Kazakhstan is prioritizing investments in the development of education as a key aspect for developing a strong human capital. However, children with disabilities are left behind in those efforts.
--Catalina Devandas Aguilar, UN Special Rapporteur on the Right of Persons with Disabilities, September 2017
Until she was 12 years old, Akbota studied at a mainstream school located across the street from her house in Almaty, Kazakhstan. At the end of her fifth-grade year, Akbota was diagnosed with progressive forms of arthritis, which affected her mobility. Akbota was very weak and spent much of her 6th grade year in hospital, so her doctor and an expert commission, known as the Psychological-Medical-Pedagogical Consultation (PMPK), determined she should receive education at home rather than return to school. But even after she no longer needed hospitalization, and despite the school’s proximity to her home, neither the PMPK, nor officials at her school sought ways for her to attend classes. Instead, each year until she graduated, Akbota continued to be educated at home. This isolated her from her classmates and her community.
Akbota, now 25, told Human Rights Watch about how after she was switched to home education, she fell behind in her education and missed being in the classroom, and that affected her prospects for future study:
I [started] home education in the 6th grade. It’s really different. You learn a lot less. My progress lagged. … My teachers rarely, rarely came. Once in three months, for one day. Then they came again after another three months. Every year I hoped I could go back to attending school… I felt how much I was missing out. …I can study, but they didn’t give me a chance. After the 11th grade, I didn’t pass my exams. So, I didn’t immediately go to university.
Instead, Akbota pursued her talent for painting, and has won an award and exhibited her art. But after several years, Akbota decided she wanted a career as a teacher and to go to university to obtain a teaching degree. In 2017, she enrolled in a university preparatory course.
Now I’m enrolled in a preparatory class for university. It’s great. I love it. Now I’m in class. [Before] it was always distance learning. In front of a laptop. This is much better than learning remotely. It’s energizing and puts you in a good mood to study with others. I like it a hundred times more than distance studying. There is no comparison.
Only a small percentage of school-aged children with disabilities in Kazakhstan get a quality, inclusive education in a mainstream school. The majority of children with disabilities, like Akbota, are educated at home, isolated from their peers with visits from teachers only a few times a week or month; segregated in special classrooms in mainstream schools; or attend special schools for children with disabilities, which can be located far from their families and communities. Children with disabilities living in psychiatric-neurological institutions receive very little or no education at all.
The government of Kazakhstan has committed to ensuring that children with disabilities have access to inclusive education and it has taken the important step of ratifying international human rights treaties enshrining the rights of people with disabilities, including the right of children with disabilities to inclusive, quality education. The government has also introduced legal and policy changes toward an inclusive education system for children with disabilities. It has committed to ensuring that 70 percent of mainstream schools are inclusive by 2019.
However, this report finds that progress towards genuine inclusive education is slow. In order for the government to succeed in ensuring that all children can access an inclusive, quality, and free primary and secondary education on an equal basis with others in the communities in which they live, it will need to fundamentally transform its policies and approach to education and address negative attitudes more broadly towards people with disabilities in Kazakhstan. In particular, the Kazakh government should ensure reasonable accommodations to facilitate children’s effective education and allow them to achieve their full potential.
The report is based on over 150 interviews with children and young adults with disabilities, their families, and disability rights activists, in multiple cities in Kazakhstan: Almaty, Astana, Kostanay, Kyzylorda, Shymkent, and Taldikorgan. Human Rights Watch researchers visited one PMPK office, five inclusive schools, and four special schools in Almaty and one inclusive school in Kyzylorda. Human Rights Watch also visited three neurological-psychiatric institutions for children in Almaty, Karaganda, and Shymkent. Human Rights Watch met and corresponded with officials from the Ministry of Labor and Social Protection and exchanged letters with the Ministries of Education and Health, and with the Almaty City Administration.
Human Rights Watch’s research found that some children with disabilities attend mainstream schools, but many children with disabilities are segregated into special schools or separate classrooms, or are enrolled in home education. Schools that the government considers “inclusive” in several of Kazakhstan’s cities at the time of this research only educate children with disabilities in primary and lower secondary school, although it is envisaged they will include children in higher grades starting in the 2019-2020 academic year. Nor do they provide reasonable accommodations for all children. In Kazakhstan, year one of school (grade zero), primary, lower and upper secondary are compulsory and provided to students for free.
PMPKs are currently a key barrier to children with disabilities studying in mainstream schools. PMPK commissions, organized under local departments of education or the Ministry of Education and Science, are typically made up of doctors, a speech therapist, psychologist, and other specialists, who assess children with disabilities and issue a conclusion with a recommendation as to whether a child should study in a mainstream school or in a special school for children with disabilities, or at home, as well as the types of rehabilitation and support services to which the child is entitled.
Kazakhstan’s approach to educating children with disabilities focuses heavily on a medical approach to disability. The PMPK’s conclusion is a de facto determination whether a child is allowed to enroll or continue in a mainstream school or not. This is fundamentally at odds with Kazakhstan’s obligation to guarantee children with disabilities’ right to education on an equal basis with others without discrimination. A student’s educational program and decisions on what reasonable accommodations to provide should not depend upon a highly medicalized evaluation.
Children with disabilities, parents, and activists Human Rights Watch interviewed for this report described various barriers children with disabilities face accessing a quality education in mainstream schools on an equal basis with others. Barriers include inaccessible buildings, classrooms, and toilets; a lack of trained and qualified staff to teach children with diverse learning needs; or the lack of aides and other reasonable accommodations for children with disabilities.
Parents and children also described some situations in which children were denied access to mainstream schools on grounds other than the child did not have a PMPK recommendation for a mainstream school. They described how some schools refused admission to children with disabilities simply stating that a child would be unable to learn or cited the lack of specialists to support children with disabilities in school. In other cases, school officials made discriminatory assumptions such as that children with disabilities would engage in disruptive behavior and distract other children from learning.
The Kazakh education system includes special schools designated for children with particular types of disabilities. Under Kazakh law, parents have a choice whether to send their child to a mainstream or a special school. However, Human Rights Watch interviewed parents who said they enrolled their children in special schools because they did not feel their children would get the support they needed in a mainstream school, or because PMPK commissions determined their child should attend special schools. While some children with disabilities and their parents may choose enrollment in special schools, the choice should be meaningful and not a result of obstacles to inclusive education in local schools.
Human Rights Watch also found that some special schools do not provide a quality education because of a lack of physical accessibility, accessible materials, or teacher training. For some families, particularly those living in rural areas, sending a child to a special school means traveling long distances or requires a child to live at the school full time or during the school week. This results in children’s separation from their families and communities. In addition, at time of writing, not all special schools provided children with full secondary education, limiting children’s ability to take university entrance exams, impeding their prospects for future employment and independent living.
Kazakh law also allows children to receive education at home, whereby teachers visit and carry out instruction at the child’s home. Parents interviewed for this report whose children received education at home described how their children received instruction on average for eight to 10 hours a week. Education at home is not envisioned exclusively as a temporary measure. Children with disabilities who receive long-term home education may be denied a quality education, may be unable to access vocational or higher education, and are isolated and separated from their peers, classmates, and society more broadly. Home education can have a serious impact on a child’s future education and work prospects.
Young people with disabilities and their parents described to Human Rights Watch how the lack of adequate preparation in home education and special schools negatively affected their prospects for higher education. Young people and other experts interviewed by Human Rights Watch also described discriminatory barriers to higher education such as lack of infrastructure and other reasonable accommodations.
Human Rights Watch also documented how parents who tried to enroll their children in preprimary education similarly faced barriers to inclusive education. Preprimary school plays a key role in early identification and intervention in cases of children with disabilities. Although Kazakh law specifies that parents have the choice to enroll their child in a mainstream or special kindergarten (preprimary school), Human Rights Watch documented how in practice some mainstream kindergartens denied enrollment to children with disabilities.
The Kazakh government has acknowledged the importance of early childhood intervention in ensuring the rights of children with disabilities to inclusive education. Yet parents interviewed for this report described difficulties getting accurate or complete information about their children’s disabilities from state medical and service providers, problems with diagnosing their children’s disability, and challenges accessing quality early intervention and other support services. Parents felt these obstacles set their children at a disadvantage in succeeding in school. The United Nations Committee on the Rights of Persons with Disabilities has noted that, “if identified and supported early, young children with disabilities are more likely to transit smoothly into preprimary and primary inclusive education settings.”
The Convention on the Rights of Persons with Disabilities (CRPD) requires the government to provide reasonable accommodations, or the “necessary and appropriate modification and adjustments, not imposing a disproportionate or undue burden, where needed in a particular case,” to ensure people with disabilities enjoy all human rights and freedoms on an equal basis with others, throughout all education levels. The denial of reasonable accommodations constitutes discrimination.
The Kazakh government should:
- Guarantee that persons with disabilities can access quality inclusive education in the communities where they live, on an equal basis with others, including through the provision of reasonable accommodations. This should include children and adults with intellectual, developmental, and psychosocial disabilities;
- Ensure that the aim in developing inclusive education is to achieve maximum inclusion in mainstream schools and avoid exclusion, such as through the segregation of children with disabilities in special schools, separate classrooms, and in home education;
- Make clear in law that that there is no legal requirement for a child to have a PMPK conclusion in order to attend mainstream school;
- Ensure, and enforce through legal provisions, that PMPK assessments are solely for the purpose of determining the reasonable accommodations a child will receive in inclusive education. The assessment should involve individuals who are knowledgeable about a child’s abilities and the types of accommodations that may meet the child’s needs;
- Continue to develop standards and professional training guidelines on inclusive education and ensure they promote a teaching culture that moves away from a one-size-fits-all approach to education towards one that can adapt to different and diverse learning abilities and styles;
- Work to ensure the availability of an adequate number of properly trained teachers and other professionals, such as psychologists, speech therapists, and special teachers, as well as aides for students where appropriate;
- Establish programs, in collaboration with disabled persons’ organizations, that aim to develop and embed a culture of inclusive education in schools and in the community. Such programs should involve parents and might include joint classes on disability awareness for children with and without disabilities and other joint activities.
Kazakhstan’s international partners should urge the Kazakh government to ensure the right to inclusive, quality education for children with disabilities, and support the government in its efforts to do so, including through financial and technical means, and by sharing best practices.
Human Rights Watch visited one mainstream school with an inclusive education program in Kyzylorda.
The Ministry of Labor and Social Protection assisted Human Rights Watch in acquiring permission from local city administrations in Almaty, Karaganda, and Shymkent to visit psychiatric-neurological institutions for children in those cities. In November and December 2018, Human Rights Watch carried out visits to the three institutions independently and at a day and time of our own choosing.
Human Rights Watch informed all interviewees of the purpose of the interview in age-appropriate terms, and that the interviews were voluntary. Participants gave oral informed consent to participate.
Unless otherwise noted, children, young people, and their families have been designated pseudonyms in the report, in order to protect their privacy. In some cases, the testimony from experts and teachers have also been anonymized.
At the outset of conducting the research, and again in October 2018, Human Rights Watch met with representatives from the Ministry of Labor and Social Protection. Human Rights Watch also requested meetings with the Ministry of Education and Science and the Ministry of Health at the outset of conducting research for this report but did not receive a positive response from either ministry.
In October 2018, Human Rights Watch sent letters to the Ministry of Labor and Social Protection, the Ministry of Education and Science, and the Ministry of Health, requesting responses to specific questions on our findings. In November 2018, we received written responses from the Ministries of Labor and Social Protection and of Health. Relevant sections of this correspondence have been included in this report. The Ministry of Education and Science did not respond to our letter.
Human Rights Watch interviewed staff from the United Nations Children’s Emergency Fund (UNICEF), Open Society Foundation-Kazakhstan, and Prison Reform International, and reviewed relevant government policies and laws, and reports from United Nations (UN) agencies and treaty bodies.
