Care and Support for Children with Disabilities within the Family Environment and its Gendered Dimensions

Human Rights Watch Submission to the United Nations Special Rapporteur on the Rights of Persons with Disabilities on Care and Support for Children with Disabilities within the Family Environment and its Gendered Dimensions

April 30, 2025

Human Rights Watch appreciates the opportunity to contribute to the special rapporteur’s report on care and support for children with disabilities within the family environment and its gendered dimensions that the special rapporteur will present to the United Nations General Assembly at its 80th session.

The information in this submission comes from Human Rights Watch’s research on:

1. The impact of societal and cultural norms on families, particularly mothers of children with disabilities in Canada, highlighting disability stigma as a barrier to support.
2. Challenges parents face in accessing services for children with disabilities in Kazakhstan.
3. Inadequate access to essential services, particularly to inclusive, quality education in Kazakhstan, respite care for mothers with disabilities in Canada, and personal assistant services in Uruguay and Armenia.
4. Caregiving responsibilities throughout the life course of a person with disabilities—from childhood to adulthood—and the challenges families face in providing necessary support in Mexico and Kazakhstan (where children with disabilities are transferred to adult institutions without their consent once they reach the age of majority, as is the case in Armenia, Brazil, and Serbia).
5. Inadequate consultation with and active participation of families and people with disabilities in care and support policies in Uruguay; and
6. The lack of alternative care models in Armenia, Brazil, Kazakhstan, and Serbia.

1. The Negative Impact of Societal and Cultural Norms on Families of Children with Disabilities, Especially Mothers

Canada: Mothers with disabilities of children with disabilities face gender norms and disability stigma

Women with disabilities who are mothers of children under 18, including those with disabilities, face unique and complex societal and cultural norms related to gender and disability that impact their well-being and rights as caregivers.[1]

In Canada, for example, current Human Rights Watch research indicates that all women, including women with disabilities, experience gendered expectations of care work. But disability stigma, which perpetuates the perception that people with disabilities are not capable caregivers, along with a lack of data on disability status and caregiving, combine to render the care work performed by women with disabilities even more invisible and unrecognized.

Stigma also increases the amount of care work demanded of mothers with disabilities and the toll that care work takes on their mental health. Human Rights Watch heard from women with disabilities about the work required to prepare their children (both those with and without disabilities) for the realities of disability stigma in their communities. For women with disabilities, seeing their children encounter similar ableist barriers in life was also a source of generational trauma.

Lack of disability accessibility and the presence of disability stigma at their children’s schools particularly added care work for mothers with disabilities. Women described having to fight for disability-related accommodations for their children and having to deal with significant challenges in supporting their children in the face of disability-related bullying.

Parents with disabilities encounter unique challenges when others fail to recognize them as equal adults, let alone capable parents. Women with invisible disabilities in particular reported facing judgment about their capacity to parent. For some, this meant facing added judgment at their children’s schools and/or having their input devalued instead of being treated with respect and as someone with specific insight into their child’s needs. In some cases, women with disabilities described losing custody of their children, which they attributed partly to the perception that people with disabilities are not able to raise children.

For racialized and Indigenous women with disabilities, fear of judgment about their capacity to parent presented a barrier to seeking care and support. Instead of accessing services, women reported relying on trusted family and friends.

Key recommendations

• Governments and service providers should create and fund care and support programs that explicitly recognize and address the needs of women with disabilities who are care providers, including tailored mental health services, respite care, and peer support networks.
• Schools, healthcare workers, and child welfare professionals should receive mandatory training on disability rights, disability stigma, and the intersecting forms of discrimination faced by women with disabilities, particularly those with invisible disabilities and/or from racialized or Indigenous communities.
• Governments should collect and analyze disaggregated data on disability status and caregiving to inform inclusive policies.
• Governments should ensure the creation and implementation of robust legal protections to prevent discrimination in child custody decisions.
• Governments should ensure access to services for parents with disabilities.

