It’s really quite bad. I didn’t think my life would be like this.[104]

As a result of the lack of adequate budget allocations, hundreds of thousands of older people are not able to access the basic care and support services they are entitled to so they can live in dignity and are denied their fundamental right to live independently within the community.

Disparities in Provincial Plans to Increase Access to Services

As noted earlier, provincial governments are responsible for providing support services to older people entitled to them. Some provincial governments have acknowledged the need to increase older people’s access to services. However, provincial plans are inconsistent, resulting in older people in some provinces having greater access to services and support than in others.

Themba Magqadaza, 80, felt older people were treated differently based on where they lived. “Being an elder in the Eastern Cape feels like I’m part of another country, not South Africa, as there is so much that other provinces are doing for older people but not here,” he said. “For example, they supplement with food parcels. We don’t get that privilege here.”[105]

Furthermore, even the largest planned increases would only cover a small proportion of those believed to be entitled to services.

The government has an obligation to progressively realize access to care and support services for older people and to move as expeditiously and effectively as possible toward meeting this obligation. At all times, the government should fulfill its obligations without discrimination. The government is required to take the necessary steps to achieve full enjoyment of the rights contained in the International Covenant on Economic, Social and Cultural Rights (ICESCR) “to the maximum of its available resources,” which still exists even in times of severe economic constraints. When the number of older people receiving support, or the funding for those support services, is projected to decline in the face of growing need, such retrogressive measures may violate South Africa’s international human rights obligations.

The Gauteng Department of Social Development has recognized that increases in life expectancy necessitate more services for older people.[106] In the fiscal year 2020 (FY20), when 51 percent of older people in Gauteng had chronic illnesses (or 618,000 people),[107] the number of older people accessing community-based care and support services was only 17,436, and projected to rise by 41 percent to 24,617 in FY23.[108] However, the annual budget for services for older people decreased by 7 percent, from R350 million (US$19 million) in FY20[109] to R326 (US$18 million) in FY23,[110] and the Gauteng Department of Social Development failed to meet its projected increase, with the number of older people accessing services only rising to 19,675.[111] What is more, the budget cuts would result in nearly 4,000 fewer older people accessing care and support services in FY23 than in the fiscal year 2022 (FY22).[112]

In April 2023, non-profit organizations protested against FY23 budget cuts across different sectors.[113] The following month, the Gauteng premier announced that the budget cuts would be reversed, and non-profits paid the same as in FY22.[114] At time of writing, a number of service centers for older people had not signed their FY23 Service Level Agreement with the department.[115]

The Eastern Cape Department of Social Development committed to increasing the number of older people accessing community-based care and support services by 34.5 percent from 14,872 in FY20 to 20,003 in FY23.[116] In 2020, 62.5 percent of older people in Eastern Cape had chronic illnesses (or 435,000 people).[117] However, despite the department’s commitment to increase access to services by 34.5 percent, it only increased its annual budget for such services by 16 percent from R186.6 million (US$10 million) in FY20 to R216 million (US$12 million) in FY23,[118] and the number of older people accessing services only rose by 392 (less than 3 percent) to 15,264.[119]

The Western Cape Department of Social Development recognized in 2020 that the growth in numbers of people older than 85 has implications for frail care and support services and emphasized community-based and alternative models to residential care.[120] At that time, 55 percent of people 60 and older in the Western Cape had chronic illnesses (or 390,000 people).[121] Despite this, the number of subsidies for older people receiving community- and home-based care and support services was projected to decline by more than 15 percent over three years, from 16,396 in FY20 to 13,887 in FY23.[122] Meanwhile, the annual budget for services for older people declined by 8 percent over this period, from R268.4 million (US$14.5 million) in FY20 to R246 million (US$13.5 million) in FY23.[123]

Reductions in subsidies to non-profit organizations have resulted in several service centers for older people closing down, mainly in rural areas.[124] The department told Human Rights Watch that its budget for community-based care and support services depended on how much it had left once it had met its contractual obligations to residential, and assisted and independent living facilities. In FY23 this was R196 million (US$10 million) and R5 million (US$254,000) respectively, leaving R34 million (US$1.7 million) for community-based care and support services. The department recognized that this amount was not adequate to provide for the care and support older people required, but its repeated attempts to secure more funding through the Medium Term Expenditure Framework, the process which facilitates budget planning, had been unsuccessful.[125]

Insufficient Funding to Non-Profit Organizations that Deliver Basic Services

The government of South Africa contracts with non-profit institutions to provide the services due to older people under the Older Persons Act. However, in 2010, the Free State High Court held that Department of Social Development’s subsidies paid to applicants providing statutory services to older people were substantially inadequate to meet older people’s needs.[126] Subsequent judgments in the same case found that when a provincial Department of Social Development enters into agreements with non-profit organizations to provide constitutionally and statutorily mandated services on its behalf, the department must fund the full core costs of services except where non-profits are able to raise funds from elsewhere.[127]

The National Planning Commission acknowledged in 2012 that government funding to non-profit organizations had steadily declined since 1994, reducing the range and quality of services while the need for those services has risen.[128] Retrogressions in the availability of basic services are a violation of human rights.

Nearly a decade later, the National Department of Social Development recognized that provincial governments had not increased subsidies in line with inflation, sometimes even reducing them.[129] They noted that spending on social services was unequal across provinces and called on Provincial Treasuries to increase their budget allocation to provincial Departments of Social Development. The National Department of Social Development also committed to progressively fund the reasonable core costs of services, including staff wages, by setting and monitoring minimum service funding standards for subsidies paid to non-profit organizations.[130] While Human Rights Watch received information that the Department of Social Development has compiled a costing report on the Older Persons Act, as amended,[131] at time of writing, the department had not responded to Human Rights Watch’s request for information on whether it had set minimum service funding standards or how it monitors provincial departments’ delivery of services.

A number of provincial governments have taken steps to increase their budgetary allocations for older persons. In 2022, the Eastern Cape Department of Social Development increased its subsidy to community-based service centers from R200 [US$11] to R250 [US$13.50] per older person per month. However, the new amount would still appear to be far too low. Nosisi Mayamo, 64, feels betrayed by the government. She said:

What hurts me the most is [that] I vote every time without fail. I always vote, but when the time comes to help us, they give [the Dimbaza Society for the Aged’s service center] R250 for me: my transport, food, and activities. In reality, it would last me two days. How can they expect [the center] to feed me for 31 days?[132]

Despite apparent recognition that the subsidy was too low, the increased rate still fails to meet current costs. Service center managers in Eastern Cape who spoke with Human Rights Watch said that this subsidy covered only 40 to 50 percent of their costs.[133] Nomalinge Mlindi, chair of the Imbumba Association for the Aged, said: “We’re struggling how to use the money as it’s too little for a service center.”[134] Nosiphiwo Tetana, manager of the Dimbaza Society for the Aged’s service center, said non-profit organizations hire out their service center premises for funerals and parties to generate funds, and apply for food donations from grocery stores. In an attempt to fully cover costs, the Dimbaza Society for the Aged has applied for National Lottery funding every year but has not received any since 2019.[135] In September 2022, the Special Investigating Unit had evidence of and was investigating a total of approximately R1,432 million (US$79 million) corruptly taken lottery funds.[136] According to Nosiphiwo Tetana, “the National Lottery funds are depleted.”[137]

The Western Cape Department of Social Development in 2022 subsidized Category A service centers at R118 (US$6.50) per older person per month, Category B at R186 (US$10) per older person per month, and Category C at R197 (US$10.50) per older person per month.[138] Human Rights Watch learned from service center managers in the Western Cape that these amounts do not cover the core costs of services older people are entitled to. As a result, service centers either have to reduce costs by reducing services or increase funding from other non-government sources.[139] One service center described having to charge older people an annual membership fee of R20 (US$1) plus R50 (US$2.50) per month for food to help cover their costs. “The Department of Social Development doesn’t give [us] the full budget. Older people must contribute themselves,” the center manager said.[140]

Similarly, in Gauteng in 2022, the Department of Social Development subsidized one service center in Soweto, Johannesburg, at R332 (US$17.50) per older person per month. Although this increases by 6 percent each year, Kidi Mofube, the service center manager, told Human Rights Watch that this only covers about 70 percent of their costs.[141]

As a result of the government’s failure to allocate sufficient funding to non-profit service providers, these institutions are unable to provide the care and support services the government has contracted with them to deliver. In other words, the government is neither providing the necessary level of services itself nor allocating sufficient funds to ensure that others can do so. As such it is not meeting its obligations to provide care and support so older people can live with dignity in their communities as guaranteed under the Older Persons Act.

Overly Prescriptive Rules on Non-Profit Service Provision

Every year, service centers apply for funding by submitting a business plan to the Department of Social Development stating how many older people are registered members at their centers. Subsequently, the centers enter into a service-level agreement with the Department of Social Development that funds services for the number of older people the department can afford, which may be fewer than registered at the beginning of the year.[142]

Inevitably, however, the number of people requiring care and support at a specific center fluctuates during the year, and service centers are often left with inadequate funding for the number of older people applying. The requirement to specify the exact number of beneficiaries of services instead of striking a balance between the need for robust regulation of private service providers and flexibility for service providers, puts a significant strain on both service centers and older people. In May 2023, Tetana said there were 15 older people on their waiting list and more who had made informal inquiries about joining the center.[143] “Every week, every month [older people] come and apply, and we have to turn them away as we can’t overload the budget,” Nosiphiwo Tetana, Manager of Dimbaza Society for the Aged’s service center, said.[144]

Budgetary concerns mean less access for older people like Rose Nduneni, 70, who wants to join Dimbaza Society for the Aged’s service center but was told the center was full. “They say they have a budget, they can’t afford any new members,” she said. “I have been trying to become a member since 2021.”[145]

The level of the subsidy, as well as overly prescriptive requirements regarding its allocation, can further limit the types of community-based care and support that service centers can provide. Departments of Social Development may have overly prescriptive rules that restrict how a service center spends the subsidy regardless of the particular requirements of the older people in its community. The Eastern Cape Department of Social Development, for example, prescribes how the R250 subsidy should be spent for FY23: 42 percent on food, 5 percent on personal health care, 13 percent on sports equipment and clothing, and 40 percent on administration.[146]

Several of the people interviewed by Human Rights Watch who had access to community-based service centers in Western Cape, Eastern Cape, and Gauteng provinces said that available activities were limited to daily meals, knitting and other crafts, massages from caregivers, and exercise and sports.[147]

These allocations do not reflect the range of services envisaged under the Older Persons Act, which also covers services such as professional care, rehabilitation, integrated community care, and development systems to ensure independent living of older people.[148] It also does not reflect the actual requirements of those being served by the center. As Nosiphiwo Tetana said: “At the provincial level, they don’t appreciate the uniqueness of this institution. They want us to fit into a template, a standardized way, not customized. The funding does not speak to the needs of this center.”[149]

Melumzi Sauka, deputy chair of the Imbumba Association for the Aged, said prescribed subsidy budget lines failed to cover staff costs. “It seems to me that [the Department of Social Development] doesn’t recognize the fact that there are employees that care for older people,” he said. “They tell managers to play around with the money [so] you have to pay [employees] from nutrition, from care [budget lines].”[150]

In addition, delays in payment of the subsidies can leave caregivers and other employees without payment. To avoid this, a couple of service center managers said that they had to increase membership fees, reduce the amount they pay employees, lend the center money, or pay out of their own pocket when the Department of Social Development is late paying the subsidies. Some centers, they said, are forced to close down. [151]

Over-Reliance on Family Care Providers

The Older Persons Act guarantees older people receiving community-based care and support services the right to “benefit from family and community care and protection in accordance with society’s system of cultural values.”[152] However, an over-reliance on family care excludes older people who do not have children or other family members who can provide support at home or who are unable, or choose not, to live with them.

Thembisa Loyila, 70, who lives alone in Mdantsane, Eastern Cape, said, “For older people, service delivery depends on if you have children or not. The government doesn’t have any responsibility for us. As older people, we have to take care of each other. We only have ourselves.”[153] Theresa Lee, 60, has children but had to move into a shared community-house for older people in Cape Town. “You can’t live with kids these days,” she said. “Children are not there for their parents. You’ve given your all for them. They say they have their family first.”[154]

Moreover, some older people do not want to ask their family for support. Elizabeth, 79, lives in a farm laborer’s house in Western Cape. She is diabetic, has high blood pressure, and “a dizziness in her head that never goes away.” Her niece visits her once a week to do the washing, cleaning, and cooking. Even though she does not expect payment, Elizabeth normally gives her something. “I don’t like to be dependent on other people,” she said. “I’d rather not ask for anything.”[155]

An over-reliance on family support also affects older people whose family caregiver goes out to work during the day.

Nozala Ndoyana, 84, lives with her youngest daughter, Pamela Nokuthembela Ndoyana, 47, in Gwaba village, 36 kilometers outside of East London. Pamela washes her mother and cooks her breakfast before leaving for work in East London. Due to her working hours and the time it takes to get to and from work on public transport, Pamela has to leave Nozala alone for up to 12 hours each day. Pamela constantly worries about her mother when she is at work. “Even though I make her food, she may not think to eat it, and go without food all day,” she said. Sometimes Nozala wanders away from their house. If the neighbors see her, they will assist her, but there is no one to be with her all day. Pamela is also worried about her mother’s safety at home in a community where everyone knows she is alone all day. “It is easy for an intruder to [come into the house and] maybe rape her.”[156]

Family caregivers, often younger women, are also affected by the lack of care and support services for older people.[157] Globally, women are more likely to provide care and support for family members with chronic illnesses, including for older people.[158] In South Africa, they may also have to take on responsibility for other family members the older person can no longer support. In addition, low marriage rates among younger black African women mean that many do not have a spouse to share the responsibilities and financial costs with.[159]

Pamela, Nozala’s daughter, does not have a personal life and cannot afford to socialize, financially and because she does not want to leave her mother alone any later at night. Her employment opportunities are also limited. “If I was offered a full-time job in a different province,” she said, “I couldn’t go. I couldn’t take the opportunity.”[160]

Challenges Related to Home-Based Services

Home-based services are essential for many older people to continue living in their homes, and the Older Persons Act specifically provides for these. However, many of those interviewed by Human Rights Watch reported that these services are often unavailable or unaffordable, which undermines older people’s right to live independently and deeply affects their well-being and safety.

Unavailability of Home-Based Services

Some older people Human Rights Watch interviewed in Western Cape,[161] Eastern Cape,[162] and Gauteng[163] said that no one came to check on or visit them or other older people at home in their communities.

Ben Zolile, 75, lives in River Park, Johannesburg. His health is “up and down,” and on the morning of the interview, his “head was spinning from the blood pressure.” He said:

I used to go to a place called Hope as they used to feed older people there and [give us food] to take home, but now my knees can’t carry me there. No one comes to my house. There are no other services that come to my home.[164]

Several factors contribute to the lack of home-based care and support services, including lack of coordination between government departments; inadequate government funding and subsidies, which affects staffing; and inadequate numbers of social workers.

There is often a lack of clarity as to who is responsible for providing in-home care in a particular area. In one case, a service center manager did not know if their center was allowed to provide home-based care and support services to older people who could not come to their center because another non-profit organization was already providing community-based healthcare services under the Department of Health in the area.[165] This lack of coordination between government departments impedes the delivery of home-based care and support services as provided for under the Older Persons Act.[166]

The government does not provide adequate funding for the service center staff who are necessary for home-based care and prescribed in the regulations governing implementation of the Older Persons Act, including home-based caregivers, social workers, service center managers, administrators, cooks, and drivers.[167] Melumzi Sauka, deputy chair of the Imbumba Association for the Aged, said that because he cannot pay for a cook, one of his caregivers has to do the cooking, reducing the time for caregiving.[168]

The Western Cape Department of Social Development told Human Rights Watch that service centers have to pay employees out of the subsidy from the department and that the department did not have sufficient resources to pay for salaried positions.[169]

Nosisi Mayamo, 64, was deeply concerned about the lack of adequate staff in the service center she attends and called for an increase in caregivers:

One caregiver is responsible for all of us here [at the service center] and has to go to homes; bring food, incontinence pants; wash, change the linen, and put those incontinence pants on them; and on the same day, come back [to the center] and continue with the program at the center. This is too much. On top of that, they don’t get paid. That gives me sleepless nights.[170]

A lack of state-funded drivers also impacts home-based services. One caregiver employed by a non-profit organization said: “We don’t have as wide a reach as we’d like as we don’t have enough transport. We’d like to reach more people than we do currently.”[171]

South Africa is plagued by a shortage of social workers, which has a negative impact on the availability of home-based care and support services. Although the Older Persons Act recognizes the role of social workers, in March 2022, the Minister for Social Development said 3,000 more social workers were needed to implement the Act.[172] The lack of social workers, according to the Minister, is due to budget constraints.[173] One social worker employed by the Department of Social Development said that the department typically either gives social workers an internship or a three-to-six month contract as the department does not have the funds to employ social workers for longer periods.

As noted above, the Department of Social Development does not provide funding for drivers, so anyone delivering in-home care typically has to take public transportation or drive themselves. This lack of transport can also affect service delivery. They said:

We have two vehicles, so you only have access to a vehicle once or twice a month. You try to prioritize an issue: child abuse and rape can get a vehicle. If there is a high-risk case with an older person, we may get priority. Sometimes there is no vehicle to go to some areas.[174]

Gladys Booi, 69, felt social workers had little interest in older people. “Social workers say they come [to our homes] once a month, [but] sometimes they don’t and even [when they do come], once is not enough. They don’t come as they don’t want to know.”[175]

Unaffordable Home-Based Services

In an attempt to get the services they require, some older people pay for home-based support themselves even when they are eligible for government services. Dinah Valentine, 61, had a stroke when she was 57 and had to stop working as a museum assistant in Porterville, Western Cape. Since then, she has paid a family friend R200 [US$11] per month to wash her clothes and bedding and cook for her twice a week. “If I have something nice, I give it to her: fruit, sugar, meat, potatoes,” she said. “R200 is very little.”[176]

Inadequate Grant-in-Aid

People over 60 whose monthly income falls under a certain threshold are eligible to receive the Older Persons Grant. In addition, those eligible for the Older Persons Grant and who require support with their day-to-day activities are eligible for the Grant-in-Aid, a monthly social grant to pay someone for full-time support at home.[177] In 2022, 283,771 older people, war veterans, and people with disabilities, who may also apply, received the grant.[178] This number was estimated to rise to 370,000 in 2023.[179]

In September 2022, the grant was R480 (US$26) per month,[180] and it increased to R500 (US$27) in April 2023.[181] This is a paltry amount: based on the 2023 national minimum wage of R25.42 per hour (US$1.32), R500 provides only 20 hours, less than one day of full-time care and support per month.[182] And there are additional costs associated with support that the Grant-in-Aid does not cover. For example, a pack of 14 large, adult, own brand (or store brand) incontinence pants from a drugstore chain cost R205 (US$11) in May 2023.[183] Thus, the cost of three incontinence pants per day for a month is R1,362 (US$71), nearly three times the entire Grant-in-Aid monthly allocation.

Privately provided home-based care and support services are available, but the costs are prohibitive and not affordable for all, exacerbating already existing inequalities. Rates can vary significantly. As illustrative examples of the costs of private services, in March 2023, one provider that published its rates on the internet, SA Nanny, charged R325 (US$17.50) for a nine-hour day shift and R8,000 (US$435) per month for a live-in caregiver,[184] equivalent to 16 months’ worth of the Grant-in-Aid. Another, CareChamp, started its rates at R552 (US$30) for an eight-hour day shift and charged R24,999 (US$1,360) per month for a live-in caregiver,[185] equivalent to four years’ worth of the Grant-in-Aid.

Florence Limekaya, 79, has lived for over 40 years in Helen Joseph Women’s Hostel, one of three single-sex hostels built by the apartheid government in 1971 and 1972 in Alexandra, Johannesburg, to control the movement of black migrant workers.[186] She has arthritis, which limits her mobility, but only recently heard about the Grant-in-Aid when the South Africa Social Security Agency distributed information pamphlets at the hostel. Limekaya successfully applied for the grant, which she uses to pay children who live in the hostel to go to the shops or fetch water for her. The grant is not enough to pay for more support. If she requires more support, her plan is to knock on her neighbor’s wall. “The only problem,” she said, “is that because the door is locked, there is no way in if I can’t stand up [to unlock the door].”[187]

Sylvia Lusiti, 72, is blind and lives alone. She gets the Grant-in-Aid, but it is not enough to pay someone to assist her for the whole month. Instead, she uses the money to pay someone to wash her clothes or to make repairs to her home.[188]

Human Rights Watch learned that few older people we interviewed, who could be eligible for the Grant-in-Aid, are aware of its existence. Ben Movenda, 76, uses a wheelchair and relies on help from his neighbors to use the communal toilet or enter or leave the shack[189] where he lives in Alexandra, Johannesburg. There are high steps and no ramps, the road surface is uneven, and he does not have the upper body strength to wheel himself. “I’ve got no support. I know nobody,” he said. “I need someone to help me, but who is going to pay for that?” He had not heard of the Grant-in-Aid until we interviewed him.[190]

Nozala Ndoyana, 84, lives with her youngest daughter, Pamela Nokuthembela Ndoyana, 47, who works in East London, 36 kilometers away from the village where they live. “If I could afford it,” Pamela said, “I would pay a caregiver to step in when I go to work.” The Older Persons Grant her mother gets is not enough to cover those costs and the family had not heard of the Grant-in-Aid. Pamela said they would apply for the grant. “But,” she said, “I don’t think I can find someone who can look after her for R500 a month.”[191]

Others had not applied for the Grant-in-Aid because they had incorrect information about the eligibility criteria. Esther M., 64, shares a bedroom with her 87-year-old mother in her daughter’s house in Cape Town. Esther said her daughter struggles to look after her and her mother, who sits in the house or backyard all day and cannot walk to the shops by herself. Because Esther heard that people who get the Older Persons Grant are ineligible for the Grant-in-Aid, she did not apply for the latter for her mother.[192] In fact, in order to qualify for the Grant-in-Aid, one must be on a Disability, War Veteran’s, or Older Persons Grant.[193]

Impact of Lack of Home-Based Services

The absence of home-based services has a negative impact on the ability of older people to live independently and can cause them significant distress. Some older people told Human Rights Watch that they did not wish to go into or were scared of dying in an old age home, and felt the conditions were bad in the old age homes they knew about.[194]

Boyce Msutu, 80, is a retired teacher who moved from a night shelter into a shared community house for older people managed by a non-profit organization in Cape Town, Western Cape. Care and support services are not available in the shared house. “When you are not able to care for yourself,” he said, “they take you to another place. I’d be very worried. I want to die here.”

According to the manager of a service center in Khayelitsha, in Western Cape province, because there are no home-based services in the township and families cannot afford the additional costs of a state-subsidized old age home, older people end up in unregistered old age homes that do not receive subsidies and are sub-standard in quality.[195]

The lack of home-based care and support can prevent older people’s participation in their communities and daily life. Nosiphiwo Tetana, manager of the Dimbaza Society for the Aged’s service center, said they provide caregivers to fill this gap. “Some older people can’t do everyday things like going to visit someone, going to the clinic, keeping up with their medication, collecting their Older Persons Grant, and paying their life insurance or burial policies.”