Interviews were conducted in Russian by Human Rights Watch researchers fluent in Russian and English. Several interviews were conducted in Kazakh and translated into English, with the assistance of a translator.
In line with international law, the term “child” as used in this report refers to a person under the age of 18; “young person” refers to people between the ages of 18 and 35.
“Inclusive education” is the practice of educating children with disabilities in mainstream schools in their neighborhood with the provision of supplementary aids and services, known as reasonable accommodations, where necessary. Inclusive education is a fundamental right of all learners. It has been acknowledged by experts as the most appropriate means for governments to guarantee universality and nondiscrimination in the right to education. In addition, inclusive education is a prerequisite for full inclusion and participation of people with disabilities in the community, and for countering their isolation and segregation.
Development of Inclusive Education in Kazakhstan
Kazakhstan’s 2016-2019 State Program for the Development of Education and Science is the most recent articulation of Kazakhstan’s near-term plans regarding inclusive education. In the program, the government has committed to ensuring that by 2019, 30 percent of preschools, 70 percent of mainstream schools, and 40 percent of technical and professional schools are inclusive for children and adults with “particular learning needs.”
According to the most recent publicly available government figures, 3,289 out of 7,339 mainstream schools in Kazakhstan, or nearly 45 percent, have “created conditions for inclusive education,” and over 40,000 school-aged children were enrolled in such schools during the 2016-2017 academic school year. Citing the Action Plan for the Implementation of the 2016-2019 State Program for the Development of Education and Science, the Ministry of Labor and Social Protection informed Human Rights Watch that as of November 2018, “the conditions of inclusive education have been created in 15% of kindergartens, 58% schools, and 25% colleges.”
The government has not made public how it defines “conditions for inclusive education,” nor the number of children with disabilities who attend these inclusive schools, and with which types of disabilities. When Human Rights Watch asked an Almaty City Department of Education official what constitutes “conditions for inclusive education,” she answered:
“Foremost, it’s the educators. In each school, there is a caregiver, a special education teacher, a psychologist, and a speech therapist.”
Inclusive Education Initiatives
Over the years, various inclusive education initiatives for children with disabilities in some cities in Kazakhstan have been underway. Since 1999, some children with physical disabilities who use wheelchairs have studied at school No. 13 in Petropavlovsk. In 2010, School-Gymnasium No. 65 in Astana began to implement a more inclusive approach to education, and by 2018, 96 students with disabilities had enrolled in the school. School No. 27 in Karaganda in 2012 initiated the inclusive education program “Adaptive school, School for All.” The same year, children with disabilities enrolled in a class in School No. 19 in Kokshetau. Various other inclusive education initiatives or pilot programs are currently underway in Almaty, Stepnogorsk, Ust-Kamenogorsk, Aktobe, and Astana, including with support provided from private foundations.
In August 2017, the Almaty City Department of Education initiated an inclusive education pilot program in each of Almaty’s eight school districts, grades one to nine. The Department of Education provided each of the designated schools with four education specialists, including a speech therapist and a psychologist, and the schools were outfitted with resource rooms, or separate rooms with additional learning materials where specialists can work individually and in groups with children with disabilities, funded by private foundations. Some children are also provided aides, to assist them in school. Each school initially accepted between six and eight children with disabilities, predominantly children with learning disabilities, and with rare exception, children with Down’s syndrome. The city continued to expand the number of inclusive schools, and as of the 2018-2019 academic year, 135 schools in Almaty have been designated “inclusive.”
As described in more detail below, a relatively small number of children with disabilities are enrolled in these schools. Out of a total of over 7,000 children enrolled in the five mainstream inclusive schools in Almaty that Human Rights Watch visited in December 2018, only 68 children were classified as having “particular educational needs,” which amounts to less than one percent of the total student body. Furthermore, not all children with “particular educational needs” are children with disabilities, so that percentage is even lower than one percent.
The Almaty City Department of Education reported that, in 2018, a total of 288 children with disabilities are enrolled in mainstream schools in Almaty. It did not specify the types of disabilities.
II. The Role of Psychological-Medical-Pedagogical Consultations in Education
They don’t look at the child as a whole person. They only look at the disability.
- Polina, about the PMPK’s assessment of her five-year-old daughter with Down’s syndrome
PMPKs are commissions central to the Kazakh government’s education system for children with “particular educational needs,” which includes children with disabilities. According to Kazakh law, PMPKs conduct medical and pedagogical assessments of children with disabilities and issue a conclusion with a recommendation about a child’s education, namely whether the child will study in mainstream or special school, and whether they will study at school or in home education.
PMPK commissions function in cities and towns across Kazakhstan and usually consist of eight experts: four educational specialists and four doctors. PMPKs also assess children with disabilities to determine a child’s access to state rehabilitation and other services. A network of Psychological-Pedagogical Corrective Offices (KPPK) provide the services identified by the PMPK. There are 58 PMPKs and 149 KPPKs in Kazakhstan.
Under Kazakh law, the exact authority of the PMPK in determining a child’s access to education is unclear. On the one hand, Kazakh law provides that a PMPK assessment concludes only in a recommendation on the education path for a child. Rules regulating PMPKs suggest that the PMPK conclusion on the child’s eligibility is not definitive: the conclusion will include a “recommendation on the education conditions” (emphasis added) for a child.” This position was reiterated by staff of the Almaty Department of Education and staff at PMPK No. 6 in Almaty during interviews with Human Rights Watch in December 2018.
However, the same rules regulating the PMPK also state that “the basis for sending children with particular learning needs to special organizations [special schools] and educational organizations [mainstream schools] is the PMPK conclusion.” In addition, the Law on Social and Medical-Pedagogical Support for Children with Disabilities stipulates that the way children with disabilities access mainstream kindergarten (preprimary) and mainstream schools is with a PMPK conclusion.
Human Rights Watch research found that in practice, the PMPK conclusion is frequently treated as a definitive determination of whether a child can enroll in a mainstream school. According to parents and experts in Kazakhstan interviewed for this report, many mainstream school administrators required parents to provide them a PMPK conclusion before they agreed to enroll the child. Based on information on enrollment provided to Human Rights Watch by directors of five mainstream inclusive schools in Almaty that Human Rights Watch visited while conducting research for this report, no children diagnosed with disabilities were enrolled in those schools without a PMPK conclusion.
When Dina first tried to enroll her son with autism in school in Kostanay, officials demanded to see his PMPK assessment. “At the school, they said, we will not take him. So actually, it’s not a recommendation from the PMPK, but a verdict,” Dina said. Aigul Shakibaeva, a human rights activist who consults parents of children with disabilities, told Human Rights Watch: “The education system as a whole is built on the PMPK. A child [with disabilities] can’t go to school without an assessment from the PMPK.”
In addition, despite the central and critical role the PMPK decision has for a child’s educational path, and thus, his or her future, parents described the PMPK’s assessments of their children as rushed, hostile, and sometimes superficial. Nadiya, whose 14-year-old son has been diagnosed with schizophrenia, described the PMPK as a place that “brings you to tears.” Human Rights Watch is not aware of any way to formally appeal a PMPK conclusion, but in several cases where the PMPK denied children the right to attend mainstream education, parents successfully pushed back against the PMPK assessment.
The Kazakh government is currently working to expand the network of PMPKs in Kazakhstan. Doing so could help to address concerns described below related to the problematic conditions of assessment, but will not address the more fundamental issue that PMPK commissions currently serve as a barrier for many children to access inclusive education.
Instead, the government should, as a matter of urgency, commit to transforming the institution of the PMPK. In line with Kazakhstan’s commitments under the CRPD, children with disabilities should have access to mainstream schools, with reasonable accommodations as necessary, to facilitate their inclusive education. Given the network of PMPKs that is already established across Kazakhstan, the institute of the PMPK could be transformed into a body tasked with determining reasonable accommodations for a child, provided the commission does so in a wholistic way; in particular, by inviting individuals who are knowledgeable about a child’s abilities (parents, other relatives familiar with the child, teachers, other school staff) and the types of accommodations that may meet the child’s needs.
In conducting an assessment, the PMPK commission may review medical records from doctors and other professionals, but equally or more importantly, should consider observations, experiences, student work samples, teacher or preprimary teacher evaluations, and the like, to understand the student’s abilities, strengths, needs, behaviors, and achievements. Those involved should bring and share any information they believe best describes the student’s abilities and needs.
Ultimately, for Kazakhstan’s education system to be considered genuinely inclusive, the choice of what kind of school to attend should be an individual one, and not based on a PMPK conclusion or the result of other obstacles to inclusive education in local schools.
Denying Children Access to Mainstream Education
PMPKs that carried out assessments of children whose families were interviewed in this report, in particular in Almaty, Astana, Kostanay, Kyzylorda, and Shymkent, regularly determined that children with disabilities should not be educated in mainstream schools, issuing conclusions recommending that they attend special schools or home education.
Irina’s 10-year-old son Andrey, who has autism, is now studying in an inclusive school in the second grade, but he spent first grade in education at home, as per the PMPK’s conclusion. “When [my husband and I] accepted home education for him, no one [at the PMPK] told us anything about inclusive education. [Had we known] we would have requested inclusive education for him, of course,” Irina said.
Mariya told Human Rights Watch that upon assessing her son with autism, who is now 11, PMPK staff were discouraging and made various excuses for why her son could not go to a mainstream school, including: “Your child can’t do it;” “The teacher is on her own;” “There are so many children;” “He’ll jump around.” Mariya came away from her experiences at the PMPK feeling like “their goal is to keep [our] children educated at home.” A disabilities rights activist in Almaty had a similar view, finding that “the greater emphasis [in PMPK assessments] is on education at home.”
Zhanara told Human Rights Watch that she wanted her son, Slava, eight-years-old, to attend school with other children, but “they [PMPK] refused. They said that he has to be able to move independently. … I want him in school for his development, to see and play with other kids, to talk to them. At home? He’s alone.”
Aigul Shakibaeva told Human Rights Watch that when she went to the PMPK in Almaty in 2017 with her son Asat, who has Down’s syndrome, and requested that he attend inclusive education school, the initial response of the PMPK was “these children should attend special schools.” Aigul’s son is now studying in the second grade in a mainstream school.
When Meruert and her five-year-old daughter, who has a physical disability affecting her hand, went to the PMPK in Kostanay, the PMPK directed Ksenya’s daughter to a remedial kindergarten. “My child has everything she needs to do what is demanded of her… She can do everything. But still [the PMPK] sent [her] to a remedial kindergarten for musculoskeletal disabilities.”
Damira’s nine-year-old son with autism began studying in a mainstream school in Astana with an aid, but after the first year, PMPK redirected him to a special school, against her wishes. “I can’t argue with them. They say their assessment is a recommendation, but their recommendation is a required document for the school,” Damira said.
Challenges against PMPK decisions
Anastasia, whose 12-year-old son, Pyotr, has Down’s syndrome, told Human Rights Watch that her experience with the PMPK amounted to a fight: “We have a war with the PMPK. They formally give us “a choice” but actually sent us to a particular school. To the special school.” Pyotr attended special school for two years, but after another parent informed Anastasiya that she had seen the teacher pull Pyotr out of the classroom “very roughly, and made him go to the psychologist’s office,” Anastasia requested education at home for her son. Anastasia told Human Rights Watch that in 2017, when Pyotr was in grade five: “I want him to go to general system. But he has missed so much. If we take him to a general school, [I’m afraid] he won’t keep up. It’s like sky and earth, the difference [in quality] between special school and general school.”
Anastasia is amongst a group of parents in Kostanay that had formally complained about the negative treatment of their children by PMPK specialists, including about the PMPK’s denigrating comments about their children.
Three or four years ago we wrote to the Ministry of Education with complaints about the PMPK. We complained about how they treat parents and children. They would say things about a child, like, “He can’t do anything!” They would trick us that way. Or say, “He won’t meet any education standards.”