2. Limited or Unavailable and Inaccessible Early Identification, Intervention, and Development Services

Kazakhstan: Parents face challenges accessing services for children with disabilities

In Kazakhstan, parents interviewed for Human Rights Watch’s 2019 report on access to inclusive education in the country described the difficulties they faced in accessing accurate or complete information about their children’s disabilities from state medical and service providers under the health and education ministries, obtaining diagnoses of their children’s disability, and accessing quality services for their children.[2]

Parents described a lack of qualified services for their children with disabilities in smaller cities in Kazakhstan. Experts in Kazakhstan agreed that there were not enough specialists who could provide essential services to children with disabilities, including speech or massage therapists, developmental pediatricians, and psychologists, among others. One mother told Human Rights Watch that she sought services for her then-7-year-old daughter, who is blind, in Kostanay, a smaller city in northern Kazakhstan, but found none. “I asked at the hospital, the doctor said there are no services,” she said. “They suggested for us to go to a rehabilitation center in Astana,” which is 700 kilometers away.

In bigger cities such as Almaty or Astana, where services are available, some parents described long delays and bureaucratic procedures that hampered their child’s access to state-provided disability support services.

The Convention on the Rights of Persons with Disabilities (CRPD) requires states to provide adequate information to children with disabilities, their families, and their caregivers about the child’s disability, each child’s unique needs, and available resources. But parents interviewed for this Human Rights Watch 2019 report said they were unaware of essential information or had been misinformed about their child’s disability, did not know what resources were available to support their children’s disability, or felt as if they did not have access to information about supporting their children with disabilities.

One mother who gave birth to a son with Down’s syndrome in Kostanay told Human Rights Watch that she “didn’t have any information. I didn’t have any friends or know parents with these kinds of children. I searched out parents. I went to the library and read about Down’s syndrome. There was no information from the state, on how to raise him, or where to go for help.”

Key recommendations

• Governments should provide adequate information to children with disabilities, their families, and their caregivers about the child’s disability, each child’s unique needs, and available resources.
• Governments should ensure timely access to essential services for children with disabilities.

3. Inadequate Access to Essential Services: Inclusive Education, Personal Assistance, and Respite Care

Kazakhstan: Children with disabilities lack access to inclusive, quality education

Quality early childhood care and education, including pre-primary education, can particularly benefit children with disabilities, including by strengthening their capacity to benefit from education, promoting their enrollment and attendance, and reducing stigmatizing and discriminatory attitudes against them.[3]

The government of Kazakhstan has committed to ensuring that children with disabilities have access to inclusive, quality education.[4] Accordingly, it has ratified international human rights treaties enshrining the rights of people with disabilities, including the right of children with disabilities to inclusive, quality education.[5]

Research for Human Rights Watch’s 2019 report found that some children with disabilities attended mainstream schools, but many are segregated into special schools or separate classrooms or are enrolled in home education.[6] Such alternatives to mainstream schools are problematic. Children who go to special schools rarely have the chance to interact with children who are different from them and to learn important life skills in a real-world environment. They may also be isolated from their communities and separated from their families if the special school is far away or if they must live there. In addition, not all special schools provide a full secondary education, limiting the ability of enrolled students with disabilities to take university entrance exams, secure future employment, and live independently. Meanwhile, children with disabilities who receive long-term home education, which is not envisaged exclusively as a temporary measure in Kazakhstan, are denied a quality education (including sufficient hours of instruction), are automatically unable to access higher education due to the requirement that students attend an upper secondary or vocational school and get their diploma, and are isolated and separated from their peers and society more broadly.[7]

Since then, the government has introduced legal and policy changes toward an inclusive education system for children with disabilities. In June 2021, Kazakhstan adopted a new inclusive education law which removed multiple references to the Psychological-Medical-Pedagogical Consultation (PMPK), a body made up of doctors and education specialists who determine what kind of school a child with disabilities can attend, as a prerequisite for enrollment in a mainstream school.[8] This law also introduced new provisions that make it the state’s responsibility to provide reasonable accommodations to children with disabilities. However, article 15-1-5 of the Law on Social and Medical-Pedagogical Support for Children with Disabilities continues to specify that children with disabilities who attend “government education organizations” do so “in accordance with a PMPK conclusion.” “Government education organizations” include mainstream schools and kindergartens, special schools, and other types of educational facilities. This article appears inconsistent with amendments introduced in the June 2021 law.[9]