The lack of home-based services can also affect older people’s physical well-being and safety. One community-based caregiver employed by a non-profit organization in Eastern Cape said: “There are lots of older people who need support in the community who are not being served by us. We meet with community members and ask them to help them, to check in [on the older person] every now and then. Their health suffers the most.”[196]

According to a government-employed social worker, older people are exposed to various dangers when they are isolated and not getting the home-based care and support they are entitled to:

They’re raped, killed, there’s gender-based violence. When we get a case, we try to do something, for example, remove them to a neighbor’s house or find someone who can assist.… It can take months to find somewhere, and you only get a bed [in an old age home] when someone [there] dies.[197]

A large number of the older people interviewed by Human Rights Watch said they felt unsafe in their homes or were scared of crime, abuse, or drug use.[198]

One community-based caregiver said grandchildren were the biggest source of abuse of older people, some of whom were drug users. Staying one step ahead and keeping older people’s medication safe was one of the caregiver’s responsibilities. They said:

The grandchildren smoke it, they’ve found new ways. They take anything that is a pill. They don’t smoke it exclusively but mix it with whatever herbs they have to make their drugs stronger.[199]

Lack of Education Led to Low-Paying Jobs and No Savings for Older Age Apartheid has had life-long consequences. Many older people Human Rights Watch spoke to had worked in the informal sector and in low-paid and insecure jobs, including as factory workers,[200] domestic workers,[201] cleaners,[202] farm laborers,[203] or in construction. [204] As such, they were often left without access to workplace pensions or the ability to save for older age. Those unable to save for older age are significantly more likely to require the support services guaranteed by the Older Persons Act and more likely to suffer from inadequate government funding for those services. Themba Magqadaza, an 80-year-old black African man from Dimbaza, left school after two years, before learning to read or write. He worked in the mines for almost 30 years until ethnic violence between Zulu and Xhosa miners forced him to leave in the late 1980s without a pension. With the Older Persons Grant as his only income, he relies on a daily meal from a community service center to prevent him falling into greater debt than he already is with loansharks.[205] Hilda Sesing, an 82-year-old black African woman, never went to school. She moved from Mahikeng (previously Mafikeng) to live in Helen Joseph Women’s Hostel, Alexandra, Johannesburg. For many years, she cleaned and ironed for a white family. She still lives in the hostel. “Nobody from the government,” she said, “comes to the hostel to check on older people.”[206] When the apartheid government forcibly removed Rose Nduneni, a 70-year-old black African woman, to Dimbaza in 1969, there were no schools. The authorities started building the lower and middle schools in mid-1969, but there was no secondary school. When she finished primary school, she became a nanny; her brothers went to work in the mines. The Dimbaza Society for the Aged’s service center was unable to accept her as a member due to lack of funds.[207]

Inadequate Housing

Affordable, accessible, safe, and habitable housing is essential for older people if they are to live independently and fully participate within the community.[208] In 2021, 70 percent of the total population owned their homes, 19 percent rented, and 12 percent occupied their homes rent-free.[209] Fifteen percent of those in metropolitan areas lived in informal dwellings.[210] 

Although the Department of Human Settlements delivered 3.4 million housing units between 1994 and February 2022,[211] in 2021, the national housing backlog was estimated at 2.7 million homes.[212] Several older people said they have been waitlisted for state-subsidized housing for many years.[213] Elizabeth Kekana, 78, applied in Soweto in 1979 but had to move into rented accommodation in Alexandra 20 years later as she was still waiting to receive a house.[214] Ben Movenda, 76, has lived in a shack in Alexandra since 1982 for similar reasons. He put his name down for state-subsidized housing in 1986.[215] Florence Limekaya, 79, hoped to move out of the women’s hostel in Alexandra where she has lived since 1980 and spend her older age enjoying life in her own house. She applied for state-subsidized housing in 2004. “I never thought,” she said, “that I would stay in the hostel until this age.”[216]

Bahija J., 75, rents a house in Cape Town and has been on the waiting list for 40 years:

The previous government failed me, and now this government is failing me too. I haven’t been to check at the Civic Centre for more than two years. Everything stays the same.[217]

Nazeem Rakip, 60, has been living with his wife in one room in a disused hospital in Woodstock, Cape Town, for more than four years. The hospital, now known as Cissie Gool House, is one of two disused public buildings that have been occupied by Reclaim the City, a social movement campaigning for affordable housing in Cape Town’s city center. Nazeem originally applied for state-subsidized housing in 1984. He bought a house in 2000, losing his eligibility, but reapplied for state-subsidized housing when he lost his house after an accident at work. “I've now been on the list for 10 years. I wrote to the city; they told me I just need to wait.”[218]

Unaffordable Housing

Those who live on the Older Persons Grant may be unable to afford adequate housing. The Social Housing Act stipulates that rental for social housing should not exceed one third of a household’s monthly income, recognizing the need for affordable housing for people on low incomes.[219] Older people living on the Older Persons Grant fall within that low-income category. However, many of those interviewed by Human Rights Watch said they were unable to find any housing that was that low in price, and if they could, it was often of poor quality or far from city centers. This is due to a number of factors.

The abolition of rental controls on privately rented accommodation in 1999[220] and gentrification in places like Woodstock, Cape Town, have increased rents so much that some older people can no longer afford to stay in their hometowns.[221] Previously, only one third of Nazeem Rakip’s income went toward rent. “We could live with this,” he said. He now lives with his wife in one room in a disused public hospital in Woodstock, pushed out of the private rental market by rising rents. “We want accommodation within the city, not 50, 70 kilometers on the outskirts.”[222]

In September 2022, Ntombuana Mbelu, 82, rented a room in a shared house in East London, Eastern Cape, for R1,600 (US$87) per month (80 percent of her Older Persons Grant). There was running cold water and a communal toilet shared by everyone in the house. However, the house had lacked electricity for nine months because the landlord had not paid the electricity bill. Furthermore, Ntombuana’s room was damp, her ceiling leaked, and she used buckets to catch the drips when it rained. The backyard where she hung the laundry was strewn with rubbish and rubble.[223]

For others, the only affordable accommodation is in small outbuildings, known as “backrooms,” that people have built in their backyards.[224] Vusindaba Walaza, 81, lives on his own in a small backroom in his landlord’s backyard in River Park, Johannesburg, that costs R800 (US$43) per month (40 percent of his Older Persons Grant). The eight backrooms in the backyard share one communal toilet.[225]

Lack of Social Housing Options

Older people on low-to-middle incomes who cannot afford rental housing on the open market may qualify for social rental housing subsidized by the Department of Human Settlements.[226] Under the Social Housing Act, social housing institutions must provide this on an affordable basis[227] and give special priority to older people and people with disabilities.[228] Article 9 of the Constitution prohibits both direct and indirect discrimination on the basis of age.[229] The Social Housing Regulations prescribe that monthly rentals for social housing must be based on the operating costs of the rental unit and cannot exceed one third of the household’s monthly income.[230] Therefore, if the monthly rental exceeds R666 (US$35), one third of the value of the Older Persons Grant, an older person living solely on the grant will not qualify because their monthly income is too low.

Physically Inaccessible Housing

Physically inaccessible housing limits the ability of older people with disabilities or reduced mobility to live independently within the community and reinforces their marginalization and social exclusion.[231] Ben Movenda, 76, is a wheelchair user whose wife uses crutches. Since 1986, they have lived in a one-room shack in Alexandra with high steps to the door and no ramp, requiring him to rely on neighbors to carry him inside and outside his home. The communal toilet, which is shared by about 50 people, is also inaccessible for his wheelchair. On top of this, Movenda does not feel safe in his shack due to the prospect of it being destroyed. “A lot of people are staying in the shacks, and when they are burned, they have nowhere to sleep,” he said. “It happens a lot.”[232]

Lack of Physical Security

Physical security and safe housing are essential for older people if they are to live independently and fully participate within the community. Security or burglar bars are a common feature on house doors and windows in South Africa. Not having effective burglar bars can make older people feel unsafe, especially given the high crime rates.

Sylvia Lusiti, 72, is blind and has lived alone in a government house since 2016. Her house has no fence or burglar bars. “There’s no security,” she said. “At midnight, people knock at the windows, at the doors.”[233] Lesedi N., 79, cannot afford repairs to her roof, which drips when it rains; her water pump, which leaks; or burglar door, which is broken. She also cannot lock the door and said she “sleeps with God” in the absence of protection.[234]

Uninhabitable Living Conditions

Habitable housing is also essential for older people if they are to live independently and fully participate within the community. However, older people are often unable to afford the necessary repairs to make their houses habitable and to protect against the cold, damp, heat, rain, wind, and other threats to health.[235] Vuyiswa Vena, 75, lives on her own in Khayelitsha and is trying to save money to fix her roof, which she temporarily covered with her neighbors’ tarpaulin. Repair rates range from R1,500 (US$82) for labor plus the cost of materials to R7,800 (US$424) in total, equivalent to just under four months of her Older Persons Grant.[236]

Others, like Bahija J., 75, are at the mercy of their landlords. Bahija pays R2,000 (US$109) per month for a two-bedroom house in Woodstock in disrepair and without hot water. Her landlord has promised her hot water since 1996 when she moved in. “The house is in disarray, moldy, stuffy, leaking,” she said. “The landlord knows all about it. There is a housing tribunal, [but] I feel it’s on the landlord’s side. I went to try to make the landlord do repairs, but there’s nothing till now.”[237]

The living conditions for older people in government housing can also be inadequate. Gladys Booi, 69, has a leaky government-built house in Dimbaza. Even after she replastered it, her wardrobe is crumbling because of all the water. “It’s a free house, but it’s destroying what I have,” she said. “I’m not sure where the dignity is for older people if they have to live like this.”[238]

Hilda Sesing, 82, has her own room in Helen Joseph Women’s Hostel, in Alexandra, Johannesburg, but the bathrooms lack water and the gas stoves in the communal kitchen do not work because they were vandalized. She gets up at 4 a.m. every day to get water from an outside tap to wash and cook on an electric stove in her room before the scheduled electricity stoppages, also known as loadshedding, begin.[239]

Older People’s Recommendations to the Government

The older people interviewed by Human Rights Watch expressed different priorities. Some called on the government to support more social activities in their communities.[240] Some said the government should provide more old age homes, especially for older people being abused or without children, given the absence of home-based care.[241] Others prioritized home-based care, wanting the government to employ and train more home-based caregivers,[242] provide assistance for older people around the house,[243] and send social workers to visit older people at home to check on their well-being.[244]

Older people also told Human Rights Watch the government should provide more affordable housing for older people,[245] improve their living conditions,[246] and build more houses on empty land.[247] Gawabulla, 75, who lives in the operating theatre of a disused public hospital in Cape Town, said: “The government should have concentrated on building houses, and not just for older people.”[248]

III. South Africa’s Legal Obligations

South Africa’s Older Persons Act, adopted in 2006 in part to address the legacy of apartheid, enshrines the rights of older people to live in an environment that caters to their changing capacities and emphasizes community- and home-based care and support services. The Social Assistance Act provides an Older Persons Grant for those whose income falls below a certain level, and a Grant-in-Aid for those who require full-time home-based care. Despite this promising framework, however, Human Rights Watch’s research found that the vast majority of eligible older people are unable to access the basic care and support services they require, and that the South African government has failed to respect, protect, and fulfill older people’s right to live independently and within the community.

This failure is partly due to the Department of Social Development’s lack of adequate resources to ensure community- and home-based care and support services for all older people entitled to them; its failure to cover the full core costs of services provided by non-profit organizations contracted to deliver statutory services on the department’s behalf; and its imposition of restrictions on how funding can be spent, all of which negatively impact its human rights obligations to ensure access to community- and home-based care and support services.

Challenges also stem from disparities in provincial government plans to increase access to services, provincial governments’ failure to request sufficient funding from the national government to provide services based on an accurate assessment of the number and requirements of older people, insufficient numbers of social workers, and a lack of coordination between the health and social development departments.

Furthermore, home-based care and support services may be unavailable or unaffordable, and older people do not always know about the financial assistance provided by the Grant-in-Aid, all of which affects older people’s physical and mental well-being. The Grant-in-Aid itself is insufficient to pay someone to provide the 24-hour assistance it is there to cover. As a result, many older people do not have access to the care and support services they are entitled to so they can live with dignity in their own homes and communities.

Relevant International Human Rights Standards

The Right to Live Independently and Within the Community

International human rights instruments contain numerous provisions that are relevant to the rights of older people.

The Universal Declaration of Human Rights (UDHR) recognizes the “inherent dignity” of all people and sets out the rights that are necessary for a life with dignity. Article 22 states that everyone has the right to social security and to the realization of “the economic, social and cultural rights indispensable for his dignity and the development of his personality.”[249] Furthermore, article 25 states that everyone has the right to an adequate standard of living “and the right to security in the event of… old age.”[250]

The right to social security; to an adequate standard of living, including adequate food, clothing, and housing; and to the highest attainable standard of physical and mental health, are also guaranteed in the International Covenant on Economic, Social and Cultural Rights (ICESCR), the fundamental international treaty governing socioeconomic rights.[251]

States have an obligation to ensure the right to an adequate standard of living, including housing, without discrimination.[252] The UN Committee on Economic, Social and Cultural Rights—the body of independent experts established to monitor the implementation by states of the ICESCR—has made clear that these rights apply to “everyone.”[253] Furthermore, as the UN independent expert on the enjoyment of all human rights by older persons (hereinafter “independent expert”) has stated, “the human rights to an adequate standard of living and to adequate housing apply regardless of age.”[254]

While the ICESCR recognizes that the full realization of the rights contained in the covenant may need to be achieved progressively, a state party has an obligation to take steps to “the maximum of its available resources” to achieve those rights.[255] The CESCR has stressed that “even in times of severe resource constraints the vulnerable members of society can and indeed must be protected by the adoption of relatively low-cost targeted programmes.”[256]

The right to housing has been defined by the CESCR as “the right to live somewhere in security, peace and dignity.”[257] That right also encompasses the right of older people to live independently in the community, which “derives from the right to an adequate standard of living and is interdependent with other rights.”[258] The independent expert has stated: “Older persons have an equal right with others to decide where to live and with whom, and not to be forced into a particular living arrangement. This right includes having the necessary means and support enabling them to make decisions and live their lives in accordance with their wills and preferences.”[259]

The CESCR has identified several factors that must be considered in determining the adequacy of housing, including accessibility and affordability.[260] The CESCR noted that disadvantaged groups, “such as the elderly”, “must be accorded full and sustainable access to adequate housing resources.”[261]

The independent expert concluded that states should improve the affordability of housing for older people, including by eliminating discrimination on the basis of age and other grounds in all housing-related laws, policies, and practices; providing housing adapted to the needs and rights of older people; and providing a range of care and support services that promote their dignity, autonomy, and independence and enable them to remain in their home.[262] The UN special rapporteur on adequate housing has also recognized physical security and a safe environment as elements of the right to adequate housing.[263]

Older persons with disabilities have the right to live independently in the community under article 19 of the Convention on the Rights of People with Disabilities (CRPD), which South Africa ratified in 2017.[264] The Committee on the Rights of Persons with Disabilities—the body of independent experts that monitors compliance with the CRPD—has stated that article 19 includes having access to safe, adequate, and affordable housing and that “access to housing means having the option to live in the community on an equal basis with others.”[265]

With regard to the right to live independently in the community, the Committee on the Rights of Persons with Disabilities has noted the prohibition of discriminatory practices such as the exclusion of individuals or groups from the provision of certain services, stating that “States parties should prohibit and prevent third parties from imposing practical or procedural barriers to living independently and being included in the community, for example by ensuring that services provided are in line with living independently in the community and that persons with disabilities are not denied the possibility to rent or are not disadvantaged in the housing market.”[266]

States that have ratified the CPRD are under an immediate obligation to repeal or reform policies, laws, and practices that prevent people with disabilities from securing affordable and accessible housing.[267]

The independent expert, observing that “older persons, especially those with disabilities, are often denied the right to live independently and to be included in the community,” has cautioned against forcibly placing older persons in institutions.[268] The Committee on the Rights of Persons with Disabilities has emphasized that people with disabilities, including older persons with disabilities, should be able to “exercise choice and control over their lives and make all decisions concerning their lives.”[269] This right should apply to all older persons.

Support Services

Both the CESCR and the Committee on the Rights of Persons with Disabilities have stressed that access to care and support services is essential to the full enjoyment of the right to live independently in the community.

The CESCR has also stressed that “insofar as respect for the rights of older persons requires special measures to be taken, States parties are required by the Covenant to do so to the maximum of their available resources.”[270] With regard to persons with disabilities, the CESCR has stated that the right to an adequate standard of living in relation to article 11 of the ICESCR also includes the need to ensure that “‘support services, including assistive devices’ are available ‘for persons with disabilities, to assist them to increase their level of independence in their daily living and to exercise their rights’.”[271]

With regard to the exercise of autonomy and independence in relation to adequate housing, the independent expert has noted that some of the primary barriers for older persons include “the lack of adapted and diversified housing options, the lack or limited availability of care” and “social and/or support services at home and in the community.”[272] The independent expert observed that support services include “the provision of help or assistance to someone who requires it to carry out daily activities and participate in society. Such services are often not available or not affordable for older persons, especially those with disabilities.”[273]

Under article 19 (b) of the CRPD, states have an obligation to ensure that “persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.”[274] These supports should be available to anyone with a disability on an equal basis, meaning the support should be provided without consideration of the level of support the person requires.[275]

The Committee on the Rights of Persons with Disabilities has specifically addressed the over-reliance of some governments on support and care being provided solely by families. The committee has emphasized that persons with disabilities “must have the same degree of choice and control over their lives as other members of the community,”[276] and has noted that “often, persons with disabilities cannot exercise choice because there is a lack of options to choose from. This is the case, for instance, where informal support by the family is the only option, where support is unavailable outside of institutions, where housing is inaccessible, or support is not provided in the community.”[277] Furthermore, the committee has stressed that every state party must ensure a standardized minimum support level sufficient to allow the exercise of the right to live independently and be included in the community, which includes, among other things, development of a “concrete action plan for independent living for persons with disabilities within the community, taking steps toward facilitating formal supports for independent living within the community so that informal support by, for example, families is not the only option.”[278]

The Committee on the Rights of Persons with Disabilities has also underscored that “individualized support services must be considered a right rather than a form of medical, social or charity care. For persons with disabilities, access to a range of individualized support services is a precondition for independent living within the community.”[279]

The independent expert has observed that the right of older persons to live independently includes “having the necessary means and support enabling them to make decisions and live their lives in accordance with their wills and preferences.”[280]

Relevant Regional and National Legal Standards

The African Charter on Human and Peoples’ Rights, which South Africa ratified in 1996, provides that older people have the right to “special measures of protection in keeping with their physical or moral needs.”[281] Similarly, the Protocol to the African Charter on Human and People’s Rights on the Rights of Women in Africa (the Maputo Protocol), which South Africa ratified in 2004, guarantees “special protection” to older women, including in relation to their “physical, economic and social needs.”[282]

The South African Constitution guarantees older people’s rights to sufficient food and water and adequate housing.[283] It also guarantees non-discrimination on the basis of age and disability.[284] Section 27 of the constitution recognizes the right to social security, including the right to “appropriate social assistance.” In 2020, the Eastern Cape High Court found that home-based care and support services for older people are the type of social assistance envisaged by section 27 of the constitution and “not only assist the beneficiaries to survive but also to survive with dignity, in the exercise of their right to dignity.”[285]

The South African Older Persons Act, signed into law in 2006, provides for the right of all people 60 years of age and older to live in an environment that caters to their changing capacities.[286] The act “shift[s] the emphasis from institutional care to community-based care in order to ensure that an older person remains in his or her home within the community for as long as possible.”[287] The CRPD does not limit the provision of support services in the community with the qualifier “for as long as possible.”[288] As of November 2022, the South African Department of Social Development had tabled amendments to the Older Persons Act, including provisions for inter-governmental coordination of its implementation and support for older persons with disabilities and chronic illnesses.[289]

Under the Social Housing Act, the government and social housing institutions must give special priority to older people for social housing.[290] 

Acknowledgments

This report was researched and written by Bridget Sleap, senior researcher on the rights of older people. Heather Barr, associate director in the Women’s Rights Division, provided support and guidance in conducting interviews. The report was edited by a senior editor and by the deputy director, Elizabeth Kamundia, in the Disability Rights Division. Fred Abraham, associate program director, and Holly Cartner, senior legal advisor, respectively provided programmatic and legal review.

The following Human Rights Watch staff provided specialist review: Noma Masiko-Mpaka, Ashwanee Budoo-Scholtz, and Allan Ngari, Africa Division; Lena Simet, Sylvain Aubry, and Aruna Kashyap, Economic Justice Rights; Kayum Ahmed, Health and Human Rights; Annerieke Smaak Daniel, Women’s Rights; and Graeme Reid, LGBT Rights.

Adriana Masgras, coordinator in the Disability Rights Division, gave production assistance and support. Layout and production were done by Rafael Jimenez, graphic designer; Travis Carr, publications officer; Jose Martinez, administrative officer; and Fitzroy Hepkins, senior administrative manager. Taurai Maduna, video editor/producer, filmed and produced the video accompanying this report.

The Samuel Centre for Social Connectedness (SCSC) and AARP generously supported this work. We offer our deepest thanks to SCSC for their unwavering partnership and to AARP for their steadfast commitment.

Most importantly, Human Rights Watch thanks the older people who courageously shared their personal stories and experiences for this report.

Summary

Many times, I refused to leave the house to try to escape; it was just too difficult for me to run with crutches. It would take several people to help me get into the car, which would make them an easy target for an airstrike. I wanted to avoid exposing other people to that risk.  

— Thara J., who lost a leg in an airstrike in 2015 when she was 13

The conflict in Syria has been one of the deadliest in the world, killing at least 350,000 people over the past decade and forcibly displacing over 13 million. Widespread atrocities, extensive violations of international human rights and humanitarian law, and high humanitarian needs have characterized the conflict. Civilian infrastructure has been damaged or destroyed on a massive scale, the health system has been ravaged, and an estimated 12 million—about 54 percent of Syria’s population—are food insecure, with the Covid-19 pandemic further exacerbating humanitarian needs. The United Nations (UN) Human Rights Council has expressed concern that people with disabilities, along with women, children and older persons, are among the most at risk of abuse and violence in Syria.

Based on interviews with 54 people between October 2020 and June 2022, this report examines the specific impact of the conflict on children with disabilities. It examines the risks faced by children with disabilities during attacks, mental health impacts of the conflict, the impact of poverty and a lack of access to humanitarian assistance, health care, assistive devices, and education on children with disabilities’ lives and rights. It also discusses stigma and discrimination and how these impact their human rights.

Interviewees included 6 children between the ages of 12 and 17, 2 young adults with disabilities, and 20 parents and 2 adult relatives of children with disabilities. Human Rights Watch focused on people living in northwest and northeast Syria, because of the particularly high humanitarian needs, lack of infrastructure, and greater accessibility of interviewees compared with other parts of Syria. Human Rights Watch also interviewed 18 representatives of international and local humanitarian organizations and 2 medical professionals working in Syria.

Armed conflicts, including the one in Syria, present specific risks and harms to children with disabilities and their rights. All parties to the Syrian conflict have a responsibility to protect children, including those with disabilities, and ensure humanitarian access.

Children themselves, young people, and their families described how children with physical disabilities faced barriers to fleeing attacks without assistance. A key challenge for escaping hostilities is the absence of assistive devices—such as wheelchairs, prostheses, or hearing aids—that are largely unavailable. Children with a hearing disability or developmental or intellectual disabilities may not hear, know, or understand what is happening during an attack. Children with different types of disabilities are at risk of abandonment if their families feel unable to meet their needs or to bring them to safety.

The situation has worsened as Syria’s 11-year-conflict has increased poverty and structural barriers faced by children with disabilities and degraded the support systems that existed prior to the conflict.

According to the UN Office for the Coordination of Humanitarian Affairs (OCHA), in 2020, households in Syria with more than one member with a disability were nine percent less likely to be able to meet their basic needs than other households. By 2022, all Syrians’ ability to meet their basic needs decreased as compared with 2020. People with disabilities and children were among those disproportionately impacted by worsening poverty.

Families of children with disabilities interviewed for this report were often unable to afford basic necessities, such as food and shelter, let alone the necessities a child with a disability might require, such as therapies and assistive devices. These therapies and assistive devices were largely unavailable where the interviewed families lived.

Parents of children with disabilities in Syria struggled to access health care for their children, information about their children’s disabilities, and early intervention services for children with developmental conditions and disabilities.

Covid-19 has exacerbated these difficulties, particularly when accessing necessary medical care, given Syria’s already over-stretched healthcare system with insufficient functional facilities and low number of qualified personnel per capita.

In addition, mental health and psychosocial support services were either lacking, generally not inclusive of, or inaccessible to, children with disabilities. This has compounded the Syrian conflict’s devastating impact on the mental health of children with disabilities who, unlike other children, worry that their situation may put family members at risk or that they will be abandoned during attacks and have a chronic lack of access to inclusive education and support services, including mental health services.

Children with disabilities in Syria also face increased barriers to accessing public schools and educational services provided by humanitarian organizations. Inaccessible roads, inaccessible school facilities, and a lack of assistive devices pose challenges for children with physical disabilities. A lack of trained teachers, inclusive curricula, and stigma impede the right to education of children with sensory, intellectual, and psychosocial disabilities.

This report documents discrimination, exclusion, verbal abuse, and threats against children with disabilities. It also includes one case of a young girl who was allegedly chained by a relative.

Approximately 28 percent of Syria’s current population has a disability, according to a UN survey, nearly double the global average. A 2021 countrywide UN Humanitarian Needs Assessment in Syria found 19 percent of children between the ages of 2 and 17 have a disability, and another assessment published in March 2022 found 21 percent of children between ages of 2 and 4 in northeast Syria have a disability. Another needs assessment published in 2022 notes a “chronic lack of data on persons with disabilities at the internally displaced persons (IDP) site level,” suggesting the actual numbers and percentages of children with disabilities may be higher than reported.

Conflicts generally increase the prevalence of disability as a result of injury, mental health trauma, and a lack of access to basic needs and essential services. In 2022, OCHA reported that one in four children under five in some parts of Syria are chronically malnourished and at risk of experiencing physical and cognitive impairments, repeated infection, developmental delays, disabilities, and even death. While there is no recent data on how many people have acquired a disability as result of the war, in 2015, United Nations Children’s Fund (UNICEF) reported more than 1.5 million adults and children in Syria have acquired a disability due to the war.

The humanitarian response in Syria has been one of the largest in recent history with billions of US dollars contributed: $6.7 billion was pledged in 2022, including by the United States, European Union (EU), and EU member states. However, according to the UN, this is not enough to meet rising humanitarian needs. The response has also been complicated by the Syrian government’s actions—namely, the co-optation of humanitarian assistance to fund atrocities, advance its own interests, punish those perceived as opponents, and benefit those loyal to it—as well as the closure of the border crossings with Turkey used to bring humanitarian assistance into Syria. As of 2022, 14.6 million people, including 3.3 million people with disabilities over 12, in Syria required humanitarian assistance: an increase of 1.2 million from 2021.

Despite being one of the largest in recent history, humanitarian operations in Syria have not sufficiently captured the rights and needs of children with different types of disabilities. According to the UN Humanitarian Needs Overview 2021 report, people with disabilities in Syria “face systematic challenges in accessing humanitarian services on an equal basis with others.” However, that report makes very limited reference to the situation of children with disabilities.

Human Rights Watch research found that international and local humanitarian organizations operating in Syria that provide services to children with disabilities either do so in so-called special settings or separated from other children; sometimes, only disability-focused organizations provide such services. While targeted services are important, they should be provided alongside inclusive and universal programs, especially in educational settings.