After the PMPK in Kostanay determined that Nargiza’s seven-year-old son with autism was ineligible for enrollment in a mainstream school, she appealed in writing to the city’s Department of Education. “They [PMPK] said he has a mental health condition and should go to a special school or get education at home. I didn’t even want to consider this option. I wrote a letter to the Department of Education [contesting their determination],” she explained. Nargiza was successful at getting her son access to a mainstream school. She told Human Rights Watch that she saw “global changes in him when he went to school. He changed as a person.”
Rushed and Hostile Assessments
Human Rights Watch interviewed parents in Almaty, Kostanay, Kyzylorda, and Astana who described rushed and perfunctory PMPK assessments of their children. PMPK assessments can take place at any time as necessary, but usually they occur once a year at the end of or just before the start of an academic year. To meet CRPD requirements for inclusive education, assessments of children with disabilities should not be used to block a child’s access to inclusive education, but to ascertain the accommodations necessary to ensure the child’s quality education in a local mainstream school.
Parents variously described how they and their children were invited to come on a particular day to meet with the PMPK, but then made to wait for up to several hours, in cramped hallways and corridors, on a first-come, first-served basis. In many cases, parents were not given the option of scheduling an appointment for a specific time. Parents said that by the time the commission evaluated their children, the children were tired and agitated. Parents felt that this compromised the integrity and the quality of their child’s assessment, and negatively affected the PMPK’s decision on their child’s educational path. Staff at one PMPK Human Rights Watch visited in Almaty described different conditions (as described in more detail below).
Aizada, who had to wait for an hour to see the PMPK commission, told Human Rights Watch, “I don’t understand why they ask all the parents to come at the same time. You don’t know what to do with your child [while you wait]. There is no place for him to run around.” Mariya echoed these concerns. “There is nothing [for the kids] to play with. Parents are seen on a first come, first served basis. [In our case] someone from the commission came out [to the corridor] to say, ‘You’re disrupting us!’ [But] it’s so basic! You need to give the children something to do [to keep them occupied].”
“In order to hold a place in line, you have to get there at 6 a.m. The doctor starts receiving people at 9 a.m. It’s that kind of line - you have to wait three hours,” Irina told Human Rights Watch about her experience with her 10-year-old son at a PMPK in Almaty in 2018. “And of course, by the time you enter the office, your child is out of sorts. Honestly? So are you. It’s emotionally exhausting.”
Parents also described how the PMPK environment is not conducive to putting their children at ease, because, for example, PMPK specialists fire off questions as if interrogating the child, to determine whether the child could follow directions, speak his or her name, read a text or build a pyramid of blocks (depending on their age group). Parents said that in these conditions, their children were shy or nervous, so may not have been able to answer questions, negatively affecting the PMPK’s assessment.
Larissa described how after waiting for an hour-and-a-half, she and her young son faced an intimidating panel of specialists at an Almaty PMPK in 2015. “There was a huge table in front of us, with 10 specialists. My son was seated before the table, and they just began asking questions. Half of the commission asked me questions; the other half asked my son questions. It lasted for 15 minutes.”
Polina described the experience she and her five-year-old daughter with Down’s syndrome had at the PMPK in Kostanay as being “like a conveyer belt.” She explained: “They weren’t rude. They just didn’t explain anything, they just wrote things, asked questions. It was 20 minutes in total… These mean-looking women on the commission – [my] child sees their hard faces and she isn’t comfortable. She didn’t have time to get used to them.”
Dina described taking her son, Timur, with autism, to his first PMPK assessment, “The commission didn’t even say hello to him. They recommended a corrective school for intellectual disabilities. I didn’t understand how they decided this. They asked him lots of questions and did some exercises with him. He did fine.” Dina lamented she was unable to enroll Timur in her neighborhood school: “After the PMPK, I thought he wouldn’t ever be able to go to a regular school. I was really upset. They told me that it was a recommendation only, so I was happy, and I wanted [him] to go to our neighborhood school. But at the school, they said without the PMPK conclusion we will not take him.”
After the third grade, Timur was admitted to a remedial class in a mainstream school, and now is home educated. The last time Dina took her now 13-year-old son to the PMPK, the commission appeared to dismiss them outright: “They [PMPK staff] said, “You’ve come here again?” They said, “We won’t even test him, he won’t be able to complete the tasks.” They just gave him an extension of [his home education program].” Dina described the negative effect their hostility has had on her son: “My son doesn’t want to go there. He sees their attitude, he can see the way they look at him, whether they say hello or not.”
The PMPK’s first assessment of Bayan’s four-year-old son with cerebral palsy was over in 10 minutes: “There were four women. They didn’t really ask many questions, just gave him some toys to play with. They asked me his name, how he plays, and whether he reacts to sounds.” When Bayan took her son to the PMPK again at around age nine, the PMPK assigned him education at home. Bayan told Human Rights Watch: “They didn’t examine him for very long. They said education at home. I asked them, perhaps we could try going to school? [But] they told me, ‘No, your child is restless – [he gets] home education.”
Aisha, whose six-year-old son has autism, told Human Rights Watch, “The PMPK didn’t ask us anything substantive. Only, ‘Does he go to the toilet [independently]?’ They didn’t ask him anything, they didn’t do any tasks with him.” The PMPK assigned Aisha’s son to a remedial group in a kindergarten. “I want to send him to a [mainstream] school with [other] children. He can get a better education there,” Aisha said.
Many parents interviewed for this report also felt that what was the most important factor for the PMPK in determining the kind of school their child should attend is whether their child could keep still and sit in their seat. For example, Damira explained: “If [your child] runs around and doesn’t sit down they immediately give him a negative assessment because he’s not sitting down.”
Marina said that after her son, who has cerebral palsy, finished kindergarten, she took him to the PMPK in Almaty for assessment. PMPK staff asked only one question, and the assessment lasted just five minutes. “[The PMPK specialist] asked one question – can my son sit at a desk the whole class period?” Marina told Human Rights Watch that since he cannot, “They concluded that he can’t be educated at school, only at home.”
During a visit to PMPK No. 6 in Almaty, which had opened only a few months prior to Human Rights Watch’s visit, and in a meeting that took place in the presence of officials from the Almaty City Department of Education, staff described assessment procedures that differed significantly from the experiences of parents as described above.
Staff informed Human Rights Watch that parents were required to make an appointment in advance, and that each visit with a child and his or her parent(s) could last up to one hour. They said that the commission takes an individual approach with children, including assessing a child up to four separate times to allow staff the time to vary their approaches in order to connect with the child.
III. Slow Progress Towards Inclusive Education for Children with Disabilities
Knowledge is important. If [my sons] lack knowledge, they lack understanding and they’ll end up on the margins. The margins of society.
- Zoya, mother of two boys with cerebral palsy
I think there should be inclusion. We live in society and my child should also be in society. In society in all ways.
- Anastasia, mother of a boy with Down’s syndrome
Despite the government’s stated commitments to ensuring inclusive education in mainstream schools for children with disabilities by 2019, progress towards full and genuine inclusive education is slow. Some children with disabilities attend mainstream schools, but most children with disabilities in the locations where Human Rights Watch carried out research for this report are segregated into special schools, separate classrooms, or are enrolled in home education.
As described above, school officials’ reliance on an assessment from a PMPK to allow a child to attend a mainstream school, as well as the PMPK’s prioritization on education at home or in special schools for children with disabilities, create serious obstacles for them to access a quality inclusive education.
Kazakhstan’s Constitution guarantees free elementary and secondary school education in state schools to all citizens. The Law on Education specifies that “The state shall ensure that citizens of the Republic of Kazakhstan receive free preschool, primary, basic secondary, general secondary, technical and vocational education.” Inclusive education is not effectively guaranteed in Kazakh law, although the Law on Education states that “the government, implementing the goal of inclusive education, provides citizens with disabilities with special conditions for their education… at all levels of education.” Inclusive education is defined in Kazakh law as “a process that guarantees equitable access to education for all including those with special educational needs and individual capabilities.” However, Kazakh laws regulating access to education do not define or guarantee reasonable accommodations, an essential aspect of inclusive education, for children and young people with disabilities enrolled in schools and universities.
The CRPD requires states to ensure the right of persons with disabilities to education through an inclusive education system at all levels. Inclusive education involves “the full and effective participation, accessibility, attendance and achievement of all students, especially those who, for different reasons, are excluded or at risk of being marginalized.” To achieve this, states must “commit to ending segregation… by ensuring inclusive classroom teaching in accessible learning environments with appropriate supports. The education system must provide a personalized educational response, rather than expecting the student to fit the system.” The failure to guarantee appropriate supports, also known as reasonable accommodations, constitutes discrimination. Research shows that an inclusive approach can boost learning for all students and combat harmful stereotypes of people with disabilities.
Experts in Kazakhstan confirmed to Human Rights Watch that many officials do not yet understand how to implement quality, inclusive education or what it means to transform the education system into one that is genuinely inclusive. A representative of an Almaty-based nongovernmental disabilities rights organization noted that “the authorities’ thinking is that if they make the building [physically] accessible, that’s an inclusive school.” A representatives of a disabilities rights group in Shymkent said, “What they [the authorities] mean by inclusive education is remedial classes.” As mentioned above, an Almaty City Department of Education representative told Human Rights Watch that what makes an inclusive school inclusive are the educators. She explained: “In each [inclusive] school, there is a caregiver, a special education teacher, a psychologist and a speech therapist… [But] When it comes to physical access, I can’t speak for all schools being accessible.”
Mainstream schools that enroll children with disabilities do not appear to be providing truly inclusive education. Inclusive education schools in several of Kazakhstan’s cities currently encompass only children in primary and lower secondary school, do not provide reasonable accommodations for all types of disabilities, and operate in buildings that do not meet Universal Design standards, or designs that all people can use, to the greatest extent possible, without the need for adaptation or specialized design. “We don’t have inclusive schools, we have integration,” one expert told Human Rights Watch.
In other cases, schools enroll children with disabilities, but segregate them into separate classrooms, known as “corrective” classrooms within the school, where they are isolated from other children. According to the most recent government figures, there are currently 2,605 remedial classes in mainstream schools in Kazakhstan, with approximately 25,000 children enrolled in such classes.
While “corrective” classrooms are located in mainstream schools, children who study in these classrooms appear to have little interaction with the other students in the school. Svetlana said that Vitya, her 16-year-old son who has autism, studied in a mainstream school in Kostanay. Out of the nine years Vitya was in school, he was only in a regular classroom for the first two years. Vitya spent the next seven years in a special classroom for children with disabilities.
A Positive Response to Inclusive Education
Parents whose children are in schools designated as “inclusive” told Human Rights Watch they are happy to have the option of inclusive education for their children. After one year in inclusive education, Malika’s son, Ilya, with Down’s syndrome, “likes to study. He sees how others do something, and he does the same. He’s learning. He’s learned how to draw. He’s become more communicative because he’s in an environment where he hears speech. He’s learning social skills by imitating [others],” she told Human Rights Watch.
Rita said the same about her son, a 10-year-old with a developmental disability, who previously studied in a special school in Almaty. “My son is motivated, and he is encouraged. I’m happy that we ended up in inclusive education. [My son] socializes with other children and learns. It makes me happy, because in the [other] school, that wasn’t happening. He’s acquiring skills from other children.”
After another parent informed Bayan about inclusive schools in Almaty, she insisted at the PMPK that Nurlan, her 10-year-old son with autism, who was in home education at the time, be permitted to attend a mainstream school. One of the PMPK specialists told her “I would still leave him in home education,” but granted Nurlan a PMPK conclusion recommending mainstream school for a half-year trial period. The school allocated Nurlan an aide to assist him in class. “It’s going so well,” Bayan told Human Rights Watch. “For every parent it’s so important that their child is socialized.”