Despite the positive development of the June 2021 law, disability rights activists in Kazakhstan report that progress toward inclusive education in practice continues to be slow. In 2021, the government reported to UN bodies that of the 107,348 school age children with disabilities, a significant number of children with disabilities were educated at home (8,335 children), isolated from their peers and with teachers visiting only a few times per week or even per month; segregated in special classrooms or groups in mainstream schools (11,175 children); or enrolled in special schools for children with disabilities (14,989 children), which can be located far from their families and communities.[10] Children with disabilities living in residential institutions for children with disabilities receive very little to no education. Experts in Kazakhstan have told Human Rights Watch that many officials still do not understand how to implement inclusive, quality education or what it even means to transform the education system into one that is genuinely inclusive.

Key recommendations

• Governments should guarantee access to inclusive, quality education for children with disabilities on an equal basis with others in line with their international human rights legal obligations, which entails providing reasonable accommodations—including individual education plans, physically accessible school buildings, teachers trained to adapt to different learning abilities and styles—in a diverse student body.
• Legislatures should amend legislation to define “inclusive education” in a way that is consistent with the CRPD and the CRPD Committee’s General Comment No. 4 on the right to inclusive education, particularly by:
  • Including a provision that mainstream schools will provide children with disabilities quality education and reasonable accommodations and on an equal basis with others, including access to individualized support measures, physically accessible school buildings, and teachers trained to adapt to different learning abilities and styles; and
  • Making clear that everyone, regardless of disability, has the right to inclusive education and that this right cannot be denied based on a medical or other assessment by state bodies.
• The special rapporteur should express strong support for the current efforts at the UN Human Rights Council to consider and draft a new optional protocol to the Convention on the Rights of the Child aimed at recognizing the right to early childhood care and education and to free public pre-primary education for all children, beginning with at least one year.[11]

Canada: Mothers with disabilities lack access to disability-inclusive respite care, impacting their well-being

In Canada, women with disabilities reported needing support to address caregiver burnout and support for raising their children. Even where respite services were available, some women described a lack of disability-inclusive respite they could trust and thus did not use those services, leading to increased levels of caregiver burnout and other negative mental health impacts.[12]

Key recommendation

• Governments should invest in the development and expansion of respite care services that are accessible, inclusive, and tailored to the requirements of caregivers with disabilities, including by ensuring respite staff are trained on disability rights, as well as services’ physical and communication accessibility.

Uruguay: Restrictions on the Personal Assistants Program preclude some people with disabilities

In 2015, Uruguay became the first Latin American country to introduce a national integrated care system that includes programs benefiting people with disabilities.

Since 2015, Uruguay’s national care system has operated a Personal Assistants Program, which provides eligible people with disabilities with up to 80 hours per month to help with daily activities. This program is vital for many people with disabilities and is currently being expanded to include support for children in schools.[13] However, it has multiple limitations.[14]

One major eligibility restriction is age: individuals between the ages of 30 and 79 are not eligible to receive personal assistant services. Also, the type of support provided is primarily aimed at people with physical disabilities, which excludes many who require different forms of human support, such as those with intellectual, sensory, or psychosocial disabilities. As a result, most beneficiaries of the program are people with physical disabilities.[15]

The Personal Assistants Program also does not offer support that would enable people with disabilities to raise children. While Uruguay has a separate program that provides this type of support to women with disabilities, it excludes men with disabilities, reinforcing gendered expectations of women doing the bulk of unpaid care work, and impinging on the rights of men with disabilities providing care for their children, who should have access to these same services.[16]

Another important aspect to consider is the experience of people—particularly women—supporting relatives, including children, who have autism and who are unable to access personal assistance services due to the lack of professional training among personal assistants. The support required for people with autism goes beyond the basic training currently provided to personal assistants, which primarily focuses on physical disabilities. Thus, current training does not address other types of disabilities that require more intensive and specialized support, such as autism.