The massive impact of the war on children with disabilities in Syria has highlighted the need for the UN and governments to commit serious attention and resources to mitigate the impact of the conflict on children with disabilities. However, UN monitoring and reporting continues to pay less attention to children with disabilities, compared with other children. For example, the UN secretary-general’s 2021 report on children and the Syrian armed conflict includes data on children who have been injured or “maimed,” which can cause long-term disability, but does not frame concerns or responses in the context of the rights of children with disabilities. General protections, while applicable to children with disabilities, are not adequate responses to the specific barriers, risks, and harms faced by children with disabilities.

Without detailed and careful UN monitoring and reporting on the experiences of children with disabilities, the full impact of the conflict on them and their rights will remain unclear. Consequently, the protection response, including the humanitarian response, may miss or underserve a substantial group of children.

The rights of children and adults with disabilities in Syria’s conflict are protected by international humanitarian law and international human rights law. Customary international humanitarian law applies to all parties to a conflict, both state and non-state actors and protects civilians in times of wars, like Syria’s internal armed conflict. International human rights law applies at all times. The Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD) explicitly remind states of their obligations to ensure the safety and protection of children, including those with disabilities, during armed conflicts.

The CRPD requires the UN and governments to move beyond simply identifying people with disabilities, including children, in a list of “vulnerable” groups and instead to apply a disability rights approach to the norms of civilian protection. This includes being cognizant of the experiences and rights of children with disabilities during attacks and evacuations; in accessing basic necessities, education, and humanitarian services; and during peace processes factor these experiences into targeted protocols, rules, and approaches to civilian protection.

The UN Security Council should request that humanitarian assessment reports and plans and reports by the secretary-general and other UN agencies on Syria specifically cover the situation of children with disabilities. The secretary-general should systematically address the impact of the armed conflict in Syria on children with disabilities in his reports and briefings.

UN country teams in Syria should do more to document the conflict’s impact on children with disabilities. The UN special representative on children and armed conflict should work with country teams to ensure information about the disproportionate impact of the conflict on children with disabilities is collected, analyzed, and reflected in relevant reports.

Donors and humanitarian organizations operating in Syria should provide targeted, rights-respecting, tailored, and disability-led responses to the rights and needs of children with disabilities, including their rights to food, adequate housing, rehabilitation services, health care, mental health and psychosocial support services, and education.

All parties to the conflict in Syria should immediately end all direct, indiscriminate, and disproportionate attacks on civilians and civilian objects and ensure respect for international humanitarian law and international human rights law. They should also allow prompt and unhindered humanitarian access to UN agencies and humanitarian organizations to deliver impartial assistance to civilians in need across Syria. Finally, they should ensure children with disabilities have access to education, health care, assistive devices, and other services, and are protected from discrimination and abuse.

 

Methodology

 

Human Rights Watch interviewed 6 children between the ages of 12 and 17 (2 girls and 4 boys), 2 18-year-olds with a disability (1 woman and 1 man), 20 parents (12 fathers and 8 mothers), and 2 adult relatives (1 man and 1 woman). The listed age is their age at the time of the interview. The majority of children described in this report were born shortly before the conflict began in 2011 or during the war. As such, their lives have been overwhelmingly shaped by the armed conflict and the violent attacks, displacement, and degradation of essential and other services that have characterized it.

Human Rights Watch also interviewed 18 representatives of UN agencies, international humanitarian organizations, and local humanitarian organizations and 2 medical professionals working in Syria.

All interviews occurred between October 2020 and June 2022. The researcher conducted interviews remotely by telephone or, for a small number, by video call. This approach created numerous challenges as it restricted Human Rights Watch’s ability to contact children with disabilities and their families, especially those without electricity or internet access. Due to the inherent limitations of using a telephone, it was particularly difficult to directly reach and communicate with children with certain types of disabilities, such as hearing and intellectual disabilities.

Interviewees included children or relatives of children who have various learning, physical, developmental, intellectual, sensory, expressive, or receptive language disabilities or autism.

All interviews with relatives and children were conducted in English with Arabic interpretation. Most of the interviews with humanitarian workers were in English; some used Arabic interpretation. The researcher informed all interviewees about the purpose and voluntary nature of the interviews, the ways in which Human Rights Watch would use the information, and that they would not receive any compensation for their participation. The researcher obtained consent from all interviewees and gave the children and their families the opportunity to decline to answer specific questions or end the interview at any time.

Human Rights Watch took precautions to avoid re-traumatizing the children and adult relatives interviewed for this report. This was especially important in light of the trauma experienced by many Syrians and the lack of accessible psychosocial support services across Syria. All interviews with children occurred in the presence of a parent.

To protect the privacy of the children and their families, Human Rights Watch has withheld some names. Parents and adult caregivers’ names are used only if the interviewee specifically requested that their name be included and Human Rights Watch deemed no risk would follow the publication of their name. Real names of adults are written as a first name and an initial. Pseudonyms are indicated by a first name and are noted in the footnotes. All children’s names are pseudonyms, except in a few cases where their adult relatives gave consent, they had been identified in previous Human Rights Watch reporting, or they appear in multimedia materials connected to this report.

Human Rights Watch has also omitted the names of several staff members of international and Syrian NGOs at their request to preserve their anonymity and ability to work without constraints in Syria.

Nearly all interviewees lived in northwest and northeast Syria, which are, respectively, under the control of anti-government groups and the Kurdish-led Autonomous Administration. Some families lived in areas in the northeast under the control of Turkey and affiliated armed groups, and two families lived in areas in the northeast under the control of the Syrian government. Human Rights Watch selected these areas because of their particularly high humanitarian needs, lack of infrastructure, and greater accessibility of interviewees compared with other parts of Syria. Human Rights Watch also interviewed one parent in Damascus. Four of the humanitarian workers were based inside Syria; the others were based in neighboring countries.

This report aims to publish information on human rights concerns affecting children with disabilities and their families in Syria. It does not seek to identify the parties to the conflict responsible for the attacks mentioned in it, but instead seeks to stress their responsibility to protect children with disabilities and their rights and to ensure humanitarian access.

 

Background

Most of the territory in Syria is under the control of the government.[1] Under international human rights law, Syrian authorities bear the primary responsibility of respecting, protecting, and fulfilling the rights of children with disabilities in Syrian territory. This includes ensuring the protection of children with disabilities caught up in the conflict and providing them with access to services to address their basic rights and needs, such as health care, assistive devices, education, and other necessary services and support.[2]

However, the Syrian government has obstructed the work of humanitarian agencies and organizations providing impartial assistance. Instead, it should facilitate their efforts, which should be inclusive of and able to reach people with disabilities in need.

Northern Syria is under the control of anti-government groups, the Kurdish-led Autonomous Administration, or Turkey and Turkish-backed armed groups. Those who exercise effective control in Syria’s northwest and northeast have obligations to respect and protect rights, including of children with disabilities, by providing services or facilitating the work of humanitarian agencies.

Under international humanitarian law, the Syrian government and all other parties to the conflict should take all feasible precautions to minimize harm to civilians and civilian objects and should not carry out attacks that would fail to discriminate between combatants and civilians or cause disproportionate civilian harm.

Since the start of the armed conflict, Human Rights Watch has documented human rights violations and abuses, war crimes, and crimes against humanity, ranging from torture and mistreatment to indiscriminate attacks and the use of chemical weapons. These violations of international humanitarian law and human rights law have significantly affected all Syrians, including children with disabilities.

This report aims to publish information on human rights concerns affecting children with disabilities and their families in Syria. It does not seek to identify the parties to the conflict responsible for the attacks mentioned in it; instead, it seeks to stress their responsibility to protect children with disabilities and their rights and to ensure humanitarian access.

 

Children with Disabilities at Greater Risk During Attack

Situations of armed conflict and crises often force people to flee when violence erupts.[3] People with disabilities are at high risk when their communities are attacked. In March 2021, the Secretariat of the Conference of States Parties to the CRPD highlighted the disproportionate risks faced by people with disabilities during all armed conflicts, including their ability to flee attacks.[4] They may be less able to flee, especially in the absence of advance warning or access to assistive devices. They may be left behind: their families sometimes face a split-second decision, either to flee with those who can escape easily or to remain behind to provide support.

These global findings are extremely applicable to Syria, given its population of people with disabilities. Approximately 28 percent of Syria’s current population are estimated to have a disability, a figure that is nearly double the global average.[5] Children have disabilities at similar levels as well. A 2021 nationwide needs assessment found 19 percent of Syrian children aged 2 to 17 have a disability, and another assessment published in March 2022 found that 21 percent of children aged 2 to 4 in Northeast Syria have a disability.[6] The latter report cites a “chronic lack of data on persons with disabilities at the IDP site level,” which, since more than six million Syrians are internally displaced, suggests that the actual number of children with disabilities may be higher than reported.[7]

While there is no recent data on how many people have acquired a disability as result of the war, in 2015, the United Nations Children’s Fund (UNICEF) reported more than 1.5 million people in Syria have acquired a disability due to the war.[8]

The 2021 Syria UN Humanitarian Needs Overview found people with disabilities, as well as older people, are at increased risk of being separated from their families and caregivers, and they are also in need of assistive devices to support their independence.[9] Human Rights Watch’s findings further confirm these risks and needs. 

Eighteen parents of children with disabilities, two children, and two 18-year-olds in Syria told Human Rights Watch about the serious barriers to safely flee attacks experienced by children and adults with disabilities. Children with physical disabilities struggled to flee and seek shelter, often needing to rely on family members or others to carry or support them during their escape. In three cases, parents and relatives described being forced to leave their children with disabilities in order to flee safely with other family members.

Thara J., 18, was originally from a town in Idlib governorate in the northeast. She lost her left leg in a January 2015 barrel bomb attack when she was 13.[10] (Barrel bombs, used primarily by the Syrian government, are improvised, unguided bombs launched from a helicopter or aircraft.) Since 2016, Thara J., who still lives in Idlib governorate, has experienced dozens of airstrikes and shelling attacks, adding that there was never an advance warning, which would have allowed her more time to flee. She has difficulty running with crutches and worries about exposing her family to risks when they stay behind to assist her during an attack:

I feel that I am a heavy burden on my family; they have to help me escape, which puts them at risk. But when I decide to stay at home, my family will stay home with me. The scariest thing when I hear an airstrike is knowing that I might lose someone I love.[11]

Musa is a 13-year-old with a physical disability who uses a manual wheelchair. Musa, his mother, and three of his siblings fled Murat al-Numan and are internally displaced persons (IDPs) in Afrin region, Aleppo governorate, in northern Syria. His father died at the beginning of the war. “We never thought of leaving our area until we got directly hit by the airstrikes,” his mother said. “One time I had to flee with my other children, leaving [Musa] behind with his grandfather and his uncle who helped him flee.”[12] According to Musa himself, “We had to flee many times, and I had to crawl from one room to another to flee.”[13]

Children with a hearing, developmental, or intellectual disability may not hear, know about, or understand what is happening during an attack. Ahmed, a father of six children, including an 11-year-old girl who is deaf, and his wife fear for their daughter’s safety because she cannot hear airstrikes or shelling where they live in Harem district, Idlib governorate. “My wife and I keep our eye on her all the time, and if we hear an attack, we have to physically go and grab her to bring her with us to the shelter,” he said.[14]

Fatima J., the mother of an 11-year-old boy with an intellectual disability, recounted a nighttime attack in Afrin:

The balcony on our house was hit, and he didn’t understand what was happening. We had to take him by the hand and get him out to secure his safety. He didn’t know what was happening.[15]

Several other parents and family members of children with disabilities in Syria shared similar experiences.[16]

Interviews specifically revealed how the absence of assistive devices—such as wheelchairs, prostheses, or hearing aids—made it challenging for children with disabilities to escape hostilities. This has also broadly affected their lives and enjoyment of their rights, discussed in more detail in Section V.

Osman is a father of five children, including Reem, 13, who has cerebral palsy. The family is currently internally displaced in al-Shaddadi town in northeast Syria. Osman recounted several incidents of fleeing attacks, including airstrikes and missile strikes, and the struggles he encountered because Reem does not have a functioning wheelchair.[17]

Osman recalled one instance:

A house next to us was hit. Everyone started running away, and I didn’t know what to do.… I was thinking of my child Reem and my other children. How will I be able to flee having to carry Reem? She was about 11 at that time, and she is a tall and well-fed child. And I have four more children. I went outside the house. I was in shock, not knowing what to do and seeing everyone else running away.

At first, I started carrying both Reem and her 2-year-old brother while my wife took care of our other children. But I couldn’t continue like that. I asked my brother for help, he found a wheelbarrow, and we put her and her brother in it. That’s how we were able to flee. I pushed the wheelbarrow for 9 kilometers. It was very difficult.[18]

Merwa, the mother of two girls, 7 and 9, with hearing disabilities, in Afrin, has been unable to repair one of her daughter’s hearing aids, which broke after she fell off a bicycle. She fears they will not be aware of attacks without functioning hearing aid:

This is why I am looking for support. Even if I am screaming, and they are not close enough for me to just grab them [during an attack], they won’t be able to hear me. I am scared for them.[19]

In the panic of an attack, some families leave children with disabilities behind. Eighteen parents told Human Rights Watch they encountered difficulties escaping an attack while supporting their children with disabilities. Two single parents of children with developmental and physical disabilities described fleeing without being able to assist those children, forcing them to leave those children behind. Both parents were reunited with their respective child during the attack or at a later time.

The uncle of Omar, a 10-year-old with intellectual disabilities, who lived next door to Omar, described an instance when his parents mistakenly left the boy behind while fleeing an attack:

He has no fear, and he doesn’t understand [the danger]. He doesn’t react like other children. Once, early in the morning, at about 8 a.m., we had just had breakfast when a jet flew over our houses. When this happens, we usually run to a small cave, about 10 meters from the house. We all ran to the cave, and then we realized Omar was not with us. His parents ran back to the house to fetch him, and just a few seconds later, their house was struck by a missile, completely destroying it. They had saved him at the very last minute.[20]

Similarly, Ahmed A., an 18-year-old with a physical disability from Deir al-Zor governorate in southeast Syria, recounted a time he was abandoned during an airstrike:

It was really hard for me to protect myself like everyone else was. One time, I was out with my friends when airstrikes started. Everyone was just thinking of themselves and started running, and I was left alone. I could only walk very slowly to find a place to hide.[21]

One parent of three, including an 11-year-old boy with speaking and intellectual disabilities, has himself had a physical disability since his leg was amputated in 2006.[22] Together with his wife and children, he fled west Aleppo and was living in a tent in a camp site in northern Aleppo for nine months at the time of the interview. He expressed his challenges in getting to safety:

It’s really hard for people like me who have disabilities to flee any airstrikes or explosions. When I had to leave my town and flee to safety, I depended on other people to hold me and run with me, because I couldn’t flee alone.[23]

In April 2019, Nujeen Mustafa, a disability rights activist from Syria, shared the difficulties she faced as a child with a disability fleeing attacks in Aleppo city to the UN Security Council.[24] Nujeen described living in Aleppo during attacks and how often her mother would carry her to the bathroom to hide since it would have been hard to carry Nujeen down five flights of stairs to get to shelter. “Every day, I feared that I could be the reason that my family was one or two seconds too late,” Nujeen said.[25] Similar to the children included in this report, Nujeen did not have a wheelchair. She said, “many people with disabilities cannot depend on their families to help them reach safety. Often, because their family members have been killed or have already left.”[26]

International Legal Obligations in Armed Conflict

The CRPD obliges states parties to take “all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk,” including armed conflict, in accordance with their obligations under international humanitarian law and international human rights law.[27] The CRC has similar provisions for children in armed conflicts, calling on states parties to “undertake to respect and ensure respect for rules of international humanitarian law applicable to them in armed conflict relevant to the child.”[28]

International humanitarian law, which applies to all parties to the conflict, includes a fundamental obligation to distinguish between civilians and combatants at all times.[29] In order to protect civilians, international humanitarian law also requires parties to the conflict to give effective advance warning prior to an attack that may affect the civilian population.[30] Advance warnings should be accessible to and inclusive of people with disabilities, such as by making them accessible using different forms of communication.[31] The Office of the United Nations High Commissioner for Human Rights said: “the failure to comply with this obligation [to provide an advance warning] in an accessible and inclusive manner amounts to discrimination on the basis of disability.”[32] To be effective, a warning should, where possible, allow sufficient time to maximize the opportunity for civilians with disabilities to act on the warning.[33]

 

Poverty and Lack of Access to Services

Poverty and its detrimental impact on rights, affects many families in Syria, but those with disabilities are particularly affected. On average, children with disabilities and their families are more likely than others to experience poverty and social exclusion.[34]

Armed conflict and forced displacement further exacerbate this.[35]

Poverty has impacted the lives and human rights of all children with disabilities included in this report. Due to the conflict, children with disabilities and their families lost homes, assets, income, livelihoods, and assistive devices, and lived in at-risk areas and inadequate conditions, including tents. Families interviewed struggled to provide necessities for their children, including food, health care, adequate housing, assistive devices, medication, therapies, diapers, and transportation fees to access schooling and some service centers.

Households in Syria with more than one member with a disability are nine percent less likely than other households to be able to meet their basic needs.[36] 60 percent of households with a person with a disability are food insecure compared with 51 percent of households not reporting members with a disability.[37] The UN defines food insecurity as lacking regular access to enough safe and nutritious food for normal growth and development and an active and healthy life.[38]

Linked to the above, adults with disabilities in Syria, particularly those who are internally displaced, are nearly 20 percent less likely than those without disabilities to be involved in income-generating activities that could help alleviate poverty.[39] However, physical barriers to infrastructure and services have impacted the ability of people with disabilities to engage in community activities and to have opportunities to generate income.[40]

According to one parent with a physical disability, “There are no opportunities to provide food for the table. It’s really difficult for everyone, but especially for people with disabilities.”[41]

Food insecurity is rampant in Syria. It is estimated that a lack of access to proper nutrition has meant that millions of children are experiencing insufficient growth and are at risk of “impaired” physical and cognitive development.[42]

More than 550,000 Syrians under the age of 5 were chronically malnourished in 2021.[43] In 2022, Syrians were forced to reduce their food intake, and one in four Syrian children were “stunted” and may experience complications regarding their “physical and cognitive development, repeated infections, development delays, disabilities and death.”[44] The lack of proper nutrition, coupled with the lack of medical care and rehabilitation, may lead to a disability.[45] Existing research shows that children with disabilities are, in general, at high risk of malnutrition.[46]

Unfortunately, there is a gap in research on how lack of access to nutrition has impacted children with disabilities in armed conflicts. Regarding the Syrian context, OCHA committed to “develop an indicator for inclusion of children with disability and plans to improve data collection specifically strengthening the nutrition-disability link,” to better understand the specifics of this particular situation.[47]

Only two of the parents interviewed by Human Rights Watch had a secure source of income. Adults with disabilities interviewed for this report and parents and caregivers of children with disabilities reported difficulties in finding employment opportunities. Six of the mothers interviewed were single parents, including some who could not work because they needed to provide nearly constant care to their children with disabilities. This reflects findings that female-headed households in Syria are less likely than households overall to be able to meet basic needs, and their ability to do so steeply deteriorated in 2020.[48]

All but three families interviewed for this report were internally displaced at the time of the interview, including seven families who lived in tents in makeshift camps with no camp management. Three families who were displaced at the time of interview returned to their homes in 2020 and 2021, and two other families moved from makeshift camps to rented housing by June 2022.

Humanitarian actors in northwest and northeast Syria cannot guarantee the delivery of humanitarian protection and assistance in “self-settled, informal sites that lack camp management.”[49] This is particularly concerning as continued hostilities and repeated displacement have led to “approximately 6.6 million internally displaced persons and approximately 106,000 returnees currently living in economic hardship with widespread humanitarian needs.”[50]

This context negatively affects children with disabilities and their families, who may require additional resources to meet their children’s needs.

The financial situation of Dib H., a father of seven children, including a 13-year-old boy with developmental disabilities, has been dire since they fled their hometown of Maaret al-Nu’man, Idlib governorate. At the time of the interview, they were living in a tent in a makeshift camp near the border with Turkey. He said:

Even before coming to this area, there was no help or support, but I was able to work and provide for my family. We didn’t look for anyone else to help. Now it’s been a year since we’ve been in this area, all the money we had saved is gone, and I cannot provide for my family.[51]

Dib H. explained that he cannot afford the medication prescribed for his son with a disability. “There are days when I cannot even afford bread or water, let alone medication,” he said.[52]

Ahmed, a father of 6 children and whose 11-year-old daughter has a hearing disability, was living in a tent in an IDP camp in Harem district, Idlib governorate, when Human Rights Watch interviewed him in early 2021. He described his pre-war economic situation:

Before 2011, I had a secure job with the government and, in addition, had my own agriculture supply shop because I have a bachelor’s degree in agriculture engineering. I had enough income for my family, and we were living in peace with no fear. When the war started, everything changed, and I lost my job and my house. My daughter has a disability, and I cannot even afford to buy her hearing aids.[53]

In June 2022, when Human Rights Watch interviewed Ahmed again, his family had moved to Azaz town, Aleppo, where Ahmed had secured a job and rented a house. His monthly salary is USD $250 and their rent is USD $100 per month.[54]

Ahmed A., the 18-year-old with a physical disability living in Deir al-Zor, explained that he and his family were unable to purchase the adult diapers he requires because of his disability, which affects his bladder and bowel control. Instead, he has had to use children’s diapers, which do not meet his needs, because they were cheaper. “It’s emotionally hard to be in this situation because we cannot afford the right diapers,” Ahmed A. said. “I cannot go out with my friends; I just sit at home.”[55]

Ahmed A.’s mother, Hana I., added, “It’s very expensive and very difficult to afford diapers, sometimes we even have to stop buying food so we can buy them.”[56]

Yezda lives in Kobani and has three sons, two of whom have disabilities. Rekan, 11, is of short stature. According to Yezda, this is due to a health condition that resulted in the misalignment of his bones, which has impacted his growth. Yezda’s other son, Mustafa, 14, lost his left foot and experienced a severe injury to his right leg after stepping on a landmine in October 2020.[57]

At the time of Mustafa’s injury, Yezda was the sole breadwinner, earning only USD $17 per month teaching Kurdish, so she could not afford proper health care for her family. She expressed her worries:

I am suffering a lot because of my youngest child [Rekan]. I do not know what is exactly happening. I have no money to take him to any doctor to explain and help.[58]

Yezda stopped teaching to take care of Mustafa, forfeiting the family’s only income. Although their house partially burned down during the conflict, they have continued to live there due to their lack of other options.[59]

Syrian girls, including girls with disabilities, can be at risk of child marriage due to poverty, as families often see marrying off their daughters as a way to alleviate financial pressures. The UN Syria Commission of Inquiry noted that the fragile economic situation, among other factors, contributed to child marriage.[60] It reported that a 12-year-old girl with physical disabilities was married off in Douma, Damascus governorate, for these reasons.[61]

Amina became a single mother after her husband died in prison. She has a son and six daughters, including Aya, a 12-year-old who acquired a physical disability after she was injured during an airstrike on Taftanaz, Idlib governorate.[62] Amina had married off four of her daughters at the ages of 14 and 15 because she was unable to find a job and provide for them.[63]

Aya, who was in second grade at the time of her interview, enjoys school and dreams of becoming a doctor, but she recognizes she needs help and support to achieve her goal.[64] “I wish they would help the kids in Syria, and I wish the war would end,” she said. “I wish for the people who are reading this report, and all the kids in the whole world, to live in peace and in safety.”[65]

Human Rights Watch also documented one case of a child, Ismail, who was sold as an infant, although it is unclear if poverty factored into the relative’s decision. Human Rights Watch interviewed Aisha, Ismail’s cousin, who at the time of the interview was taking care of Ismail, 4, and Farah, 6.[66] Aisha believes Ismail began to stutter as result of his trauma.

Ismail’s parents were killed in the war when he was about 2 or 3 months old, and his uncle sold him to another family. Aisha’s family spent three-and-a-half years looking for Ismail before they found him. According to Aisha, “Ismail is a very scared child. He is scared by everything: voices, people, anything you can imagine. If someone is just passing by him, he will startle and get scared.”[67]

Right to an Adequate Standard of Living

The Syrian government has an obligation under international human rights law to respect, protect, and fulfill the right to an “adequate standard of living,” which includes the rights to housing, food, and health.[68]

The principle of non-discrimination is a foundation of international human rights law and includes a prohibition against discrimination on the basis of disability.

The CRPD underscores that people with disabilities have a right to an adequate standard of living for themselves and their families, “including food, clothing and housing, and to the continuous improvement of living conditions.”[69]

The CRPD obliges states to take steps to safeguard and promote the realization of equal access to water services and to appropriate and affordable services, devices, and other forms of assistance that are needed because of a disability as well as access to social protection and poverty reduction programs. These programs are especially important for women and girls.[70]

Syria has a duty to progressively realize these rights over time. Even recognizing that limited resources and capacity may mean that these rights are realized over time, it still violates Syria’s core obligations to fulfill people’s needs in a discriminatory manner or to impose unnecessary barriers on the delivery of aid or the pursuit of development projects.  

 

Lack of Access to Health Care and Support Services

The majority of children included in this report were born when or shortly before the conflict began in 2011; consequently, their lives have been overwhelmingly shaped by the armed conflict and the violent attacks, displacement, and degradation of essential and other services that have characterized it. They have lacked access to basic services essential to the enjoyment of their human rights, including health care and social services.