Lack of Reasonable Accommodations in Mainstream Schools
Children with disabilities enrolled in so-called inclusive schools or inclusive education pilot programs at mainstream schools in Kazakhstan face various barriers accessing a quality education in mainstream schools on an equal basis with others. Barriers include inaccessible buildings, classrooms, and toilets; a lack of trained and qualified staff to teach children with disabilities; or a lack of aides to support children with disabilities.
Barriers at Schools
Children and young people with physical disabilities interviewed by Human Rights Watch about their school experience described how the lack of reasonable accommodations, or the appropriate supports for their disability, interfered with their education. Human Rights Watch researchers observed physical barriers at mainstream schools in Almaty such as buildings without lifts, and two- to three-story buildings with only one accessible toilet on the first floor, for example.
Asem, a 13-year-old girl with a physical disability that affects her mobility in one of her legs, studies at a mainstream school in her village. She told Human Rights Watch the school does not have accommodations, such as a lift or an accessible toilet. “When I walk a lot, I get tired,” Asem told Human Rights Watch. “The toilet [outhouse] is in the yard, and I use it, but I’m embarrassed to go often. I can’t squat, so I have to extend one leg out straight. I try not to go when there are other girls around.” Asem’s mother explained to Human Rights Watch that in order to avoid going to the toilet at school, Asem usually “goes to the toilet at home in the morning, and when she comes home.” When she was younger, caregivers at school would carry her up and down stairs, Asem’s mother said.
In Shymkent, Human Rights Watch spoke to children with physical disabilities who study in a mainstream school, but study separately in a special classroom that occupies its own building on school grounds. The school occupies two floors and does not have ramps, wheelchair accessible toilets, or other reasonable accommodations.
Alibek, a 13-year-old boy who uses a wheelchair and attends the school, told Human Rights Watch that the toilet is not wheelchair accessible, so a female staff person assists him, which is embarrassing for him. “It’s uncomfortable to go to the toilet with opai [caregiver, in Kazakh],” Alibek said. Similarly, Vera, 10, who uses a wheelchair and studies in the school, told Human Rights Watch that she cannot use the toilet independently because there is no wheelchair accessible toilet. “The nanny [a caregiver at the school] carries me to the toilet,” she said.
Kseniya, a 12-year-old girl with cerebral palsy who uses a wheelchair, told Human Rights Watch about her experience at the school: “I don’t have many classes on the second floor; it’s mostly people who can walk there.” When she does have to get upstairs for class, there are “nannies” who carry them, she said. The school does not have a lift, so the students who cannot walk on their own must be carried or pull themselves up the stairs to attend their classes.
Olga, Vera’s mother, confirmed the difficulties children have moving around the school and that some have to go up the stairs on their own. She said, “There are no accommodations. It’s horrible. The children who pull themselves upstairs, they’re heroes.”
Renat, now 21, described how his school in a town in the Almaty region would not grant him reasonable accommodations after an accident that resulted in a permanent disability to his hand. He told Human Rights Watch, “It was in the eighth grade. It was hard for me to write. We had the idea to buy a laptop, so I could keep up. But [the school] didn’t allow it. They said it would be discrimination. Other students have to write, and then there’s me, with my laptop. I tried to explain to my teacher that I can write faster on the keyboard; I can’t keep up otherwise.” Renat finished the eighth grade as best as he could without a laptop.
Too Few Aides in Mainstream Schools
The PMPK can recommend that schools provide teaching aides to work with children with disabilities, although parents expressed concern that there were not enough qualified aides to work with children who need individualized support. Human Rights Watch found that as a result, some parents accompany their children to school or pay for additional support services not provided by the school.
The Kazakh government has acknowledged the lack of qualified aides, noting in its 2017 submission to the CRPD that, “one of the problems in implementing inclusive education remains the question of psychological-pedagogical support for children with disabilities in educational organizations.”
Ajara, whose seven-year-old son is studying in a mainstream school in the first grade, told Human Rights Watch that it would be much better if her son had an aide available to him. Without an aide, she explained, “I leave him [at school] for two hours, then come to take him to the bathroom. I am worried he would get lost by himself.”
When Aigul Shakibaeva and Asat, her seven-year-old son who has Down’s syndrome, went to the PMPK for evaluation to start inclusive education, the PMPK did not recommend Asat be given an aide. Asat is one of 33 children in the first grade. Shakibaeva told Human Rights Watch: “They said that there are already four kids in the school who get a support person… The school suggested to move him to a class where there would be one aide to work with two children. It’s not ideal because the aides change very often because of the low pay.” Instead, Shakibaeva pays for an aide out of her own pocket. “It’s important for [Asat] to be in society, but it’s me that is buying him a place,” she noted.
In Kostanay, Nargiza fought to get her 11-year-old son, who has a learning disability, into mainstream school. Nargiza attended school with him, since he needed support to stay focused on the classwork, but the school did not have an aide for him. “I told [the department of education], let’s try something out. Give us a chance, as an experiment – one year in [mainstream] school with his parent as a tutor [aide] sitting with him. I know the teachers have a hard time with 25 kids. They agreed that he could study as an experiment… For three years I sat in the classroom with him.” Nargiza explained: “My being in the classroom bothered the teacher. The first year, I sat right next to him, since he gets distracted. Then for the next two years I sat in the back and if he had trouble or didn’t understand, I would help him.”
Sabira, who has a 10-year-old son with Down’s syndrome, told Human Rights Watch she wanted to put her son in an inclusive school in Almaty, but had reservations, including concerns about the lack of trained aides for her son:
There is also the problem that the inclusive education is only for the younger grades. So, ok, he goes for four grades and then I put him back in the [special school]? That doesn’t seem to make sense. He needs a tutor [aide]. There are very few good ones in the city, and they are not ready [trained]. There needs to be more preparation of tutors [aides].
In the mainstream Russian-language school in Almaty where Irina’s 10-year-old son Andrey, who has autism, studies in the second grade, Andrey was provided an aide with whom he did not share a common language. The aide was a Kazakh-language speaker, and Irina’s son, a Russian speaker. “She didn’t speak Russian well and Andrey couldn’t understand her… She would speak to him in Kazakh. He would speak Russian. They didn’t understand each other,” Irina said.
In the case of Malika’s son, Ilya, who has Down’s syndrome and who is now in the second grade in an inclusive school in Almaty, “the aides currently assisting him, they don’t know how to [support] him, they’re like nannies. The class teacher doesn’t understand her obligations [to him either]. There is a need for specialists who know what they’re doing,” Malika told Human Rights Watch.
Need to Further Develop an Individualized Approach
Kazakh law allows inclusive schools to teach and test “children with special educational needs,” according to the “needs and capabilities of the individual.” Human Rights Watch found that while some mainstream inclusive schools follow an individual education plan for children with disabilities, not all children enrolled in mainstream schools are benefitting from an individualized approach. For example, Damira, whose nine-year-old son who has autism attends a mainstream school in Astana, told Human Rights Watch that the school did not make any adjustments to the academic program to address her son’s learning needs: “There’s one educational standard for the children. My son is taught the same way as [other children] … He is unable to keep up.” The Committee on the Rights of People with Disabilities and UN Office of the High Commissioner for Human Rights (OHCHR) have stressed that “individualized attention should be considered a central feature of inclusive education.”
For other children in inclusive schools, the determination that a child follows an individualized plan is made by the PMPK, and educators at the school develop an individual plan. Malika, whose son with Down’s syndrome is in his second year of inclusive education in Almaty, said her son, Ilya, follows an individual plan and visits a special teacher at school, but that he “uses the same notebooks and textbooks as the other students, with some additional printouts.”
The director of an inclusive school in Almaty told Human Rights Watch: “our specialists set the individual plan, that is, the psychologist, speech therapist, special education teacher, and subject teachers. We review the plan once quarterly.” In another school Human Rights Watch visited, educators told Human Rights Watch that in addition to the class teacher, speech therapist and special education teacher, “parents also participate in creating the individual plans.”
The Ministry of Education should build on the good efforts in some schools to develop an education plan tailored to the individual needs of the child that incorporates the views of various people knowledgeable about the child, including his or her parents. Such an approach is consistent with Kazakhstan’s obligation under the CRPD.
Discrimination in Enrollment of Children with Disabilities
Human Rights Watch interviewed several parents who sought education for their children in mainstream schools, but who faced reluctance or flat out refusal to enroll children by PMPK staff or school officials.
When Aizada requested in 2017 that PMPK permit her son, Aidiyar, to attend a mainstream school in Almaty, PMPK staff responded, saying “’Why would you want to put such a good boy in inclusive education? He’ll just sit in a special room and won’t see other kids.’ They tried to dissuade me.” Aizada argued successfully for her son to attend mainstream school. Aidiyar is now in his second year in an inclusive school.
When Anastasia enrolled her son Pyotr, with Down’s syndrome, in school in Kostanay in 2013, his teacher initially refused to teach him because of his disability: “The director at the school was welcoming, but the teacher had not seen children with this disability before. When I went to speak with her before school started, she said, ‘I will tell you openly, I will not teach him.’” Anastasia said that nevertheless she persisted in enrolling Pyotr in the school, so he had the opportunity to socialize with other children his age.
Bakhyt wanted her son, who has autism, to study at a special school in Kostanay in 2011, but when she tried to enroll him when he turned seven, the typical age for starting school, the director asked her, “Why would you bother educating him?” The director told Bakhyt that she could wait until her son was eight or even 10-years-old to start school. Bakhyt went to the city’s department of education to complain. Her son started school that year, but PMPK determined that he should receive his education at home, which is how he has been receiving his education at time of writing. “He’s 13 now, and he wants to socialize with other kids,” Bakhyt said.
When Sultan, who has autism, was seven, his mother Zulfiya tried to enroll him in their neighborhood school in Almaty. “[At school] they told me, ‘Generally, you’re better off somewhere else,’ and told me to take him to a special school,” she said. When Zulfiya took Sultan to the PMPK for assessment, the PMPK concluded that Sultan should study in a special school. Sultan, who is now 14, currently studies at a special school.
Concerns Regarding Special Schools
Special schools are segregated schools where children with particular types of disabilities are enrolled on the basis of their disabilities: for example, children who are blind or have low vision; are deaf or hard of hearing; have physical disabilities; or have intellectual disabilities. These schools include modified curricula and are typically organized as boarding schools, where children can live during the week or semester. As of February 2018, there were 97 special schools and 42 special kindergartens in Kazakhstan. According to the most recent data publicly available, as of late 2017, over 14,000 children in Kazakhstan reside in special schools.
The CRPD guarantees individuals with disabilities, including children, the right to live and study in their communities. The UN Committee on the Rights of Persons with Disabilities has also repeatedly called on states party to the CRPD to end the segregation of children with disabilities, and to “take necessary steps to ensure that pupils who attend special schools are enrolled in inclusive schools,” and to “reallocate resources from the special education system to promote inclusive education in mainstream schools.” The Committee on the Rights of Persons with Disabilities, in its General Comment No. 4 on inclusive education, states that persons with disabilities must have the option to attend primary and secondary schools in the communities where they live.
The problem of separating children from their families and placing children with disabilities in residential special schools has been acknowledged in parliament. In October 2017, member of parliament Zhanat Omarbekova said during a parliamentary hearing: “We have to acknowledge that the rights of children with disabilities to live in a family are not fully realized, and are violated, as evidenced by the following state statistics: 2,220 children with disabilities permanently live in boarding homes under the oversight of social protection agencies; 14,275 live in special [remedial] boarding schools under the purview of the educational authorities. Thus… 16,600 children with disabilities are deprived of a family environment.”
Special Schools and the Lack of Alternatives
Some parents interviewed for this report told Human Rights Watch that they only put their children in special schools because they were concerned that mainstream schools would deny their children enrollment or lacked reasonable accommodations for their children.