Armenia: Restrictions on personal assistant services exclude some people with disabilities

In August 2022, the Armenian government approved regulations on personal assistant services. The personal assistant program was piloted and then revised in 2024.[17] This program allows individuals with “severe or profound” mobility, vision, mental health, or intellectual disabilities to receive personal assistant services.[18]

However, the service provision is limited in scope. The program excludes children under 15 and people who are not working or studying. It also imposes restrictions on the number of hours people with disabilities can receive services (only up to 140 hours per month). While the introduction of personal assistant services for people with disabilities is a positive step, employment or education status restrictions excludes a significant part of the target population requiring support.[19]

Key recommendation

• Governments should have a care and support system that includes a broader range of human support models (not just personal assistants) as envisioned in article 19 of the CRPD, to meet the needs of people with different types of disabilities, including those that have more intense support requirements.

4. Challenges Related to the Evolution of Support Needs Throughout the Life Course, Including as Children Reach Adulthood and Older Age

Mexico: Families, not the state, are responsible for providing support to adult relatives with disabilities

Human Rights Watch’s research in Mexico has shown that the tendency to shift the responsibility to provide support services for independent living from the state to the families of people with disabilities is harmful for people with disabilities, including as they become adults.[20] Human Rights Watch documented that families who cared for children with disabilities but stopped providing support to their adult relatives with disabilities may even face criminal charges. Also, there is a significant gap in Mexico’s development of support services for adults with disabilities, which often leads to situations of family violence or neglect in the provision of care.[21]

Key recommendation

• Legislatures should ensure legislation creating a care and support system that avoids imposing the responsibility to support adults with disabilities exclusively on their family members, empowers people with disabilities to decide what support meets their individual requirements, and creates a system of supported decision-making.

Kazakhstan: Children transferred to adult institutions without consent

Research conducted for Human Rights Watch’s aforementioned 2019 report on Kazakhstan found that many young adults with disabilities living in residential institutions for children are automatically transferred to adult institutions upon turning 18, where they remain.[22] This is partly due to a lack of services to support young adults with disabilities to live independently and in the community. According to one human rights activist and disabilities rights expert in Kazakhstan who researches the treatment of children and young adults with intellectual and psychosocial disabilities, the vast majority of children transferred to adult institutions are deprived of their legal capacity, or the right to make decisions for themselves, without their knowledge.

Spending one’s childhood in an institution can have serious, long-lasting negative consequences for that person. Reflecting on her time in a children’s institution, one woman with disabilities, now in her 30s, said, “I wish they wouldn’t give shots or pills [in the institution]. I wish everything was good and fair. Sometimes it’s hard for me [still]. I sit at home and cry.”

Human Rights Watch found that it is very common for children with disabilities in institutions to be transferred to institutions for adults with disabilities upon reaching the age of majority. Human Rights Watch documented this in Armenia,[23] Brazil,[24] Croatia,[25] India,[26] and Serbia.[27]

Key recommendations

• Governments should prohibit the automatic transfer of children with disabilities in institutions to adult institutions upon reaching the age of majority.
• Governments should develop and fund community-based support services for people with disabilities that promote independent living in the community and ensure their smooth transition to adulthood.

• Governments should implement legal safeguards to protect the right to legal capacity and supported decision-making for young adults with disabilities, including by ensuring their access to supported decision-making mechanisms.

   

5. Inadequate Consultations with and Active Involvement of Families and People with Disabilities in Care and Support Policies

Lack of Involvement of Organizations of People with Disabilities in the Design and Implementation of the National Integrated Care System

Uruguay was the first Latin American country to introduce a national integrated care system in 2015 that includes programs benefiting persons with disabilities. Uruguay’s care system recognizes the right of care and support providers to receive support and recognition from the state and society, and also promotes the redistribution of care responsibilities among all social actors.[28]

While this was a groundbreaking achievement, Uruguay’s care system is not fully aligned with the CRPD, particularly regarding the state’s obligation to closely consult with and actively involve representative organizations on all matters affecting them.