Parents of children with disabilities interviewed for this report described obstacles to accessing health care, including the lack of healthcare facilities near them and the high cost of accessing what little care is available; early intervention services; rehabilitation; and other services, including those that might have helped their children and prevented them from developing further disabilities.[71]

All the parents who spoke to Human Rights Watch had not received information about their children’s disabilities or how they can support them. They were also unable to secure health care and services to address their children’s physical and emotional development needs.

Eleven years of conflict in Syria has decimated the healthcare and social services infrastructure: more than one-third of essential infrastructure has been destroyed or damaged, including half the healthcare facilities.[72] Syrians with disabilities have faced particular obstacles in accessing the healthcare services they need, and the Covid-19 pandemic has exacerbated these disparities.[73] According to the 2022 Humanitarian Needs Assessment, households who have had a member with a disability were most likely to report living more than one hour away from a health facility, having to pay for health care, a lack of available or accessible services, and fear of becoming infected by Covid-19 at the health facility.[74]

According to a humanitarian protection officer in Syria, there is a lack of medical professionals who can treat spinal cord injuries and bone conditions. Consequently, some children and adults were unable to get surgeries and early interventions that would have helped prevent further disabilities.[75]

Yousef is the father of eight, including 8-year-old Taha who experiences seizures and faints often. The family fled Hama and have been living for four years in a tent in Samidun camp, Idlib province. He said the “main problem” is they have not had access to health care or services where they could ask for information on Taha’s disability and guidance on how to support him.[76]

The father of a 5-year-old with autism, who lived in Qunaya at the time of the interview, on the Syria-Turkey border, similarly expressed his wishes to learn about his son’s disability and how to support him:

He is still young, and there is probably something we can do. What if it continues like this? It feels like I am just sitting there, unable to do anything. I am looking at my child, and I do not know how to support him. What can I do? Will he grow up with no access to education or support? I have so much fear about what will happen.[77]

According to Merwa, the mother of two daughters with hearing disabilities, the biggest challenge of living in a war-affected country and having children with disabilities was the lack of access to education, health care, and support. In 2017, she managed to take her daughters to Turkey to get cochlear implants, which are small electronic devices that improve the transfer of audio information from the ear to the brain.

Merwa said:

Doctors [in Turkey] told me we have to come back after two to three months, but since the operation, I haven’t been allowed to go back to Turkey to see the doctors again. I’ve asked around here to be able to get some support, went to Damascus twice to see doctors. Now it’s been a while, but I still haven’t managed [to get a follow up doctor’s visit since the surgery].[78]

Access to health care and early identification and intervention programs are necessary to improve the health and development of all children, especially children with developmental conditions and disabilities.[79] When children with developmental conditions and disabilities cannot access health care, rehabilitation, and early intervention programs, their conditions may become more complex or they may acquire further disabilities. Early and timely identification of children with developmental conditions and disabilities and consequent intervention can help the children’s development and provide their families with the necessary skills and knowledge to ensure their development and to pursue access to appropriate services throughout their childhood and adolescence.[80]

Lack of Support for Children’s Mental Health

Research on conflicts around the world indicates all children living in conflict zones are at high risk of depression, anxiety, and other mental health conditions.[81] A lack of access to support, mental health and psychosocial support services, and education exacerbates the impact of conflict on the mental health of all children, including children with disabilities.[82] These global findings are reflected in Human Rights Watch interviews with parents in Syria, who described the devastating impact of the conflict on their children’s mental health.

Available data indicates nearly half of all Syrian children display symptoms of post-traumatic stress (PTSD) and about 7.5 million Syrian children and adolescents are currently in need of mental health support.[83]

The 2022 UN Humanitarian Needs Overview emphasized the mental health impact of the conflict on children in Syria, noting that many children do not know “anything else but years of crisis.”[84] Signs of psychological distress were found to be highest when the head of household is a person with a disability and second highest for female-headed households.[85]

All families interviewed described evidence of psychological harm in their children, particularly in those with a disability.

Dib H., the father of the 13-year-old boy with a developmental disability, said:

Most of my kids have a lot of difficulties psychologically, especially when it comes to any loud sound. You can see the fear in their eyes. They have no hopes for the future.[86]

Regarding his son with disabilities, Dib H. said: “This situation made him more withdrawn. He sits alone, doesn’t want to interact with any other kids.”[87] 

Thara J., 18, who lost her leg in a barrel bomb attack, fears future harms and airstrikes:

With every airstrike, I feel I might lose my life or another limb. I am still seeing my people being killed, injured, and disabled because of this conflict. Psychologically I don’t feel well, but we will support each other and keep hoping that this conflict will end one day.[88]

Zaher A. lives with his wife and three children, including a 10-year-old boy who has an intellectual disability, in a tent in a camp on the outskirts of Idlib. He said the multiple military offensives in the region particularly affected his son with a disability:

He was always shy, but the war made it worse. He witnessed a lot, especially bombs and explosions. He changed a lot. He is always afraid, including when it’s something he shouldn’t be afraid of. Sometimes it will be the sound of thunder or the sound of the fire. He is afraid of everything.[89]

The sudden attacks and fleeing also profoundly affected Shahd (her real name), 11, who has a hearing disability, compared with her five siblings. Her father, Ahmed, described her reactions:

Whenever there was airstrike, the children became terrified, and we started yelling and trying to run to the shelters, and when she saw us in that situation, she started to cry. Now whenever there is something unexpected, even if someone rushes into the house, she starts to cry.[90]

Several parents believed the lack of access to meaningful intervention, support, and education further exacerbated the developmental and psychological impact on their children with disabilities. The father of the 4-year-old boy with autism, who lived in a makeshift camp on the Syria-Turkey border, said there were no support or educational services available for his son with autism:

He does not know how to communicate with us, we do not know how to communicate with him, and there is nowhere to look for support. Recently, we see a lot of aggressiveness, even when I try to speak and engage with him. Whatever he finds on the ground around him, he throws that at me. We are very worried; we do not know what to do. I was hoping that by coming to this area, we will have access to education for him, but there is nothing.[91]

When Human Rights Watch interviewed the father again in June 2022, the family had moved to a rural area of Harem district and continued to struggle to find appropriate and quality services and education for their child with autism.

Nour lives in Afrin with her son who is 11 and has an intellectual disability. When her son was 6 months old, Nour regularly took him to a public special school for children with disabilities in Aleppo that provided free early childhood intervention services.

“Teachers there were not only teaching him, but also teaching and helping me, giving me hope, explaining what was going on,” she said.[92] However, due to fighting in the area and inaccessible roads, Nour stopped taking her son to that school when he was two-and-a-half. Nour said she has not been able to find another school that would accept him and that not going to school has impacted his mental health. “From my perspective, it changed him a lot,” she said. “His situation became worse. He became very angry; he started hating staying at home.”

All but one person said they and their children have not had access to mental health and psychosocial support services. The one parent whose child had access to psychosocial support told us the program closed in 2019.[93]

Two organizations providing psychosocial support services to children in Syria confirmed their programs were not accessible to all children with intellectual or psychosocial disabilities. For example, a staff member from one organization explained they were not prepared to provide services to children with high support needs because “a child with a ‘severe’ intellectual disability needs intensive care and very qualified and specialized facilitators to maintain the principle of ‘do no harm’” that their organization cannot offer right now.[94]

A representative of another NGO, Violet Syria, said many of their educational activities and child-friendly spaces exclude children with disabilities due to a lack of trained staff inside Syria: “Our staff often complain that they do not know how to [support children with disabilities], that they need special approaches and special modules, and we do not have enough capacity for this.”[95]

Right to Physical and Mental Health

The Syrian government has an obligation under international human rights law to respect, protect, and fulfill the right to health, including for children with disabilities.[96] Under the CRC and CRPD, children with disabilities have the right to health and nutrition. Children with disabilities are also entitled to appropriate assistance, including support for their parents or other caregivers.[97] According to the UN Committee on the Rights of the Child, a body of eighteen independent experts that monitors the implementation of the CRC, states parties should pay particular attention to ensure the “most vulnerable groups of young children and to those who are at risk of discrimination,” which includes children with disabilities, have access to services.[98]

The UN Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health called on states to increase their investment in early childhood health and development and to ensure health care and early intervention services follow a human rights-based approach, including provisions of the CRPD.[99]

As part of their right to health, all children, including children with disabilities, have the right to enjoy the highest attainable standard of mental health and, as needed, access to psychosocial services.[100] Counseling and other mental health services in Syria, which are mostly offered by humanitarian organizations, should be human rights respecting, equitably distributed, inclusive of, and accessible to all children with disabilities.

 

Lack of Access to Assistive Devices

Children with physical and sensory disabilities in Syria cannot easily access adequate and affordable prosthetics, wheelchairs, hearing aids, or other assistive devices.

Thara J., 18, said that in the five years since she lost her leg, she has not been able to receive a prosthetic leg that would help her get around more easily.[101] Two 16-year-old boys who each lost a limb after stepping on mines, one in October 2020 in Kobani and the other in 2016 in northeast Syria, also did not have access to prosthetics.[102]

A surgeon who treated the 16-year-old who lost a leg in Kobani, told Human Rights Watch he could not provide prosthetics to children who lost a limb or outgrew their old prosthetic due to a lack of access to necessary materials.[103]

The other boy now lives with his family in Rukban camp, northeast Syria. The camp is located between Jordan and Syria, where horrific humanitarian conditions persist as a result of the refusal of both the Jordanian and Syrian authorities to allow access for aid.[104] Consequently, he cannot access a prosthetic leg despite the enormous impact it would have on his life:

A prosthetic leg would help a lot. It will help me with everything. It will help me to come and go without having to ask other people for help. It will help me emotionally. Today, I cannot go, I cannot do anything alone. I need to have my father there to help me, even to walk.[105]

In February and March 2021, two child protection managers working in humanitarian relief in northwest Syria told Human Rights Watch that their organizations have not typically provided prosthetics to children.[106]

“It is not sustainable for children because as they grow, they will need a new one and we do not have resources,” one of them said.[107] Thanks to increased funding, the other’s organization did start providing prostheses to children in 2020, but only for lower limbs. She said, “There is no funding for upper artificial limbs, even though children need these as well.”[108]

If a child has an assistive device, it should meet their needs to prevent further complications. Due to a lack of such access, the children included in this report who had access to assistive devices rarely had ones that were tailored or appropriate for their needs.

Alaa, 4, has a developmental disability and was living with her family in an IDP camp north of Aleppo governorate when Human Rights Watch spoke to her mother. Alaa cannot walk without support and was provided with a wheelchair. A photo of the wheelchair shows Alaa sitting in an adult wheelchair that is not appropriate for her age and disability, according to World Health Organization guidelines.[109]

According to an inclusion specialist at Humanity & Inclusion, an international NGO, inappropriate assistive devices may lead to irreversible health implications and put children with disabilities at risk of developing further disabilities. The inclusion specialist explained that Alaa is unable to independently use her adult wheelchair and may develop spinal and joint complications in the future due to sitting in a wheelchair that is not fitted for her needs or age.[110] “Such non-tailored services can harm children with disabilities,” she stressed.

One protection officer explained that adult manual wheelchairs are less expensive than wheelchairs that are adapted to children or a specific individual’s needs, such as electric wheelchairs. Electric wheelchairs would be better suited to the terrain in Syria, where roads are damaged and difficult to navigate with a manual wheelchair. The protection officer also said that donors, in an effort to increase the numbers of devices offered, may not prioritize adapted and electric wheelchairs. “Donors prefer to say they donated 300 wheelchairs versus 10,” she said.[111] She added that “the numbers of children who need assistive devices is larger than what we can respond to” and the lack of access to assistive devices can impact a child’s access to school.[112]

Assistive Devices Facilitate Enjoyment of Rights

Assistive devices positively contribute to a child’s independence and development, promoting social inclusion and facilitating access to other rights, including to education and to health.[113] Under the CRPD, states parties should take effective measures to ensure personal mobility, including by facilitating access to assistive technology and by promoting the availability, knowledge, and use of assistive devices and technologies.[114]

Offering a suitable prosthetic or an assistive device as soon as a child needs it can greatly improve their health, development, independence, and access to education and other services as well as other r rights. Given those benefits, access should be provided regardless of whether it is considered sustainable. A child who gets a prosthetic that they can use—even for only a year—is more likely to have better health and possibly more able to do things to get access to a replacement, such as travel, than one who never gets one at all.

 

Lack of Access to Education

An estimated 2.5 million children are out of school in Syria.[115] The lowest school attendance rates are in governorates that have seen high levels of destruction of educational facilities and schools being used as IDP shelters or for other non-education purposes.[116]

Since the conflict began in 2011, more than 7,000 schools in Syria have been damaged and destroyed.[117] There is an estimated 1 functioning classroom for every 53 school-age children.[118] Existing schools are characterized by unsafe infrastructure, including absent walls, roofs, staircases, windows, and heating and are severely overcrowded.[119] From the beginning of 2020 to May 2021, there were 37 attacks on educational facilities in northwest Syria despite the ceasefire.[120]

Lack of Access to Formal Education

Children with disabilities in Syria have very limited access to formal education.

IDP households with a head of the household with a disability or a child with a disability reported “slightly lower attendances compared to the overall IDP population and are also less likely to prioritize educational needs.”[121] Children with disabilities are also less likely to be enrolled in schools than other children: 50 percent of children with reported health conditions, injury, or disability reported attending school, compared with 84 percent of other children.[122]

The primary reasons for this exclusion of children with disabilities from education in Syria are: economic constraints, limited educational facilities that can provide an inclusive education, insufficient investment in learning facilities, an inclusive curricula, and social stigma, as well as a lack of accessibility to and within schools, assistive devices, and trained teachers.[123] There is limited availability of early childhood education centers as well.[124]

Among the children with disabilities included in this research, only one was enrolled in formal education (in a school). However, this child was bullied and the school did not provide him with an appropriate accommodation. In all but three families, the other children (without disabilities) attended school. According to parents and representatives of humanitarian organizations, public schools often reject children on the basis of their disabilities, citing a lack of resources or skills to educate them.

Merwa, who has two daughters with hearing disabilities, said schools in Afrin refused to accept her daughters. “The school where I tried to register my children was a public school,” she said. “The teachers there told me they cannot teach my daughters because they do not have a specialist.”[125]

Mona, mother of a 5-year-old with developmental disabilities, tried many times to enroll her daughter in a school, but the school said her daughter “has many problems and that they cannot accept her.”[126]

The mother of a 10-year-old boy with Down Syndrome, who lives in Idlib governorate, discussed his enrollment challenges:

When he reached school age, I tried to register him, but we faced a lot of problems. Other children hit him, beat him, bullied him, many times. The reaction of the teacher was no better. Many times [the teacher] said she is not ready to have a child with a disability in her class, that it’s something that will disturb the class and something she cannot handle.[127]

At the time of the interview, her son was not enrolled in school.

Four parents interviewed for this report did not try to enroll their child with a disability in public school because they believed that the child would not be included due to their disability or that the school would not support a child with a disability if they were bullied or injured.

Mohammed R. has three children, including an 11-year-old boy with a developmental disability. They live in a tent in a makeshift camp north of Aleppo. He never tried to send his son to school “because he needs someone to be with him all the time” and he believed the school would not provide a support person to accommodate his son.[128]

Yousef and his wife, who have an 8-year-old son who has seizures and faints often, fear their son will not receive appropriate support if he had a seizure at school. “Sometimes, some of his brothers or sisters take him with them, but he is unable to go to school or to stay there alone,” Yousef said.[129]

Some children experienced a lack of support from teachers that prevented them from going to school. The family of Omar, a 10-year-old boy with intellectual disabilities, sent him to school in Idlib governorate twice. However, according to his uncle, “the teacher couldn’t respond to his needs, so it was hard for us to keep him in the school.”[130]

Ghaith (his real name), 13, was the only child with a disability included in this report who was in school. He has a visual disability and lives with his family in a rural area in Idlib governorate. He attends school, where his favorite subject is Arabic, especially poetry, but it is hard for him when teachers want to put him in a class with younger children:

The teacher pushes me to a lower grade because of my writing. I do not see well [enough] to be able to write. I don’t want them to keep pushing me to a lower grade; I want to stay in my class. They should have patience and give me more time to write instead.[131]

His mother has had to go back to the school to fight the teacher’s decision to put him in a lower grade.[132] She also said Ghaith is bullied by other children at school, which is one of the hardest things for her to witness.[133]

“The hardest thing is witnessing the bullying from other children. He also stopped going to the mosque because of the children. They [the children] point out that he is wearing glasses and say words that a child cannot bear. Same happens at school as well.”[134]

Poverty played an important role for families interviewed for this report. Families living in rural areas said they could not send their children with disabilities to school because of the transportation costs.[135] Two humanitarian workers confirmed transportation is one of the main barriers to accessing education and support services, if available. 

Abdel, 10, who has a developmental disability, did not receive proper support from a local school in Afrin, where teachers insisted he attend class with much younger children. His parents considered a private special school, but this was not a viable option due to economic constraints and distance.[136]

Fear of possible new attacks and violence was a concern for the parents of Thara J., who lost a leg at 13. She stopped going to school afterward since her family worried she would not be able to flee. “I was in seventh grade when I dropped out of school,” she said. “I wish one day I can enroll in school again.”[137]

Limited Access to Informal Education

With very limited access to formal education or formal early education programs for children with disabilities in Syria, most children whose situations Human Rights Watch documented relied on educational services provided by humanitarian organizations. Parents interviewed praised these programs for providing not only opportunities for their children to learn and socialize, but also for the information and support to parents themselves.

However, the lack of long-term funding has often led organizations to close or reduce their programming.[138] The Covid-19 pandemic has led to some programs to move online at the beginning of the pandemic, with many in-person activities resuming in early 2021.[139] In other cases, the inability to travel to available educational programs due to poor accessibility in homes or the cost of transportation impeded the participation of children with disabilities.[140]

Dib H., whose 13-year-old son has developmental disabilities, said his son had access to services, including education and physical therapies provided by Sened, an NGO committed to providing support to people with disabilities, in the Syria-Turkey border camp where their family lives. The services meant a lot to his child and to him as a parent. “Before going to these educational trainings, [my son] didn’t speak,” Dib H. said. “Then he learned. When he would return home, he would be excited to explain what happened during that day.”[141] However, a few months into the program, the program ended due to financial reasons, and Dib H. had nowhere else to turn for educational opportunities for his son.

Ahmed, whose 11-year-old daughter has a hearing disability, said they were able to access six, helpful, informal classes provided by the Union of Medical Care and Relief Organizations (UOSSM), a coalition of humanitarian, non-governmental, and medical organizations. “They also taught us [the parents] how to support our children,” he said.[142]

However, like Sened’s program, UOSSM’s classes were canceled after six sessions due to lack of funding. Ahmed’s daughter Shahd was not attending any classes when we spoke in October 2021. Ahmed explained how the lack of ongoing support harmed her mental health:

It’s very hard on her: she is growing up, and she wants to be able to explain herself and say what she feels or need. We do not understand what she needs most of the time. Not even other children her age understand her. She then gets angry and frustrated because we do not know what she needs or wants.[143]

When Human Rights Watch interviewed Ahmed again in June 2022, after his family had moved to Azaz, Aleppo, Shahd was going to the school her brother was attending once a week “just to pass time.”[144] He explained she is not learning anything due to a lack of access to trained teachers, so he fears she will grow up without an education.

Zaher A., who has a 10-year-old son with an intellectual disability, said his son accessed informal classes provided by UOSSM for two months in 2020 and that “classes were helping him a lot. We saw improvement, and I am devastated they stopped” as a result of financial restrictions the organization was facing, according to Zaher A.[145]

Goufran M., whose 5-year-old has autism, benefited from the educational specialist at Sened, who taught her how to support her son. She also spoke about the positive changes she noticed when he briefly attended informal classes offered by Sened in early 2020.[146]

I started seeing progress. It gave us hope.… What he got from these classes was more than learning letters and numbers: It had a social impact on him, being surrounded by other children.… I’ve seen a lot of change in his well-being since he had to stop going to these classes.[147]

Goufran M. felt that access to this support was lifechanging for her and her family, since they previously had no one to consult except some medical doctors, who often dismissed her son and his potential. According to her, “One doctor said, ‘[my child’s autism] is a broken plate, something that cannot be fixed.’ Whenever a doctor tells me my child is a hopeless case, I just stop going there.”[148]

Limited Frequency and Accessibility of Classes

While children with disabilities and parents of children with disabilities who had access to any informal classes spoke highly about these classes, they all wished the classes were offered more frequently. Musa, the 13-year-old boy with a physical disability, goes to the classes offered by Sened and expressed his joy from the opportunity: “I am very, very, very happy going there. I only wish I could go there every day.”[149]

In November 2020, Mohammed R. told Human Rights Watch that his 11-year-old son with a developmental disability had been attending Sened’s classes for two months. “I am very grateful,” he said. “I think my child is doing better, but I know he needs more than one class per week. He needs to be there more frequently.”[150]

Transportation fees prevented Mohammed R.’s son and other children with disabilities from attending more often. An education specialist from Sened confirmed transportation was a key obstacle for children with disabilities to attend classes at the center.[151]

Some families described long travel times to reach informal educational programs. Fatima J., who lives in Afrin with her 11-year-old son with an intellectual disability, described her journey to a service center:

It is very hard to do it. I usually take a bus, which is expensive. I must leave the house at 7 a.m. to arrive there at 9 or 10 a.m. There are many checkpoints, and it always takes a long time. But I am still doing it for the future of my child. All I am hoping and doing for him is so that he can be independent.[152]

Musa, the 13-year-old who uses a wheelchair, lives with his family on the fourth floor of an unfinished house without walls. Living on the fourth floor makes it difficult for him to leave the home. His mother said:
 

I put him in a chair and ask some men to take him downstairs. He is around 70 kilograms. His body is strong, so carrying him downstairs is not easy. He doesn’t go down often. About two months ago, Sened came and requested we take him down to register him. We bring him down twice a week so he can go to Sened to attend classes.[153]

Parents also recounted how some humanitarian organizations operating in areas where they lived excluded their children with disabilities. Two humanitarian organizations providing informal education services to children in Syria confirmed they turned away children with hearing, visual, or intellectual disabilities. “We are referring these children to other NGOs because they need special education,” said one humanitarian worker.[154]

Right to Education

The Syrian government has an obligation under international human rights law to respect, protect, and fulfill the right to education of all children, including children with disabilities. The CRC guarantees the right of the child to education, progressively and on the basis of equal opportunity.[155] The CRPD guarantees people with disabilities access to inclusive primary and secondary education in the communities where they live.[156] States parties should provide reasonable accommodation to address individuals’ educational requirements.[157]

Children with disabilities have the right to not be segregated from others and to an inclusive education on an equal basis with others. The CRPD guarantees the right of students with disabilities to receive an education in mainstream, inclusive schools. Organizations providing education and other services should strive to ensure staff and training to guarantee inclusion.

The Office of the United Nations High Commissioner for Human Rights (OHCHR) states that:

As an antidiscrimination measure, the “no-rejection clause” has immediate effect and is reinforced by reasonable accommodation … forbidding the denial of admission into mainstream schools and guaranteeing continuity in education. Impairment-based assessment to assign schools should be discontinued and support needs for effective participation in mainstream schools assessed.[158]

The high number of children with disabilities who are out of school in Syria presents an urgent crisis. Many schools have been destroyed or damaged and what teachers are left have limited support and resources and little to no access to training to educate children with disabilities. It might take years for children with disabilities to have equal access to education. Importantly, the longer children remain out of school, the less likely they are to finish their education and the more likely they are at serious risk of experiencing poverty and exclusion in adulthood.[159]

 

Stigma and Discrimination

Children with disabilities can face isolation and discrimination in situations of armed conflict around the world.[160] Human Rights Watch research in Syria found stigma and discrimination against children with disabilities, including physical and verbal abuse and threats, and one case of shackling.

The UN Human Rights Council has expressed concern that people with disabilities along with women, children and older persons, are among the most at risk of abuse and violence in Syria.[161] In March 2022, OCHA reported that female-headed households and households headed by a person living with a disability in Syria are more likely to report safety and security concerns related to threats of exploitation and abuses (including sexual in nature) than male-headed households.[162]

Children with disabilities in Syria are “often at heightened risk of forms of violence, abuse, neglect or exploitation,” with many “struggling against marginalization, stigma and discrimination,” according to OCHA.[163] The report added that “attitudinal, physical and humanitarian service-related barriers intersect and compound one another to reduce health and learning outcomes, protection and development of children and adults with disabilities, often resulting in life-long negative consequences.”[164]

Eleven of the parents interviewed for this report said their child with a disability faced bullying and harassment in the community on the basis of their disability, and five parents said other children had physically attacked their child with a disability.

