If you are a child living with a disability in Russia, there is a significant chance that you will not receive a quality education or even any education at all. Many of those who do receive an education are segregated from other children at special schools for children with disabilities, often far away from their families and communities. Others are isolated in their homes with visits from teachers only a few times a week. The tens of thousands of children with disabilities living in state orphanages face particularly severe obstacles to obtaining any formal education.
The Russian government is currently undertaking substantial legal and policy changes with goals of guaranteeing access to a quality education for all children, including children with disabilities. For these policies to succeed, the changes should fundamentally transform the educational approach by ensuring that children are not excluded from the general education system on the basis of disability and that 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. The government should ensure the provision of reasonable accommodation in the forms of supplementary aids and services to allow all children to achieve their full potential, based on the needs of the individual child.
Inclusive education has been acknowledged 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.
Russian law provides children with disabilities and their parents with the choice to study in a mainstream school, a specialized school for children with disabilities, or at home, through distance learning programs or visits from teachers. In practice, however, Human Rights Watch’s research found that children with disabilities often attend specialized schools because mainstream schools do not have the reasonable accommodations that the children need, such as wheelchair ramps, assistive technology, or teachers’ aides. Parents also reported feeling compelled to send children to specialized schools because officials evaluating their children’s disabilities recommended this type of school, or because mainstream school staff denied children admission on the basis of their disability. Infrastructural barriers prevent some children from attending schools in their communities, including a lack of accessible transportation or ramps and elevators in apartment buildings. Upon reaching adulthood, many children with disabilities face obstacles in enrolling and studying at universities or gaining meaningful professional skills to secure employment.
This report is based on over 200 interviews with children and adults with disabilities, their families, and children’s and disability rights activists, as well as visits to 10 state institutions where children with disabilities live. Human Rights Watch also met and corresponded with officials from the Ministry of Education and Science and met with officials from the Ministry of Labor and Social Protection.
Children with disabilities and activists whom Human Rights Watch interviewed stated that children with disabilities and their parents in recent years have faced a range of barriers to mainstream schools, including a lack of ramps or lifts to help them to enter and move within buildings; a lack of accommodations for people with sensory disabilities, such as large-print textbooks for students with low-vision; and a lack of teachers and other school personnel with training to provide for the diverse learning needs of students, including students with developmental disabilities such as Down syndrome.
Some children face discrimination in seeking to access schools. This includes refusal of admission based on assumptions that children with disabilities would, for example, be unable to learn, be unsafe around other children, or engage in disruptive behavior. Russian law guarantees everyone the right to education; amendments to take effect in January 2016 ban disability-based discrimination in all spheres of life. The government should take proactive steps to ensure that school officials and others do not deny children access to education based on their disabilities.
The Russian education system includes many specialized schools designated for children with disabilities, such as schools for children who are blind or deaf, or for children with developmental disabilities such as Down syndrome. Many children with disabilities and their parents prefer these schools to mainstream schools because they tend to have more teachers and other staff with specialized training to work with children with disabilities and more accommodations to meet their specific educational needs. However, because mainstream schools usually lack these accommodations or may not admit children with disabilities, attending a specialized school is often not the result of a meaningful choice.
Specialized schools are often located far from children’s communities. As a result, many children with disabilities board either part-time or full-time at these specialized schools, returning home on weekends or less frequently, as their families’ schedules and financial capacity allow. Those children who went to specialized boarding schools told Human Rights Watch that this resulted in unwanted separation from their families and communities. Children and adults with disabilities and their parents told Human Rights Watch that some specialized schools offered a more limited curriculum than mainstream schools.
Under Russian federal law, parents of children with disabilities have the option of applying to the Russian government for their children to study at home, with visits from local teachers several times per week to review course material. This option may be useful on a temporary basis when children are unable to attend school, such as during a period of severe illness, for example. However, activists, children with disabilities, and parents whom Human Rights Watch interviewed reported that many children with disabilities studied at home because they lacked accessible schools in their communities, or because inaccessible housing and transportation made it difficult or dangerous for children to leave their homes for school each day. Most children and young people with disabilities who studied at home told Human Rights Watch that their interactions with teachers were limited and that they felt isolated from their peers.
Lack of accurate information on children’s right to inclusive education may also impede children’s access to quality schooling in the communities in which they live. Human Rights Watch interviewed some parents who noted that state officials responsible for determining which types of services and accommodations children should receive based on their disabilities informed them that their children with disabilities should be placed in specialized schools or study at home. Although these recommendations are not legally binding, parents often do not receive sufficient information on the right to inclusive education and understand the recommendations to be requirements.
Tens of thousands of children with disabilities in Russia currently live in closed state orphanages. Most of these children receive little or no education due to the lack of pedagogical staff among caretakers, the children’s general isolation from their surrounding communities, as well as medical diagnoses in the past of certain children as “uneducable.” Amendments to the Law on Education which went into effect in 2013 eliminated the possibility of a child being determined as “uneducable,” mandating that all children should receive education. While this is an important step towards ensuring education without discrimination on the basis of disability, many children who cannot walk or talk, whom orphanage staff relegate to separate “lying-down rooms,” have typically received no education or stimulation at all. Other children with disabilities in orphanages may receive limited education, usually in the form of some individualized instruction from orphanage staff, and in a few cases, may attend nearby specialized schools.
To reverse these long-standing practices and severe restrictions on education for children in orphanages, the Russian government needs to make ambitious and concerted efforts. In the short term authorities should ensure the provision of quality education for these children. In the longer term, the government should develop a plan to end the use of institutions, to promote family-based care for all children, and to facilitate their living and studying in the community, in accordance with Russia’s commitments under the UN Convention on the Rights of Persons with Disabilities (CRPD).
Limited opportunities for quality primary and secondary school education, and physical and communication barriers in Russia’s universities and professional institutes make obtaining higher education difficult for many young adults with disabilities. The onus often falls on these students to arrange accommodations with professors and other students, such as by moving classes to first floors or securing palantype systems that translate speech into text, for example. Russia’s specialized college system for students with developmental disabilities offers little in the way of professional education or skills training, focusing instead on crafts workshops such as ceramics and drawing. According to several disability rights activists whom Human Rights Watch interviewed, Russia does not have a federally mandated system to ensure that instructors at these colleges and other educational institutions have appropriate pedagogical training to adjust their curricula to students’ diverse learning needs. Even among those who graduate, many young adults with disabilities face limited prospects for securing jobs and living in their communities.
Russia’s international obligations, including under the CRPD, require that individuals with disabilities have access to locally-based, high-quality inclusive primary and secondary education in the communities where they live, as well as access to tertiary education, vocational training, and adult education on an equal basis with others. The CRPD requires the government to provide reasonable accommodations, or the “necessary and appropriate modification and adjustments” 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 CRPD also calls on states to enable people with disabilities to learn life and social development skills to facilitate their full and equal participation in education and as members of the community.
As detailed by the United Nations High Commissioner for Human Rights, inclusive education has been acknowledged as the most appropriate means for governments to guarantee universality and nondiscrimination in the right to education. Inclusive education is the practice of educating students 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. 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.
The Russian government has taken a number of important steps recently to ensure that all children with disabilities receive education and expand inclusive education in many schools across the country. Through the federal “Accessible Environment” program to increase accessibility in different spheres of public life, some mainstream and specialized schools across Russia have implemented accommodations to make the schools more accessible for children with disabilities.
Officials from the Ministry of Education and Science told Human Rights Watch in June 2015 that the government has begun to implement new standards for primary education for children with disabilities, including specific standards for children with intellectual disabilities, in over 120 schools in numerous regions across Russia. Every child with a disability will have an individual educational program which can be revised with specifications for accommodations, programs and resources for each child. The standards will be mandatory for implementation for all children as of September 2016.
While the standards are an important step in creating a more consistent education system for children with disabilities, the standards require that children be categorized according to disability and one of four levels of education, according to their perceived ability to learn. The ministry and regional and local education officials should ensure that educational programs and accommodations are based on the particular learning needs of each student, rather than a categorization and hierarchy of cognitive skills.
In June 2015, the Minister of Education publicly reported that the number of children in inclusive education has gone up over 15 percent in the last three years. Ministry of Education officials also told Human Rights Watch that as part of its inclusive education initiatives, the ministry is creating “base inclusive schools” in all regions of Russia, and that each region is required to make 20 percent of its schools inclusive by the end of 2015. The primary structure for these initial base inclusive schools is to make each school accessible for children with a specific type of disability, with one school accepting children who are deaf, another accepting children with autism spectrum disorder, and so on.
Depending on its implementation, this system of base schools could perpetuate the segregation of children with disabilities by type of disability instead of encouraging inclusion. Some children with certain disabilities and their families may choose a setting where children can learn skills directly associated with their disabilities. For example, sign language in the case of deaf children or braille for children who are blind or have low vision. However, as it carries out its inclusive education strategy, including the development of “base schools,” the government should prioritize provision of individualized support measures in environments that maximize academic and social development of each child, consistent with the goal of full inclusion, as set forth in the CRPD.
A number of Russian nongovernmental organizations (NGOs) have contributed significantly to the promotion of inclusive education including by providing information, awareness-raising, training and other support to children, teachers, and parents in mainstream schools, and by offering direct services to children and adults with disabilities, and their families, to enable people with disabilities to study in mainstream institutions and receive job training.
To ensure protection of the right of children and adults with disabilities to inclusive education, the Russian government should amplify its efforts to ensure persons with disabilities can access inclusive primary, secondary, vocational, and higher education on an equal basis with others. This should include children and adults with developmental or psychosocial disabilities, and all persons with disabilities living in state orphanages. The government should strive to end frequent segregation of children with disabilities in orphanages, separate schools, classrooms, and at home. This should include a long term plan to move children out of orphanages and into family-based care. While some children with disabilities and their parents may choose specialized schools or home schooling or distance learning, the choice should be meaningful and not a result of obstacles to inclusive education in local schools. The authorities should also expand current projects to develop standards and professional training guidelines on inclusive education for instructors at all levels of the educational system. Programs to develop a culture of inclusive education in schools, including classes on disability awareness and activities for children with and without disabilities together, in collaboration with disabled persons organizations (DPOs) and other disability rights groups, are also essential. In addition, the government should also fully realize its efforts to make communities accessible and inclusive to all persons with disabilities.
To the Russian Government, in particular the Ministry of Education and Science
- Guarantee access to education for all children with disabilities, including children with intellectual disabilities and children living in state institutions, on an equal basis with others, in line with the CRPD.
- Ensure that programs to develop inclusive education achieve maximum inclusion in mainstream schools and avoid exclusion, including the segregation of children with disabilities in separate classrooms. While some children may require particular individual or small group coursework, these classes should maximize children’s academic and social development and not serve to isolate them. Children should be maximally included in the school environment together with other students.