A 2024 report by Human Rights Watch found that organizations of persons with disabilities had limited participation in the design, administration, and oversight of the system. The report identified several areas for improvement, including the need to reframe how people with disabilities and older people are characterized (the current law problematically conceptualizes them as people in a “situation of dependency”).[29]

The care system established an Advisory Committee that involves various sectors of civil society, including organizations of people with disabilities.[30] However, some of their leaders say that the groups’ level of influence on government policy has not been very significant.[31]

The care policy in Uruguay has been driven by the pro-care movement, a civil society collective focused on the critical need to recognize unpaid care work, which is largely done by women, and the disproportionate impact this has on their rights.[32] However, people with disabilities were not part of this movement. A representative of the pro-care movement said organizations of people with disabilities did not participate actively in the design of the care system.[33] 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.[34] Leaders working with organizations of people with disabilities noted that no formal space was created for the participation of these organizations when the system was created.[35]

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 care agenda globally do not align with the philosophy and values of people with disabilities’ independent living movement.[36] From their perspective, a personal assistant should be recognized not merely as a care worker, but also as someone with a responsibility to enable the exercise of rights of people with disabilities. For example, they may be needed to enable a person with a disability to live independently in the community and fully exercise their rights under the CRPD. They are concerned that the current design of Uruguay’s system leans too heavily toward a medical approach.[37]

Furthermore, people with disabilities were not included in designing the basic dependency care course, offered by the National Institute of Employment and Vocational Training (INEFOP), that personal assistants must complete, according to an INEFOP official.[38] She 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.[39]

Finally, people with autism were also excluded. Five members of the Autism Federation of Uruguay said they did not have the opportunity to participate directly 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.[40]

Key recommendations

• Governments should proactively consult and actively engage organizations of people with disabilities in the design, implementation, and monitoring of programs and policies—especially those supporting the right to independent living—in line with international human rights law, standards, and principles. These organizations should also be allowed to participate directly in the administration and oversight of any care and support system.
• Based on General Comment No. 7 of the Committee on the Rights of Persons with Disabilities, governments should develop guidelines and frameworks to ensure the close participation of organizations of people with disabilities in public policies that affect people with disabilities.

6. Lack of Alternative Care Models to Institutionalization

The institutionalization of children with disabilities can seriously harm and have significant long-term, life-long effects on their physical, cognitive, and emotional abilities and development, according to research by UNICEF and others. Unfortunately, the number of children living in institutions worldwide ranges from 2 million to 8 million.[41] Importantly, these figures are often considered underestimates due to the lack of data from many countries and the high number of unregistered institutions.[42]

Families of children with disabilities place these children in institutions for a variety of reasons. Professionals have often encouraged and advised parents to do so, claiming that institutions will provide the most effective care. In other cases, there is a lack of accessible community services to support children with disabilities and their families that would allow families to care for these children at home.[43] While governments have an obligation to provide alternative care when a child is deprived of their family environment, long-term institutional care is never a suitable substitute for family-based care, regardless of the child’s disability status. Even the best-resourced institutions cannot replace the nurturing, stability, and emotional connection that families provide.

In Armenia,[44] Brazil,[45] and Serbia,[46] Human Rights Watch’s research found a lack of alternative programs to prevent the institutionalization of children with disabilities.

Brazil: Biological, foster, and adoptive families lack support to raise children at home 

In Brazil, some civil society initiatives—in coordination with the federal, state, and municipal authorities—have been developed to create foster care programs. However, Human Rights Watch found that these programs are poorly equipped to support children with disabilities.[47] Instead, a significant percentage of children with disabilities live in institutions and grow into adulthood without ever being able to leave them.