Saya, a parent in Kyzylorda, explained the reason her daughter with low vision attended a special school: “I wish she could go to a mainstream school with regular kids, to socialize, but it’s unlikely that PMPK will give me permission. And if I choose home schooling, that’s just two hours of teaching per day. I work and I’m a single parent… I can’t leave her at home unsupervised.” Saya wishes it were otherwise. “You give your child to [live in] the dorm, basically, a closed institution. Then, then what? [You hope] they will attend university. And how are they equipped to deal with that? … Inclusive education is necessary.”
Several parents told Human Rights Watch they preferred special schools for their children’s education because of the availability of specialized services, or that they agreed to their children studying in special schools because staff have specialized training to teach children with disabilities, or because of the smaller class size special schools offer.
When Meerim’s son with autism was 10-years-old, she enrolled him in a remedial classroom in mainstream school in Almaty. Meerim told Human Rights Watch that some parents and the director did not support having a remedial classroom in the school. The parents filed a complaint with the authorities, claiming that “our children [with disabilities] were interfering with their children’s advancement.” “The director was afraid that there would be problems for him because of my son’s evaluation,” Meerim said. After a while, she and other parents whose children were studying in the remedial classroom agreed to move their children to a special school. Meerim explained: “We thought it was the best for children. The school building is new. The director was open to us... Teachers are very loyal to the children. It’s comfortable for us. The kids get physical therapy, other services.”
Poor Quality Education in Some Special Schools
Some special schools struggle to provide a quality education because of a lack of physical accessibility, accessible materials, or teacher training. The CRPD requires governments to take “appropriate measures to employ teachers, including teachers with disabilities, who are qualified in sign language and/or Braille, and to train professionals and staff who work at all levels of education.”
Nurlan, a teacher at a special school for children who are blind or have low vision told Human Rights Watch that approximately 90 percent of the teachers at the school do not know braille. A student at the school, 14-year-old Ayan, explained that students do not have textbooks that they can use. “We have ordinary books at the [special] school, like at mainstream schools, and they give us magnifying glasses. We have three magnifying glasses for seven of us, so we take turns reading.”
Galina approached a school in Almaty which is specialized for children with physical disabilities, to enroll her nine-year-old daughter, Anna, who uses a wheelchair. The school did not want to enroll Anna, citing the fact that she could not walk. “[Anna] goes to a [special] school that didn’t want to take her because she’s not independent. Barriers still exist. The school is equipped with two lifts, but neither of them work,” Galina said. When Human Rights Watch researchers visited the school in December 2018, neither of the two elevators were working.
Sophia and her 12-year-old son Denis, who has cerebral palsy and uses a wheelchair, also were met with pushback when Denis tried to enroll in the special school in Almaty for children with physical disabilities (the same school in which Galina tried to enroll Anna).
Sophia told Human Rights Watch that she wanted Denis to attend school, but the PMPK directed him to receive his education at home his first year. The following year at the PMPK assessment, Sophia insisted Denis be allowed to attend school. She explained, “PMPK staff sent me to talk to the school, but the school sent me back to PMPK. At the school they told me, ‘We have stairs, who is going to move your child around the school?’” It was only after Sophia appealed to Kazakhstan’s Ombudsman and the Almaty City Department of Education for assistance, that she was successful in securing a place for Denis in school for his second grade.
Anel told Human Rights Watch that she and her husband decided against a special school for their son, 11, with autism, when they learned that the relevant special school would not allow an aide to accompany him. “In the [special] school, they won’t let us send a private aide or allow a parent to sit with their child. We can’t even go in. It’s not allowed. They claim it’s for safety. I asked a teacher one time, and she said, ‘You don’t need to, it’s not permitted, they don’t allow it.’”
Sabira shared her concerns about the quality of education her 10-year-old son with Down’s syndrome was getting at a special school he previously attended in Almaty. “I really try to have the least contact with the school as possible. I had this feeling that the treatment was not very good. They told me to my face, ‘Your child has no future.’ How can I trust my son to someone who feels that way? Everything there was just for show – they smile, make things pretty. But he could lie on the floor there the whole day and no one does anything with him.” When Sabira took her son out of school, the teacher told her, “We won’t be able to teach this child anyway,” Sabira said. Now Sabira’s son receives home education and gets only two hours of education a week. “Am I satisfied with this arrangement? No, I’m not satisfied,” she said.
Separation from Family, Community
For some families, particularly those living in rural areas, sending a child to a special school means traveling long distances or leaving the child to live at school full time or during the school week. As result, children are separated from their families and immediate communities. Ardak’s 10-year-old son attended a special school for three years. He lived at the school every other week because of the effort and time it took to travel from their home to school and back: “We took three buses and traveled two hours to get to the school. The PMPK decided on this school for us. They said that there weren’t places in the schools closer to us.”
Togzhan told Human Rights Watch said she is afraid to send her seven-year-old daughter, Asel, who is blind, to a special school, which is about 1,000 kilometers away in Karaganda: “A teacher in the school is suggesting the Karaganda or Almaty special [residential] school for her. But I would have to take and leave her there. How could I leave her there when she can’t see and is afraid of people? I’d have to move there, buy an apartment, find work.”
Azamat, a 10-year-old who studies at special school in Almaty, said, “I’d rather not have to sleep there. I don’t want to have to sleep at the school at all. If you get up in the night [to go to the bathroom], the caregivers shout at you to ‘go back to bed!’”
Anton has two children who go to a remedial school for children with low vision or who are blind. Because there are no schools that can accommodate his children near the family home outside the city, Anton and his wife have enrolled their children in a special school in Almaty, approximately two hours away by car. Due to the long distance and cost of transportation the children only come home on the weekends. He explained, “Of course it would be good if they went to school nearby and came home every day. I’m not satisfied, but I don’t have any alternatives to give my children an education.”
Problems with Home Education
Children receive home education typically because a PMPK conclusion has determined that is the type of education they should receive. Children who receive education at home are formally enrolled at a mainstream or special school and are counted among the children attending that school, although the children do not actually receive an education in the school and may rarely, if ever, visit the school. Instead, a teacher or teachers travel to the child to teach them in their home.
According to UNICEF, there are approximately 14,000 school-aged children, including children with disabilities, currently receiving home education in Kazakhstan. The UNICEF figure is not disaggregated to show the percentage of children with disabilities and those without, and the Ministry of Education did not respond to a November 2018 Human Rights Watch letter requesting this information.
Human Rights Watch documented how children with disabilities who are educated at home do not receive a quality education, and are isolated and separated from their peers, classmates, and society more broadly. Parents and children also explained how the lack of accessibility and other reasonable accommodations in schools meant home education was the only educational option available to their children.
Kazakh law allows children to receive education at home; it is not envisioned exclusively as a temporary measure but determined according to an assessment of a child’s health by a Medical-Advisory-Commission (VKK). Upon examining a child with disabilities, the VKK issues a “medical conclusion” about “the state of a child’s health to determine the question of home education.” The VKK assessment is then considered by the PMPK when determining the referral for school enrollment or home education.
Home education provides basic literacy education in a limited number of subjects, typically language and mathematics. Higher grades education includes history and sciences. Children who are educated at home can also be taught according to an individualized plan set by the teacher.
In September 2018, the Kazakh government amended rules regulating home education. Previously, the rules provided children in primary school a maximum of eight-10 hours of instruction per week, and elementary and middle school students a maximum of 10-12 hours. The amendments increased the maximum number of class hours for children in primary school, who receive education at home to 14 hours a week, and for children in lower and secondary school, to 15-20 hours per week.
The UN special rapporteur on the rights of persons with disabilities concluded after her visit to Kazakhstan in September 2017: “home schooling should be an exceptional and temporary measure for children whose health does not allow them to attend school, rather than a practice to further segregate children with disabilities.”
Home Education due to a Lack of Reasonable Accommodations at School
Children and families told Human Rights Watch that it was because mainstream schools would not provide children reasonable accommodations that they opted for or agreed to home education for their children. One father said he requested home education for his daughter, explaining that “there are more than 30 kids in a classroom, so for now, it’s better for her to study at home.”
Maxim, 24, said that when he was educated at home in Almaty, teachers came by “two or three” times a week for up to two hours each time. Maxim explained he couldn’t go to school because “it was hard for me. I don’t walk [on my own] and school was far away, and they told me to go to home school. But of course, I dreamt of [going to school]. My friends went to school, but I stayed home. I was sad.”
“I started education at home in the eighth grade. Before that, I studied at school,” Nazimjan, a 13-year-old girl living in a small town in the Almaty region who has epilepsy, told Human Rights Watch. “I cried at the beginning; they said that I would be taught at home for just three months, but later they said it would be a year. I miss all the school news.”
Misha, a 13-year-old boy with cerebral palsy, who is educated at home in a village in the Almaty region told Human Rights Watch that he wishes he could go to school. “I went to school in the first grade… I’d want to go to school, of course! It’s fun there. It’s way more interesting at school– you get to go to all the classes. There are a lot of kids! It’s better to study at school. I get three lessons [a day] maximum, but at school you get seven.”
Low Quality and Quantity of Home Education Classes
The majority of families interviewed for this report whose children are in home education told Human Rights Watch that their child received no more than the minimum of eight hours of instruction per week. Others reported even less. Some parents also complained that the teachers sent to educate their children did not have any specialized training to teach children with disabilities.
Except for a few months in the first grade, Eldar, an 11-year old with autism from Shymkent, has been educated at home. Vika, his mother, complained that Eldar’s teacher “shows up when he wants, and when he doesn’t, he doesn’t.”
Madiyar, a young person with cerebral palsy from Taldikorgan, said that when he was home educated, his teachers did not show up regularly. He said, “I remember that in the seventh and eighth grades, I barely studied because the teachers never showed up. When my parents complained, the [school] director asked, ‘What marks do you want me to give your son?’” Later Madiyar said, “Had I a choice, I would have sought to finish school with other [students]. But because I didn’t have the option, I tried to do what I could on my own.”
Akbota, who was assessed as having a physical disability in the fifth grade (as described in the Summary of this report), was told by the PMPK commission who examined her that she should receive her education at home in Almaty. Akbota’s teachers rarely visited her to teach her lessons, so Akbota fell behind.
The teachers rarely came to my home – once in six months, once in three months. They were supposed to come two or three times a week, but in the best case, they came once or twice a month… We complained, and for a while, [the teachers] came more frequently. But it would eventually go back to the way it was before. The teachers [even] got offended that we complained about them.
Akbota told Human Rights Watch, “Every year I hoped I could go back to attending school… I felt how much I was missing out, and that I could study, but I wasn’t given the option.”
Zhumagul said that her son, who has Down’s syndrome, got approximately one hour of teaching at home per week. She explained:
There was a young woman [teacher] who came on a regular basis, and the other teacher showed up once a month with a table and she would ask me to sign here and here, to show that she had been to our house. I sent her away… I asked the teachers if they could come more frequently, but they said, ‘Look, we have a whole list of [students] and we can’t come every day.’
Home education isolates children with disabilities from their peers and community. Dima, who is now 28 and has cerebral palsy, told Human Rights Watch that after the first grade, when he was around seven years old, he was educated at home. “It was easier that way, because I can’t sit up,” he said. Being confined to his home for school, coupled with the physical barriers of living on the fifth floor, meant Dima has not left his flat, where he lives with his mother, in 18 years. “Who is going to carry me down five flights of stairs? There is no lift.”
Vika told Human Rights Watch that she was worried about her son Eldar’s socialization after the PMPK determined he should receive education at home. Vika had hoped her son could go to school with an aide: “They kept him in home education this year. I can’t understand. Why can’t my child [go to school]? They’ve isolated him. He could go to school if only he had an aide in the classroom.”