- Ensure that the categorization system established under the federal standards on primary education for children with disabilities are not implemented in such a way that children with certain types of disabilities receive less than full access to the general curricular program. The standards and their implementation should emphasize the learning needs of each student, rather than a hierarchy of cognitive skills.
- Enforce children’s right to a quality education and inclusion in the community, as guaranteed in the CRPD, including by working with municipal authorities and other authorities to ensure that children are not restricted to distance learning or home study due to obstacles in their apartment buildings or other housing (such as a lack of elevators or ramps), a lack of transportation to and from local schools, or other barriers. These obstacles should not be used as justification to determine that it is impossible for a child to study in a mainstream school.
- Expand and implement the “Road Map” for promoting inclusive education in the general education system, including by ensuring that Centers of Psychological-Pedagogical, Medical, and Social Assistance serve as resource centers to general education schools in the implementation of inclusive education, as established by the Law on Education, article 42, part 4.
- Support the development of a culture of inclusive education in schools. Specifically, conduct 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 to develop clear standards specifying curricular and other types of reasonable accommodations to make inclusive education accessible to children and adults with disabilities, including persons with developmental or psychosocial disabilities, at all levels of the education system. Ensure that these standards cover the full range of academic as well as vocational learning needs of students with disabilities, with the ultimate goal of enabling these students to live independently and be included in their communities. Thoroughly consult with representatives from disabled persons organizations (DPOs) including persons with intellectual or developmental disabilities, and other experts regarding the minimum requirements to establish an inclusive educational environment.
- Ensure an adequate number of teachers and other professionals, including special educational assistants for teachers, to provide comprehensive support of students with disabilities. Ensure that core teacher training for all current and student teachers includes inclusive education and practical skills including on the use of appropriate communication, educational techniques and materials. Provide continuous trainings, support, and mentoring of teachers and assistants, including through resource centers and professional exchanges.
- Provide instructors and administrators in state vocational and professional institutes and universities with professional development opportunities on implementation of reasonable accommodations for students with disabilities. Ensure that institutions of higher learning have adequate resources and staff to accommodate people with disabilities.
- Ensure adequate budget allocations and funding for all educational institutions to guarantee inclusive education. This should include sufficient funds to provide reasonable accommodations for children with disabilities, based on their individual educational needs. Develop mechanisms whereby regional governments can apply for additional federal funding to meet reasonable accommodations needs.
- Continue and expand initiatives to educate children with disabilities and parents about children’s right to education, including to inclusive education. This should include detailed information about the scope of the authority of the Psychologo-Medical-Pedagogical Commission (in Russian, ПМПК) which evaluates children with disabilities and makes recommendations for the child’s education, including that the conclusions of the PMPK are recommendations and not binding and that parents and children have the option of appealing the PMPK results to a regional PMPK and to court.
- Children with disabilities and their parents should have meaningful choices regarding their educational path. School and local government officials should facilitate opportunities for children with disabilities enrolled in specialized schools and studying at home to interact with their peers without disabilities, including in local schools and preschools.
- Ensure that the Federal Service for Oversight in Education and Science [RosObrNadzor], together with other agencies, implement a thorough and transparent monitoring and evaluation system to hold all authorities responsible for running schools and ensuring access to education, including officials responsible for state orphanages for children with disabilities, accountable for progress made towards inclusive education. Monitoring should include both scheduled and unscheduled inspections.
- Develop Universal Design for accessible environments in mainstream schools for children with various types of disabilities. Audits (assessments) of accessibility in schools should be conducted with the participation of people with disabilities.
- Throughout the process of reforming laws and policies and in the process of monitoring, actively seek and include the input of children and adults with disabilities, including those currently and previously in institutional care, as well as parents of children with disabilities, DPOs, experts and NGOs working in the field of children’s rights and disability rights.
To the Ministry of Labor and Social Protection
- Introduce amendments to the Federal Law “On the Social Protection of the Disabled” in the following ways:
- Expand article 3.1 on prohibiting disability-based discrimination to include a clause stating that discrimination includes failure to provide reasonable accommodations to persons with disabilities, in accordance with international law. Include a definition of “reasonable accommodation” and thresholds for its application at all school levels, in line with the CRPD, as well as in transportation and other essential services.
- Expand article 19 on education for persons with disabilities to include provisions ensuring that all children and adults with disabilities and their families have information on the right to inclusive education at the level of primary and secondary schools, vocational/professional institutes, and universities.
- Expand article 16 on responsibility for failure to ensure access to communication and information media and infrastructure; include specific provisions for enforcing articles 14 and 15 on accessibility for persons with disabilities to information and infrastructure, respectively; and establish federal responsibility to monitor compliance with these articles.
- Develop a detailed plan to enforce the federal ban on disability-based discrimination, to include strict prohibitions and clear punishments for denying children with disabilities admission into mainstream schools. Create a disability-accessible and child-friendly procedure for filing education discrimination complaints, and ensure that children with disabilities and their parents are aware of this procedure.
- Expand efforts to prevent segregation and support families to care for children at home, and where families cannot care for children, significantly expand efforts to provide alternative care within the community in the family setting.This should include:
- A meaningful time-bound plan to end the institutionalization of children, especially infants separated from their parents, with extremely limited exceptions.
- Measures to return children with disabilities to their birth families and actively develop adoption and fostering programs of children with disabilities.
- Accessible, quality community-based support and services for these children and families.
To the Ministry of Labor and Social Protection and the Ministry of Education and Science
- Continue to collaborate closely regarding immediate steps to ensure all children living in state orphanages receive a quality education as well as short-term plans to ensure these children can attend schools, ideally mainstream schools.
- In mainstream and specialized schools, institutes, and universities, establish and fund programs to help young people with disabilities to transition from school to employment. Include information on their rights to equal working conditions as well as practical guidance in seeking jobs.
- Collect and make publicly available statistics on the number of children and adults with disabilities in various parts of the education system in Russia, as total figures and as percentages of Russia’s entire populations of children and adults with disabilities as well as rates of graduation and drop out. Include annual attendance numbers and rates in all categories of schools and higher educational institutions, as well as children studying at home, disaggregated by age, gender and type of disability.
- Expand collaboration with and support to DPOs and other disability rights groups to conduct nationwide social advertising campaigns that highlight the diverse personalities, learning potential, and social contributions of persons with disabilities, including persons with intellectual or developmental disabilities, and psychosocial disabilities. Include as target audiences parents of children with and without disabilities, children with and without disabilities, as well as school staff and government officials.
- Review and consider the approaches and recommendations on inclusive education from the CRPD Committee in its concluding observations on countries which have come under its review to date; the Office of the United Nations High Commissioner for Human Rights’ “Thematic Study on the Right of Persons with Disabilities to Education,” and the United Nations Children’s Fund (UNICEF)’s “The Right of Children with Disabilities to Education: A Rights-based Approach to Inclusive Education.”
To the UN Special Rapporteur on Education and the UN Special Rapporteur on the Rights of Persons with Disabilities
- Request an invitation to carry out a mission to Russia to evaluate the government of Russia’s implementation of its international human rights obligations on the right to education and the rights of persons with disabilities.
To Russia’s International Partners
- Raise the concerns detailed in this report about the right of children with disabilities to inclusive education in all bilateral and multilateral dialogues with Russia, and proactively look for opportunities to advance the recommendations formulated to address them.
- Urge the Russian government to ensure the rights of people with disabilities, including the right to inclusive education, and support the government in its efforts to do so, including through financial, technical, and other means. Share models of best practice with Russia on guaranteeing accessibility to inclusive education for children and adults with disabilities on an equal basis with others, at all levels of the educational system.
- Continue to consult with and support DPOs and NGOs working in the sphere of disability rights and inclusive education for children and adults with disabilities.
- Ensure that all development projects implemented in Russia comply with minimal international accessibility and universal design standards and are inclusive of and accessible to persons with disabilities.
The field research for this report was conducted between October 2012 and February 2015 across nine regions of Russia (city of Moscow, Moscow region, city of St. Petersburg, Leningrad region, Sverdlovsk region, Buryatia, Karelia, Pskov region, and Krasnodar region).
These regions were selected because of their diversity and because of initiatives under way in those regions. In St. Petersburg and Leningrad region, we were interested in measures city and regional governments had taken to increase access to education for children with disabilities in institutions. We chose Krasnodar region, Sverdlovsk region, Buryatia, Karelia, the city of Moscow, Moscow region, and Pskov region because of various innovative measures that nongovernmental organizations (NGOs) in these regions are taking to support accessibility for children with disabilities to education, among other public services.
This report is based on 221 interviews, both face to face in Russia and by telephone before and after field research. Among those interviewed were 46 children ages five to 17 with psychosocial, developmental, physical, or sensory disabilities; 46 young adults with disabilities between the ages of 18 and 29; parents; local disability and children’s rights activists, including representatives of disabled persons organizations; teachers and administrators in mainstream schools and specialized schools for children with disabilities; and staff of state orphanages where children with disabilities live.
All interviews were conducted in Russian or English. For each person interviewed, we explained our work in age-appropriate terms. Before each interview, we informed potential participants of the purpose of the research and asked whether they wanted to participate. Testimony from some of these interviews was also used in Human Rights Watch reports Barriers Everywhere: Lack of Accessibility for People with Disabilities in Russia (2013) and Abandoned by the State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages (2014).
Most persons over age 18 in the report are identified by pseudonyms in order to protect their privacy and confidentiality, unless they requested to be identified by their real names. Human Rights Watch has used pseudonyms for all children interviewed for this report as well as their parents, except where indicated.
Human Rights Watch researchers also met with officials from the Ministry of Education and Science and the Ministry of Labor and Social Protection.
Human Rights Watch also sent two letters to the Ministry of Education. Where relevant the responses from the Ministry of Education to both letters (reproduced in Appendix 1) are reflected in this report.
As part of this research, we also reviewed a number of Russian government policies and laws and relevant reports from United Nations agencies, DPOs and NGOs.
I. National and International Legal Standards
National Legal Standards
Under Russian law, all people have a right to an education. The law requires regional and city-level governments to create the conditions for a quality education for all without discrimination towards persons with disabilities, including through the organization of inclusive education. The law defines inclusive education as the “provision of equal access to education for all students, given a diversity of special educational needs and individual capabilities.” The law also states the education of children with disabilities can be organized in different ways, including: together with other learners, as well as in separate classes, groups or in separate educational organizations (specialized schools). The law specifies accommodations to facilitate education for children with disabilities to include: special education programs, specialized textbooks, assistive technical devices, and the provision of aides, accessible physical infrastructure, and other conditions.
The Russian law “On the Social Protection of the Disabled” guarantees persons with disabilities access to free preschool, school-level, professional, and higher education, and obligates regional and city-level governments to create the conditions for people with disabilities to access these forms of education. The law also guarantees accessible infrastructure and information to people with disabilities, including, for example, housing, public transport, and scholarly books written in braille or audio recorded. Discrimination based on disability in all sectors will be illegal under national law as of January 2016, as a result of November 2014 amendments to the Russian federal law “On the Social Protection of the Disabled.”