Institution managers, disability rights advocates, and parents in Brazil told Human Rights Watch that for some families of children with disabilities, the lack of sufficient government support and accessible services for parents to raise their children at home factored into their decision to place their child in an institution, sometimes indefinitely.[48] Human Rights Watch also documented some cases in which foster or adoptive families returned children to institutions because they lacked sufficient services to support them in raising the child. Children with disabilities and their families need services such as inclusive, quality education in neighborhood schools, accessible day care centers, accessible transportation, medical care and relevant therapies, and financial support to help the families meet the specific needs of the child with a disability.[49]

Despite policies that provide higher subsidies for foster or adoptive families who take in children with disabilities, these incentives are often insufficient. [50]

In Armenia, biological families lack support to raise children at home, and there is no comprehensive plan for deinstitutionalization. A 2017 Human Rights Watch report found that in Armenia, most children in orphanages and other residential facilities end up there because they have disabilities or their families face poverty and other vulnerabilities that make it difficult to care for them. In fact, 90 percent of children in residential care in Armenia have at least one living parent.[51] The limited availability of daycare for children with disabilities in the community contributes to this figure, as working parents, especially those working unconventional hours, are often forced to place their children in specialized institutions to continue working.[52]

Despite this, alternative care services in Armenia—such as kinship placement, foster care, and adoption—remain underdeveloped. In recent years, however, there have been significant changes in Armenia’s foster care system, whose legal framework has improved substantially. The foster care law was revised in 2017 to eliminate the previous requirement that in order to place a child in foster care or make them eligible for adoption, the parents had to relinquish their parental rights. Under Armenia’s current law, provided it is in the best interests of the child, biological families (except those who have been legally deprived of their parental rights) have both the right and the obligation to maintain contact with the child.[53]

Armenia has also introduced different types of foster care, including professional foster families, crisis foster families, holiday foster families, and regular foster families.[54]

However, there are numerous implementation challenges, particularly in monitoring a child with disabilities in an alternative care system. Currently, there is no comprehensive process for adequately monitoring the child’s trajectory in the alternative care system or once they are returned to their biological family. Other persistent issues include the need for evaluations of the quality of care, training for foster families, and funding shortfalls.

Significant barriers remain to fostering children with disabilities, particularly due to the unavailability of specialized services for children with disabilities. While foster families do receive financial support, this does not cover the full range of services required by children with disabilities. As a result, foster families who might consider adopting a child with a disability face the same challenges as before. Additionally, children under the age of 15 are unable to access a personal assistant.

Experts and officials have consistently acknowledged that the current system especially disadvantages children with disabilities. Armenia has put little emphasis on identifying alternative care solutions for them, and since foster and adoptive families often prefer children without disabilities, this is likely to push children into institutions. On the institutional side, orphanage staff have expressed skepticism about the feasibility of placing children with disabilities in family-based care. Still, some officials recognize the importance of placing children directly into foster families rather than institutions to avoid unnecessary trauma.

Another serious concern raised in the 2017 report was the Armenian government’s approach to deinstitutionalization. The Armenian authorities have not introduced comprehensive plans to relocate children with disabilities from state institutions to family-like settings.[55] According to the government’s data, in 2023, 492 children with disabilities continued living in state and private orphanages.[56] In 2023 alone, 77 children were placed in orphanages, with 29 of them moving between institutions. In cases when authorities moved children out of institutions, they did so often without first establishing adequate community-based services for children with disabilities. This increases the risk of segregation—such as exclusion from inclusive education—and re-institutionalization, both of which can significantly harm a child’s mental health and overall well-being.[57]

The lack of community-based services creates a dangerous gap. Human Rights Watch found that in many cases, rehabilitation and other essential services for children with disabilities were only available in institutions, not through accessible, community-based systems.[58]

Families often feel forced to institutionalize their children in the absence of support

Families of children with disabilities often face enormous challenges that can push them toward the heartbreaking decision to institutionalize their children. Human Rights Watch spoke to parents in Armenia, Brazil, Serbia, and Russia who made this choice believing that institutions could offer better care or quality of life for their child with a disability.