Aimira, a 12-year-old who has scoliosis, which limits her mobility, said “it was a bit insulting” after the PMPK issued a conclusion indicating she should receive her education at home instead of at school. “My classmates ask me, ‘When are you coming back?’ I miss school. It’s been three years already,” Aimira told Human Rights Watch.
After Zhibek, who has a physical disability, finished the ninth grade in a mainstream school in Almaty, the PMPK concluded she should complete her education in evening home education classes. Zhibek told Human Rights Watch that she “didn’t like it much,” especially because no teachers actually visited her at home. “You’re far away from your friends. Your friends are there. They’re all there. And you’re at home. The four walls are your friends.”
Challenges Attending Kindergarten
Under Kazakh law, parents may choose to put their child in either a special kindergarten or a state-run mainstream kindergarten “on the basis of a Psychological-Medical-Pedagogical Consultation conclusion.”
Human Rights Watch documented how in practice some special and mainstream kindergartens denied children with disabilities enrollment, either because parents did not have a PMPK conclusion, or because the kindergarten said it did not have the capacity to educate the child with disabilities. According to recent government figures, as of the 2016-2017 academic year, only 495 of 4,910 kindergartens are considered inclusive, meaning that they accept children with disabilities.
Antonina described her frustration in having her two sons with autism turned away from kindergarten and the lack of other options, such that her children did not get into kindergarten:
I went to the kindergarten, but they told me, ‘You’re not allowed, you have to go to the PMPK.’ What’s this commission, I thought? … I already got them ready for kindergarten. It was finally our turn. How many years we waited, just to be told, ‘You are not allowed.’ There are no special kindergartens, [and] no rehabilitation center [in Kostanay] … I wrote to the Department of Education. I didn’t know what to do. I was full of emotion, in a panic. I didn’t have anyone to advise me what to do. But there was no change [in my circumstances].
Alyona, a mother of a four-year-old girl with Down’s syndrome, said that school staff at three or four kindergartens in Kyzylorda refused to accept her daughter because the kindergartens in question “don’t have a specialist” or “there is only one tutor, one nanny for 20 children, but your child needs special care.” Alyona told Human Rights Watch, “I don’t want my child to be worse off than others her age. [When it came to kindergartens] We kept getting the same answer– you’re not allowed.”
In other cases Human Rights Watch documented, staff at kindergartens initially tried to dissuade parents from trying to enroll their children with disabilities, but after the parents pushed back, agreed to enroll them. Alisa, whose son has autism, tried to put her son into a special kindergarten in Shymkent, but staff at the kindergarten refused to enroll him. “The speech therapist told us, ‘We can’t handle your child; we don’t have any specialists [to care for your child].’”
Anargul told Human Rights Watch that she and her daughter, Ainur, who has Down’s syndrome, waited three-and-a-half-years for a space in the local kindergarten in Kyzylorda to open up due to large numbers of children waiting to be enrolled. When a space finally became available, Anargul told Human Rights Watch: “I ran to the kindergarten with the [PMPK] directive. [At the kindergarten] they said, ‘Who do you think you are?’ We don’t accept those kinds of children.’ I begged them to take Ainur for a two-month trial period. They agreed to enroll her on condition I get a certificate for her from the Medical Advisory Commission [that she’s healthy and can enroll in school].”
When Aliya dropped off her four-year-old son with autism at a special kindergarten for children with speech impairments at the start of the school year, the teacher tried to dissuade her, saying, ‘This is not the place for him,’ and that the kindergarten could not provide him an individualized approach. “I had to go talk to all the teachers to explain to them about his needs... I [also] hired an aide,” she said.
Nargiza’s son, who has autism, attended a mainstream kindergarten in Kostanay, but she withdrew him after she saw that he was being treated differently than other students:
In the kindergarten I saw that the teacher studies with children, but my son was sitting alone at a table, not doing anything. I complained to the education department and spoke with the kindergarten director. The director said, ‘Your son is inadequate.’ They claimed he jumped on the table. I stopped taking him there. He wasn’t learning anyway.
Togzhan’s seven-year-old daughter Asel is blind and has faced serious obstacles to education. Togzhan told Human Rights Watch, “There is no preschool for blind people,” in Kostanay, where they live. “She doesn’t really study now, at home or at school. She doesn’t respond to instructions, so it would be hard at school for her to manage. Officially and unofficially, she doesn’t study anywhere. She’s not learning things like math, reading.”
Early childhood education is the foundation for a child’s inclusive education path. The UN Committee on the Rights of Disabilities has found in implementing inclusive education, governments should “ensure access to quality early childhood development, care and preprimary education, together with the provision of support and training to parents and caregivers of young children with disabilities. If identified and supported early, young children with disabilities are more likely to transit smoothly into preprimary and primary inclusive education settings.”
Barriers to Vocational and Higher Education
Human Rights Watch interviewed young people with disabilities and their parents who described obstacles some young people face continuing education beyond upper secondary school. These obstacles include lack of a quality education in mainstream and specialized schools to prepare children to take university entrance exams, and lack of infrastructure and other reasonable accommodations to allow young people to attend higher education without discrimination. Under the CRPD, Kazakhstan has an obligation to “ensure that persons with disabilities are able to access general tertiary education, vocational training, adult education, and lifelong learning without discrimination.”
In Kazakhstan, only children who conclude upper secondary education receive a school diploma and can take the Unified National Test (ENT) to pursue university (higher) education.
Children with disabilities who are enrolled in some types of special schools, for example special schools for children with intellectual or psychosocial disabilities, or who receive education at home that provides only a ninth-grade education, are automatically excluded from higher education, unless they attend an upper secondary or vocational school and get their diploma. Children who successfully complete nine years of school can either enroll in two-year upper secondary schools or in technical and vocational secondary schools (colleges). Upon completing upper secondary school, students can either compete to enter institutes of higher education (university), or pursue technical and vocational programs.
Gulzhan told Human Rights Watch that her son Baltabay, now 24, did not continue his education past the ninth grade: “My son finished ninth grade in home school, but they told me that they [children with cerebral palsy] can’t go to university.” Baltabay had no further education. With the help of his mother, he now spends time at a rehabilitation center in Almaty.
Rayhan, 16, said that she recently finished the ninth grade at a special school in Taldikorgan, and similarly has not continued her education. Rayhan told Human Rights Watch, “I was 15 [when I finished ninth grade], but college won’t take me. I want to be a designer.” Rayhan now spends her time at a day care center for children with disabilities in a village outside Almaty: “I make jewelry [here]. Everyone is younger than me right now. Sometimes it’s boring. There is an older boy who comes sometimes, but not [often].”
Vitya, a 16-year-old with autism, finished ninth grade and successfully entered a vocational college in Kostanay:
I study, I go to college now. I am studying to be a railway worker. I was tired of studying in school, I had done everything. I was ready for college. There are 19 kids in my group. Everything is ok. There are some kids who come from other towns. I chose this college, so not to have to go far away from home.
Dosym, a young activist working on disabilities rights issues in rural Almaty region, told Human Rights Watch that parents in rural areas complain that their home educated children have no opportunities for higher education: “[Schools] hand out certificates– for sitting classes basically. [And] those children can’t go on to attend university.”
According to 2017 figures provided to the UN Committee on the Rights of Persons with Disabilities by the Kazakh government, just 374 students enrolled in university programs had been registered as having a disability, 46 percent of whom are women. Some private universities provide accommodations for young people with disabilities to attend university. The government has also noted that “in order to provide access to education for people with physical disabilities, including children,” 42 universities offer distance learning programs. Students who are enrolled in distance learning programs do all of their coursework at home, isolated from their peers and the educational community. Human Rights Watch did not speak to anyone enrolled in a distance learning program.
Lack of Reasonable Accommodations in Colleges and Universities
Where children do study at colleges or universities, lack of reasonable accommodations, such as the absence of elevators, ramps, or adapted materials, including braille or large print textbooks for students with limited vision, and difficulties with transportation to university interfere with their right to higher education, and impede opportunities for employment.
Disability rights activist Parkhat Yussupjanov, who works on establishing resource centers for university students, told Human Rights Watch that the Kazakh Academy of Sport and Tourism in Almaty accepts students with disabilities and has made certain accommodations for the approximately 70 students enrolled in their higher education program, such as making it possible for students to take their exams on the first floor. Nonetheless, students cannot move freely beyond the first floor, as the academy does not have an elevator, nor has the standardized test been adjusted for students who need more time, for example, or for those who need adapted materials because they cannot see the text.
Madiyar, a young person with cerebral palsy, told Human Rights Watch that he grew up wanting to attend university like his older brother and sister. After he finished school he went to a private university in Almaty. “There were other students [with disabilities] at the college, about four or five of us. Turan [University] is the only university where there is physical access, equipped with lifts and ramps. But we didn’t have any tutors [aides].”
Madiyar still felt like his teachers treated him differently because of his disability. “A feeling of pity for people like me prevails in society, especially in educational institutions. For example, [teachers] give less information because they believe that I will not master it. Nothing is expected of us.”
Twenty-five-year-old Akbota, who has a physical disability, said she would have wanted to go to university right after she graduated, but because she fell behind in the curriculum, she could not take the ENT (Akbota’s case is also described in the Summary of this report). In September 2018, seven years later, following a one-year university preparatory course, Akbota began her university studies.
Akbota faces obstacles due to the lack of accessibility in the university where she did her preparatory coursework. “The building does not have any accommodations. I have to go [there] with my mom, as the toilets do not accommodate people like me. They’re too high. At first it was uncomfortable in front of the other girls, but they didn’t pay any attention. But it’s still uncomfortable to have to ask my mom. She’s 60 years old.”
After graduating from a special school for children with low vision or who are blind, 18-year-old Yerbol enrolled at a private economics college. Yerbol, who has limited vision, explained how he overcame challenges studying at a mainstream college: “At first I was worried about studying with people without disabilities. There are 20 of us in my group, out of which about 12 or 13 actually come to class. I can’t see the board, but I take pictures and then take notes, or I turn on my voice recorder.”
Complete Lack of Education for Some Children
Although Kazakhstan’s constitution guarantees all children the right to education, and education through upper secondary school or vocational school is compulsory, Human Rights Watch found that some children in Kazakhstan are receiving no education at all, either because they had been deemed “uneducable” or have been institutionalized in neurological-psychiatric institutions for children with an intellectual or psychosocial disability (mental health condition).
Human Rights Watch documented a few isolated cases where PMPK specialists or school officials denied children with disabilities an education in school because they deemed the child “uneducable.” One NGO leader explained to Human Rights Watch that while the Soviet-era assessment of a child as “uneducable” formally has been removed from law, some officials may still make decisions based on the belief that some children cannot learn at all.
Elena Vladimirovna, grandmother and guardian to 14-year-old Artyom, who has Down’s syndrome, explained to Human Rights Watch that PMPK staff in Kostanay decided her grandson could not learn. As a result, Artyom does not attend school. She explained,
[The PMPK thinks Artyom] is ‘uneducable.’ In 2013, we applied [to PMPK]. They told us that he can’t do anything. I asked [for school] on a trial basis. At the PMPK [they] said, ‘Then prepare.’ In 2014, we did puzzles, reading, counting… We went back. They said, ‘We have great respect for what you accomplished, [but] he’s uneducable.’ Some handful of people decide my child’s fate! Everyone is required to get an education… I didn’t bother again after 2014. He reads. I teach him poems. We’ve learned songs together.
In 2011, PMPK specialists asked Gulym’s three-year-old son to build a pyramid with blocks during their evaluation, which he did not manage to do. “[The PMPK specialists] told me that he is uneducable… They said, ‘He’s inadequate; he doesn’t follow instructions. We recommend only home education.” Gulym told Human Rights Watch, “As I mother, I understood he could catch up. I told myself, anything is possible.” Gulym told Human Rights Watch she later managed to enroll her son in a mainstream school with a remedial classroom.