International Legal Standards
Nondiscrimination and Equal Access
International law prohibits discrimination on the basis of disability, which is defined under the UN Convention on the Rights of Persons with Disabilities (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.”This obligation of nondiscrimination applies to both public and private actors, and at all levels of education, including higher education and vocational training. The UN Convention on the Rights of the Child (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.”
Under the CRPD, all persons with disabilities have the right to accessible infrastructure or services open or provided to the public. They also have the right to live independently and be included in their communities, through equal access to community services and facilities that are responsive to their needs, among other provisions. The CRPD also prohibits discrimination; denial of reasonable accommodations on the basis of peoples’ disabilities also constitutes discrimination. The CRC also prohibits discrimination of any kind against children, including on the basis of disability.
The CRPD requires states to make education inclusive at all levels.As detailed by the United Nations High Commissioner for Human Rights, inclusive education has been acknowledged as the most appropriate means for governments to guarantee universality and nondiscrimination in the right to education. 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. 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.
The United Nations Children’s Fund (UNICEF) has found that inclusion “requires responding to the diversity of needs among all learners, through increasing participation in learning, cultures, and communities, and reducing exclusion from and within education.” Inclusive education is not only relevant for the education of students with disabilities, but should benefit all children and be “central to the achievement of high-quality education for all learners and the development of more inclusive societies.” Both UNICEF and the international disability rights NGO Inclusion Europe have published guides on key areas for reform and best practices in inclusive education.
Inclusive education should be distinguished from two other approaches to educating people with disabilities. One is segregation, where children with disabilities are placed in educational institutions that are separate from the mainstream education system. Another is integration, where children are placed in mainstream schools as long as they can fit in these schools and meet their demands. Unlike inclusive education, integration tends to regard the disabled child rather than the school as the one who needs to change. Inclusion focuses on identifying and removing the barriers to learning and changing practices in schools to accommodate the diverse learning needs of individual students.
The affirmation of the right to inclusive education is part of an international shift from a “medical model” of viewing disability to a “social model.” A couple of decades ago, disability was considered a defect that needed to be fixed. Disability today 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.
While the CRPD advocates for the fulfillment of “the goal of full inclusion,” it also states that the primary consideration should be the “best interests of the child.” In some circumstances, such as when an inclusive education system is not yet functional or necessary accommodations cannot be reasonably provided, it may be more effective for the child to be educated in special education settings for part or all of the time. The CRPD emphasizes the voice and choice of children with disabilities. It is important that the government make efforts to ensure mainstream education is inclusive and accessible for children with disabilities, and make special education available so that children with disabilities have meaningful choices.
To realize the right to inclusive education, the CRPD requires states to ensure “reasonable accommodation,” defined as the “necessary and appropriate modification and adjustments” that would ensure people with disabilities the enjoyment of all human rights and freedoms on an equal basis with others. A government’s duty 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.”
Examples of reasonable accommodation in the context of education include holding classes on the ground floor; providing note-takers; allowing for additional time for note-taking or during exams; priority seating for students to minimize distractions and enable them to see and hear the teachers; providing assistive devices such as magnifying equipment or tape recorders; providing sign-language instructors; reading aloud written materials for students with visual impairments; and structural modifications to schools, such as ramps.State parties also have an obligation to ensure that the 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.
II. Obstacles to Accessing Education
Figures concerning the number of children with disability not receiving an education vary widely. According to an independent disability rights activist and one disability rights NGO, up to 45 to 60 percent of the estimated 540,800 school age Russian children with disabilities do not receive any formal education. The Ministry of Education and Science reports that in 2015 approximately five percent of children with disabilities were not receiving education. Children and adults living with disabilities in Russia encounter numerous obstacles to getting a quality, inclusive education, at all levels of the education system, from preschool through higher education. Children and adults living in state institutions may receive little or no education at all. Although the Russian government has taken some important steps to begin to develop inclusive education, including for children living in institutions (see below: Government Response), as the sections below detail, there are a range of challenges to be addressed, including with regard to physical infrastructure, training of educational staff, development and implementation of relevant curricula and adaptive technologies, and discriminatory attitudes, among other issues.
Physical and Other Barriers in Mainstream Schools
Children with disabilities encounter various barriers to enrolling in and receiving a quality education in mainstream schools, including inaccessible physical infrastructure; lack of curricula and materials appropriate for their disabilities, such as adequate printed classroom materials for children who are deaf or hard of hearing; and lack of large-print textbooks and braille for children who are blind or have low vision. Other obstacles include a lack of staff qualified to teach children with disabilities and discrimination on the part of school officials or others. In many cases, lack of accessible transportation or other obstacles in the community prevent children with disabilities from easily attending mainstream schools.
For example, Stanislav K., a 10-year-old resident of Orekhovo-Zuyevo, a city north of Moscow, who has cerebral palsy, told Human Rights Watch that his elementary school lacks elevators or wheelchair lifts for children to reach classrooms on upper floors. During the winter of 2010, Stanislav K. broke his arm, making it difficult and dangerous for him to climb the school stairs in order to attend his classes on the fourth floor of the building. As a result of this and the fact that the school did not change Stanislav K.’s class location to the first floor, he missed 11 months of school until his arm was fully healed. During the time that he missed school, teachers came to his home several hours per week to go over his lessons. When asked how he felt studying at home, Stanislav K. told Human Rights Watch that he missed certain subjects, such as mathematics and physical education, which were absent from his home curriculum. “I learn more at school,” he said. “I also missed my friends at school.”
Oleg P., the father of 3-year-old Matvei P. who uses a wheelchair, described a similar situation with the preschool in his neighborhood:
Technically speaking, schools are not ready to accept children with disabilities. The teachers said [about Matvei], “We’ll take him. We even built a ramp.” They had built a ramp. But you go up the ramp and cross the threshold to the school only to see a staircase in front of you leading to the next floor. What use is the ramp if there is a staircase inside?
In some cases, the only choice for children with disabilities who wish to attend mainstream schools is to do so with the assistance of parents. In Moscow, one mother of a 10-year-old girl who uses a wheelchair quit her job as an accountant in order to spend the school day with her daughter because the school lacks an entrance ramp and an elevator or wheelchair lift inside. She explained to Human Rights Watch, “I need to be there to make sure she gets up and down the stairs safely.”
In Karelia region, Human Rights Watch interviewed Natalia and Sergei S., the foster parents of Katya S., a 6-year-old girl with a physical disability. Because of a lack of physically accessible preschools and schools, Natalia must accompany her foster daughter to the mainstream preschool in their community, in order to help her to move about the premises, in the absence of an accessible ramp or elevator between floors.
Concerns Regarding Specialized Schools
Russia’s extensive parallel system of specialized schools for children with disabilities includes schools for children with multiple disabilities, as well as schools specialized by disability, such as those for students with developmental disabilities. These schools include modified curricula that often exclude subjects such as physics and literature, which are available in mainstream schools. Specialized schools are sometimes organized as boarding schools (shkoly-internaty). Students who do not have accessible schools in their communities often attend these boarding schools either full-time or part-time in order to access education with the accommodations that they need.
Some activists, people with disabilities, and parents with whom Human Rights Watch spoke expressed a preference for specialized schools because in their view, these schools are often better prepared to educate and provide a safe and accepting learning environment for children with disabilities. These schools may have more and better trained teachers and other specialists such as speech therapists and psychologists; accommodations such as provision of sign language as a language of instruction; and equipment such as ramps. For example, Tatiana O., a children’s and disability rights activist in northwest Russia, told Human Rights Watch: “Parents should have the option of sending their children to specialized schools, because these might be the only places where children get the assistance they need. Also, parents and children in mainstream schools are not always ready to accept these children.”
Some parents of children with disabilities expressed fear that their children would be intimidated or bullied if they sent them to mainstream schools. Zoya S., the mother of 17-year-old Alexei S., told Human Rights Watch that she is satisfied with the education her son receives at his specialized school in Moscow because “he learns skills there: reading, Russian, math, biology, physical education.” During the interview with Human Rights Watch, Alexei S. smiled and pointed at a class picture from his school, indicating several friends whom he still sees occasionally. “It was a friendly environment,” Zoya S. added. “I don’t know what he would do at a mainstream school. I worry that the other children would bully him, call him names.” However, Alexei S.’ specialized school is located an hour and a half away by car. Zoya and Alexei S. spend at least three hours daily traveling to and from school by car.
Larisa K., the mother of a boy with autism in Buryatia region, told Human Rights Watch in December 2012, “Sergei attends a specialized school because the government pays for special education teachers there who help him to learn social skills. Those specialists are not available in mainstream schools here.” According to disability rights activist Svetlana N., who has worked with federal policymakers and school administrators in the Moscow region and elsewhere in Russia for over 15 years, the Russian federal government provides more funds to specialized schools than to mainstream schools in order to implement accommodations such as teacher’s aides.
Limited Academic Offerings in Specialized Schools
Some people with disabilities and disability rights activists reported to Human Rights Watch that the academic offerings and quality of education in the particular specialized schools they attended were not consistent with the quality and range of subjects provided in the mainstream school system. This may impact children’s ability to enter universities or learn professional skills that would facilitate securing meaningful employment and to live independently. For example, Ivan K., a 17-year-old boy with a psychosocial disability, attended a specialized school near his home in Moscow. He told Human Rights Watch that he enjoyed reading about Russian history in his free time, and wanted to be a history professor. However, the curriculum in his specialized school did not include advanced history or other subjects, such as advanced mathematics, which would prepare him to take entrance exams required to enter any Russian university.
Similarly, Polina S. told Human Rights Watch that the specialized school in Moscow where she sent her 17-year-old son, Alexei S., who has Down syndrome, for four years did not include the full range of subjects and basic life skills that she believed he needed in order to work and carry out everyday tasks such as shopping. Polina S. said, “He was doing different kinds of arts and crafts such as drawing and folding envelopes, but he wasn’t learning math, reading, or other basic subjects.”
Separation from Families and Communities
Many children with disabilities live separately from their families in specialized boarding schools, which are often the only option for students to study with the accommodations that they may need. Some children will spend the full week attending school and living in the institution and then travel home on the weekends, if circumstances, including distance, accessible transportation, and their family’s financial capacity, allow. However, studying in boarding schools requires that students leave their families and their immediate communities, which some found challenging. As noted above, the CRPD also guarantees individuals with disabilities, including children, the right to live and study in their communities.