In Brazil, one mother placed her then 15-year-old son in an institution because she no longer had the physical strength to care for him at home. The son lived with progressive muscular dystrophy, a condition that causes increasing muscle weakness.[59]

In Armenia, Human Rights Watch spoke with families living in deep poverty who could not provide even the most basic services for their children with disabilities and thus felt compelled to place them in institutions.[60]

In Serbia, Human Rights Watch’s research for a 2016 report found that medical and health professionals sometimes pressured families to institutionalize their children with disabilities, yet another factor that undermines family-based care and support.[61] We found the same pattern in Russia, where medical and health professionals also discourage families from raising children with disabilities and instead pressure them to place their children with disabilities in an institution.[62]

In addition, Human Rights Watch found that children who were deemed to be “severely disabled” were left out of deinstitutionalization efforts in Serbia, with government officials claiming their needs could not be addressed in a community setting.[63] Keeping children with high-support needs in institutions instead of placing them in a family-based environment discriminates against children with multiple disabilities. This practice could also lead to significant numbers of children with high-support needs spending the rest of their lives in institutions.[64]

Kazakhstan: Institutionalized children with mental health conditions and developmental disabilities face abuse

In Kazakhstan, residential institutions for children with psychosocial disabilities are known as Special Social Service Centers for Children. In December 2021, the government of Kazakhstan reported to UN bodies that approximately 2,000 children live at “16 social service centers for children with neuropsychiatric conditions.” Kazakhstan has no national plan to close these residential institutions.

Under Kazakhstan law, “every child has the right to live and be raised in their family, the right to know their parents, the right to their care, and the right to live with them, except when it is contrary to their interests.” However, Human Rights Watch’s research for a 2019 report found that children with disabilities in residential institutions faced violence, neglect, physical restraint, and overmedication.[65]

Children and young adults who grew up in closed institutions for children with disabilities reported that staff beat them and forcibly administered sedatives to punish or control them. Staff confirmed that they use psychotropic drugs to sedate children and have sent children to psychiatric hospitals for behavior such as screaming, shouting, or refusing to follow staff directions. The sedatives put children to sleep, sometimes for up to 24 hours. In one institution, Human Rights Watch saw a young girl in physical restraints, with her arms fixed around her torso, enclosed in a pink cloth with the sleeves tied behind her back, like a strait jacket.

Human Rights Watch also found that staff forced children to work, including by mopping floors or feeding, bathing, and changing younger children’s diapers.

In all three children’s institutions that Human Rights Watch visited, children faced neglect. Up to 16 children were kept in rooms together, with only a few caregivers. Some children, typically those who cannot walk or talk, were confined almost continuously to cribs or beds.

Reports of abuse in closed institutions for children with disabilities persist. In May 2020, 4 children living in a residential institution in eastern Kazakhstan died and 16 others were hospitalized with measles and intestinal infections.[66] In September and October 2022, several caregivers in Aktobe were convicted and sentenced to up to four-and-a-half years of restricted freedom after courts found them guilty of “torment” (article 110 of the Criminal Code).[67] They had been caught on video beating the children in the institution where they worked. In August 2023, 14 children in a state residential institution in Karaganda were hospitalized with poisoning and 2 of those children died.[68]

Key recommendations

• Governments should establish a time-bound plan to end the use of closed residential institutions for children with disabilities and create and implement programs to prepare children with disabilities to leave institutions.
• Governments should ensure that children are only placed in a residential institution under the supervision of an independent judicial body, in emergency cases or to prevent the separation of siblings, and for a time-bound duration, with the ultimate goal being planned family reunification or placement in family-based alternative care for the child.
• Governments should develop emergency family foster care programs, in particular for infants and young children, as alternatives to placement in residential institutions.
• Governments should promote and strengthen alternative care and support programs for children, including by ensuring adequate material, financial, psychological, and other supports to all families (biological, foster, and adoptive) following the placement of a child in the family to ensure an effective transition and to limit the risk of children being returned to institutions.
• Governments should establish and maintain a range of targeted, accessible, diversified community-based services for families in difficult situations as well as for individuals with disabilities, including children with disabilities and their families, to prevent institutionalization and to support families to raise their children at home.