Fatima J. described a few experiences where she and her 11-year-old son faced discrimination and bullying linked to his intellectual disability:

It’s not just kids who bully him; the adults do too. They act like they are scared of him. Their reaction to meeting him is always bad. Even here in the area where we live now, there was a woman who was pregnant who passed by us with her friend. Her friend said, ‘Don’t look at the child while you are pregnant, so you don’t have a child like him.’ This made me cry, it really hurt me. This is harder than anything else he is going through. A lot of people are like that here.[165]

She continued:

I hope for everyone in the world to understand that children with disabilities are like other children. They have their rights that include being treated like other children and not being looked down on. They have the right to and need for education.[166]

When asked about his experience with the war, Musa, the 13-year-old who uses a wheelchair and lives with his family in Afrin, replied he has endured physical violence and bullying from other children because of his disability. “Sometimes I face some things, like children beat me up, and I cannot hit back,” he said. “Some of the kids are really mean.”[167]

Aisha was taking care of two relatives, including Farah, 6, at the time of the interview. Farah’s father and his wife had previously kept Farah in chains for several months at a time and on and off over several years. Farah had difficulty controlling her bladder during these periods and frequently urinated on herself. In addition to keeping her shackled, her father reportedly cut her with a knife or burned her when she could not control her bladder. After a neighbor contacted Aisha about the abuse, she contacted the authorities. Farah had been living with Aisha for approximately four months at the time of the interview.

Aisha sent Human Rights Watch several photos of Farah after her rescue that show clear signs of mistreatment.[168] A critical care medical doctor consulted by Human Rights Watch stated that the darkened and chronic scars visible around the wrists and ankles were most likely caused by the use of chains and that the child was visibly undernourished and appeared younger than her age.[169] The doctor also concluded some of her other scars could have been caused by whipping.[170]

According to three humanitarian workers operating in Syria, the chaining of children with disabilities existed prior to war; however, based on anecdotal evidence, they believed it had increased since the war started.[171] They attributed this change to a lack of access to services and support.[172] Members of the Syrian Civil Defense (also known as the White Helmets) a volunteer humanitarian organization, reported a greater risk of abuse for children with psychosocial disabilities who have also lost their parents in the war as their extended families take them, but do not know how to support or care for them.[173]

International Legal Prohibitions against Discrimination

International human rights law prohibits discrimination and requires states to ensure effective protection against discrimination and equality before the law for all persons.[174] Various UN agencies and human rights treaty bodies have documented the impact of stigma and discrimination, including on people with disabilities.

Stigma reinforces and justifies discrimination and can lead to an entire group being disadvantaged, excluded, and abused.[175] The UN Committee on Economic, Social and Cultural Rights has found that “discrimination against some groups is pervasive and persistent and deeply entrenched in social behaviour and organization.”[176] According to the UN Committee on the Rights of the Child, discrimination against children with disabilities can reduce their survival prospects and quality of life.[177]

Stigma does not only lead to discrimination, but also to a range of other human rights violations. For example, stigma and discrimination often result in the exclusion of people with disabilities from education, employment, health, and other opportunities or services.[178]

 

Challenges Faced by Humanitarian Agencies

As of 2022, about 14.6 million individuals in Syria required some form of humanitarian assistance, which was an increase of 1.2 million from 2021, including 3.3 million people with disabilities over 12. Despite being one of the largest humanitarian operations in recent history, the Syrian response has faced myriad challenges. The authorities have implemented a legal and policy framework in government-held areas that has allowed them to co-opt aid by restricting the access of humanitarian organizations to communities that need aid, selectively approving aid projects, and imposing requirements to partner with security-vetted Syrian actors.[179] 

Due to the threat of a Russian veto of the entire mechanism, the UN Security Council has severely restricted a cross-border mechanism that was previously designed to deliver aid to areas not held by the government via Turkey, given the Syrian government’s efforts to obstruct delivery of aid. This situation is exacerbated by the fact that only one of four border crossings is still authorized, which has cut off UN cross-border aid for Syria’s northeast and made it harder to distribute aid in the northwest. This has significantly reduced aid agencies’ ability to provide support to populations in need in those areas.[180]

On July 12, 2022, the UN Security Council reauthorized cross-border aid deliveries for only six months, meaning the mandate will expire during the winter and, and its renewal will again be subject to political wrangling at time of great need.[181]

In addition to access restrictions and interference with aid by Syrian authorities, the currently allocated humanitarian funding is insufficient to meet the humanitarian needs of Syrians.[182] While USD $6.7 billion has been pledged ($4.3 billion for 2022 and $2.4 billion for 2023), including by the United States, European Union, and its member states, that sum amounts to less than 50 percent of the total funding required for 2022.[183]

The UN under-secretary-general for humanitarian affairs and emergency relief coordinator has echoed the World Food Programme’s warning that global food price rises and insufficient funding levels will make it difficult to meet the urgent food needs of millions in Syria and neighboring countries, forcing the World Food Programme to cut the calories in food basket it provides, directly impacting Syrians’ right to food.[184]

According to Action for Humanity, the parent charity of Syria Relief, reduced donations—in this case from the UK government—will lead to 100,000 children, including those with disabilities, stopping and undermining their right to education.[185] The charity warned this could result in a rise in child labor, child marriage, early pregnancies, child conscription to military and armed groups, child exploitation, and child trafficking. Gaps in funding will also prevent thousands of children from receiving the psychosocial support they need.[186]

All of the humanitarian organizations interviewed operating in northwest Syria confirmed they had to stop a few programs due to a lack of funds or as a precaution to prevent Covid-19 infections. A representative of an international humanitarian organization said the organization cannot promise long-term programming for children with disabilities: “We are really dependent on the donors, what they will be funding, and for how long.”[187]

Hand in Hand, a humanitarian organization operating in northwest Syria, said they initially had three rehabilitation centers providing peer support services, psychosocial support, child resilience activities, and educational programs for children with disabilities in Aleppo governorate. Due to a lack of funds and the Covid-19 pandemic, the Afrin Center, which had provided services for 354 children for 6 months and was the only organization in the region offering speech therapy, had to close.

More than three million people with disabilities ages 12 and older are in need of humanitarian assistance in Syria.[188] While humanitarian organizations struggle to provide humanitarian assistance to everyone in need, people with disabilities in Syria “face systematic challenges in accessing humanitarian relief on an equal basis with others,” including a lack of accessible information about humanitarian relief.[189]

Human Rights Watch has documented how children and adults with disabilities affected by armed conflict in humanitarian settings—like the Central African Republic, Cameroon, and South Sudan—are often overlooked by humanitarian assistance efforts.[190] Human Rights Watch research attributed this exclusion to a variety of factors, such as lack of awareness and lack of capacity on the part of those providing assistance, inaccessible assistance, stigma, and discrimination.

While the shortage of funding has a general impact on people in need in Syria, it has a particular impact on children with disabilities. Children with disabilities do not have access to humanitarian programs in Syria on an equal basis with others as programs do not take into account their particular needs when designing and delivering programming and, in some cases, explicitly excluding them.

Representatives of several international and Syrian humanitarian organizations interviewed indicated there is a notion among some organizations that children with disabilities should be provided services either in segregated settings or by organizations solely focusing on people with disabilities.[191] Two humanitarian organizations said they were unable to include children with different types of disabilities in their programs.

One explained children with physical disabilities, including those who have acquired a physical disability as result of the conflict, are included in education and psychosocial programs, while children with other types of disabilities, particularly developmental ones, are left out or referred to “specialized” organizations since general humanitarian organizations do not feel they have the qualified staff or knowledge to provide such support to children with developmental disabilities.[192]

A representative from Humanity and Inclusion (HI), one of the few international organizations focused on providing support to people with disabilities, said, “The inclusion of people with disabilities and making sure they access humanitarian assistance is not only HI’s job; it’s everyone’s job.”[193]

Three Syrian humanitarian workers highlighted some reasons for the limited inclusion of children with disabilities, including a lack of awareness and training. “When the Syrian conflict started, the focus was on children and women, without any specific responses to people with disabilities,” said one humanitarian worker.[194] An advocacy officer working for an international children’s rights organization added:

Children with disabilities is not something I hear about from our colleagues. We talk about reaching the most vulnerable children, but I haven’t seen anything targeting children with disabilities. We assume Humanity and Inclusion is covering it. It doesn’t come up in advocacy.[195]

Talostan, who works with Violet Syria, a humanitarian organization described the training gap as follows: “We have not been trained to support people with disabilities, and most humanitarians still think disability inclusion is about rehab centers, building ramps, [and] providing wheelchairs. [Inclusion] is not only that and we need to change the mindset.”[196]

In April 2017, Syrian disability rights activist Nujeen Mustafa briefed the European Parliament in Brussels on the lack of equal access to humanitarian assistance for people with disabilities. In December 2017, the European commissioner for humanitarian aid and crisis management announced that, beginning in 2018, all European Union-funded humanitarian partners must include people with disabilities into their actions.[197] Other donors, including the United States Agency for International Development (USAID) and the United Kingdom’s Foreign, Commonwealth and Development Office (FCDO), have also incorporated the inclusion of people with disabilities into their funding requirements.[198]

However, according to representatives of three humanitarian organizations operating in Syria, much more should be done, including on the part of donors, to ensure the inclusion of all people with disabilities, including targeted interventions and support.[199] “[Some] donors request a percentage of targeted beneficiaries to be people with disabilities, but without any specifications,” one of them said.[200] A representative from another humanitarian organization said, “Humanitarian organizations are trying to target people with disabilities to meet the donor’s requirements, but they do not know how to target [effectively]. It often comes down to handing out assistive devices [that might not be tailored to the person’s needs] and without any concrete, hands on support.”[201]

Another echoed this, noting that some donors request the inclusion of people with disabilities, but the implementation of those expectations is insufficient, with few targeted services and inadequate monitoring by the donor.[202] This approach forced many people with disabilities to rely on diapers because there was no targeted intervention to provide accessible toilet chairs. She also said the lack of targeted commitment by donors and targeted services by organizations operating in Syria psychologically affected many people with disabilities, who were left feeling “ignored, unempowered, and lacking in dignity and independence.” According to her, the “generalized services that most organizations are providing are not adequate. This fails to ensure equity, equality, and inclusion.”[203]

In 2019, the Inter-Agency Standing Committee (IASC), the highest-level humanitarian coordination forum of the UN system, developed the “Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action” to identify and respond to the needs and rights of people with different types of disabilities who are most at risk of being left behind in humanitarian settings.[204]

The guidelines on inclusion of people with disabilities in EU-funded humanitarian aid operations referred to the IASC guidelines, reiterating that “it is the responsibility of all humanitarian actors to ensure their programming strives to ensure inclusion of people with disabilities.”[205]

Deliberate and proactive action is needed by both donors and humanitarian actors to ensure children with different types of disabilities are systematically included in all humanitarian responses, including through the provision of tailored interventions and the implementation of the IASC guidelines.

Duty to Facilitate Humanitarian Access

Under international humanitarian law, all parties to an armed conflict—government forces, government-backed militias, and rebel groups alike—have duties to humanitarian aid and assistance. They should allow and facilitate the rapid and unimpeded passage of impartial humanitarian assistance for civilians in need. In practice, humanitarian relief agencies and organizations function without the express or implied consent of the warring factions, and parties cannot refuse to provide consent on arbitrary grounds.[206]

Unnecessary delays or obstruction of aid in Syria may also violate human rights, including to life, to health, and to an adequate standard of living, including food and water, and a livelihood. Children with disabilities and their rights are disproportionately affected by the absence of aid. 

Children with disabilities and their families have a right to humanitarian assistance that should be provided in an accessible manner. UN Security Council Resolution 2475 (2019) emphasizes the need to consider the particular needs of people with disabilities in humanitarian response.[207]

 

Rights of Children with Disabilities in Armed Conflict

International human rights law protects the rights of children with disabilities, including the right to protection and safety, education, food, health, non-discrimination, and others. Syria is obligated to ensure these rights as a party to the CRC, CRPD, International Covenant on Economic, Social, and Cultural Rights (ICESCR) and other human rights treaties

The CRC guarantees all children’s rights to survival; develop to the fullest; protection from harmful influences, abuse, and exploitation; and participate fully in family and social life. It also makes specific reference to children with disabilities, outlining the principle of non-discrimination and the special efforts states parties should make to realize the rights of children with disabilities.[208]

In situations of armed conflict, the CRC obliges states parties to “undertake to respect and ensure respect of rules of international humanitarian law which are relevant to the child and ensure protection and care of children who are affected by the armed conflict.”[209]

International humanitarian law applies to all parties to the conflict, state and non-state actors, and provides general protection to civilians, including children, in times of war. Its core protections apply in Syria’s internal armed conflict.

The Additional Protocol II of 1977 of the Geneva Conventions, which applies to internal armed conflicts, explicitly protects children and requires parties to ensure humane treatment for children and provide them with the care and aid they require.[210]

In 2018, UNICEF, in collaboration with Humanity and Inclusion, developed guidelines on the inclusion of children in humanitarian response.[211] The guidance highlights children with disabilities require not only the same basic services to survive and thrive as other children—nutrition, health care, education, safe water and a protective environment—but also specific services relevant to their disability.[212]

The CRPD affirms the rights of children with disabilities: article 5 on equality and non-discrimination, article 7 on children with disabilities, article 11 on protection and safety during emergencies, article 16 on freedom from exploitation, violence and abuse, article 24 on right to health, article 25 on education, and article 28 on adequate standard of living and social standards.[213] Article 11 affirms the convention’s application in situations of risks, including armed conflicts, and calls for states parties to take “all necessary measures to ensure protection and safety of people with disabilities.”[214]

In 2015, OHCHR published a thematic report on the rights of people with disabilities under article 11 that emphasized the need to mainstream disability inclusion into all aspects of humanitarian emergencies, including armed conflicts.[215]

The report noted the complementary and mutually reinforcing nature of international human rights and international humanitarian law. It also noted that international humanitarian law had “been codified under previously dominant understandings of disability, notably the medical model … and reflects a paternalistic approach to persons with disabilities.”[216] The OHCHR recommends that international humanitarian law should be read using a human rights-based approach to disability that will “lead to substantive changes in policy and practice” to protect people with disabilities in situations of risk and humanitarian emergencies.[217]

In March 2021, the Secretariat of the Conference of States Parties to the CRPD published a report, similarly noting that international humanitarian law employs an outdated medical model of disability and called for a more systemic human rights-based approach to disability in armed conflict and other humanitarian emergencies.[218] It also recognized that children with disabilities are among the groups that face “multiple forms of discrimination,” owing to the intersection of disability and age, and are at greater risk of experiencing violence and abuse and of being excluded from humanitarian support and services and education.[219]

In July 2021, the UN special rapporteur on the rights of persons with disabilities presented his first report, which focused on the rights of people with disabilities in armed conflicts and called on states and militaries to “develop specific protections for persons with disabilities during the conduct of hostilities,” and undertake “disability-inclusive programming” in humanitarian action.[220] The report also highlighted the lack of visibility and inclusion of people with disabilities across the “peace continuum,” particularly with respect to conflict prevention, peace-building, and reconciliation.

The Security Council’s 2018 resolution on children and armed conflict recognizes:

[T]he importance of providing sustainable, timely and appropriate reintegration and rehabilitation assistance to children affected by armed conflict, while ensuring that the specific needs of girls and boys as well as children with disabilities are addressed, including access to health care, psychosocial support, and education programmes that contribute to the well-being of children and to sustainable peace and security.[221]

In 2019, the Security Council adopted Resolution 2475, devoted exclusively to the disproportionate impact of armed conflict on people with disabilities. This resolution calls for greater protection, better assistance, and inclusion during armed conflict and the meaningful participation of people with disabilities in conflict prevention, reconciliation, reconstruction, and peacebuilding. It specifically mentions children with disabilities in the context of their specific needs in accessing assistance. It also calls on the UN secretary-general to include relevant information and data on persons with disabilities in his thematic and geographic reports and briefings as well as highlights the need for ongoing dialogue between organizations of people with disabilities and the Security Council.[222]

However, children and armed conflict has been on the international stage for more than two decades prior to the genesis of Resolution 2475. In 1996, the UN General Assembly requested the appointment of a special representative on children and armed conflict; in 1999, the UN Security Council adopted Resolution 1261, the first resolution on children and armed conflict, acknowledging that the protection of children during armed conflicts is an international peace and security concern.[223] In 2005, Security Council Resolution 1612 established the Monitoring and Reporting Mechanism (MRM) with the ultimate goal to end and prevent six grave violations against children, including killing and “maiming” of children, the recruitment and use of children, sexual violence against children, abduction of children, attacks on schools or hospitals, and the denial of humanitarian access for children.[224]

Multiple Security Council resolutions have asked the UN secretary-general to report on the six grave violations. Children with disabilities are impacted by all six grave violations as well as violations specific only to them; however, they remain largely excluded by UN discussions and documents.

Despite Resolution 2475 and 11 resolutions on children and armed conflict, the UN secretary-general’s thematic and country specific reports and briefings, including the annual reports on children and armed conflicts, rarely mention children with disabilities, reflecting a serious shortcoming in UN efforts to protect all children impacted by conflict.

While all of the UN secretary-general’s annual reports on children in armed conflict include data on children who have been “maimed,” or acquired a permanent injury that could lead to a disability, the reports do not elaborate on their rights as children with disabilities or include other information on conflict’s impact on children with disabilities.[225]

A January 2022 report by the UN special representative for children and armed conflict found that children with disabilities have been overwhelmingly left out by 25 years of UN action on children in armed conflict.[226] Forty-two percent of country task forces on monitoring and reporting believed children with disabilities were not given sufficient space in the implementation of the children and armed conflict mandate.[227] The study identified the following as desired areas of improvement regarding children with disabilities: better data, capacity-building for actors, raising awareness, resource mobilization, and targeted response.[228]

In keeping with this global trend, the report on children in armed conflict in Syria only included information on “maiming.”[229] In addition, only one of the secretary-general's nine reports on the humanitarian situation in Syria since 2019 mentions the specific needs of people with disabilities, and only two mention specific cases of people with disabilities who have been killed.[230] There is no mention of children with disabilities in any of these reports, including since the adoption of Security Council Resolution 2475.

Recommendations

United Nations Security Council

• Ensure the rights and needs of children with disabilities in Syria are recognized and addressed comprehensively in the work and decisions of the UN Security Council;
• Recognize the threat to the rights of children with disabilities in Syria posed by armed conflict;
• Request the situation of children with disabilities be addressed in humanitarian assessment plans and reports on aid regarding Syria by the UN secretary-general, including the under-secretary general for humanitarian affairs and emergency relief coordinator, OCHA, and others;
• Request the UN under-secretary general for humanitarian affairs and emergency relief coordinator to reflect on the situation of children with disabilities in Syria within existing programming in a sustainable manner;
• Request existing mechanisms and tools, including the Monitoring and Reporting Mechanism on children and armed conflict, account for children with disabilities, including the ways in which they and their rights are disproportionately affected by armed conflict;
• Encourage the UN secretary-general to address the impact of armed conflict on people with disabilities, including children, in their thematic and geographic reports, in line with Security Council Resolution 2475, para. 9;
• Hold sustained consultations and dialogues with people with disabilities, including children, and their representative organizations, in line with Resolution 2475, in particular paragraph 10. Call for sustainable, timely, appropriate, inclusive, and accessible assistance to children with disabilities in Syria, including rehabilitation, assistive devices, mental health and psychosocial support services, and education, in line with Resolution 2475;
• Promote the protection of children with disabilities in Syria by paying extra attention to their rights and situational needs, including by moving beyond reporting on the number of children who have been “maimed,” or acquired a physical disability, to considering all children with disabilities, including those who have been physically injured, those who have experienced mental health harms, and those with pre-existing disabilities;
• Ensure forthcoming peace processes consider the specific rights and needs of children with disabilities; and
• Fully reauthorize the UN cross border mechanism ahead of January 2023 and ensure aid is delivered to those who need it.

UN Secretary-General and the Special Representative for Children and Armed Conflict

• Work with the UN country team in Syria to ensure relevant reports collect, analyze, and reflect information about the disproportionate impact of the armed conflict on children with disabilities and their rights;
• Frame concrete recommendations in reports and briefings on addressing the specific rights and needs of children with disabilities, including their right to be safe and protected, right to education, and access to humanitarian assistance, health care, and mental health and psychosocial support services;
• Call for inclusive and accessible education for children with disabilities, in recognition of the specific barriers they face and given the high number of children with disabilities out of school in Syria;
• Advocate for the rights, protection, and well-being of children with disabilities affected by armed conflict in Syria;
• Collaborate with partners to propose ideas and approaches to enhance the protection of children with disabilities in armed conflicts, including in Syria, and to promote a more concerted and coordinated protection response; and
• Advocate and work with the UN Security Council, the UN Special Rapporteur on the rights of persons with disabilities, and organizations representing people with disabilities to change the stigmatizing language of “maiming” in the work of the UN.

Independent International Commission of Inquiry on the Syrian Arab Republic

• Consider issuing a report on the specific abuses and violations experienced by people with disabilities, including children.

All UN Agencies and International and Local Humanitarian Organizations in Syria

• Improve humanitarian coordination and assistance, with a focus on reaching children with disabilities across Syria, particularly in hard-to-reach areas;
• Ensure assistance, including food, water, health care services, and education, is provided in an equitable and inclusive manner, in line with international human rights standards, Security Council Resolution 2475, and the IASC Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action;
• Identify challenges and develop solutions within the humanitarian response, specifically with regard to providing sustainable and inclusive services to children with disabilities, including transportation assistance for children with disabilities to reach school and support services;
• Ensure mainstream child protection humanitarian and educational programs are accessible to and inclusive of children with different type of disabilities. Organizations providing education and other services should strive to ensure staffing and training to guarantee inclusion;
• Employ more sign language teachers, physiotherapists, and counselors, and ensure recruitment is inclusive of people with disabilities;
• Provide adequate and appropriate assistive devices as soon as a child needs it, including wheelchairs, hearing aids, and prostheses, tailored to the child’s specific needs. Access should be provided regardless of whether long-term provision is assured;
• Ensure quality, accessible, human rights-respecting, and inclusive mental health and psychosocial support services for all children with disabilities and their families;
• Identify barriers, and develop solutions, that hinder all people with disabilities from accessing and participating in humanitarian assistance and protection;
• Provide training on the rights of people with disabilities and disability inclusive approaches to humanitarian staff working with children with disabilities;
• Ensure full and effective participation of children with disabilities and their families, as well as organizations of people with disabilities during the planning and implementation of the humanitarian response, and incorporate their views into humanitarian response plans;
• Ensure accessible and child-friendly community engagement processes as well as complaint and feedback mechanisms;
• Collect data on the situation of children with disabilities, particularly on human rights and international humanitarian law violations and risks they face, to inform response and prevention strategies; and
• Identify challenges and develop solutions on how to address existing gaps in collecting comprehensive data.

Donor Governments and Institutions

• Fully fund UN humanitarian responses to meet the needs of Syrian refugees, including children with disabilities;
• Ensure mainstream funding in Syria is meaningfully inclusive of all children with different types of disabilities, including by requiring partners to report on how their programs (such as education and mental health and psychosocial support services) benefit children with disabilities and what challenges remain to ensure programs include and benefit all children with disabilities;
• Provide targeted and tailored funding to ensure the rights and needs of all children with disabilities in Syria are respected and protected, without cutting funding from other programming, including through access to cash for work and non-conditional cash assistance;
• Ensure implementing partners in Syria are following and applying the Inter-Agency Standing Committee (IASC) Guidelines;
• Ensure targeted funding to protect and fulfill the rights of children with disabilities to an adequate standard of living, including housing and food, access to adaptable and appropriate assistive devices, and education;
• Directly support Syrian organizations of people with disabilities as well as humanitarian and educational organizations operating in northwest and northeast Syria; and
• Collect and disaggregate data on disability, age, and gender to monitor the inclusion of people with different types of disabilities, including children.

All parties to the Conflict across All Areas of Control in Syria, including the Syrian Government

• Immediately end all direct, indiscriminate, and disproportionate attacks on civilians and civilian objects;
• Respect international humanitarian law, including by ceasing to use indiscriminate and prohibited weapons, such as barrel bombs, chemical weapons, cluster munitions, and landmines;
• Take all feasible precautions in the conduct of military operations to spare civilians, including by giving effective warnings that take into account the needs of children with disabilities, including through the provision of accessible and child-friendly information;
• Allow civilians to flee hostilities at their free will and give specific considerations to people with disabilities, including by ensuring they have enough time, access to assistive devices, and accessible means of transport to flee;
• Allow prompt and unhindered humanitarian access to humanitarian organizations and UN agencies to deliver impartial assistance to civilians in need across Syria, particularly in rural and remote areas;
• Improve cooperation with humanitarian organizations and UN agencies to ensure assistance is inclusive of and fully accessible to children with disabilities;
• Ensure access to health, services, education, and other basic rights and needs, including by issuing instructions to schools and healthcare centers in areas under your control to ensure children with disabilities have access to education, health care, and other services on an equal basis with other children;
• Ensure children with disabilities have access to quality, specific services they need because of their disability;
• Take steps to open schools and establish new ones where it is safe to do so and improve the physical conditions of already existing and operational ones;
• Allocate services and support targeted for children with disabilities to the greatest extent possible; and
• Ensure organizations of people with disabilities, including those representing the rights and needs of children with disabilities, are effectively consulted and meaningfully included in peace processes and reconstruction phases.

Neighboring States, including Lebanon, Turkey, and Jordan

• Ensure that all children with disabilities who fled Syria can seek health care and support services;
• Facilitate cross-border and other access for humanitarian assistance, including demining organizations, to all areas where there are individuals in need; and
• Allow those fleeing violence to seek refuge, and ensure that all asylum procedures, reception facilities, and processes are inclusive and child- and disability-friendly.

 

Acknowledgments

This report was researched and written by Emina Ćerimović, senior researcher in the Disability Rights Division.

This report was edited by Jane Buchanan, deputy director in the Disability Rights Division, and the senior editor in the Disability Rights Division provided additional review and editing. Babatunde Olugboji, deputy program director, and Benjamin Ward, acting senior legal advisor, provided programmatic and legal review, respectively.