For example, 17-year-old Fedya P., who lives and studies part-time at a boarding school for children who are hard of hearing in Buryatia region, told Human Rights Watch that he likes his teachers and the other students, but misses his family. “There are no schools like this for me in my town,” Fedya P. told Human Rights Watch. He also reported having difficulty returning home for weekend visits with his parents, because city buses and mini-buses lack accommodations for people who are hard of hearing. He said, “There are no digitized signs indicating where the buses are stopping. It’s often night time when I travel. I sometimes find myself stranded in the wrong place.” Yuliana G., a 28-year-old woman in Moscow with low vision, told Human Rights Watch that she would have preferred to study at a mainstream school if one had been available that offered accommodations for her low vision. Instead, she studied in a specialized boarding school for students with disabilities. “I had friends from the courtyard where I lived, whom I missed when I went away to school. How do you keep a friendship if you don’t live in the community? I missed my family, too,” she told Human Rights Watch.
Concerns Regarding Home Study
Under Russian federal law, parents of children with disabilities have the option of requesting that their children complete a program of home study “in the event that education in general educational programs within educational facilities is impossible,” including when illness or inaccessible schools or other infrastructure such as housing prevents children from attending school. Teachers from local specialized or mainstream schools should visit children several times per week, for a few hours each time, to assist with completing assignments. As described in more detail below, the Ministry of Education has significantly expanded distance learning programs for children who study at home, through computers and internet connections whereby students participate in classrooms or one-on-one with teachers.
Disability rights activist Natalia T. told Human Rights Watch that the federal law allowing for home study can be important and necessary in temporary circumstances when students are physically unable to attend school, for example when they are ill or weak from chemotherapy treatments. However, the children with disabilities and parents interviewed by Human Rights Watch who studied at home did so for lack of other options or because they felt pressured by medical professionals to opt for this type of education. Parents and children also reported less time with teachers and peers than they would otherwise have received in school, which results in isolation from the community and an inferior quality of education.
For example, 14-year-old Timofei T., who uses a wheelchair, and his mother Elena T. told Human Rights Watch that Timofei studies at home because inaccessible housing and public transportation make it difficult for him to travel to the specialized school closest to their Moscow apartment. Timofei T. reported that he is able to meet with teachers only for a total of 10 hours each week and that he does not study the same breadth of subjects as his neighbors who attend mainstream schools. Other children and young people with disabilities reported that teachers spent most of their visits not actively teaching, but waiting while the students completed assignments independently.
Lack of Adequately Trained Staff in Mainstream and Specialized Schools
Many teachers currently lack the knowledge and training on how to adapt their curricula and teaching methods to the learning needs of children with disabilities, especially children with intellectual or developmental disabilities. As described in more detail below, the Ministry of Education has begun training teachers on the new education standards for children with disabilities.
Anastasia D., the mother of 15-year-old Dasha D., who has Down syndrome, told Human Rights Watch that Dasha’s mainstream elementary school in Moscow initially had adequate accommodations for children with developmental disabilities. The school had partnered with a local disability rights NGO that provided curricular guidance to staff and awareness-raising for students without disabilities in order to incorporate students with disabilities. Dasha D. and her classmates with disabilities studied certain subjects, such as mathematics and reading, with a teacher who had training in special needs education, and studied other subjects such as drawing and physical education alongside students without disabilities. In late 2014, the teacher left the school and the new teacher lacked experience working with students with disabilities. According to Anastasia D., Dasha D.’s interest in her studies and her reading and writing abilities declined. The school also lacks specialists such as speech therapists to help Dasha D. to maximally develop and participate in school. The family must locate and pay these specialists themselves.
Kostya K., 16, who has a developmental disability, told Human Rights Watch that the mainstream school in his city in Karelia region did not have teachers and teachers’ aides who were trained to accommodate lessons to his learning needs. “I liked studying with the other guys [without disabilities],” Kostya K. said of the one year he spent at the school. “But I did not understand what the teachers were saying,” he added. He now attends a specialized school, where the curriculum focuses on arts and crafts such as drawing and ceramics. Kostya K. told Human Rights Watch that he missed the opportunity to learn subjects such as physics and Russian literature, which are absent in his specialized school.
As noted above, some parents interviewed by Human Rights Watch choose specialized schools for their children because more pedagogical and other staff tend to be available to address the learning and developmental needs of children with disabilities. However, even teachers in some specialized schools sometimes lack the training necessary in order to provide accessible education to children. These teachers and other specialists may also be too few in number to provide children with the care that they need.
For example, Elizaveta R., a teacher at a specialized boarding school for students with developmental disabilities in Karelia region, told Human Rights Watch that she is unable to do her job because she lacks training and curricular guidance in order to teach children elementary skills such as identifying colors and basic mathematics. “It is as though I am trying to just keep children safe in one room rather than teach them,” Elizaveta R. told Human Rights Watch.” She added, “And in the evenings, I leave, and there are not even pedagogical staff to help them with their homework.” As a result, children are unable to complete homework assignments for class. Elizaveta R. stressed the need both for professional training for herself, and for more pedagogical staff at the school rather than just nighttime caretakers.
Discrimination by School Officials
Children with disabilities may also face discrimination by school officials in mainstream schools who are reluctant or refuse to admit children with disabilities into their schools, on the basis that these children’s appearance or behaviors will frighten their classmates without disabilities, that children will be unsafe attending mainstream schools, or that children with disabilities will be unable to behave properly or to learn. As discussed below, students with disabilities may also face discrimination by administrators in specialized schools, particularly if children come from state orphanages. As noted above, discrimination based on disability is illegal under international law, and will be illegal under national law as of January 2016, as a result of November 2014 amendments to the Russian Federal law “On the Social Protection of the Disabled.”
For example, in 2012, Maria F., the mother of a 5-year-old girl with cerebral palsy in Orekhovo-Zuyevo, a town in Moscow region, sought a mainstream preschool for her daughter Galina F. However, the preschool director allowed Galina F. to attend for only two to three hours per day and only on condition of a written recommendation from Galina F.’s pediatrician. Maria F. said, “I had to explain to the doctor that she is not aggressive. He demanded to know who will take responsibility for Galina F.’s safety and the safety of the other children.” After Maria F. agreed to take on this responsibility herself, Galina F. was permitted by her doctor and by the preschool director to attend the school. However, Maria F., a single mother, reported that attending preschool with her daughter prevented her from continuing to work at her accounting job, imposing financial hardship on her, her daughter, and her elderly mother, whom she also supports.
In another example, Kristina R. tried to enroll her 8-year-old daughter, Nika R., who is hard of hearing, in the mainstream school close to their home in Sochi, rather than send her to a specialized school farther away. School officials initially refused to admit Nika R., claiming that she would be unable to understand the material. School officials admitted Nika R. only after she demonstrated that she was able to read lips. Nika R. told Human Rights Watch, “I like going to school with the other kids. My favorite subjects are drawing and history.”
Lack of Accessible Transportation and Other Obstacles in Communities
For many children with disabilities whom Human Rights Watch interviewed, lack of accessible transportation and housing present significant obstacles to attending school in their communities. For example, in Moscow region, one woman told Human Rights Watch that her 14-year-old son Anton B., who has a physical disability, studies at home because there is no ramp in his apartment building and no public transportation in the town where they live. Anton B. told Human Rights Watch, “It’s boring and isolating to be at home without the other kids.”
Irina A. reported a limited number of accessible buses passing through their district, and a lack of a consistent schedule for their arrival. As a result, Irina A. and her 10-year-old daughter, Erika, who uses a wheelchair, can often spend over an hour waiting for a bus to travel to the mainstream school that Erika attends. Erika told Human Rights Watch, “I could do more things if I spent less time trying to get [to school] each day. I would be able to swim and play with my sister.”
Lack of access to public transportation for people with physical and sensory disabilities complicates travel home for students with disabilities and reinforces their need to board at schools. For example, 26-year-old Maria D., a Sochi resident with a physical disability, did not study at a specialized school available to children with disabilities in part because she would have had to board there in the absence of accessible transportation. Neither she nor her mother was willing to live separately from one another.
Lack of Accurate Information for Children with Disabilities and their Families
The government in many cases has not done enough to ensure that children with disabilities and their parents have accurate information on children’s right to attend mainstream schools. Children with disabilities typically appear before a local government Psychologo-Medical-Pedagogical Commission (in Russian, ПМПК) which has the authority to evaluate a child’s physical, psychological and behavioral characteristics and make recommendations for the child’s education and services that would best facilitate his or her development. The commissions consist of a pediatrician, a psychologist, a special education teacher, a social worker, among other medical and education specialists. Formally, the recommendations of the PMPK are not binding or obligatory. However, many parents reported that, in the absence of alternative information, they felt compelled to follow the commission’s recommendations, often leading to the children’s segregation.
For example, children with disabilities and their parents as well as disability rights activists told Human Rights Watch that PMPKs routinely recommended that children study only in specialized schools or at home. Reasons officials gave parents for such recommendations included that children would be unable to understand the material in mainstream schools, that they would be bullied by other students in mainstream schools, or that children’s health was too fragile to leave home at all. These messages, coupled with the lack of information about children’s right to inclusive education, meant that many parents enrolled their children with disabilities in specialized schools or kept them at home, convinced that there were no alternatives.
In one example, Maria F., the mother of a 5-year-old girl with cerebral palsy in Moscow region, mentioned above, told Human Rights Watch that the commission completing her daughter’s state disability forms recommended that Galina attend a specialized preschool for children with disabilities. Maria F. protested, arguing that her daughter was capable of studying at a mainstream preschool. Maria F. described the reaction of one doctor on the commission: “He told me that the other children would trample and demolish her, and that the teachers would not be willing to take responsibility for my daughter’s safety.” Maria F. ultimately sought to enroll her daughter in a specialized preschool. She decided to advocate for her daughter’s admission to an inclusive preschool only when the specialized preschool failed to admit her daughter on the basis that there were no physical therapists who could help her daughter to develop.
In some cases, parents themselves may limit their children’s opportunities to receive an education, which suggests a need for more information for parents and others on children’s right to receive the accommodations they need to secure a quality education. For example, Inna V. told Human Rights Watch that her 8-year-old daughter Nadezhda V., who has a developmental disability, had not yet been to school. Officials on the local PMPK told Inna that every child has a right to an education, and recommended that Nadezhda V. study at a specialized school. Inna V. had neither taken Nadezhda V. to school nor requested home instruction. Inna V. described her fears to Human Rights Watch: “It’s too much for her to be around so many people. She gets tired, nervous, and upset. She could get sick.” Although Inna V. noted that Nadezhda enjoys being with children and activities such as physical therapy at a local rehabilitation center run by an NGO, she also stated, “Besides, my child can’t do anything [to learn].”
Lack of Education or Quality Education for Children in State Orphanages
Although all children with disabilities in Russia are entitled to education, in practice, children with disabilities living in state orphanages face far fewer possibilities of accessing any formal education, including in the specialized school system. Many caretakers in state orphanages have no pedagogical training. According to one children’s and disability rights activist, Anna A., who advocates for the rights of children with disabilities living in closed state orphanages, “Many children with disabilities living in state institutions do not receive any formal schooling. And I’ve never heard of children with disabilities from state orphanages attending mainstream schools.” Few children with disabilities living in state orphanages attend schools in their communities, whether specialized or mainstream schools, according to Anna A. and several other children’s rights activists in Russia whom Human Rights Watch interviewed.