Children in Psychiatric Institutions
Children with disabilities living in state neurological-psychiatric children’s institutions receive little or no education. The Ministry of Labor and Social Protection, in response to a letter from Human Rights Watch requesting information about education for children in these types of institutions, acknowledged that children do not receive education. The ministry claimed: “children with psychiatric-neurological pathologies, who, due to their illnesses, have difficulty learning in special classes in special educational institutions (they are unable to move without help, they are unable to care for themselves… they need an individual approach)” are under the care of the social services system. The Ministry of Labor and Social Protection stated in its response that “children with disabilities affecting mobility and those without intellectual disabilities attend school.”
In November 2018, Human Rights Watch visited Special Social Services Center No. 2, also known as a psychiatric-neurological institution for children, in Almaty. Staff interviewed confirmed that only 12 of 131 children residing in the institution are currently receiving any education. These classes are taught in the facility. Until September 2018, no children received any education, staff said.
Similarly, staff at psychiatric-neurological institutions for children in Karaganda and Shymkent, which Human Rights Watch visited in December 2018, confirmed that children and young adults in the institutions receive little or no education. One young man, who attended school for a period when he was younger, told Human Rights Watch: “I would have loved to study more, to be a student, like all other… people.”
A former resident of one such institution in Kazakhstan, now 24, told Human Rights Watch that he did not get any education at all: “I didn’t go to school. They didn’t teach us anything. They won’t let me study now because of my age.” Another former resident, who is now employed in a store, lamented the lack of quality education in the special school he attended and its impact on his ability to perform his job, in particular, to count money. “I have to study numbers [now], so no one cheats me at the store. Why should we suffer because of this? They didn’t teach us anything and because of this, we suffer.”
Tanya, another former resident, told Human Rights Watch that a teacher would come to the institution several times a week when she was in the first and second grade, but then stopped coming altogether. “For some time, I studied, but then they closed [the program]. I don’t know what happened,” Tanya said. “I wanted to keep studying, but there was no chance.” Tanya said that she did not receive any formal school education since then.
Zhemis, a single-mother, placed her son, Kanat, now 16, who has cerebral palsy and uses a wheelchair, into an institution when he became too big for her to carry and care for him at home. “My son isn’t studying,” Zhemis told Human Rights Watch. “There is a social pedagogue who helps them with life skills. My son can’t see [well], so he didn’t go to school… He doesn’t get any real lessons unfortunately.”
After attempts at enrolling her children in school and accessing other services for her children failed, Antonina put her 10-year-old twins with autism into a neurological-psychiatric institution for children in Kostanay in 2015, as a “last resort,” she said. They did not receive any education in the institution:
I took them there for half a year. There was one room, for 20 children… Hyperactive children are given pills [to make them calmer]. [The children] don’t do anything. They just stare into space… They spend all day there. At maximum they go to the dining hall or toilet. There are only two caregivers... No one does any lessons with them. Maybe the psychologist for 15 minutes.
I asked them, ‘You have a sports hall and a sensory room. Why don’t you take the children there?’ They answered, ‘Because we don’t have any specialists.’
Antonina took her children out of the institution. Now they are in home education and go to a private organization for children with autism a few times a week for activities. “There is no future. There is no support. There is no support for my children,” she said.
IV. Challenges Accessing Services for Children with Disabilities
Parents interviewed for this report described difficulties accessing accurate or complete information about their children’s disabilities from state medical and service providers, under the Ministries of Health and Education and Science, respectively, problems with obtaining diagnoses of their children’s disability, and challenges accessing quality services for their children. Parents felt these obstacles set their children at a disadvantage in succeeding in school.
The Committee on the Rights of Persons with Disabilities has established that “early childhood interventions can be particularly valuable for children with disabilities, serving to strengthen their capacity to benefit from education and promoting their enrolment and attendance.” The committee has further noted that, “If identified and supported early, young children with disabilities are more likely to transit smoothly into preprimary and primary inclusive education settings.” Early childhood intervention services can include medical, psychological, educational, and other services.
The Kazakh government has acknowledged the importance of early childhood intervention in ensuring the rights of children with disabilities to inclusive education and has committed to expanding the network of Psychological-Pedagogical Corrective Offices, which provide services to children with disabilities in Kazakhstan as a component of the Ministry of Education and Science’s 2016-2019 Strategic Plan.
The Committee on the Rights of People with Disabilities has also noted the importance of access to health, appropriate treatment and care, as well as to rehabilitation services, including "health-care, occupational, physical, social, counseling and other services,” as integral to a child’s opportunity to benefit fully from education.
Problems Accessing Qualified Services
Parents described a lack of qualified services for their children with disabilities in smaller cities in Kazakhstan. Experts in Kazakhstan agree there are not enough specialists who can provide essential services to children with disabilities, for example, speech or massage therapists, developmental pediatricians, and psychologists.
A leader of a local NGO in a village in the Almaty region told Human Rights that in her experience, parents in rural areas struggle accessing quality services: “In rural areas, there aren’t trained specialists, psychologists, [or] speech therapists. There aren’t enough specialists in schools.” A representative of an NGO working on the rights of people with disabilities in Shymkent similarly said, “Remote districts are completely without access to services. It’s a big problem here.”
Togzhan sought services for her young 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. They suggested for us to go to a rehabilitation center in Astana [700 kilometers away].” Another parent in Kostanay said she had to travel to Astana, Kazakhstan’s capital, so her daughter could be examined by a psychiatrist, “Here in the city? There isn’t a child-psychiatrist.”
Serik, in Kyzylorda, a small city in southern Kazakhstan, said that he decided to send his 10-year-old son with autism to Almaty [1,150 kilometers away], where his older daughter is attending university, so his son could go to school and access services there. “I wish there was a school like they have in Almaty or Astana. I wish there was a gym here where we could go together to exercise. There are lots of things these children [children with autism] need. [But] we need facilities for that.”
Zoya, a mother of two boys with cerebral palsy, moved from rural Almaty region to the city to ensure her boys had access to services. “I moved here [to Almaty] because there are no rehabilitation facilities [in the village],” she explained. “Also, there were no state-provided services. It was better to move to Almaty where I can get services from the state [for my children], physical therapy, speech therapy, special educators, and psychologists.”
Delays in Access to State Services
In bigger cities such as Almaty or Astana, where services are available, some parents described to Human Rights Watch long delays and bureaucratic procedures that hampered their child’s access to state-provided disability support services at Psychological-Pedagogical Remedial Offices (KPPK), which they were referred to after PMPK examination. Support services include psychologists, and speech and physical therapists, for example.
Ainagul told Human Rights Watch that she and her daughter Kamila waited nine months to access state-provided services after referral by the PMPK: “They gave [us] 45 minutes with a psychologist twice a week for six months. We went for two months, our psychologist stopped working there. We waited a month, then went back to another psychologist, who also left. Then they seemed to completely forget about us.”
Aziza, who lives in Almaty with her four-year-old daughter who has epilepsy, had a similar experience regarding access to state-provided support services. After PMPK referral, “we were put on the wait list in February 2016,” Aziza said. “We waited until December. Of the four specialists they assigned for my daughter, only one was available.”
Alternatives to State Services
Increasingly in recent years, parents across Kazakhstan have mobilized and organized to provide private rehabilitation and day care centers for their children to address the gaps in their children’s education, and access to professionals such as speech therapists and psychologists. Such initiatives are important to address children’s immediate needs, but are not a sustainable alternative to government-led inclusive education and social services. Malika, a parent and the founder of one such group in Almaty, told Human Rights Watch: “[We] started this organization two years ago, to give information, to improve the lives of our children. We organized public information campaigns, banners, photo exhibitions.”
These centers provide reprieve for the parents and offer children with disabilities a way to engage with others and break the oppression of isolation. According to Asiya Akhtanova, the chair of ARDI, the association of parents of children with disabilities, who leads a rehabilitation center for children and adults with cerebral palsy in Almaty, “If not for us, they would be sitting at home.”
While such groups can help to address the lack of state services, it is the state’s responsibility to ensure that parents and children with disabilities have access to support services, including in rural areas, where such parental groups may not exist.
Insufficient or Inaccurate Information about Disabilities
International law requires states to provide adequate information to children with disabilities, their families, and caregivers about the child’s disability, each child’s unique needs, and available resources. Many parents interviewed by Human Rights Watch said that 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.
Without accurate information about disabilities, and given the broad stigma against disabilities, some mothers are left feeling as if they are “at fault.” “I felt as if I was on my own [with my son], I didn’t even know how to reach out to other parents. No one could confirm [what was the problem] or offer support. The result was that I felt like a terrible mother.”
Saule, who gave birth to a daughter with Down’s syndrome in 2013, in Kyzylorda, told Human Rights Watch:
At the birth hospital, they told me my daughter had Down’s syndrome. I asked what kind of condition is that? I’ve never seen it before. The department chief told me it was a disease and that it’s possible my daughter won’t walk and won’t speak.
Anastasia, 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 kids 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.”
V. National and International Legal Standards
In recent years, Kazakhstan has taken the important step of ratifying international human rights treaties enshrining the rights of people with disabilities, including the right of children with disabilities to inclusive, quality education. In 2015 and 2016, respectively, Kazakhstan ratified the CRPD and the UNESCO Convention against Discrimination in Education. Kazakhstan has been a party to the Convention on the Rights of the Child (CRC) since 1994.
International Legal Standards
Inclusive and Quality Education
The CRPD Committee calls inclusive education “a fundamental right of all learners.” Inclusive education is the practice of educating children with disabilities in mainstream schools in their neighborhood with the provision of supplementary aids and services where necessary, to allow children to achieve their full potential. The CRPD requires states to make education inclusive at all levels. As detailed by the United Nations High Commissioner for Human Rights (UNHCHR), inclusive education has been acknowledged as the most appropriate means for governments to guarantee universality and nondiscrimination in the right to education. It involves the recognition of a need to transform the cultures, policies, and practices in schools to accommodate the differing needs of individual students and an obligation to remove barriers that impede that possibility.
An inclusive education system should focus on the full and effective participation, accessibility, attendance, and achievement of all students, especially those who are at risk of being excluded or marginalized. The education system should provide an individualized educational response, rather than expecting the student to fit the system.
Inclusion is different from segregation, an education approach where children with disabilities are placed in separate classrooms in mainstream schools or in educational institutions that are separate from the mainstream education system. Inclusion is also different from integration, where children are placed in mainstream schools as long as they can fit in these schools and meet their demands.
Beyond their accessibility obligations, governments need to ensure that the form and substance of education, including curricula and teaching methods, are of “good quality” and meet minimum education standards. The aim is to ensure that “no child leaves school without being equipped to face the challenges that he or she can expect to be confronted with in life.” According to the UN Committee on the Rights of the Child, an education of good quality “requires a focus on the quality of the learning environment, of teaching and learning processes and materials, and of learning outputs.” The system should establish high expectations for all learners, without discrimination.
To realize the right to inclusive education, the CRPD requires states to ensure “reasonable accommodation,” defined as the “necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case” that would ensure people with disabilities the enjoyment of all human rights and freedoms on an equal basis with others.
The government should provide reasonable accommodations to support individual learning. This can include assistive devices, such as hearing aids; braille textbooks, audio, video, and easy-to-read learning materials; instruction in sign language for children with hearing disabilities; structural modifications to schools, such as ramps for children in wheelchairs; and additional staff to assist children with self-care, behavior, or other support needed in the classroom.
A government’s obligation to provide reasonable accommodation is “enforceable from the moment an individual with an impairment needs it in a given situation… in order to enjoy her or his rights on an equal basis in a particular context.”
State parties also have an obligation to ensure that education of people with disabilities, especially those who are deaf and blind, is provided “in the most appropriate languages and modes and means of communication for the individual.” The CRPD also requires that state parties promote the availability and use of assistive devices.