The following Human Rights Watch staff provided specialist review: Sara Kayyali, senior Syria researcher in the Middle East and North Africa Division; Jo Becker, advocacy director in the Children’s Rights Division; Nadia Hardman, researcher in the Refugee and Migrants Rights Division; Kyle Knight, senior health and human rights researcher; Widad Franco, senior coordinator in the Global Advocacy Division; Rothna Begum, senior researcher in the Women’s Rights Division; and Lena Simet, senior researcher and advocate in the Economic Justice and Rights Division. Liam Turnbull, intern in the Disability Rights Division, assisted with background research.

Subhajit Saha, senior associate in the Disability Rights Division, provided editorial assistance as well as production assistance and support. The layout and production were done by Rafael Jimenez, graphic designer; Travis Carr, senior publications coordinator; Jose Martinez, administrative officer; and Fitzroy Hepkins, senior administrative manager. Ali Hag Suliman conducted the photography for this report. 

The report’s author is grateful to Sara Kayyali for her guidance on conducting research in Syria and expert knowledge of the country. Omar Al-Fotihi, Christina Curtis, and Chandler Spaid in the Communications Division were instrumental to the creation of the audiovisual materials accompanying this report.

Human Rights Watch would like to thank Nujeen Mustafa, a disability rights advocate, for sharing her experience of living in war-torn Syria as a child with disability and for connecting the report’s author with another child with a disability included in this report.

Human Rights Watch also expresses its gratitude to non-governmental organizations who shared their knowledge and expertise and connected us with children with disabilities and their families inside Syria, including staff at Sened and Violet Syria.

Human Rights Watch appreciates the valuable input of representatives at Hand in Hand, Humanity and Inclusion, the United Nations Children’s Fund (UNICEF), and a few other international humanitarian organizations that preferred not to be named.

We are grateful to Dr. Katherine Ratzan Peeler, M.D., attending physician in the Division of Medical Critical Care at the Boston Children’s Hospital, for providing a medical assessment of some of the photographs in this report. 

We offer our deepest thanks to Kim Samuel and The Samuel Family Foundation for their generous support, unwavering partnership, and steadfast commitment to ensuring the voices of children with disabilities in Syria are amplified.

Most importantly, Human Rights Watch thanks the children and families whose courage and dignity in sharing their stories and experiences made this report possible. We recognize and share their hope that this report will contribute to protecting the rights of children with disabilities in Syria.

 

Summary

Food insecurity and poverty are enduring problems in Spain. Just over a decade ago, the 2008 global financial crisis sharply exacerbated both food insecurity and poverty. And just as people’s living standards seemed to improve, the Covid-19 pandemic and its economic impact have made both poverty and food insecurity worse once more.

At the start of the pandemic, the Spanish government expanded existing unemployment support programs and introduced a new flagship social assistance program. However, despite the government’s stated good intentions, existing weaknesses and flaws in the social security system, as well as problems in the design of new forms of assistance, meant that support fell short of what was needed. Limitations on the scope and eligibility of both existing and new measures have meant that many people still depend on non-governmental food aid to feed themselves and their families, and struggle to meet their basic needs. As a result, Spain’s government is failing its obligations to protect and fulfil people’s rights to food and an adequate standard of living.

Spain was no exception to the devastation of the Covid-19 pandemic.

As of June 13, 2022, more than 107,000 people had died with or of Covid-19, and there had been almost 1,700 Covid-19 related deaths during the prior month. Beyond the immense human toll and its effect on the general population, the public health protections that significantly restricted activity imposed during a nationwide lockdown and resulting economic closures have wreaked havoc on people living in or near poverty.

Many people in Spain already experiencing poverty were left further exposed to a complete loss of income and lack of access to adequate food. Others, previously employed and living above the poverty line, found themselves suddenly out of work and struggling to access a social security system, which was overwhelmed by demand. As incomes slowed to a trickle, people began to fall behind on monthly payments and to go hungry. The sight of food queues at churches, neighborhood associations, and community centers, with shopping carts left in orderly lines in anticipation of food distribution, became commonplace.

At a minimum, tens of thousands of people living in poverty have faced violations of their right to an adequate standard of living, and difficulties securing their rights to food and social security and social assistance during the pandemic.

The government took some important steps to address the sudden loss of income for so many, expanding an existing furlough program (ERTE, the Spanish acronym for an existing labor code provision for temporary work reduction) expressly for the Covid-19 pandemic, and fast-tracking the introduction of the Minimum Vital Income (IMV, ingreso mínimo vital), a social assistance scheme planned before the pandemic whose introduction was brought forward to May 2020. The IMV was not a basic income scheme, but rather a non-contributory social assistance program. Spain is a relative latecomer among European countries to having a nationwide social assistance program. Both the expansion of ERTE and introduction of IMV were intended to complement the existing social security system.

However, these schemes were insufficient to compensate for the weakness of the social security system and fell short of meeting people’s needs, leaving them instead to rely on food aid. The Spanish state provided emergency food assistance delivered through the EU’s Fund for European Aid to the Most Deprived (FEAD). However, this fell short of demand, leaving charities and community organizations to fill the gap.

The Minimum Vital Income scheme, which, as of June 2022, allowed applicants to claim between €491 and €1,081 per month based on household size, while admirable in its objectives, proved extremely difficult to access due to stringent eligibility criteria and documentation requirements. Investigative journalists have discovered that exclusions baked into the system, some of which are evidently arbitrary, as well as a system overwhelmed by demand, may have contributed to very high rates of refused applications. Studies of official social security data show that three quarters of applications for IMV were rejected. Moreover, the levels of support are inadequate to meet basic needs.

Applicants in the autonomous communities of Spain with similar or complementary minimum income schemes also faced difficulty accessing these supports as regional and central governments were slow to work out precisely what applicants were entitled to and ensure the allowances were compatible. There is a great degree of variance in autonomous communities’ policy on providing such non-contributory social assistance, including levels of support and eligibility criteria.

The ERTE furlough support left out people working in the informal economy (estimated to be approximately 20 percent of the total economy by informed journalists, and 11 percent according to official sources). ERTE furloughs did not adequately cover the lost income of people who work seasonally, or people who are paid in part under the table.

Some groups have been disproportionately affected by the economic impact of the pandemic and inadequate state response. Data and surveys by nationally-recognized civil society organizations such as Oxfam Intermón, Caritas, Save the Children Spain, smaller single-issue-focused organizations, and Human Rights Watch research, indicate that families with children, older people dependent on state pensions, migrants and asylum-seekers with precarious legal status, and people working in sectors where informal employment is common such as hospitality, cleaning, care, and construction have been hit particularly hard during and since the initial economic shutdown.

Single parents (of whom estimates indicate 8 in 10 are women) reported to Human Rights Watch that they skipped meals to ensure their children had enough to eat. Pensioners we interviewed said that social security support which was not adequate prior to the pandemic was now even less so as the price of food and other essential items increased, and that they would not be able to manage without food aid. Pensions finally increased in 2022 in line with the consumer price index, almost two years into the pandemic, as Spain, like other countries, confronted a cost-of-living crisis.

Apart from people seeking asylum and people reliant on age-related pensions, almost all those interviewed by Human Rights Watch who received food aid said they had not relied on food banks or other charities for food prior to the Covid-19 pandemic. Many expressed surprise that they were having to seek food aid and reflected on how their situation had been better prior to the pandemic.

Food bank organizers interviewed by Human Rights Watch observed that their food distribution data showed a sharper rise in demand for food aid during the Covid-19 pandemic than during the years following the 2008 global financial crisis, and outlined their fears about demand levels remaining high once the pandemic-related furlough support ends.

Under human rights law the Spanish government and regional authorities in Spain have obligations to ensure that everyone can access adequate food, and that people are guaranteed an adequate standard of living, including through its social security system. These rights continue to apply during a crisis, including the Covid-19 pandemic.

Human Rights Watch’s findings, based on research in the autonomous communities of Madrid and Catalonia, reflect that despite efforts to provide support, the Spanish state failed to protect people’s rights to food and an adequate standard of living during the pandemic. Human Rights Watch interviewed people who had applied for IMV, as well as regional minimum income schemes in Catalonia and Madrid, people receiving ERTE support, age-related pensions, and/or disability benefit, asylum-seekers receiving limited support, and people with no social assistance at all.

This failure was exacerbated by a social security system which was uneven in coverage depending on region and type of benefit, and a largely absent national social security and assistance system (beyond non-contributory pensions) prior to the pandemic. The first wave of office closures during the pandemic laid bare the fragility of the social security system’s architecture and its inability to cope with backlogs and demand for the new IMV program.

As a result, people went without adequate income from social security support (contributory social insurance schemes) and social assistance programs (non-contributory cash transfers to ensure subsistence), in some cases for several months, and faced inevitable hunger as their money ran out. This happened despite the government’s efforts to accelerate the deployment of its flagship IMV promise as part of its set of policies to mitigate the economic impact of the pandemic. A slow bureaucracy and high levels of refusal of IMV applications contributed to the problem. There was also confusion regarding how the national IMV scheme would interact with regional social assistance programs administered by the autonomous communities.

The Spanish government should speed up its process of assisting people on low incomes who need to access the IMV and make the application process more efficient, as well as make it possible for people to access emergency support irrespective of migration, residency or employment status.

The Spanish government should reassess and revise (age-related) pensions, and the Spanish and autonomous community governments should similarly revise and reassess other social security support rates, indexing them transparently to cost-of-living measures, to ensure that recipients of such assistance can access and afford adequate food. The autonomous community governments should also take concrete steps to reduce their social services departments’ reliance on referring people in need to sources of charitable food aid, and instead ensure that people signposted to such services can access and afford adequate food.

Despite its stated intentions, as it currently stands IMV runs the risk of being a social assistance program that offers too little, too late, and to too few. If the government acts boldly to make significant reforms of the IMV, and social security support more generally, and embed in domestic law protections for specific socioeconomic rights, including the right to an adequate standard of living and to food, it has an opportunity to ensure a better and fairer outcome for people in Spain and to give them the economic resilience to weather future crises.

Recommendations

The national government of Spain should:

• Take concrete steps to enshrine in domestic law the right to an adequate standard of living as an integral part of its domestic constitutional framework, and to ensure that the right applies to everyone regardless of immigration status;
• Take concrete steps to enshrine in domestic law the right to food, as an integral part of domestic constitutional obligations on social security, children’s rights and rights of older people receiving pensions, and to ensure that the right to food applies to everyone regardless of immigration status;
• Consider taking efforts to amend article 53(3) of the Constitution in order to ensure that the social and economic rights contained in Chapter Three of the Constitution enjoy the same level of guarantee as the rights set out in Chapter Two, which are binding for all public authorities.
• Update the 2019-2023 National Strategy for Preventing and Fighting Poverty and Social Exclusion (March 22, 2019) as a matter of urgency to account for the increase in poverty during, and as a result of, the Covid-19 pandemic;
• Remove undue bureaucratic and other barriers to access to the Minimum Vital Income for those in need, including by:
  • Improving the staffing and electronic appointment system of the social security offices dealing with Minimum Vital Income applications, in terms of availability of appointments and in-person assistance, so it can keep up with the demand;
  • Increasing assistance to access for people seeking Minimum Vital Income who are socioeconomically vulnerable or face difficulties accessing digitized application systems, including through in-person or telephone appointments to allow people to make their applications in an efficient manner and in a way that avoids applications being rejected for being incomplete;
  • Making the criteria for Minimum Vital Income more inclusive, especially during periods of declared crisis or emergency, by for instance:
    • removing residence and immigration status barriers;
    • expanding coverage to 18 to 22-year-olds;
    • lifting arbitrary independent living requirements; and
    • ensuring that future crisis or emergency planning for social security support contain measures to make the aid inclusive;
  • Improving communication with the relevant social security administrations of the autonomous communities to ensure that people’s access to Minimum Vital Income is not delayed or denied because they are in receipt of other support from their autonomous community (e.g. RMI in Madrid, or RGC in Catalonia);
  • Investigating the high reported rate of rejection of applications for Minimum Vital Income support, and remedy any shortcoming(s) found in the investigation;
  • Issuing clear guidance to IMV decision makers that refusing applications for insufficient documentation where the document is already held by the national or a regional administration is not acceptable;
• Review and reassess if existing rates of social security support, including Minimum Vital Income, unemployment support and pensions (age-related, disability-linked and other), whether contributory or non-contributory, are sufficient to:
  • guarantee the right to an adequate standard of living;
  • ensure that no recipient of such social security support or their dependents are left in a situation where they have to go hungry;
• Commit to ensuring that social security support rates beyond pensions will be indexed transparently to cost-of-living indices, including the cost of food and utilities;
• Publish regular and recently updated information about the usage of EU Fund for Aid to the Most Deprived resources for food aid distribution, including statistical information on beneficiaries of such support disaggregated by age, gender, marital status, and number of dependent children or others;
• Ensure that future crisis planning reduces eligibility barriers for emergency social assistance to an absolute minimum.

The autonomous communities of Madrid and Catalonia should:

• Better coordinate with the national government to ensure that delays and obstacles in accessing essential social security support are addressed, and that the existence of a type of social security support (or entitlement to such support) is not used as a pretext to dismiss an application for Minimum Vital Income;
• Commit to ensuring that social security support rates will be indexed transparently to cost-of-living indices, including the cost of food and utilities, and sharing good practice with other autonomous communities and the central government where this is already the established practice at autonomous community level;
• Increase assistance, including through in-person or telephone appointments, provided to people who are socioeconomically vulnerable or face difficulties accessing digitized application systems, and are seeking Minimum Vital Income, similar alternate support from the autonomous community, or both;
• Temporarily lift any barriers which may exist under autonomous community law or regulations which preclude people from accessing emergency social security support during a period of acknowledged crisis on grounds of their immigration status or residency, and ensure that crisis or emergency planning includes such a measure.

The UN Special Rapporteur on Extreme Poverty and Human Rights should:

• Consider issuing a formal, public assessment of Spain’s Minimum Vital Income scheme, including the adequacy of levels of support, the accessibility or availability of such support, any gap between stated and attained reach, and fairness of eligibility requirements in human rights terms.
• Consider continuing a process of written correspondence with the relevant Spanish authorities to follow up on the observations of his predecessor in relation to the failures of the Spanish social security and social assistance system in tackling poverty.

Methodology

This research is the first in a series of investigations Human Rights Watch is carrying out in Europe into people’s rights to an adequate standard of living, incorporating their rights to food and to social security, including in the context of the impact of the Covid-19 pandemic and the rapid increase in cost-of-living being experienced globally. The overall objective is to identify rights-based recommendations and policies that can inform efforts to ensure that social security systems meet the needs of everyone in society and are sufficiently resilient to deal with future crises, based on some of the lessons learned from state responses to the Covid-19 pandemic.

Human Rights Watch interviewed 52 people receiving emergency food assistance: 24 in Barcelona in June 2021, 23 in Madrid in October 2021, and another 5 in Madrid in January 2022. We also interviewed 22 food aid NGO staff or volunteers, academics experts, and neighborhood and migrant community food aid organizers across Spain between November 2020 and January 2022, initially conducted remotely while Spain’s “state of alarm” restricted movement, and subsequently in-person.

The in-person testimony focused on four neighborhoods in Barcelona (El Raval in Ciutat Vella district, Sant Antoni in Eixample district, and Verdum and Porta in Nou Barris district) and three in Madrid (San Diego and Palomeras Bajas in Puente de Vallecas district and Lavapiés in the Central district)—widely acknowledged as areas of significant social deprivation.[1] Data show these areas were affected particularly by the pandemic, in line

with general patterns around the socioeconomic determinants of health outcomes.[2]

In addition to Spanish national social security provision, this research makes reference to social assistance systems specific to the cities of Barcelona and Madrid, and the autonomous communities of Catalonia and Madrid. References to these local or regional arrangements may not have direct relevance to other parts of Spain.

Interviews were conducted in Spanish, except for one in Catalan and one in English. All in-person interviews were conducted in line with organizational policy on safety and security in the context of pandemic. Real full names of interviewees were used where possible, and where the interviewee granted explicit, informed consent. Some interviewees preferred not to use their full name, in which case surnames are withheld. Any name that is a pseudonym is indicated as such in the footnote. The age provided for each interviewee and their family members relates to the age on the date of interview. All footnotes to quotes from interviews are to interviews conducted in person, unless indicated otherwise.

During March and April 2022, Human Rights Watch contacted Spain’s Ministry of Inclusion, Social Security and Migrations, and the Ministry of Social Rights and the 2030 Agenda, as well as the Autonomous Community of Madrid’s Department of Family, Youth and Social Policy and Catalonia’s Department of Social Rights, with a summary of our findings and questions for each body. In April, the Secretary General of Inclusion and Social Prediction Policy and Objectives from the Ministry of Inclusion, Social Security and Migrations responded in writing. In June, the Office of the Counselor for Social Rights of the Catalan regional government also responded in writing. The other two official agencies contacted had not responded as of June 22, 2022.

I. Poverty Exacerbated by the Pandemic

The immediate impact of the Covid-19 pandemic in Spain in terms of infections and deaths was severe. In March 2020, the Spanish government declared a “state of alarm,” and imposed public health protection measures that included limitations on movement and economic activity to prevent the spread of the virus.[3] These policies had a significant negative impact on economic activity as many places of work and schools closed, movement outdoors was severely restricted for several weeks, and all business categorized as non-essential—restaurants, retail stores, cultural activities, and recreation—ground to a halt.[4] Businesses that were allowed to remain open saw a significant reduction in clientele and income as people’s movement and ability to engage in day to day purchases was limited, while many businesses chose to close their doors in fear or caution in the early wave of the pandemic.

The economic impacts of the pandemic pulled a new set of people into poverty and led to a rise in food insecurity, notwithstanding mitigating measures implemented by the state and national, local and community efforts to provide food aid. Policy responses to the pandemic also exacerbated the poverty that many—including older people receiving age-related pensions, families with children living on low incomes, and people with precarious or irregular immigration status—were already experiencing prior to the pandemic and subsequent economic shutdown.[5] The outcome was a deterioration in people’s enjoyment of their economic and social rights.

The first affected were those working on shift-based cash-in-hand jobs, followed by service industry workers, and later those in other areas of low-wage employment. People working in the informal economy making a living off street-vending or domestic cleaning, for example, could no longer go out to earn a living.[6] Many of these people turned to food banks to help them get by.[7]

The Newly Impacted: Hospitality Sector Workers

The near-complete economic closure of key sectors of Spain’s economy—tourism, hospitality, and entertainment in particular—for weeks, followed by staggered reopening, and further periods of closure, left many people working in them without income. It is common work practice in these sectors to have seasonal (short-term) contracts, which do not give rise to same sort of unemployment support (paro) in the event of a layoff as a permanent contract would. Many people working in these sectors make up Spain’s “new poor.” In Spain, women are also more likely to be employed in the hospitality sector, and so were disproportionately impacted by the pandemic-related fall out in this sector, as both the number of jobs and hours of work available fell.[8]

Ana Belén, 42, a Spanish woman from Palomeras Bajas in Madrid’s Puente de Vallecas district, used to run a bar in the nearby San Diego neighborhood, which went out of business when the pandemic struck. She lives with an adult son, who is not in employment, and a 6-year-old daughter.

I receive the IMV. It’s €465 each month. Our rent is €600. We can’t buy anything. Every month begins with a debt. There is nothing in the fridge. I can’t put in words what the impact of that on me is. I can’t even say it.[9]

Karima, 38, a Moroccan woman who has been in Spain since 2003 and who regularized her immigration status in 2009, lives with her 42-year-old husband, who is a builder, and 8-year-old daughter. She was working in a restaurant prior to the pandemic. Neither she nor her husband was earning at the time of the interview in October 2021, and they reported receiving €412 IMV per month as a family, and some bags of food from social services, but no unemployment support. She described her family’s situation while queuing outside a Caritas food distribution at San Ramón Nonato Parish in Puente de Vallecas, Madrid:

We eat a midday meal every day, but we often don’t have the evening meal. Our daughter eats and we eat if we can, or we sleep and manage without food. We tell ourselves it’s not hunger, you can make a little rice and manage. We feel rejected. We’re experiencing hunger. We are having a bad time of it.[10]

Otman, 50, a Sahrawi man, lives in the Raval district of Barcelona with his wife and their two children, a 4-year-old boy and a 6-month-old girl. His 78-year-old uncle also lived with them until recently moving into institutional care. Otman was a cook in a university residence until the pandemic began, and has been on furlough ever since. He and his family were awaiting an eviction hearing the day after the interview. He spoke to Human Rights Watch while waiting for food distribution at the Church of Saint Augustine in Raval:

I was earning well as a cook, €1000 a month, never needed any help before the pandemic. For three months we lived off our savings. In August [2020] I got ERTE [furlough] at 70 percent, but this doesn’t let you reach the end of the month. We’ve now decided not to pay rent, we have to eat, that’s more important. […] We’ve stopped buying meat, or sometimes we buy some ground meat or bones. We can’t eat fish because of the price. You no longer enjoy any meals. The child eats first. We eat what’s left after. We eat less protein. I’m a cook, I know every meal is missing something.[11]

Ana María Ametller Hueto, 42, a Spanish woman, was living in the Porta neighborhood of Barcelona with her 6-year-old daughter. She lost her restaurant job when the pandemic struck and her former employer argued that this meant she did not qualify for furlough. During the pandemic she relied on food aid from a mutual aid network, the Red Cross, and DISA Trinitat, and a spending card from social services to purchase food.[12] She spoke to Human Rights Watch while collecting a food delivery at DISA Trinitat, which she took to her new home in another part of the city after she and her daughter were evicted from their apartment in Porta:

The period of the pandemic was really a trauma for me. Sometimes I didn’t have money so would have to ask for help and food from friends. I had a three- or four-month phase of depression when I couldn’t even wash a plate, get up off the sofa. I went hungry during the pandemic, but my daughter never did. You know if you have a child, you can go for two or three days without eating so your child can eat. You’ll make whatever excuse you need to. Whatever we had—if it was macaroni or something else—was for her. I made do with a coffee or a glass of milk.[13]

Benito Balido Gomez, 63, a Filipino man, lives in Barcelona with his 56-year-old Ecuadorean partner, and their 13-year-old son, who is a Spanish citizen. He said he had worked as a cook, waiter, and eventually head chef, until he suffered three heart attacks and had had to stop working prior to the pandemic. He said, after receiving his family’s fortnightly food package at the Indian Cultural Centre in Sant Antoni:

SEPE (the state employment agency) gives me €450 each month in disability benefit. My wife still works at occasional jobs as a cleaner. Our mortgage each month is €720, we have to pay €75 for our son’s school [school-related expenses], water and electric end up about €60-70, my medication costs €60. I worked for 25 years in Madrid and Barcelona in well-known restaurants, always paying into social security. We’ve used up all our savings, sold our jewelry. […] What hurts me the most, is that by profession I’m a cook. And I can’t go back to cooking for work because of my health. And I’m here asking for food. It makes me resentful. I’m just asking for what’s mine. For now, we manage, we eat less. My wife is very stressed. If she gets sick and stops earning, we’re finished.[14]

Older People Reliant on State Pensions

The Covid-19 pandemic and the business closures that followed also put into stark relief the already precarious economic situation experienced by older people living on state pensions.

Spain’s state pension is a key part of the social security architecture and includes an age-related retirement pension, alongside other social security payments relating to disability, survivor (widow/er), and orphan status. Employees and employers pay into a contributory state pension scheme, generally available to people when they turn 65. At the end of 2020, there were approximately 6 million people claiming age-related pensions in total, and 8.9 million pension recipients, when other categories were included.[15]

People who have not paid in for the minimum of 15 years that the contributory scheme requires can apply for a non-contributory pension which had a base rate set by law in 2021 of €5,639 per year; and during the year 2021 also provided for a one-off additional payment of €525 to older people receiving the support who could demonstrate hardship and satisfy housing-related eligibility criteria.[16] However, according to some calculations, the actual annual amount received during the year could range between €1,409 as a minimum pension (with a lower than base rate allowance for older people who cohabit with another pension recipient, or with other family members whose earnings reduce their pension eligibility calculation), to €8,458 for a person with work-related disability or severe injury.[17]

The level of pension support through the non-contributory scheme falls short of what is needed for an adequate standard of living. In 2021, whether one used the lower Oxfam-calculated poverty threshold of €5,840 per year (€16/day), or the AROPE-based calculation provided by the official National Institute of Statistics and EAPN Spain of €9,626 per year, the base rate of the non-contributory pension (€4,833) fell below adequate levels.[18]

As recently as 2018, the UN Committee on Economic, Social and Cultural Rights criticized the inadequacy of Spain’s contributory and non-contributory age-related pensions, as insufficient to guarantee pensioners and their dependents an adequate standard of living, and called on the Spanish government to re-establish a clear index between social security benefits and the cost of living.[19] As pandemic restrictions waned, in May 2021, pensioners took to the streets across Spain, demanding “dignified pensions” that would protect their rights and permit them an adequate standard of living.[20] Pensioners’ associations have raised concerns that the existing levels of pension support is insufficient to maintain a dignified standard of living, as a result of more than a decade of sub-inflation increases, and what they considered an ongoing decrease value of their pension in real terms.[21]

In a positive step, the government passed legislation, which came into force on January 1, 2022, raising pension rates and ensuring that they are linked to the consumer price index, so they keep pace with inflation, which at this writing is 8.7 percent across the board (and 11 percent for food, and 17.5 percent for housing, including utilities).[22]

María, 71, is a Spanish citizen who lives with her 85-year-old sister, who is an Ecuadorean citizen, and who María did not think was eligible for any public support. When she spoke to Human Rights Watch in June 2021, María had been waiting in line for three hours at a food distribution point in the Sant Antoni district of Barcelona. She had been coming regularly for six months following a referral by the city’s social services department. She said:

My (age-related) pension is €600. The rent for the room my sister and I share is €400. I worked for 23 years as a cleaner and paid social security. The pension I get after working is not enough. All I ask for is a bit more, so I don’t have to wait here and beg for food. I’m not even asking for a dignified existence, just enough so I don’t have to beg for alms.[23]

Fernando, 73, is a Spanish citizen who moved to Madrid in 1963 and says he worked until he retired at the age of 65. He lives alone in an apartment a friend lets him live in. He spoke to Human Rights Watch while waiting for food at the Caritas distribution in San Ramón Nonato Parish in Puente de Vallecas, Madrid, where he had been getting food regularly for six months.