Tens of thousands of children with disabilities in Russia live in state institutions. Many are left by their parents in orphanages as newborns, after state doctors pressure parents to relinquish custody, on the basis that children will not develop or that parents will be unable to care for them. Once in institutions, some children, particularly children with disabilities deemed by state officials to be especially “severe,” were confined to separate rooms or wards known as “lying-down rooms.” The majority of children whom Human Rights Watch met in “lying-down rooms” received no education at all on the grounds that they were not capable of developing or learning, or that leaving their cribs to engage in activity would endanger children’s health. Until recently, officials responsible for evaluating children’s disabilities had labeled these children as “uneducable,” a designation that was eliminated from the law on education in 2013, thereby guaranteeing all children, regardless of disability, access to education.
Children’s rights activist Yana D. worked in two specialized state institutions in northwest Russia, for children with developmental disabilities from 2006 through 2008, and in a third from 2008 through 2009. She reported that two to three “lying-down rooms” in each of these institutions had only one institution staff member per 13 children and that the staff in these rooms lacked pedagogical training. As a result, Yana D. said, “other than having basic needs such as diaper changes taken care of, children had no individualized attention. They also never left the rooms.” Yana D. did not say whether staffing and care practices in these institutions had changed in recent years. Human Rights Watch has found the practice of confining children to lying down rooms discriminatory and has called on the Russian government to abolish the practice.
In the 10 institutions for children with disabilities that Human Rights Watch visited in 2012 and 2013, some children who were not confined to “lying down rooms” received some limited (usually individualized) education, in which pedagogical staff visited them for several hours each week and facilitated activities such as learning to identify colors or playing in “sensory rooms” containing colorful and multi-textured toys and varied sounds in order to stimulate children’s cognitive development.
Lack of Access to Specialized and Mainstream Schools
According to children’s and disability rights activists whom Human Rights Watch interviewed, children with disabilities who live in closed state orphanages rarely attend specialized schools. One disability rights activist whom Human Rights Watch interviewed in December 2014 reported that some children with disabilities living in Moscow state orphanages had begun to attend specialized schools. However, she stated, “I don’t know of anywhere in Russia where institutionalized children with disabilities attend mainstream schools.”
Activists and orphanage staff who have tried to place children with disabilities in community-based schools reported significant obstacles. For example, one children’s rights activist who runs a volunteer program at a state orphanage for children with various disabilities in northwest Russia indicated that the two exits in the orphanage lack wheelchair accessible ramps and handrails, preventing children with limited mobility from leaving to attend school. “Transportation is another problem. There are not enough low-floored buses to bring all of the children to school every day,” she told Human Rights Watch.
Another volunteer at the same orphanage told Human Rights Watch that 100 of approximately 400 children with disabilities living in the orphanage study in local specialized schools. However, because of stigma towards institutionalized children from other children’s parents and school staff, school officials required the children from the orphanage to study in separate classrooms and on different schedules. While the children are able to access more education than they would have in the orphanage, the format of placing children in separate classrooms within a mainstream school does not constitute inclusive education.
Barriers to Higher Education and Vocational Education
Following monitoring of higher education institutions in many regions of Russia, the Civic Chamber reported in 2015 that only 12 of more than 100 institutions of higher education inspected met the requirements for admission and training of people with disabilities, and only 50 percent of people with disabilities enrolling in higher education graduate. One Civic Chamber expert noted that young people with disabilities often “are forced to pick a higher education institution judging not on where they would be interested to study or what major they would like to [pursue], but on whether this or that university could provide the conditions necessary for their education.”
Human Rights Watch interviews with young people with disabilities and with disability rights activists also found that many people with disabilities face serious obstacles to obtaining higher and vocational education. These obstacles include lack of adequate preparation for higher or vocational education in mainstream and specialized schools (as described above); lack of adequate professional skills training within specialized colleges for people with developmental disabilities; instructors in mainstream universities and specialized colleges who lack training on how to adapt their instructional style to the learning and accessibility needs of students; and lack of accessibility accommodations. As a result, many young people with disabilities are unable to secure jobs that they need in order to live independently and be fully included in their communities, as mandated by the CRPD.
Particular Obstacles for Children Living in Orphanages
The lack of education in state orphanages has a severe impact on the ability of children and young adults leaving these institutions to study in schools and higher education institutions. Upon reaching age 18, children age out of state orphanages. In the vast majority of cases, orphanage staff transfer these young adults to closed adult institutions [in Russian, Psycho-Neurological Internat] typically without offering them the option of applying for state-subsidized housing, vocational or higher education, or other benefits such as public transport, to which young adults leaving the orphanage system are entitled by law. Some adult institutions have begun to implement federal guidelines for vocational education, such as by running craft workshops, for example.
For children who may have the opportunity to live in the community, the lack of quality education that would help facilitate their entry into universities, as well as insufficient state-sponsored assisted living facilities or other programs to support community-based living in most areas are also significant obstacles. For example, Ekaterina F., a 21-year-old woman with a physical disability who was living in a state orphanage in St. Petersburg, told Human Rights Watch, “I may have an opportunity to live in the city because social workers are trying to arrange an assisted living apartment for me and some of the other guys [in the orphanage]. I’d like to study to be a hairdresser, but first I have to see if I can get my freedom [to live in the city]. But it’s not certain that a professional institute would let me in, since I’ve had so little schooling.”
Lack of Reasonable Accommodations in Mainstream Universities and Institutes
Young people with physical or sensory disabilities who gain admission to universities often encounter the same barriers as children encounter in mainstream schools, such as the absence of elevators, accessible ramps, braille signs and large print textbooks for students with limited vision. Twenty-nine-year-old Yulia S., who uses a wheelchair, attended university in Moscow, but said that she had difficulty attending: “I had to arrange with classmates to help me enter the building and carry me up and down the stairs, because the building has no elevator,” she told Human Rights Watch. Professors and classmates sometimes informally agreed to hold classes on the first floor of the building when scheduling permitted. Mikhail S., a 25-year-old man with a physical disability in Moscow who graduated from a large state university, said, “Some subjects [such as mathematics] were simply off limits to me because they were taught in buildings that lacked elevators and because professors could not move classes to the lower floors. So I studied what I could. This limited my choices, of course.”
People who are deaf and hard of hearing reported a lack of adequate visual material and support to help them understand lectures and class discussions. Some people who are hard of hearing whom Human Rights Watch interviewed emphasized the need for equipment such as palantype systems, speech-to-text reporting systems that produce captions for hard of hearing and deaf people to read. For example, in St. Petersburg, Inna I., a 28-year-old woman who is hard of hearing, told Human Rights Watch that at the professional institute where she studied marketing, there were no palantype systems. “As a result, I had to request that each professor provide lecture notes or at least enunciate very clearly towards the front of the room so that I could catch what he was saying. This was not always easy.” Screen readers, computer programs that read online text and e-mails for people with low vision or who are blind, and large-print textbooks and signs are not readily available everywhere, although they are available in some university libraries.
Colleges for People with Developmental Disabilities
Russia has a system of colleges that people with developmental disabilities can attend after finishing specialized schools. Like many specialized schools, they may provide only limited opportunities to develop vocational or other skills necessary to secure meaningful employment. For example, Svetlana E., whose adult daughter Elena has Down syndrome, told Human Rights Watch, “These colleges are essentially holding places for people like Elena. They may do ceramics or dance, but they do not even learn the basic arithmetic that is needed to go to the store and make sure the vendor is giving you exact change.” Because Elena had not been able to obtain higher education and still had no educational options available to her that would teach her marketable job skills, she continued to live with her mother, who worried about what would happen to her daughter when she died.
Moscow-based disability rights activist Anatolii T., who advocates for the rights of people with developmental disabilities to independent living and accessible education, told Human Rights Watch that while specialized vocational colleges offer classes in crafts, computer skills, and manual skills such as book binding, and can help people with intellectual and developmental disabilities to develop their cognitive skills, the vast majority of colleges and other vocational and higher education institutions in Russia are inaccessible to people with these disabilities because they are not adapted to their diverse and distinctive learning needs. Instructors at vocational colleges may not consistently have the necessary skills and preparation to meet the specific and diverse learning needs of people with disabilities. According to Anatolii T., “There is no federally mandated curricular system to ensure that instructors in colleges have guidelines for teaching young people with developmental disabilities. As a result, whether students receive any accessible instruction depends on the college and the instructor.” Experts from Russia’s Civic Chamber have noted the importance of professional education in order to facilitate gainful employment for people with disabilities, which in turn helps facilitate their participation in and inclusion in society.
Human Rights Watch did not interview people with developmental disabilities who attended universities or technical institutes other than these colleges specialized for their disabilities.
III. The Way Forward: Promising Practices
A number of Russian disabled-people’s organizations and non-governmental organizations (NGOs) have contributed significantly to the promotion of inclusive education including by providing information, awareness-raising, training and other support to children, teachers, and parents in mainstream schools, and by offering direct services to children and adults with disabilities, and their families, to enable people with disabilities to study in mainstream institutions and receive job training. Often these programs are done in collaboration with local authorities. Through their efforts some children and adults with disabilities who may have never had the opportunity to attend inclusive schools now have been able to do so.
Examples of Progress
In Buryatia region, activists with a local disability rights NGO successfully advocated for an accessible wheelchair ramp at a mainstream school’s entrance. As a result, several children with physical disabilities began to attend the school, accessing classrooms on the ground floor.
In Moscow, a regional NGO provides early childhood educational services to young children with Down syndrome, in addition to psychological consultations with parents. The NGO also shares expertise with mainstream state schools on how to better accommodate the learning needs of children with developmental disabilities. Through the efforts of this organization, some mainstream schools and preschools in Moscow have begun to accommodate children with disabilities into their classrooms. This NGO also has provided early childhood education to hundreds of children with Down syndrome to prepare them for entry into both specialized and inclusive schools. A representative from this organization told Human Rights Watch in February 2013, “The system is not perfect. In many of these schools, parents still need to attend school with children. But 15 years ago, a child with Down syndrome had almost no chance of attending a mainstream school. Things have changed for the better.”
In the few cases that Human Rights Watch documented when children with disabilities attended mainstream schools alongside other children, children and their parents spoke about the benefits that inclusive education provided children. For example, Anastasia D., mentioned above, the mother of a 15-year-old girl with Down syndrome named Dasha D., who studies at a mainstream Moscow school, described the family’s reaction after Dasha began attending the school in 2008: “We were so happy that Dasha was happy at school, that she worked hard, got good grades, and loved her teachers. She found a common language with her teachers and with all the other children, who really liked her.”