An important part of ensuring reasonable accommodation is training teachers, school administrators, and education officials in methods to support persons with disabilities. According to the CRPD, such training should include “disability awareness and the use of appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials to support persons with disabilities.” It is crucial that teachers are given adequate support so that they can provide accommodations to students with disabilities.
International law prohibits discrimination on the basis of disability, which is defined under the CRPD as any “distinction, exclusion or restriction… which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms.” In terms of education, the CRPD requires that “people with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability.” In the international human rights framework, disability is viewed as an interaction between individuals and their environment, and the emphasis is on identifying and removing discriminatory attitudes and barriers in the environment.
This obligation of nondiscrimination applies to both public and private actors, and at all levels of education, including higher education and vocational training. The CRC guarantees the right of the child to education on the basis of equal opportunity, directed to the “development of the child’s personality, talents and mental and physical abilities to their fullest potential.” The CRC also prohibits discrimination of any kind against children, including on the basis of disability.
National Legal Standards
The rights of children with disabilities in Kazakhstan are variously enshrined in the constitution and the following laws: On the Rights of the Child, On Education, On Social and Medical Pedagogical Corrective Assistance for Children with Disabilities, On Social Protection of People with Disabilities, and On Special Social Services.
Following ratification of key international treaties, Kazakhstan in 2016 established a Children’s Rights Ombudsman, although since its establishment, the institution has come under criticism for its lack of independence, and the first person to hold the position, Zagipa Balieva, was dismissed from the post by order of the president in mid-2018.
Laws regulating access to inclusive education appear to be contradictory. Kazakhstan’s Law on Education guarantees the right of all children to attend primary and early secondary school in their neighborhoods and establishes compulsory education through upper secondary school. The law does not specify a PMPK evaluation is prerequisite to enroll in a mainstream school. Yet, Kazakhstan’s Law on Social and Medical-Pedagogical Corrective Support for Children with Disabilities specifies that children with disabilities are “guaranteed free primary and secondary education in special schools or in mainstream schools with a conclusion of the Psychological-Medical-Pedagogical Consultation [emphasis added].” A government official told Human Rights Watch that the laws are not contradictory, as “the Law on Education allows parents to pick the type of school [special or mainstream], but not the form of education [home education or enrollment in school] (emphasis added).”
Article 3 of the Law on Education identifies the “right of everyone to receive a quality education” and “the accessibility of education at all levels, taking into account the intellectual development, psychophysiological and individual characteristics of each person” as being fundamental educational principles. The Law on Social Protection of Persons with Disabilities prohibits discrimination on the basis of disability.
In July 2018, the government adopted amendments to the Law on Education that better facilitate access of children with disabilities to mainstream schools, including to “create special conditions taking into consideration the individual characteristics of children with particular learning needs” and that children with “particular learning needs,” a designation that includes children with disabilities, can study in their neighborhood schools.
The amendments also specify that children with “particular learning needs” can go to preprimary school taking into “consideration the findings and recommendations of the Psychological-Medical-Pedagogical Consultation.”
In a November 2018 letter to Human Rights Watch, the Ministry of Labor and Social Protection cited legal reforms the Ministry of Education and Science had undertaken toward ensuring inclusive education, in particular, the introduction of “a provision to give priority admission at preschool organizations to children with particular learning needs; [and] issuing a basic secondary education certificate for graduates with particular learning needs.” The certificate would allow children with disabilities to continue their education beyond the ninth grade.
As mentioned above, the Kazakh government has committed to ensuring that 70 percent of schools in Kazakhstan will be inclusive by 2019. In September 2018, the prime minister called for a high-level inter-ministerial meeting to discuss recommendations for implementing inclusive education. In its 2014-2018 Strategic Plan, which preceded the adoption of the 2016-2019 Strategic Plan, the Ministry of Education and Science acknowledged the need for physical infrastructure, equipment, and psycho-medical and pedagogical support to facilitate inclusive education in schools. The government’s commitment to ensuring “the realization of the equal rights of all people to a quality education” was earlier articulated in policy note adopted in 2015 by the Ministry of Education and Science entitled “Conceptual Approaches to Developing Inclusive Education in the Republic of Kazakhstan.” While this document identifies key mechanisms for the realization of the goals stated therein and expected results, the Ministry of Education and Science has not announced a national road map or implementation plan outlining concrete infrastructure or teacher training initiatives, for example.
To the Kazakh Government
- Guarantee access to quality inclusive education for children with disabilities on an equal basis with others, including through the provision of reasonable accommodations, in line with the government’s international obligations.
- Commit to transforming Kazakhstan’s education system to make it genuinely inclusive across the country.
- Amend legislation to define inclusive education in a way that is consistent with the CRPD and the Committee on the Rights of Persons with Disabilities’ General Comment No. 4 on inclusive education, in particular, by:
- Including a provision that mainstream schools will provide reasonable accommodations and quality education on an equal basis with others to children with disabilities, including access to individualized support measures.
- Making clear that inclusive education is a right for every individual, regardless of disability, that cannot be denied based on a medical or other assessment by state bodies.
- Adopt a national action plan on inclusive education that delineates the responsibilities of the Ministry of Education and Science, Ministry of Labor and Social Protection, and Ministry of Health at a national, regional, and district level to ensure a coordinated approach to guaranteeing quality, inclusive education.
- Work with donors, NGOs, and other groups working in the education sector to ensure effective collaboration and use of donor resources, and to avoid overlap.
- Commit to transforming the PMPKs, in particular:
- Introduce provisions in law that make explicit that children are not required to have a PMPK conclusion to attend mainstream schools.
- Ensure, and enforce through legal provisions, that assessments are solely for the purpose of determining the individual reasonable accommodations and support which a child will receive to ensure inclusive quality education.
- Require all PMPK staff to attend disability rights and inclusive education training.
- Ensure that the conditions under which children are assessed are disability friendly, humane, and are carried out with a view of the best interests of the child.
To the Ministries of Education and Science and Labor and Social Protection
Access to Inclusive Education
- Implement quality, inclusive education at all levels, including for children with high support needs and reinforce the compulsory nature of education for all children.
- End any formal or informal practice that trumps the compulsory nature of education and permits school and other officials to rely on an assessment by the PMPK to deny children access to inclusive education in mainstream schools.
- Ensure maximum inclusion of children in mainstream classrooms and avoid segregation of children with disabilities in special schools, home education, or in separate classrooms within mainstream schools.
- Ensure that children with disabilities and their parents have real choices, and access to adequate comprehensive information, regarding their educational path, especially at key transition stages (e.g. preschool to primary; primary to lower secondary; upper secondary to higher education). Children and parents should not feel compelled to opt for special schools or home education due to failures of mainstream schools to provide reasonable accommodations for children.
- Ensure education for students with disabilities, particularly for deaf, blind or deafblind students, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development, in line with the CRPD.
- Ensure students with disabilities are supported to enroll in vocational training and universities once they have completed secondary education or vocational schools. Support young adults with disabilities who are not able to enroll in formal education to access life-long learning opportunities for skills acquisition, including through adult education programs.
- Throughout the development and implementation of policies and programs on inclusive education, consult regularly and meaningfully with children and other persons with disabilities and disabled persons’ organizations.
- According to international practices and standards, collect data on the total number of children with disabilities in the country, including the number of children of compulsory school age in education and out of school, disaggregated by disability-type, location, and other demographic markers. Formulate educational policies, plans, and programs based on data.
Reasonable Accommodations and Individualized Approach
- Ensure reasonable accommodations for children with disabilities, based on individual learning requirements. These can include braille textbooks and other materials; digital, visual, audio, easy-to-read learning materials, and assistive technology; instruction in sign language for children with hearing disabilities; and aides to assist students with behavior, self-care, learning support, and other considerations.
- Ensure all schools are physically accessible, including by ensuring schools have ramps, entrances to buildings, classrooms and toilets, and that they comply with Universal Design standards, namely, the design and composition of an environment so that it may be accessed, understood, and used to the greatest extent possible with adaptation.
- In line with the CRPD Committee General Comment No. 4, promote instruction and a teaching culture that moves away from a one-size-fits-all approach to learning towards one that can adapt to different learning abilities and styles; meets the diverse needs of all learners; recognizes that each student learns in a unique manner; and identifies and builds on the strengths and talents of each individual.
- Ensure an adequate number of trained teachers and other professionals, including aides for students. Allow for the flexible employment and training of aides as necessary for inclusive education, including as a component of reasonable accommodation.
- Ensure that home education is exceptional and used only for short periods, and then only when absolutely necessary for health reasons, rather than a practice to further segregate children with disabilities.
Training and Awareness Raising
- Embed in core teacher training and professional development training for all current teachers and student teachers courses on inclusive education for future school, vocational school, and higher education educators based on the human rights model of disability, including on means and formats of communication, educational techniques and materials to support persons with disabilities; incorporate practical training, including with and by people with disabilities.
- Provide this training also to school administrators, principals, vice principals, other education officials, and orphanage and institution directors and staff.
- Train preschool staff to identify development delays so that children can receive adequate support from a very young age.
- Support the development of a culture of inclusive education in schools and society at large. Specifically, conduct awareness raising campaigns to combat stigma and prejudice, and offer classes on disability awareness and hold activities for children with and without disabilities together, with the aim of developing respect for people with disabilities.
- Continue and expand initiatives to educate children with disabilities and parents about children’s right to education, including providing detailed information about the scope of the authority of the PMPK.
- Collect and make publicly available statistics on the number of children and adults with disabilities in various parts of the education system in Kazakhstan; include annual attendance numbers and rates in all categories of schools, vocational colleges, and higher educational institutions, as well as children studying at home, disaggregated by age, gender and type of disability.
To Kazakhstan’s International Partners
- Urge the Kazakh government in private and in public meetings to ensure the rights of people with disabilities, including the right to inclusive, quality education for children with disabilities, and support the government in its efforts to do so, including through financial and technical means.
- Share models of best practice with Kazakhstan on guaranteeing quality, inclusive education for children and adults with disabilities on an equal basis with others, at all levels of the educational system.
- Consistently consult with and ensure disabled persons’ organizations, as well as NGOs working on disability rights and inclusive education, are included in and benefit from donor support.
- Ensure that all development projects implemented in Kazakhstan adhere to international accessibility and Universal Design standards and are inclusive of and accessible to persons with disabilities.
- Support the government to improve systematic data collection on children with disabilities by age, gender, disability, and educational access.
This report was researched and written by Mihra Rittmann, senior researcher in the Europe and Central Asia Division of Human Rights Watch. Jane Buchanan, Disability Rights Division deputy director at Human Rights Watch conducted and participated in a significant portion of the research interviews. Anahit Chilingaryan, Armenia research assistant at Human Rights Watch and Aichurek Kurmanbekova, assistant in the Bishkek office, also participated in some research interviews.
The report was edited by Jane Buchanan. Hugh Williamson, director of the Europe and Central Asia division reviewed the report. Elin Martinez, researcher in the Children’s Rights Division of Human Rights Watch, provided specialist review. Aisling Reidy, senior legal advisor, provided legal review, and Tom Porteous, deputy program director, provided program review.
Research assistance was provided by Vera Dimoplon and Aizhan Kapysheva, former interns in the Europe and Central Asia Division of Human Rights Watch. Gainee Nurkabaeva provided essential translation.
Production assistance was provided by Catherine Pilishvili, Europe and Central Asia division associate, Rafael Jimenez, graphic designer, Fitzroy Hepkins, administrative manager, and José Martínez, senior coordinator.
Human Rights Watch is sincerely grateful to the many children and parents who shared their experiences and perspectives with us. We also thank all the activists and organizations in Kazakhstan who provided their invaluable expertise and guidance as we were carrying out the research for this report. We especially thank Aliya Arkharova and Aigul Shakibaeva for their significant inputs and assistance. We are deeply grateful.