I receive (age-related) pension. It’s €395 [per month]. It’s very little. You can’t afford a life or pay the bills. The non-contributory pension is a pittance. What you need to understand is that this line we’re standing in is not a line of hunger, it is a line of need. People are here because they need help, they need support, they are not just here for food.[24]

Families with Children

Frontline organizations providing support to people in need, and anti-poverty analysts, have documented how families with children have been disproportionately impacted by loss of income, or reduced income while on furlough, during the pandemic.[25] Children’s rights groups raised concerns about the unequal impact during a prolonged period of school closures and total confinement of children at home for six weeks during 2020.[26] Low-income families struggled to make ends meet during this time, as the additional costs of keeping children fed rose. Survey research by Spain’s main single parents’ advocacy group, FAMS, has highlighted the disproportionate impact on single parent households, of which an estimated 82 percent are women-led.[27] In a survey of 545 single-parent households across Spain (of which 542 were women-led) conducted during the initial state of alarm, within the first month of closures, 27 percent said they could not afford the additional food costs, and another 34 percent said they had managed so far but were not certain they could do so if the situation continued.[28]

The official data confirm this worrying picture. The latest available national cost-of-living survey, from July 2021, is clear that while 26.4 percent of all households were at risk of poverty and social exclusion, the disaggregated data showed that 49.1 percent of single parent households were, and 37.8 percent of all households with more than two children also were.[29]

Spain and its autonomous communities operate a complicated system of allowances and benefits for families with children, some on the basis of disability, family size (single-parent households and households with three or more children), or means-testing, and others universally available, for example a monthly additional tax allowance for working mothers with children under the age of three.[30]

The inadequacy of Spain’s social assistance and social transfers to households with children has been the subject of significant international criticism in recent years. In 2019, the European Commission highlighted in a recommendation to the European Council that the “capacity of social transfers other than pensions [in Spain] to reduce poverty remains among the lowest in the Union, especially for children,” and that “[s]ocial spending as a share of GDP in Spain for households with children in Spain is one of the lowest in the EU and is poorly targeted”.[31]

A 2020 IMF-commissioned study documented that Spain has the highest child poverty rate in Western Europe (22.1 percent in April 2017), partly due to weak and inadequate coverage of its income support schemes.[32] The limited available evidence suggests that the introduction of the IMV, precipitated as a pandemic response but already part of the coalition government’s agenda, is not reducing child poverty, notwithstanding the Inclusion and Social Security Minister’s statement that it is “the best instrument to tackle poverty,” and in fact has been insufficient to mitigate growing child poverty during the pandemic.[33] Spain’s high commissioner for child poverty testified before parliamentary committee in October 2021, that although IMV was an important paradigm shift, Spanish welfare support was not reaching many families living in poverty, because the support provided was in itself insufficient, the eligibility thresholds were too restrictive, and because many families did not know they are entitled to such support and do not apply.[34] In a reply to Human Rights Watch, the Ministry confirmed that it aware of the problem of low take-up by potential beneficiaries, and considered addressing this a priority.[35]

Kréta Adamova, 29, a Czech Roma woman, who has lived in Barcelona since she was 4, lives in affordable social housing in the Verdum neighborhood, with her 8-year-old and 9-month-old daughters, and her 63-year-old mother. She worked in a slaughterhouse until she experienced a workplace injury three years ago. She said:

It’s hard to admit but we’ve gone hungry during the pandemic. From the food bank you get non-perishable foods, but the kids can’t just eat rice, lentils and beans. If we had money, we might buy chicken or meat for her (the older child) but not us (the adults). I would like my daughter to eat well. We’re now getting fruit and vegetable from the neighborhood food aid network. We can’t afford fruit at all. We make one dish and eat it across two meals in the day, and make one sponge cake (bizcocho) using leftover or expired yogurt to last for breakfast for three or four days.[36]

Veronica, 37, also lives in the Verdum neighborhood with her three children, aged 18, 14, and 12, and her husband, 34. All are Spanish citizens. Her husband was self-employed and worked in construction before the pandemic, and she earned money working in the informal economy as a cleaner. They live in social housing. She said:

We’ve been in debt to the bank since April 2020. We’re managing, we’ve pawned our TV, one of our mobile phones, and a video game console, to buy food. Thankfully my social worker now gives us €320 each month to pay for food and hygiene items at the supermarket. But we’ve had to come up with tricks at home to manage. We’re five people. I make four portions and tell the children I’ve eaten already. And I have a glass of milk for dinner. The strange thing is as a mother sometimes this comforts you. You get used to it. But look at my skin, I have vitiligo [an autoimmune skin disease which causes depigmentation], it’s a sign of stress. And I’m less patient, and I get anxious, when the kids ask me for things.[37]

Joan, 44, a Spanish man born and raised in Raval, continues to live there with his wife and their 10-year-old son. He was not eligible for ERTE furlough support given he worked in the informal sector, but was receiving unemployment benefits. After they received their fortnightly food package from a distribution center at the Church of Saint Augustine, Joan said:

I was working as a builder, always cash-in-hand, but there’s no work now. I’m unemployed and have been coming to the food bank for eight months. I get unemployment benefit (paro) but not minimum vital income. We’re managing, but look at us, we’re here, we’re at our limit.[38]

Many families living on low incomes in Spanish cities share apartments, often without formal leases, due to longstanding problems of insufficient social housing and unaffordable private sector housing.[39] Spain has among the lowest rates of social housing stock in the EU.[40] Families interviewed living in these circumstances reported having to choose between eating and paying their share of the rent, particularly during the initial near-total lockdown between March and May 2020. Migrant families with uncertain immigration status, and limited or no access to social security support, are more likely to live in shared housing.

Undocumented Migrants and Asylum-Seekers

Human Rights Watch research indicates that the rights of undocumented migrants and asylum seekers have been disproportionately affected by the flawed state response to the economic downturn. Migrants are more likely to earn at least part of their salary informally, thereby receiving lower or no furlough payments, or to be working in the informal sector, or to lose jobs in sectors impacted by the period of closures and public health protection measures, such as domestic care, and subsequent economic downturn.[41]

Migrants working in the informal economy, those without papers, and people seeking asylum reported difficulties accessing social security and even in some cases food banks because of a lack of the documents needed to establish eligibility. People without legal immigration status are only allowed basic, emergency social assistance, which is usually short-term or one-off in nature. People seeking asylum are in theory entitled to basic levels of social welfare support to ensure minimal conditions of dignity, but these require the person to make further applications beyond their initial request for protection. These problems were exacerbated by the closure of administrative offices that provide documents to migrants and asylum seekers for part of 2020 increased existing backlogs.[42]

Silvia Sánchez Bonilla is a Colombian woman who arrived in Spain with her husband, David, in August 2019. Both sought asylum and were awaiting formal registration of their asylum claims when interviewed by Human Rights Watch in June 2021. Silvia formed the collective, Carers Without Papers, which was running an informal food bank for others in a similarly precarious situation, who rely on occasional work in the informal economy for income. She showed Human Rights Watch the accommodation she and her husband were sharing, in the technical booth and storeroom of a theater which had given them shelter.

I can’t describe the feeling of not being sure what we’re going to eat the next day. By luck, we have had good neighbors and people who have helped us with food and somewhere to sleep. Equally, when we find some food and someone else needs help, we share it. We’ve been living on scrambled eggs and rice. We can’t cook where we are living now until nighttime, because there are people working upstairs.[43]

About a week after they were interviewed, the couple received their asylum registration cards, which gave them legal authorization to work in Spain until there is a decision on their asylum case.

Gloria Díaz, 39, also from Colombia, sought asylum in Madrid with her then 16-year-old daughter in February 2020. They were stranded and left without money in Barcelona when asylum processing was suspended during the pandemic. They restarted their asylum requests in June 2020 once immigration offices reopened. Her daughter became pregnant during the pandemic while they were living in a room in a shared apartment in greater Barcelona. She said:

When we lived in the shared apartment, we had to pay our way. We had no food, so when I could, I would try and cook for everyone with what they had, so my daughter and I could eat. My daughter was very sick, vomiting, right through her pregnancy and lost a lot of weight.[44]

Since late May 2021, the government has provided Gloria, her daughter, and newborn granddaughter accommodation in a town about 30 kilometers outside Barcelona and access to an online system which covers the costs of basic foodstuffs. Gloria said a month later:

Of course, we continue to economize and ration our food. My daughter is not vomiting anymore but hasn’t regained her weight. She’s having problems lactating. But at least we’re living together, we shouldn’t complain.[45]

Miguel, 32, and Jennifer, 27, from El Salvador, spoke to Human Rights Watch while collecting food distributed by the Indian Cultural Centre in Barcelona, where they were referred by the city’s social services for food aid. They and their 4-year-old daughter have lived in Barcelona since 2019 without regular immigration status after having been refused asylum in another EU country. Miguel said:

We live in a shared apartment, us three in one room. I earn about €600 each month as a construction worker. We spend €400 on our room and €80 on school fees. I have to pay my metro fare to get to work. We just about get by for food each month. We often go for one week every month where my wife and I don’t eat so our daughter can. We have to bear this. We’re the parents. If we didn’t receive this food aid, we wouldn’t reach the end of the month. At least we have milk and some food to give our daughter. I don’t know what we’d do without it.[46]

Yanay is a 37-year-old Peruvian single mother, without regular immigration status or fixed employment, who arrived in Spain in 2019. At the time of interview, she was living with her 18-year-old son and 14-year-old daughter in a room in a shared apartment in the Puente de Vallecas district of Madrid. She spoke to Human Rights Watch while standing in line waiting for food distribution organized by Caritas Madrid from the San Ramón Nonato Parish in the San Diego neighborhood of Puente de Vallecas:

We’ve gone hungry. We’ve had to cut back on a lot of things. There is no meat. We share fruit. The only milk we get is from the food bank. I work on the black market as a cleaner covering a friend’s shift on some days to pay my children’s school expenses. We wake up every day in the hope things will improve, but I wake up crying. This is the effect of not eating and not knowing what will come. The children know, they realize what is happening, and it affects their studies.[47]

II. Growing Reliance on Food Aid

As poverty suddenly grew and people’s need for urgent food aid was evident, national charities, civil society groups, and community organizations stepped in to fill the gap.

National food bank networks, which receive and distribute EU-funded food aid (Fund for Aid to the Most Deprived, FEAD) via the Spanish and autonomous community governments, and a wide variety of community-based associations and neighborhood groups mobilized food distribution to people unable to afford or access adequate food, including people who had been referred to them by social services agencies.[48]

National Food Bank Networks

Demand for food aid has surged since early 2020. The Spanish Federation for Food Banks (FESBAL), which coordinates the country’s largest food banks and ensures delivery of governmental food aid with FEAD support, reported a marked increase in demand during 2020.[49] Interviewed in November 2020, Ángel Franco, FESBAL’s spokesperson, estimated that FESBAL had doubled the quantity it distributed from the spring to the summer of 2020.[50] By June 2021, FESBAL estimated its assistance had reached 1.56 million people including more than 300,000 children during 2020, almost up 50 percent in terms of total people reached compared to 2019. Figures from FESBAL member organizations in Madrid and Barcelona, interviewed by Human Rights Watch, were consistent with national trends.[51]

All three representatives of the national food bank network expressed shock at how quickly demand increased, and compared it to their experience during the global financial crisis and the subsequent Great Recession of 2008-10, which led to a housing and poverty crisis in Spain that continued after the recession formally ended in 2014.[52]

Gema Escrivá, Director General of the Madrid Food Bank told Human Rights Watch in November 2020:

We’ve already seen an enormous spike in demand. In three months of the pandemic, we were back at the levels of 2016; in the past financial crisis it took us from 2009 until 2016 to hit a peak. The crisis has been brutal in its velocity. And we’re still only in the calm before the storm really hits when the ERTE [furlough scheme] ends.[53]

Figure 1: Estimated number of people receiving food aid through FESBAL distribution, by year (2007-2020), compiled from FESBAL public documents[54]

Caritas, a Catholic relief and social service organization, also reported that by April 2020, it was assisting twice as many households in Barcelona Diocese with food and financial support as it had done the previous April and noted that it was seeing three times as many first-time visitors compared to before the pandemic.[55]

Human Rights Watch also sought information in writing from the central government and relevant authorities at autonomous community level on national and regional food bank use. At the time of writing, only Catalonia’s Department for Social Rights had provided this information.

The data in Catalonia showed a 48 percent increase between 2019 and 2020 in the number of people collecting food aid distributed using the EU’s FEAD resources through Catalonia’s FESBAL affiliates and Red Cross chapters. Across Catalonia, despite a decrease in food aid distribution during 2021 from the 2020 peak, there were 60,524 more people receiving such food aid in 2021 compared to 2019 (an increase of 20 percent). The figure below shows how many people receiving FEAD-supplied food aid by Catalan province, and the total number at autonomous community level.

Figure 2: Number of people receiving FEAD-supplied food aid in Catalonia, disaggregated by province. These figures for each province are composites of the number of people assisted by the FESBAL affiliated food banks and the relevant Red Cross chapters.[56]

Neighborhood and Community Organizations

As need increased from March 2020 onwards, neighborhood and community groups, often building on existing links with housing rights activist networks developed during the 2008-10 financial crisis and migrant community organizations, began to coordinate mutual aid support networks, which included collecting and distributing food, or to significantly increase their existing efforts.[57]

Madrid

In Madrid, especially in lower-income neighborhoods, grassroots groups rallied quickly to deal with the demand, based on their existing activism and community links. In Vallecas, a largely working-class neighborhood to the south of Madrid’s city centre, a group of activists described how the collective Somos Tribu VK emerged to deal with the increasing need. Marimar, a social worker, said:

This was a social crisis that came out of a public health crisis. We started with a WhatsApp group. As a social worker and community educator you know what is coming. People in this neighborhood live at their limits. When the state of alarm came, there was an immediate need for food. People who made a living collecting scrap metal, or street-vending, or selling in informal open-air markets, suddenly had nothing—in some parts of Vallecas we would guess that’s a third of the population.

César Bárcenas, coordinator of one of the Somos Tribu VK neighborhood pantries, in San Diego, added:

It’s just how our neighborhood works. It’s a neighborhood of solidarity. People now come in and donate food and say we got through it with your help, now it’s our turn to help you.[58]

In the Lavapiés neighborhood of central Madrid, another low-income area, Asociación Valiente Bangla, an organization of Bangladeshi migrants in Madrid advocating for their rights, organized food collection and distribution from late March through the end of June 2020, initially for Bangladeshi migrants, but eventually to about 450 households including migrants from various countries and non-migrants. Asociación Valiente Bangla is part of a wider network of groups coordinating food distribution in Lavapiés, including AISE, a Senegalese migrants’ association; Dragones Lavapiés, a youth football club; and BAB-Colectivo and Hola Vecinas, both neighborhood associations.[59]

Mohammed Fazle Elahi, from the Asociación Valiente Bangla, said:

Many of the Banglas [Bangladeshis] here are undocumented, they don’t have papers. So there is no aid from the state, the regional government, the city’s social services. These are people who work in restaurants cooking and cleaning, in internet and phone shops, in greengrocers, working 15 hours a day on contracts that say they work 4 hours. It’s not just Banglas, also Africans, Moroccans, Latin Americans, Indians, Pakistanis. What we need is to live in dignity, to work in dignity and pay our taxes. We need regularization. If our work and immigration situation was more regular, we would have better access to the unemployment support.[60]

Barcelona

In Barcelona, grassroots neighborhood associations, formal and informal trade union organizations, food distribution centers run by churches, and cultural organizations, such as DISA Trinitat (part of a group of Caritas-linked neighborhood pantries, see further description below) and the Indian Cultural Center, reported a similar sudden spike in people needing food aid.[61] Marta Marzal, coordinator of the food distribution at the Indian Cultural Centre told Human Rights Watch in June 2021:

We’re a cultural organization. We used to have dances and festivals and donate to food banks sometimes. We didn’t distribute food. Suddenly the pandemic and state of alarm came, and we saw a need to help people. Some people earned 20 to 40 euros day to day, and were stuck at home with no money. We began on March 25 or 26, 2020, and by the second day there were 100 people. By mid-April there were 600. We are now seeing 350 families, which is about 720-750 beneficiaries, every fifteen days. We used to give food to anyone who came and said they needed it, but we now coordinate with Social Services, so everyone who now queues is supposed to be referred to us by Social Services. And we’ve had to say to Social Services, we can’t take more, we don’t have the food. But still people come because they can’t get a Social Services appointment, the city council’s offices are overwhelmed. Who helps these people? The administration doesn’t even know they exist.[62]

The People’s Union of Street Vendors in Barcelona, who are primarily from West African countries, organized food collection and distribution during the first months of the pandemic, after the pandemic meant their members (referred to colloquially as manteros in Spanish and manters in Catalan, owing to the practice of vending their goods displayed on a blanket or manta) were unable to work. The Union worked together with the Barcelona Food Bank, Barcelona’s main wholesale food market, and individuals who donated food or cash, to ensure street vendors and others who contacted them for help did not go hungry.[63]

Papalaye Seck, a member of the street-vendors’ union said:

Street-vending was prohibited before the pandemic too. Many, most of the manteros don’t have regular migration status, it’s the only way to survive. The pandemic came, and there were fines for going out. The manteros couldn’t sell anything. It’s easy for police to stop us because we’re Black. Whatever manteros were earning before became zero. Most manteros don’t have savings, bank accounts, no ERTE. We knew many manteros were already poor and suffering, but the pandemic made it obvious.

People who live and work in the hidden economy can survive in normal times, but when a crisis comes and the formal economy stops, so does the hidden economy. We need these people to be included in the support. The government announce a minimum vital income and say they won’t leave anyone behind. But what about the undocumented people who aren’t even allowed to ask for it? It leaves thousands and thousands behind. What we need is a regularization policy to allow migrants to work, pay social security and taxes, and get the support.[64]

Church-linked Food Distribution

In addition to the long-standing tradition of churches distributing “alms,” which multiplied with queues extending outside churches for weekly or fortnightly food distribution, Caritas Spain, the relief and social service organization linked to the Catholic church, and its local volunteers began developing new ways of dealing with the rising need for food aid. Part of this was an effort to move away from the classic “handout” model towards a model that would assist families and individuals to overcome broader challenges including the stigma of queuing for food, and address some of the underlying structural factors driving people to need food aid.

DISA Trinitat in Nou Barris, Barcelona

DISA Trinitat is a volunteer-run social project and pantry backed by nine local parishes and Caritas of Barcelona Diocese, with help from Barcelona city council and the local government and social services in the Nou Barris district. It has provided direct aid to people in poverty since 2012.[65] To receive assistance from DISA Trinitat, people need to be referred either by the city’s social services or by Caritas. Seventy percent of the food it distributed comes from the Banc d’Aliments de Barcelona and FEAD-backed food distribution programs, and the remainder from Caritas, local church donations, supermarkets, philanthropic foundations, and private individuals.

Antoni Quintana, who coordinates DISA Trinitat, described the project as initially being one based on creating an environment in which people experiencing poverty could receive assistance and have volunteers work through other concerns they may have (for example, mental health, employment, medical care), and not just hand out food. Quintana told Human Rights Watch that they adapted their model during the pandemic:

Other DISAs and social projects closed when the pandemic came. But we felt an obligation to stay open, despite the risks to us, or rather, knowing the risks to us. […] There’s been a huge rise in people coming since the pandemic. The majority of new visitors are families with children. They say single-parent families, but let’s say it like it is. They are single-mother families, mothers with children.

After all this we now need to work out how we return to a model that is more focused on human dignity, that recovers the human part of what we should be doing, accompanying them in their lives so they don’t need to come back.[66]

Data from DISA Trinitat bear out broader trends observed by the FESBAL member food banks and Caritas for people attending food distribution in the first year after the pandemic hit Spain, with a reduced number of households seeking food aid over the course of 2021, but remaining notably higher than pre-pandemic levels. The data from DISA Trinitat are also consistent with the broader pattern documented by the Catalan regional government’s data on FEAD-provided food aid across the four provinces of Catalonia.

Figure 3: Data from Ajuntament de Barcelona and DISA Trinitat, June 2022. Each household represents 2.64 people based on an estimated mean.[67]

Quintana described the role of the DISA Trinitat volunteers in relation to the responsibilities the state has to its citizens and residents, saying:

With the taxes we all pay, the state should be able to take care of more people, in dignity, decently. But if we weren’t here, it would be chaos, people would be living on the street. It feels like we’re the firefighters of social justice, we keep putting out fires with the food distribution. But the social injustice continues.[68]

The Caritas Economato Solidario in Puente de Vallecas, Madrid

Human Rights Watch also visited and spoke with staff, volunteers, and service users at a similar Caritas-backed social supermarket (economato solidario) scheme based in the parish church of San Cosme and San Damián in Vallecas, Madrid.[69] The project had been running as a pilot project for a year, backed by Caritas Madrid’s Fourth Parish.

People were referred to the social supermarket by the city’s social services, by Caritas, or by other neighborhood organizations. Once referred, they could visit on days the social supermarket was open, and exchange the “points” they had been allocated based on their family size for their choice of non-perishable foods and cleaning and hygiene supplies. When interviewed in January 2022, a representative of the local Caritas parish said the social supermarket planned to introduce a separate voucher program, operated in coordination with a local market, where service users could exchange points for fresh fruit, vegetables, and meat.[70]

III. State Response Failing to Meet Needs

Poverty rose in Spain during the pandemic, as it did in other countries in Europe.[71] Official European Commission data from Eurostat showed that although across the EU, median disposable incomes and “at risk of poverty and social exclusion” (AROPE) rates remain stable, the AROPE rate rose in nine EU countries, of which Spain was one.^[72] A World Bank commissioned study found in August 2021 that between 3.6 and 5.4 million more people across Europe were at risk of poverty or social exclusion compared to before the pandemic, noting that the “economic fallout could have been much worse absent the sizeable government support.”[73] The study also noted the disproportionate impact on Southern European countries which have 36 percent of the 27 EU countries’ population but accounted for more than half total increase in poverty, and projected that by 2022 “at risk of poverty” rates in Southern European countries would have returned to their 2013 peak, following the global financial crisis.[74]

A key NGO report by the European Anti-Poverty Network Spain (EAPN-ES) estimated that some 4.5 million people across the country were living in severe poverty (on less than €6,417 per year) in 2020.[75] EAPN-ES estimated that 620,000 more people were at risk of poverty in Spain in 2020 than in 2019, representing the first increase in this rate since the peak of the effect of the global financial crisis in Spain in 2013/14.[76] Oxfam Intermón has calculated, using official data, that during 2020, people in the lowest two income deciles in Spain saw their disposable income fall 15.8 and 9.7 percent, on average, respectively, compared with a 3.7 percent average decrease in all other income groups.[77] Official figures based on the annual cost-of-living survey published in 2021 showed that the percentage of the population experiencing “severe material deprivation,” rose from 4.7 percent in 2019 to 7 percent in 2020.[78]

Perhaps the most visible symbol of the material deprivation was the growth in lines of people queuing to receive food. This was linked to the increase in the number of people at risk of poverty, alongside the sharp drop in income for so many already in the lowest income brackets.

The government response to the economic impact of the pandemic was hampered by existing failures in social security and social assistance systems, including the inadequacy of levels of financial support, a difficult to navigate social security bureaucracy, and delays in social security application processing and payments. New efforts at the national level to address the situation—a pandemic-related furlough program and ban on layoffs to protect workers—together with a newly introduced but previously planned minimum national income (IMV) program helped, but were insufficient to meet additional needs, especially the IMV which in practice benefitted only a fraction of its intended beneficiaries.

A Pre-Pandemic Social Protection System Doing a “Poor Job” Tackling Poverty

In February 2020, the then-UN Special Rapporteur on Extreme Poverty and Human Rights, Philip Alston, concluded a trip to the country, assessing that it had a “completely inadequate social protection system that leaves large numbers of people in poverty by design.”[79] Alston assessed Spain’s social protection system as doing a “poor job of tackling poverty,” remarking that “when support does reach people, the amount can be extremely low.”[80]

The government’s response to the pandemic, in part, sought to address existing criticisms of the system, but fell short of what was needed to ensure protection of people’s rights to food and to an adequate standard of living.