In Karelia region, a local children’s rights NGO provides direct services such as psychological consultations, recreational activities, tutoring, and material support to children living in state orphanages, and to foster and adoptive parents of these children. This organization’s goals include ensuring the basic human rights of children in orphanages and facilitating the transition to family life for as many of these children as possible.
Natalia S., the foster mother of a 6-year-old girl with cerebral palsy named Katya S., who attends a mainstream preschool, told Human Rights Watch that this NGO had helped her to advocate for her foster daughter’s admission to a mainstream preschool and to obtain the necessary equipment to enable her to walk, such as good quality orthopedic shoes. Natalia S. spoke of the benefits of inclusive education for Katya S.: “When we took Katya S. home, she could not talk, walk, or sit up, and the orphanage staff said she would never learn to. Now she can do all of these things. Partly it’s because she is interacting with the other kids [without disabilities]. She watches them and she probably thinks, ‘Why not me too?’”
In Moscow region, a local NGO provides job training and placement services for children and young adults with disabilities, including those with developmental and psychosocial disabilities. Training focuses mainly on communications skills such as those needed to participate in a job interview and communicate on an everyday basis with colleagues. Staff from this organization cited numerous examples of young adults who had gotten jobs with their assistance, including a young man with Down syndrome who bakes rolls in a bakery and a young woman with autism who works in the archives of a library.
The Russian government at the highest levels has called for guarantees of accessibility to quality education and inclusive education for children with disabilities. Presidential Order on the National Strategy on Children (2012-2017) specifically calls for the protection of the rights of children with disabilities, in line with international standards, including the rights to full participation in society and quality education at all levels. The order also calls for the development of legal mechanisms to guarantee children with disabilities the right to inclusive education in their communities. The Ministry of Education and Science has stated that education of people with disabilities “is one of the priority areas for the education system of the Russian Federation.”
The Ministry of Education and Science and others have been taking a number of measures in order to facilitate inclusive education for children and young adults with disabilities. In June 2015, Russia’s Minister of Education and Science, Dmitri Livanov, publicly stated that the total number of children with disabilities educated through inclusive means has risen by 15.5 percent in the last three years. Human Rights Watch could not independently verify this number. The Ministry of Education and Science’s initiatives include, inter alia: the development of new curricular standards; the adaptation of physical infrastructure in schools, universities, and other public buildings; and training program for pedagogical personnel and other government officials responsible for implementing inclusive education, among other measures. There have been initiatives to expand information about inclusive education and education for children with disabilities. It is not within the scope of this report to analyze all of these programs and initiatives in detail. A few key initiatives are discussed here.
Officials from the Ministry of Education and Science told Human Rights Watch in June 2015 that the ministry had begun to implement recently-adopted standards for primary education for children with disabilities and standards for education of children with intellectual disabilities in 124 schools in 27 regions for children in the first grade. The standards include categories of nine types of disabilities, with four levels of education (two levels for children with intellectual disabilities). The standards require that each child receives an individual educational program (IEP), which can be revised with specifications for accommodations, programs, and resources for each child. Each school is responsible to find the funds and organize these services. The standards are applicable in mainstream and specialized schools and will be mandatory for implementation for all children in first grade as of September 2016, and will be introduced in each of the higher grades in subsequent years. The standards are to be a “living document,” subject to revision, as the Ministry of Education and Science reviews its effectiveness in practice, through feedback from teachers, experts, and others. 
While the standards are an important step in creating a more uniform system of delivery of education to children with disabilities, the standards require that children be categorized in one of four groups (two groups for children with intellectual disabilities), depending on the “level of manifestation of disability in the learner.” The Ministry of Education and Science and regional and local officials should ensure that educational programs and accommodations are based on the learning needs of each individual student, rather than on a hierarchy of cognitive skills.
The federal “Accessible Environment” program, established in 2011, aims to increase accessibility for people with disabilities across different spheres of public life, including in schools, vocational institutes and higher education. The program functions in certain Russian regions on the basis of co-financing with the federal government. In October 2014, the federal government resolved to extend its Accessible Environment program through 2020.
Within the Accessible Environment program, the government is establishing “base schools” in every region, with a goal of making a minimum of 20 percent of mainstream schools accessible to children with disabilities by the end of 2015, on the basis of co-financing between regional governments and the federal government. The schools should be universally accessible and equipped, with transportation provided by the schools. The federal government is also supporting training for teachers on inclusive education. Each base school will be specialized to be inclusive for children with a specific type of disability, such as children who are deaf, children with autism, etc. The Accessible Environment program also includes among its goals to expand the number of preschool programs “with an accessible environment for inclusive education of children with disabilities” from 15.8 percent in 2015 to 20 percent in 2020.
While the expansion of inclusive education is notable and an important step towards realizing the rights guaranteed under the CRPD, the authorities should ensure that children with disabilities are not educated exclusively in “specialized” classrooms in mainstream schools, but are maximally included into the general system of education, together with other children, and given the necessary accommodations to participate in mainstream classrooms.
The Ministry of Education and Science is expanding distance learning programs which currently reach almost half of the 40,000 children in Russia who study at home. In distance learning programs children are connected via the Internet to schools or can be connected to teachers in centers located in each region of Russia established to support distance education. A combination of federal and regional funding supports these programs. Some children receive their full education through distance learning, some study part time, and some receive supplementary lessons. A small percentage of these children go on to higher education. As part of a meaningful inclusive education strategy, the government should evaluate each individual child’s situation and strive to reduce barriers that may compel some children to study at home rather than at school, such as problems of accessibility in housing or transportation, as well as facilitate accommodations to enable children’s inclusion in schools. The authorities should also ensure that all children receive the same quality of education.
The federal program “Development of Education” (2013-2020) establishes a series of goals and indicators to increase access to preschool, primary, and higher or vocational education to all children in Russia, including children with disabilities. The program includes among its goals for 2020 that “Each child with a disability will, by choice, receive quality general education either in the form of distance, specialized, or inclusive education, as well as support in [developing] their professional orientation.” The program has been critiqued by some disability and children’s rights activists for potentially overemphasizing distance learning for children with disabilities, at the expense of more accessible schools and communities that would enable genuine choices.
Higher and Professional Education
The government has also undertaken the creation of “base” vocational institutions with adapted education and living conditions for people with disabilities and has established requirements for all higher vocational institutions to create an accessible environment and support employment placement for all graduates, among other measures. The “Accessible Environment” program articulates a goal of increasing the number of institutions of higher vocational education with an accessible environment for inclusive education of people with disabilities from 2 percent in 2015 to 20 percent in 2020. In a May 2013 letter to Human Rights Watch, the Ministry of Education and Science stated that students with disabilities who gain admission to institutions of higher education have the right to free “special textbooks,” study aids, and sign language translation services for people who are deaf. The ministry named a number of additional measures it is taking to facilitate accessible professional education for persons with disabilities, including recommendations to all educational institutions geared towards creating more disability-accessible infrastructure.
Andrea Mazzarino, consultant with the Europe and Central Asia Division of Human Rights Watch, researched and wrote this report. Jane Buchanan, associate director of the Europe and Central Asia Division edited the report and researched and wrote some parts of the report. Tanya Cooper, Russia researcher for Human Rights Watch, also conducted research for the report. Shantha Rau Barriga, director of the Disability Rights Program, and Elin Martinez, researcher in the Children’s Rights Division, each reviewed the report and provided specialist commentary. Aisling Reidy, senior legal advisor, provided legal review, and Tom Porteous, deputy program director, provided program review.
Production assistance was provided by Kathryn Zehr, associate in the Europe and Central Asia Division; Kathy Mills, publications specialist; and Fitzroy Hepkins, production manager. Dariya Golubkova and Talia Dessel, interns in the Europe and Central Asia Division, provided invaluable background and legal research for this report.
Human Rights Watch is deeply grateful to all those who helped us conduct our research in Russia. We are especially grateful to all of the children and young people with disabilities and their families who spoke to us about their experiences.
March 21, 2014
127994, Moscow, GSP-4, Ilinka, d. 21
Maksim Anatolyevich Topilin
Minister of Labor and Social Protection
Dear Maksim Anatolyevich,
Thank you for agreeing to meet with us in September to discuss improving access to employment for people with disabilities.
Human Rights Watch has conducted interviews with children with disabilities, their families, and staff of state institutions for children with disabilities in several cities in Russia. Based on our interviews with the abovementioned groups as well as disability and children’s rights experts, we have identified a number of concerns. As you are aware, Russia ratified the Convention on the Rights of the Child and Convention on the Rights of Persons with Disabilities. The purpose of this letter is to inquire about additional information concerning the policy and procedure of the Ministry of Labor as concerns defending the rights of children with disabilities, and to share some of our concerns with you and learn about the ways in which the Ministry of Labor may be addressing these issues, so that we can reflect information and perspectives from the Ministry of Labor in any forthcoming reporting. We have also written to other ministries regarding concerns that relate directly to issues within their competencies.
Specifically, people with whom Human Rights Watch spoke reported the following concerns:
Linkages to biological families. Human Rights Watch research identified concerns regarding the ability of children with disabilities to remain with their biological families rather than be placed in institutions, or to maintain contact with their families in the event that they have been placed in institutions. In this regard, we would welcome information from the Ministry of Labor concerning the following:
- Does staff of the Ministry and institutions under its supervision provide parents of children with disabilities information regarding the rights of children, including children with disabilities, such as the right to rehabilitation, for example? What kind of information does the Ministry share with parents regarding the nature of the disability (ies) identified in a child, how the disability relates to the development of the child over his or her lifetime, and potential opportunities for rehabilitation? How does it distribute this information?
- Do processes exist through which children in institutions or who may be recommended for placement in institutions can express their views in matters related to their participation in family life and their placement in institutions? What are these processes and how are they implemented?
- What is the Ministry of Labor’s role in overseeing or collaborating with local guardianship and custody organs, including in determining whether family separation lies in a child’s best interests? Does the Ministry collaborate with local guardianship and custody organs to oversee children’s placement in families, whether placement involves reunification with children’s biological relatives or in foster or adoptive families? If so, how does it collaborate with these organs?
- Ministry of Education Order number 1082, issued on September 20, 2013, “Regarding the establishment of Positions concerning psycho-medico-pedagogical commission” does not propose any sort of role for the Ministry of Labor in the basic structure of the psycho-medico-pedagogical commission (PMPK), but does it retain the possibility of attracting Ministry of Labor specialists? Human Rights Watch would be grateful for a clarification of the Ministry of Labor’s role in the decisions and recommendations of the PMPK, as well as clarifications about the possibilities and precedents for participation of members of the Ministry of Labor in the establishment of the PMPK.
- In what ways does the Ministry of Labor act to protect the right of children with disabilities living in state institutions to maintain linkages with their biological families?
- Human Rights Watch would also appreciate more information on Article 155.1, part 1, paragraph 2 of Russia’s Family Code, on the placement of children without parental care. The article states, “In the case that a child is left without parental care in a subject of the Russian Federation lacking an organization for orphans and children without parental care, where the child can be placed in order to ensure that child’s basic needs and provide that child with an upbringing and an education, that child will be transferred to a guardianship and custody organ located on the territory of a different subject.” In such cases when a child is transferred to an institution located in a different region than that of his or her immediate family or relatives, how does the Ministry of Labor act to protect the right of the child to maintain linkages with his or her biological family?
- What steps is the Ministry of Labor taking to support the development of federal anti-discrimination legislation to better reflect the principles and provisions of the Convention on the Rights of the Child and Convention on the Rights of Persons with Disabilities; and to address the needs of children with disabilities in a nondiscriminatory manner, as recommended in the Committee on the Rights of the Child’s concluding observations on Russia in January 2014?
Education . Human Rights Watch is aware that all children living in Russian state institutions are entitled to education. In this regard, Human Rights Watch would be grateful for information from the Ministry of Labor concerning the following:
- What specific steps does the Ministry of Labor take to ensure that children with disabilities living in institutions under its jurisdiction have access to education in their communities? We would particularly appreciate any information that the Ministry could provide on any community-based inclusive education programs in place or under development for children with disabilities living in institutions.
Nutrition, health care, and discipline. According to article 155.1, part 3 of the Family Code, local guardianship and custody organs are responsible for the living conditions, upbringing, and education of children residing in organizations for orphans and children without parental care. Given this, Human Rights Watch would appreciate the Ministry of Labor’s input on the following questions:
- What federal policies exist regarding nutrition for children living in state institutions? What policies exist concerning nutrition for children with disabilities that is adequate for their development, including regarding appropriate feeding methods in cases when children are unable to feed themselves? In what ways does the Ministry of Labor work with local guardianship and custody organs to ensure that children with disabilities living in institutions under its supervision receive adequate nutrition?
- What federal policies exist to ensure that children with disabilities living in state institutions have access to health care and rehabilitation, including health care specific to their disabilities? How does the Ministry of Labor work with local guardianship and custody organs to ensure that children with disabilities living in state institutions under its jurisdiction are provided with necessary healthcare and rehabilitation services?
- What federal policies guide workers at state institutions for children regarding the following practices:
- the use of restraints to tie children’s hands to their bodies or to tie children to furniture or wheelchairs;
- the use of sedatives;
- the use of corporal punishment or other physical force by staff or other children as punishment for behavior deemed to be disruptive;
- other similar measures, including disciplinary measures?
- In what circumstances are institutional staff authorized to use force against a child?
How does the Ministry of Labor work with local guardianship and custody organs to ensure the freedom of all children from violence?
- What federal policies are in place regarding psychiatric hospitalization of children living in state institutions? What policies exist elaborating the conditions under which children with disabilities may be placed in psychiatric institutions? What procedures are in place by which children with disabilities may provide their informed consent to be placed in psychiatric hospitals? How does the Ministry of Labor collaborate with local guardianship and custody organs to ensure that psychiatric hospitalization is used only when in the best interests of the child?
- What federal policies exist regarding programs to ensure leisure time and play for children living in state institutions falling under the Ministry of Labor’s supervision, particularly for children with disabilities? We would welcome information on what the Ministry does to ensure that children with disabilities living in its institutions enjoy access to leisure and play according to the Ministry’s policies and programs, and information on the number of hours of leisure and play to which children are entitled.
- Does the Ministry of Labor carry out any awareness-raising and education programs to promote positive, non-violent, and participatory forms of child rearing and discipline, as recommended in the Committee on the Rights of the Child’s concluding observations on Russia in January 2014? If so, what is the content of these programs, and which audiences do these programs target?
Monitoring and oversight. Human Rights Watch would welcome information from the Ministry of Labor on whether and how it collaborates with local guardianship and custody organs to supervise conditions in children’s institutions falling under the Ministry’s jurisdiction, including through any complaint mechanisms that may be available to children with disabilities living in the Ministry’s institutions. In particular, we would appreciate answers to the following questions:
- Can children with disabilities living in state institutions run by the Ministry of Labor submitting complaints (in an accessible process) regarding their conditions or treatment to competent authorities, without fear of retaliation? What are the mechanisms for children to file such complaints? What safeguards exist against retaliation, in cases when abuses are reported? Is there a standardized set of complaint mechanisms available to children living in institutions falling under the jurisdiction of the Ministries of Education, Labor, and Education?
- How does the Ministry of Labor collaborate with the Ministries of Education and Health and local guardianship and custody organs to ensure respect for laws and policies in order to protect the rights of orphaned children or children left without parental care, including children with disabilities, in various specialized institutions?
Alternatives to institutionalization. Human Rights Watch would welcome information about existing efforts by the Russian federal government and the Ministry of Labor in particular to develop alternatives to institutionalization, including, for example, efforts to develop Russia’s system of foster care and adoption. In particular, we would welcome information from the Ministry concerning the following:
- How many children are adopted or fostered each year in Russia? We would welcome this data disaggregated by the number of children with disabilities placed in adoptive versus foster families as well as by age, gender and type of disability. What is the percentage of children with disabilities adopted or fostered relative to Russia’s total population of children who are adopted or fostered?
- What role does the Ministry of Labor have in assisting adoption and fostering, including through its potential role in collaborating with local guardianship and custody organs? Does the Ministry have any policies to encourage adoption of children with disabilities? What steps does the Ministry take to ensure that adoption or fostering is carried out in children’s best interests and with their input?
- Human Rights Watch would appreciate clarification from the Ministry of Labor on article 155.2, part 4 of the Family Code, regarding fostering. The legislation states that the temporary transfer of a child to a citizen living in the Russian Federation shall take place for no longer than three months. The law also states that in exceptional circumstances, the term of temporary transfer to a foster family can be extended with the guardianship organ’s consent, and that a continuous period of temporary residence for a child may not exceed six months. Human Rights Watch would appreciate any clarification the Ministry might provide on why a child is permitted to stay with a foster family for only three to six months, what cases constitute “exceptional circumstances”, and what role the government may play in determining when exceptional circumstances exist.
Support for families of children with disabilities and individuals with disabilities to integrate without problems into their surrounding communities. Human Rights Watch research identified concerns regarding the availability and appropriateness of support services to consistently enable parents to raise their children with disabilities and facilitate these children’s participation and inclusion in their communities.
- What forms of government support are available for children with disabilities and their families, including foster and adoptive families? What role does the Ministry of Labor play in developing and providing these services? For example, is the Ministry creating or considering creating programs to support inclusive and accessible kindergartens and schools for children with disabilities; rehabilitation and psychological support services for children and family members; and parenting guidance for children with disabilities and their families?
- How does the Ministry of Labor inform children with disabilities living in state institutions of their right to live in and participate in the community after reaching age 18? What measures does the Ministry take to actively facilitate these children’s self-reliance outside of state institutions, including through job-search assistance, life-skills training, and other forms of education or vocational training?
Statistics on children with disabilities. In compiling our report, Human Rights Watch has encountered difficulties locating comprehensive statistics on the number of children with disabilities or health impairments living in Russian state institutions, the types of disabilities or health impairments they have, as well as rates of abandonment, adoption, and fostering within Russia. We would therefore appreciate if the Ministry of Labor shared the following statistics:
- What is the total number of children with disabilities or health impairments currently residing in state institutions in Russia disaggregated by disability or health impairment; age group; gender; type of institution; and region (krai or oblast)? Human Rights Watch would also welcome information on whether these institutions are specialized for children with particular kinds of disabilities or health impairments. Additionally, what is the total number of children living in state institutions run by the Ministry of Labor, disaggregated by the same categories?
- What was the total number of children living in state institutions in each of the following years: 2009, 2004, and 1999? What was the total number of children with disability or health impairments living in state institutions run by the Ministry of Labor in these same years?
- Can the Ministry of Labor please provide statistics on the rate at which children with disabilities or health impairments are removed from institutions under its supervision and placed in (biological, foster, or adoptive) families?
- Can the Ministry of Labor please provide statistics on mortality rates among children living in state institutions, disaggregated by disability or health impairment, age, type of institution, region (krai or oblast) and cause of death for the years 2014, 2009, 2004, and 1999? We would especially welcome information on mortality rates among children recently transferred from one institution to another, or who have recently entered institutions for the first time.
In light of our upcoming report on the rights of children with disabilities in Russia, we would welcome your response to our concerns by April 25, 2014, so that we have adequate opportunity to ensure that the report reflects Ministry of Labor’s information and perspectives.
For more detailed information, and in case of other questions or requests, please contact our researcher Andrea Mazzarino (email firstname.lastname@example.org , telephone – 212-216-1229, Moscow office telephone (495) 648-29-24).
We request that answers be sent in the form of an emailed letter ( email@example.com and firstname.lastname@example.org) or as a letter addressed to our office in Moscow – 101000, Moscow, Armyanskiy per. Dom 9/1/1, str. 1, office 516.
We thank you for your attention to these matters and look forward to receiving your responses.
Europe and Central Asia Division
Human Rights Watch
April 5, 2013
125993, Moscow, ul. Tverskaya, d. 11 GSP-3
Ministry of Education and Sciences
Dmitri Viktorovich Livanov
Minister of Education
Dear Dmitri Viktorovich,
Please accept my greetings on behalf of Human Rights Watch. As you may know, Human Rights Watch is an independent, international human rights organization that advocates respect for human rights in some 90 countries worldwide, including Russia. For more than 20 years, Human Rights Watch has conducted research on a range of human rights concerns in Russia, including, recently, on the rights of people with disabilities.
We are writing to you to learn more about the steps that the Ministry of Education has taken to comply with the Convention on the Rights of Persons with Disabilities (CRPD), which Russia ratified in 2012.
Human Rights Watch has conducted interviews with people with disabilities in several cities in Russia about their experiences trying to access public buildings, businesses, transportation, public spaces, and government services such as education and healthcare. We have spoken with people with limited mobility, people with sensory disabilities, and people with developmental and intellectual disabilities. The results of this research will be published in a report later this year, with the purpose of making recommendations Russia can consider taking to bring it closer to compliance with the CRPD.
Based on our interviews with people with disabilities, as well as experts on disability rights, lawyers, and others, we have identified a number of concerns. The purpose of this letter is to share some of these concerns with you and learn about the ways in which the Ministry of Education may be addressing these issues so that we can reflect information and perspectives from the Ministry of Education in our report and other related materials. We have also written to other ministries regarding concerns that relate directly to issues within their competency.
The people we have interviewed identified obstacles to enjoying several rights that are guaranteed to them under the CPRD. These include accessing inclusive, quality, and free primary and secondary education on an equal basis with others; facilitatation of their effective education within the general education system; and accessing general tertiary education and vocational training on an equal basis with others.