Pandemic Employment Protections: Furloughs and Bans on Layoffs

To protect workers and prevent massive unemployment, like other countries, the Spanish government responded to the imminent economic crisis with a furlough scheme. In Spain, this covered 70 percent of the wages of employees and workers unable to work due to the pandemic, and a temporary ban on employers using the pandemic as a justification for layoffs.[81]

Announced in March 2020, the pandemic-related furloughs (referred to as ERTE, based on the Spanish acronym for an existing labor code provision for temporary work reduction extended for this purpose as an emergency measure) were initially scheduled to last only until the “state of alarm” ended in June 2020.[82] The ERTE scheme was extended successively, with some modifications, until it ended on March 31, 2022.[83] The number of people receiving ERTE plateaued at around 750,000 between September 2020 and March 2021, but had dropped by January 2022 to 105,000.[84]

The tax evading pay practice in which employers pay their staff part of their income officially with social security contributions and tax deductions, and the remainder unofficially in cash (often referred to as “in B”), created a problem for low-wage workers paid this way.[85] Although the exact extent of the practice is hard to pinpoint, most estimates indicate that approximately 20 percent of GDP is in the informal economy.[86] Fourteen percent of employers surveyed in 2021 admitted to paying some or all of their employees’ wages “in B.”[87] Women are more likely to be in jobs that are paid “in B” than men, and people under 24 are particularly susceptible to such exploitation given Spain’s high level of youth unemployment.[88]

Furlough payments only covered 70 percent of the officially registered salary and not the “in B” component. In July 2021, the government passed a legislative reform which banned payments in cash for products and services over €1,000, in an effort to curb tax evasion on cash transactions.[89] The effect of this reform is likely to have been minimal for people on low wages calculating furlough entitlement, because, as was illustrated by the experience of those Human Rights Watch interviewed, the “in B” portion of their monthly wage is almost certain to have been well below the €1,000 threshold.

Jessica Ferrer, a 36-year-old Italian woman of Venezuelan origin, who worked as a cook before the pandemic, and at the time of her interview was an active participant-organizer in a neighborhood pantry coordinated by Somos Tribu VK in Puente de Vallecas, Madrid, explained what this meant in practice. She said:

We are ordinary working people. I worked as a cook and earned €825 a month. €425 of that was official salary, and €400 was paid “in B”. So, when I got my ERTE eventually in November 2020, it was 70 percent of €425, not of €825, and ended up being about €300.[90]

Workers in the informal economy who suddenly had no income also, in most cases, had no recourse to the contribution-based social security system (since they had not paid into them) or to furlough payments (which were available only to those whose pay and jobs were registered officially on the tax and social security systems). Nor could workers in the informal economy, who were already outside regular formal employment, benefit from the ban on layoffs.

It is worth noting that the absence of the ERTE furlough scheme, would have been disastrous. ERTE support did reach people in the lowest income quintiles and was among the more efficient of the social security responses, but still fell short for key sectors of the population.[91]

Minimum Vital Income: An Important, but Flawed, Program

Faced with rising unemployment and projected poverty with the onset of the pandemic, Spain’s national government legislated in May 2020 for a national Minimum Vital Income (IMV, in Spanish) scheme, allowing applicants to claim between €461.50 and €1,015.30 per month based on household size and composition.[92] The IMV was, in theory, available to applicants retroactively from June 1, 2020, so long as they applied before the end of 2020.

The incumbent governing coalition had already planned to introduce the IMV prior to the pandemic, but accelerated its implementation as a pandemic response.[93] The national IMV scheme was developed in addition to existing social assistance schemes established by Spain’s regional governments or autonomous communities, of widely varying quality, levels of support, and reach.[94]

It is important to note that the IMV is not a universal basic income scheme, as its name may suggest, but rather a basic social assistance program that provides support based on several eligibility criteria.[95]

In June 2020, soon after the IMV was announced, Olivier de Schutter, the UN Special Rapporteur on Extreme Poverty, offered a cautious welcome to the national scheme, calling on authorities to widen coverage and eligibility to ensure people were not excluded by age and immigration status requirements.[96]

IMV has some arbitrary exclusions built into its design, which affect young adults in poverty and people without regular immigration status. It is available to people between the ages of 23 and 65, and to adults aged between 18 and 22 only if they are responsible for a child.[97] It requires applicants to document that they have lived independently for a minimum period of between one and three years, and requires all applicants to have one uninterrupted year of legal residence in Spain.

In practice, the IMV’s reach has been limited and its rollout slow and uneven across Spain’s regions, who are responsible for providing social protection. There is also some confusion about how IMV allowances correspond with regional social assistance, and how national and regional authorities reconcile any difference in accounting. An official in the Ministry of Inclusion, Social Security and Migrations clarified in writing to Human Rights Watch that IMV was designed as a “floor provision” that autonomous communities could “complement” or top up with their social assistance programs.[98]

An investigative analysis by the news outlet Diario 16 of public data on IMV coverage estimated that only 6.4 percent of the country’s population living below the poverty line were receiving the IMV by the end of March 2021, and that it varied between 3.5 and 16.8 percent depending on the region in which the application was made.[99] The same analysis showed that by the end of March 2021, nine months into the existence of the IMV scheme, three quarters of applicants had been refused support, for a variety of bureaucratic reasons including non-compliance with a complex application process, stringent documentary requirements (such as evidence of people living in the household and updated municipal registration certificates showing the members of the household or “unit of cohabitation”), or a flawed means-testing calculation (see below).[100] Further research during the year by NGOs working in this area corroborates the concerns about IMV’s extremely limited reach, although their estimates differed slightly. Oxfam Intermón estimated in June 2021 that 1.56 million people in severe poverty were left out of IMV’s reach owing to design flaws.[101] A survey by Caritas and social science researchers at the FOESSA Foundation found in October 2021 that—owing primarily to a lack of information about the program—only 26 percent of households living below the poverty threshold had successfully completed their IMV application; and of those only a fifth had been successful, and about half had been denied the support for the reasons noted by Diario 16 and Civio (below).[102]

More recent detailed analysis of official data by Civio, a public interest journalism and advocacy organization, has shown that 29.8 percent of refused applications were because the social security authorities considered the household or “unit of cohabitation” information to be inaccurate, and a further 18.8 percent for missing documents.[103] A professional association representing senior social services workers raised similar concerns in April 2022.[104] One organization that provides support (including food aid) to families with children and pregnant women in poverty, explained to Civio’s researchers that if a couple separated during the pandemic and one parent was left with the children, because municipal offices were closed or facing backlogs they did not update their registers.[105] Separately, Civio notes that Spanish administrative law does not require applicants to provide copies of documents that should already be in the possession of the authority concerned or other administrative authorities. As result, some of the refusals of IMV support for “missing documentation” may not have been in accordance with Spanish law.[106] Related research by Civio on high levels of success in appealing IMV refusals supports this assessment.[107]

People Human Rights Watch interviewed described that they had faced these reasons when refused IMV support.

Pedro Luis Álvarez Malberty, a 40-year-old Spanish citizen born in Cuba, who acquired Spanish nationality through descent in 2011 and migrated from Cuba to Spain in November 2020 with his wife and their two young daughters, aged 6 and 3. Their daughters have Spanish nationality, but Álvarez’s wife remains a Cuban national. Álvarez told Human Rights Watch, that after falling ill and needing surgery, he did not qualify for medical disability benefit because he had not satisfied the minimum contributory period for the type of illness he had. Pedro was not eligible for IMV because his wife’s Cuban nationality and related length of legal residence in Spain meant that the family of four did not satisfy the household (or “unit of cohabitation”) eligibility requirement of one year. He explained, sitting at home in Puente de Vallecas, Madrid, after having collected food from the nearby Caritas social supermarket:

Caritas and the neighborhood groups have given us food. Madrid city council has helped us with food from time to time. It isn’t a regular thing, but it happens occasionally and is a lot of paperwork which takes two or three months to arrive, but, yes, we’ve had help in the form of a Carrefour [supermarket] card, or a basket of food. But the other sorts of social welfare support, like minimum vital income—when we try to access it, we come up against limitations every time. For example, if you’re not registered as resident in Madrid for a whole year, you can’t access the minimum vital income. We’ve been here for 15 months, but because my wife forms part of the family unit, and she has only had legal residence for a few months, we’re not eligible… We always find ourselves in a limbo. What sort of limbo do I mean? There’s always some requirement that leaves us out. […] Every time we ask for a social security support of this kind, we end up coming up against a roadblock that doesn’t let us pass.[108]

Manuela, 38, a Spanish woman, used to earn €570 a month working as a cleaner for a subcontractor providing maintenance services at a sports stadium but lost her job when the pandemic curtailed clients’ operations. She said the cleaning subcontractor considered the seasonal contract under which she was employed to have ended when spectator sports could no longer take place, and told her she would not receive ERTE furlough support. She was refused IMV and explained that it was because the social security authorities continued to treat the father of her children, from whom they were estranged, as a family unit. She spoke to Human Rights Watch while waiting for a fortnightly food distribution at Somos Tribu VK’s Palomeras Bajas neighborhood pantry in the Puente de Vallecas district of Madrid. At the time of the interview, she had no income beyond limited child maintenance payments from her former partner, and said that she depended on what she received at the pantry to feed her four children, aged between 3 and 15. Manuela said:

You feel it as a mother. It hurts. I feel like I am failing them. I brought them into the world to give them a good life, and I feel like I’m worth nothing. We all have a right to a dignified life. So many of us are living in poverty, more so in the pandemic. The poor just get poorer.[109]

The success and reach of the IMV program has been limited by delays in providing accurate information to potential beneficiaries about how IMV works, and a bureaucratic system that was overwhelmed by demand. Early in the pandemic, the country’s social security system was overwhelmed generally with requests—beyond IMV applications—and did not have sufficient appointments available to deal with standard requests like people entering retirement receiving their pension, and struggled to catch up with new applications for IMV. The prolonged closure of social security offices, followed by a gradual re-opening with strict limits on numbers of appointments per day, as part of the public health protection measures contributed to the backlog.[110]

A design flaw in the IMV program and its underpinning assessment logic also affected its effectiveness in tackling poverty during its first year and a half of operation. A key factor in deciding whether a person in 2020 was eligible for and in need of assistance was their income the year before, in this case in 2019, prior to the pandemic. People who had reasonable incomes before the pandemic, and had not previously been experiencing poverty, often had their applications for the IMV refused as a result. Legislation passed in December 2021 has begun to correct this flaw, allowing people to claim the IMV based on income in the year that the person is applying, but at this writing it remains unclear to what extent earlier miscalculations on eligibility will be recalculated.[111] In response to a request from Human Rights Watch asking for an explanation of when IMV eligibility would be delinked from earnings in the previous fiscal year, and what recourse people denied their IMV application on this basis, the Ministry for Inclusion, Social Security and Migrations simply stated that the modifications and reforms are in force, and offered no clarification on how past mistakes would be rectified.[112]

Anti-poverty campaigners have also criticized the IMV program’s level of support as not being adequate to meet the financial need of families with children generally, and single-parent families in particular.[113] In December 2021, Parliament approved amendments to the benefit levels for families and people with disabilities, including increasing child-related benefit payments under the IMV scheme by between €50 and €100 per month per child, depending on age.[114]

Following increases to levels of social security support effective January 2022, the IMV benefit ranges from between €491.63 for a single adult per month to €1081.59 for a household with two adults and three or more children, or one adult and four or more children.[115] The IMV also now includes modest additional supplements for single-parent families and households in which one of the residents has disability status certified by the state, in response to the concerns raised about the adequacy of earlier levels of IMV support to meet the needs of people in such households.

Although these increases are welcome, they are not likely to fundamentally alleviate poverty. The official National Statistics Institute estimated in July 2021 that the poverty threshold for a household with two adults and two children was €20,215.[116] By any measure even a household receiving the maximum level of IMV support (€1081.59 per month or €12,979 per year), even with the additional child related benefits would almost certainly fall well below that threshold.[117]

By the end of 2021, official figures showed that the system was catching up with the backlog in applications for IMV, but that the scope of coverage was still limited, and the exact figures remained unclear.[118]

The overall approach of the authorities—in Spain and within the autonomous communities in which research took place—has been well-intentioned and to some extent, the evidence shows that the IMV program is making a modest contribution to some low-income households, insofar as it is preventing (or delaying) a return to the levels of poverty and inequality at the depth of the financial crisis a decade ago. However, the approach is hampered by its own bureaucracy which has been overwhelmed by demand, onerous paperwork requirements for applicants, and flawed assumptions for eligibility calculation, among other problems.

Further, the IMV scheme epitomizes some of the flaws of Spain’s broader social security system: It continues to function on an inadequate level of support, which does not guarantee an adequate standard of living for recipients, and as a result of its eligibility criteria and calculation methods excludes some of the very people who need its assistance the most. In short, some of those experiencing poverty most sharply—despite the stated intentions of the government—continue to be denied their right to an adequate standard of living, including to be able to access and afford adequate, healthy food.

IV. Spain’s Legal Responsibilities

The human rights to food and social security are enshrined in international human rights treaties to which Spain is a party. Both are self-standing rights, and the right to food is also a key component of the right to an adequate standard of living.[119]

International Human Rights Law and Standards

The main UN treaty that contains these rights is the International Covenant on Economic, Social and Cultural Rights, (ICESCR), which Spain has ratified.[120]

The UN Committee on Economic, Social and Cultural Rights (CESCR)—the body of independent experts established to monitor the implementation by states of the ICESCR and to provide authoritative interpretation of the specific rights in the covenant—has also offered its guidance setting out what the “right to adequate food” and “the right to social security” mean within the ICESCR and clarifying what duties states have.[121]

The rights in the ICESCR, including both the rights to food and to social security, apply in full during a crisis, and the covenant does not make provision for states to derogate from the rights protected therein.[122] Rather a state’s obligations are to use its maximum available resources at all times to meet the protected socioeconomic rights, with an inherent recognition that crisis situations may have an impact on available resources. The explicit priority is to use those resources to ensure the widest possible enjoyment of the core minimum obligations, subject to a prohibition on discrimination.[123] The CESCR similarly underlined that “even in times of severe resources constraints the vulnerable members of society can and indeed must be protected by the adoption of relatively low-cost targeted programmes.”[124]

The Right to Food

According to the CESCR, the right to food:

is realized when every man, woman and child, alone or in community with others, have physical and economic access at all times to adequate food or means for its procurement. The right to adequate food shall therefore not be interpreted in a narrow or restrictive sense which equates it with a minimum package of calories, proteins and other specific nutrients. The right to adequate food will have to be realized progressively.[125]

The CESCR also sets out clearly how the right to food is inextricably linked to the broader requirement of states to eradicate poverty in order to ensure everyone can enjoy all their human rights:

[…] the right to adequate food is indivisibly linked to the inherent dignity of the human person and is indispensable for the fulfilment of other human rights enshrined in the International Bill of Human Rights. It is also inseparable from social justice, requiring the adoption of appropriate economic, environmental and social policies, at both the national and international levels, oriented to the eradication of poverty and the fulfilment of all human rights for all.[126]

The CESCR has noted that if any significant number of individuals in a state is deprived of essential foodstuffs, the government is, prima facie, failing to discharge its obligations under the covenant.^[127] With respect to potentially vulnerable populations including non-nationals, refugees, asylum seekers, and migrant workers the CESCR has underscored on multiple occasions that the rights in the covenant apply to everyone regardless of legal status and documentation.^[128] In particular with respect to the right to food, the committee has advised that “all children within a [s]tate, including those with an undocumented status, have a right to receive education and access to adequate food and affordable health care.”[129]

Measures to ensure adequate, nutritious food also form part of the right to health of children as set out in the UN Convention on the Rights of the Child (CRC).[130] Human rights law offers additional protections of the right to food for women and girls who are pregnant or breastfeeding (CEDAW) and people with disabilities (CRPD).[131]

The Right to Social Security

To fulfill the right to social security, the CESCR has said that states are required to meet a minimum level of protection for those who need it and then progressively realize universal coverage and adequate levels of benefits over time.[132] The immediate obligation to provide a minimum essential level of benefits means providing assistance to individuals and families to enable them to acquire at least essential health care and an adequate standard of living, including basic shelter and housing, water and sanitation, foodstuffs, and the most basic forms of education.[133] 

The CESCR has made clear that states must also ensure that women at least enjoy equal social protection coverage as men, requiring them to eliminate barriers that prevent women accessing equal benefits,[134] and should take steps “to ensure that the social security systems cover those persons working in the informal economy.”[135] The CESCR has also underlined that “refugees, stateless persons and asylum-seekers, and other disadvantaged and marginalized individuals and groups, should enjoy equal treatment in access to non-contributory social security schemes.”[136]

The CESCR has said that to realize the right to social security, states should give the right “sufficient recognition […] within the national political and legal systems, preferably by way of legislative implementation,” and develop a national strategy for the full implementation of the right to social security.[137]

Since 2013, when the Optional Protocol to the ICESCR entered force, individual petitioners have been able to take complaints against Spain to the CESCR, alleging that their rights have been violated, but to date none have centered on the right to food, the right to social security, or more broadly on the right to an adequate standard of living.[138]

The right to social security, including various forms of social protection, is also protected under other international human rights treaties to which Spain is a party, including the CRC (article 26), CEDAW (articles 11 and 14), and CRPD (article 28).

European Human Rights Law and Standards

The Council of Europe and European Union treaties—including the Revised European Social Charter, European Code of Social Security, and EU Charter of Fundamental Rights—contain specific obligations to guarantee “social security rights” or a “right to protection from poverty and social exclusion.”[139]

These principles have recently found expression in a renewed EU-wide commitment to strengthening the European Pillar of Social Rights at the Porto Social Summit, in May 2021, which Spain strongly supported.[140]

However, despite this recent stated commitment to social rights at European level, Spain has to date only formally accepted one of the three key relevant documents relating to the Council of Europe’s European Code of Social Security.[141] The European Code—modeled largely on the International Labour Organization’s Social Security (Minimum Standards) Convention, albeit with higher standards[142]—sets out requirements on various social security benefits (sickness, unemployment, pension, disability, family, maternity, widow/er status), allowing states to be more generous based on their national policy, and subjects signatory states to an annual monitoring process. Spain has not, however, signed either the 1964 Protocol to the European Code or the Revised 1990 Code, and lags behind its European comparators in incorporating regional standards into its domestic framework.[143] The Spanish government should also take steps to ensure it has signed and fully incorporated all aspects of the European Code of Social Security, as part of an effort to ensure that its domestic social security provision is in line with international minimum standards.

Domestic Constitutional Guarantees of Rights

The Spanish Constitution of 1978 includes affirmations of the right to social security, all rights of children under international law, adequate pensions and sufficient financial means for older people, with legislation in place to implement these promises.[144] The Constitution also commits to the equitable distribution of income and wealth.[145]

However, Article 53 of the Constitution currently accords these social and economic rights, found in Chapter Three, a lower protection than the “fundamental rights and liberties” (a mixture of civil and political rights and socio-economic rights) contained in Chapter Two, which are binding on public authorities. This leaves many social and economic rights less well protected by the domestic constitutional architecture.

The Constitution does not include a specific right to food, and domestic advocates and experts have campaigned during the past decade for a constitutional amendment guaranteeing the right to food, as part of an effort to tackle poverty.[146] As Juan Carlos García y Cebolla, Right to Food Team Leader at the Food and Agricultural Organization, has argued with specific reference to protecting the right in Spanish law, “This is not about the right to be fed, but about the right to feed oneself in dignity, and to think about policies that develop people’s capacity to support themselves and live in dignity […] If the right to food were folded into the Constitution, it would be much clearer for everyone, from judges, to civil servants to the general population.”[147]

In the context of the Covid-19 pandemic, NGOs like Caritas have developed their earlier work to advocate jointly on better protection of and respect for the right to food in Spain, as well as adequate levels of social security support and social assistance.[148]

Falling Short on Rights Obligations

Under human rights law the Spanish government and regional authorities in Spain have obligations to ensure that people are guaranteed an adequate standard of living, including through its social security system, and in particular can access adequate food. These rights not only as a matter of law apply during a crisis, including the Covid-19 pandemic, but are all the more essential during these times. As discussed above, the ICESCR does not allow for derogation, and no European state has sought to enter any derogations from their obligations under the European Social Charter.

Human Rights Watch finds that despite efforts to provide support, the Spanish state failed to protect people’s rights to food and an adequate standard of living during the pandemic. This failure was in part due to its failure to fix a flawed social security system which was uneven in coverage depending on region and type of benefit, and a largely absent national social assistance system (beyond non-contributory pensions nationally, and some limited regional social assistance programs) prior to the pandemic. As the country dealt with widespread office closures, administrative systems were backlogged and struggled to cope with new demand for social security assistance. As a result, people went without adequate social security support, in some cases for several months, and faced inevitable hunger as their money ran out. This happened despite the government’s efforts to accelerate the deployment of its flagship IMV promise as part of its set of policies to mitigate the economic impact of the pandemic.

A slow bureaucracy and high levels of refusal of IMV applications compounded the problem, as did confusion regarding how the national IMV scheme would interact with regional social assistance programs administered by the autonomous communities.

Despite its stated intentions, IMV, as it currently stands, runs the risk of being a social assistance program that offers too little, too late, and to too few. Without clear action, Spain will continue to fall short of its international obligations.

In a global context in which energy and food prices are rapidly increasing, the World Bank has recently warned governments particularly in “emerging markets and developing economies,” to take steps to ensure that they fund fiscal relief for vulnerable households through targeted social safety nets and enhance the resilience of food systems to mitigate for additional spikes in poverty and food insecurity.[149] The same lesson applies to what the World Bank terms “advanced economies” too, particularly those such as Spain that have seen a marked increase in poverty during the past two years.

To ensure a better and fairer outcome for the rights of people in Spain and to give them the economic resilience to weather future crises, the Spanish government must act boldly to make significant reforms to the IMV and social security support more generally, to encourage the sharing of good anti-poverty practice where it exists in autonomous communities, and to embed in domestic law protections for specific socioeconomic rights, including the right to an adequate standard of living and to food.

Acknowledgments

This report was researched and written by Kartik Raj, Researcher in the Europe and Central Asia Division. It was edited by Benjamin Ward, deputy director in the Europe and Central Asia division. Judith Sunderland, associate director, in the Europe and Central Asia division, provided additional review and editing. The report was reviewed by Hillary Margolis, senior researcher, and Ximena Casas, researcher, both in the Women’s Rights division; Elin Martínez, senior researcher, Children’s Rights Division; Bridget Sleap, senior researcher, rights of older people, and Karolina Kozik, assistant researcher, both in the Disability Rights Division; Lena Simet, senior researcher and advocate on poverty and inequality, Economic Justice and Rights Division; Bill Frelick, director, Refugee and Migrant Rights Division; Kyle Knight, senior researcher on health and human rights; and Brian Root, senior quantitative analyst in the Digital Investigations Lab. Aisling Reidy, senior legal advisor, and Tom Porteous, deputy Program director, provided legal and programmatic reviews. Dr Koldo Casla, School of Law and Human Rights Law Centre, University of Essex, also provided external review of portions of the text.

Production and administrative assistance was provided by Klara Funke and Marlene Auer, associates in the Europe and Central Asia division. Additional production assistance was provided by Travis Carr (photos and tables), Rafael Jimenez (cover), and Fitzroy Hepkins and José Martinez (printing). The report and associated materials were translated by Carlota Fluxá, and proofed and vetted by Claudia Nuñez, Spanish web editor.

The report’s author is grateful to Melanie Murphy, Lyndall Herman, and Danielle Lam, in the Safety and Security team, for their guidance on conducting in-person research and filming during the Covid-19 pandemic and their careful attention to the safety of staff, consultants and interviewees; and to Ifé Fatunase, Christina Curtis, Franki Jenkins, Nicole Martin, Omar Al-Fotihi, Laura Prieto Uribe, and Liliana Patterson, all in the Multimedia team, and Natasha Bowler, consultant producer, and Phil Caller, consultant cameraperson, for their work on audiovisual material to accompany this report.

Human Rights Watch would like to thank all the staff and volunteers of the frontline aid organizations who took the time to speak with us. In particular, the report author would like to express specific thanks to—in Madrid—Marimar at Somos Tribu VK and all the neighborhood-level Somos Tribu VK pantry organizers and participants, and the new set of Somos neighborhood organizations; Pablo García Marcos at Caritas Madrid’s Fourth Parish and the team at the economato solidario; Father José Manuel Horcajo and Paola Castillo at the Church of San Ramón Nonato, Puente de Vallecas; Carola and compañeras from the BAB-Colectivo in Lavapiés; Usman Camara, organic farmer; and Mohamed Fazle Elahi of the Asociación Valiente Bangla; and—in Barcelona—Mercè Darnell and Jordi Julià at Caritas Barcelona; Antoni Quintana at DISA Trinitat; and Joan Antoni Villar Ostos, from the Xarxa Verdum.

The report author is particularly grateful to Koldo Casla, School of Law, University of Essex, for his insights on socioeconomic rights protections in Spanish law and the gaps that exist currently, the generosity of his time in explaining key aspects of the country’s social security and social assistance systems at national and regional levels, and for reviewing portions of this report.

The report author is also grateful to Jordi Gascón, Department of Social Anthropology, University of Barcelona, and Tomaso Ferrando, Faculty of Law, University of Antwerp, for their insights on the Spanish food aid system and the use of right to food arguments respectively.

Human Rights Watch would like to thank players of People’s Postcode Lottery for their generous support of this project through the Postcode Justice Trust.

Human Rights Watch expresses its gratitude to all the people who agreed to be interviewed about their experiences of poverty during the pandemic and its impact on their rights, and in particular to those who went on after their interview to encourage others waiting in the food queues to speak with us.