Specifically, people with whom Human Rights Watch spoke reported the following concerns:
Obstacles to Accessing Inclusive, Quality, and Free Primary and Secondary Education
People with intellectual, developmental, and sensory disabilities whom Human Rights Watch interviewed have been denied the opportunity to attend kindergarten and primary and secondary school in the general education system on an equal basis with others:
- In some cases, kindergarten principals and schools have denied children with intellectual or developmental disabilities admission to schools.
- Some kindergarten principals have admitted children with intellectual and developmental disabilities part-time with the provision that their parents need to attend school with them.
- People with disabilities and their parents reported that schools often lack usable ramps, elevators, and wheelchair lifts enabling students with disabilities to enter and exit schools and safely reach classes on upper floors of schools. As a result, some parents of children with physical disabilities need to attend school with their children and assist them in entering, exiting, and moving around the building.
- Because children with disabilities often lack access to the general school system, many of them are left with no option but to board at specialized schools, which may be located far from their homes, thereby removing them from their communities and families.
Availability of Information Regarding Options for Education
- In some cases, parents stated that they educate their children with disabilities at home or send them directly to specialized schools because they do not have information about how general schools will accommodate their children’s learning needs.
- Parents of some children with disabilities choose not to educate their children at all because of their disabilities. These parents lack information about the educational options open to their children, including in the general education system.
Obstacles to Accessing General Higher Education and Vocational Training.
- People with physical disabilities reported a lack of usable ramps and elevators in universities such as Moscow State University and the State University of Buryatia, among others.
- People who are deaf and hard of hearing reported a lack of sign language translators to assist them with lectures, as well as insufficient visual information to accompany lectures.
- People who are blind and with low vision and who have attended institutions of higher education reported insufficient availability of textbooks with large print and screen readers to enlarge print.
- While colleges for young adults with Down’s syndrome and autism provide workshops teaching crafts, such as drawing, some parents of these adults reported a lack of opportunities for their children to gain skills that would help them to get jobs, such as computer skills, for example.
Human Rights Watch would be grateful for information on how the government is addressing the issues enumerated above, in particular:
- Are there any projects under way to amend and revise article 18 of Federal Law No. 181, which grants the Ministries of Social Protection and Healthcare the authority to designate whether children with disabilities attend general education schools, specialized schools, or study at home, to bring the law into line with the requirement under the CRPD that all children have access to schools in the general education system?
- What measures does the Ministry of Education take to ensure that kindergartens and schools in the general education system are accessible to all children with disabilities, including by ensuring that school administrators do not deny admission to children with disabilities?
- What measures is the Ministry of Education taking to ensure that institutions of higher education are accessible to all people with disabilities?
- What financial and other resources (i.e., teacher training) does the Ministry of Education currently devote to inclusive education, including in regions that do not currently receive financial or other support through the Accessible Environment Program?
- How is the Ministry of Education working to facilitate access to vocational training for people with disabilities?
- What measures does the Ministry of Education take to promote awareness about the right of children with disabilities to attend schools in the general education system under the CRPD, including raising awareness among families with children with disabilities?
We would also be grateful to receive answers to the following questions:
- Does the Ministry of Education cooperate with other ministries that are involved in addressing the concerns described above?
- In what ways does the Ministry of Education cooperate with other ministries to ensure measurable progress in helping all people with disabilities to access education?
- What is the sphere of responsibility of the Ministry of Education in ensuring that regional and city governments comply with the CRPD?
In light of our upcoming report on the rights of people with disabilities in Russia, we would welcome your response to our concerns by May 8, 2013 so that we have adequate time to ensure that the report reflects the Ministry of Education’s information and perspectives.
We thank you for your attention to these matters and look forward to receiving your response.
Europe and Central Asia Division
Ministry of Education and Sciences of the Russian Federation
Tverskaia str. 11, Moscow 125993
Phone: (495) 629-70-62, (495) 237-97-63 Fax (495) 629-08-91
May 8, 2013, No. 16-IN-346
Europe and Central Asia Division
Human Rights Watch
350 Fifth Avenue, 34th floor
New York, NY10118-3299 USA
Dear Ms. Denber,
The Department of Public Policy on Children’s Rights Protection of the Ministry of Education and Sciences of the Russian Federation has considered your appeal on the implementation of the Convention on the Rights of Persons with Disabilities, which the Russian Federation ratified in 2012, and within its sphere of competence, informs you about the following:
In order to implement a universal right to education, federal authorities, the Russian Federation subject’s authorities, and municipal authorities create the conditions required for the provision of quality free education for persons with disabilities, in line with the current legislation of the Russian Federation on education, in order to correct developmental and social adaptation disorders; to provide early corrective help based on special pedagogical approaches most suited to these persons’ languages, methods, and means of communication; and to provide conditions that facilitate a certain level and certain direction of education, to the maximum degree possible, as well as social development of these persons, including providing inclusive education for persons with disabilities.
Article 18 of Federal Law No. 181-FZ, dated November 24, 1995, “On Social Protection of the Disabled” stipulates that educational institutions, along with medical institutions, shall provide for pre-school and out-of-school upbringing and the acquisition of secondary education, vocational training, and higher professional education by children with disabilities in accordance with the individual rehabilitation program of such a person.
According to the Law, education of children with disabilities in general or special pre-school or comprehensive secondary education institutions on a comprehensive or individual homeschooling program level is provided by education oversight authorities and educational institutions only with parents’ consent.
Article 63 of Federal Law No. 273-FZ, dated December 29, 2012, “On Education in the Russian Federation” (hereinafter – the Law) secures the right of parents (legal guardians) to choose a form of general education and a form of a specific basic general education program for an underage student.
Article 67 of the Law regulates admission requirements into state and municipal educational institutions for studying in basic general education programs. The article stipulates that admission into a state or municipal educational institution may only be rejected due to a lack of vacancies. In case there are no vacancies in a state or municipal educational institution, the child’s parents (legal guardians) shall apply directly to the Russian Federation subject’s executive authorities responsible for education oversight or municipal authority responsible for education oversight for placement of the child into a different general education institution.
General education of students with disabilities in the Russian Federation is carried out in institutions carrying out general education based on adjusted basic general education programs. A special environment is setup in such institutions in order to provide for the abovementioned students getting an education.
Article 79 of the Law, “Special environment” for education of students with disabilities refers to an educational and developmental setting that includes the use of special educational programs and methods of education and upbringing; special textbooks, teaching aids, and didactic materials; special technical means of education for collective and individual usage; teaching aides that provide required technical assistance to students; group and individual corrective lessons; providing access into buildings of institutions that carry out educational activities; and other conditions necessary to carry out education programs for students with disabilities.
In order to ensure unrestricted access for persons with disabilities into educational institutions that implement joint education of children with disabilities and children who do not have developmental disorders, the Russian Federation state program “Accessible Environment” is being carried out.
The Program provides for the creation of a universal, barrier-free environment within five years (from 2011-2015) in 10 thousand educational institutions that carry out general education programs, which consists of no less than 20 percent of the total number of ordinary educational institutions.
Information on basic educational institutions established in 2011-2012 in the Russian Federation is published on the “Accessible Environment” website (www.zhit-vmeste.ru).
Besides establishing a network of general education institutions in the Russian Federation that carry out the joint education of children with disabilities and children who do not have developmental disorders, a professional development program addressing issues of educating children with disabilities in regular educational institutions for specialists of psychological-medical-pedagogical commissions and educational institutions has been carried out since 2011. Thus, in 2011-2012, 953 persons from 35 regions of the Russian Federation have been trained in a program called Mechanisms of Implementation of Individual Rehabilitation Program of a Disabled Child into Regular Educational Institutions; in 2012, 1,350 persons from 54 regions of the Russian Federation.
In June 2013, within the framework of the Accessible Environment Program and with support from the Ministry of Education and Sciences, an international conference on the inclusive education of children with disabilities has been planned.
Article 3 of the Law regulates the right to lifelong education, including for persons with disabilities.
In this regard, the Ministry of Education and Sciences implements measures to provide accessibility to higher education institutions for persons with disabilities.
In accordance with this, children with disabilities, persons with “group one” and “group two” disabilities, persons disabled since early childhood, and persons disabled as a result of military trauma and illness, who, based on the conclusion of a federal institution’s medical-social evaluation, do not have contraindications to studying in respective organizations, are granted special rights within a specified quota during the admission process into baccalaureate programs and professional programs. Education of these categories of persons is funded by budget means. These rights of persons with disabilities are stipulated in article 71 of the Law.
Also, children with group one and group two disabilities, who, based on the conclusion of a federal institution’s medical-social evaluation, do not have contraindications to studying in respective organizations, have the right to be admitted and to study in preparatory departments of federal educational institutions of higher education and have preferential admission into educational institutions to study in baccalaureate and professional programs, provided that they successfully pass the admission examination, other conditions being equal.
During the period of studies, students with disabilities are provided with special textbooks, study aids, other academic books, as well as sign language translation services and translation services for deaf and blind people, free of charge.
In order to ensure accessibility to professional education for persons with disabilities, the Ministry of Education and Sciences has prepared and disseminated to each region’s executive authorities responsible for education oversight a number of methodological documents:
- Ministry of Education and Sciences letter dated June 10, 1999, # 27/582-6, Recommendations on social-labor adaptation of type VIII special (corrective) educational institutions graduates;
- Ministry of Education and Sciences letter dated November 30, 1999, # 27/777-6, On characteristics of organization of primary professional education of students and foster children with developmental disorders;
- Ministry of Education and Sciences letter dated June 27, 2007, # 03-1430, Recommendations on designing government order for qualified workers’ and specialists’ training, including among persons with disabilities;
- Ministry of Education and Sciences letter dated July 12, 2007, # 03-1563, Recommendations on organization of educational process in institutions of primary and secondary professional education for persons with disabilities (hearing impaired, deaf, visually impaired);
- Ministry of Education and Science letter dated April 18, 2008, # AF-150/06 Recommendations on creating conditions in the Russian Federation subject for education of children with disabilities;
- Ministry of Education and Sciences letter # 491/12-16 dated March 23, 2009, On the necessity to adopt additional measures ensuring the adjustment of educational institutions’ social infrastructure for unhindered access by persons with disabilities.
Article 19 of Federal Law No. 181-FZ, dated November 24, 1995, “On the Social Protection of the Disabled” stipulates additional guarantees for persons with disabilities obtaining professional education.
Persons with disabilities have the right to choose a form of admission examination into higher and secondary special education institutions. People with disabilities (persons who have disorders in physical and/or mental development, including deaf, hearing impaired, blind, and visually impaired people, people with severe speech disorders, musculoskeletal system disorders, and others, including both children and adults) are admitted either based on the results of the Unified State Exam (hereafter, USE), or based on the results of an admission examination administrated independently by the educational institution (in case there are no unified state exam results), which are organized taking into account specifics of psychophysical development, individual abilities, and the state of a person’s health (Ministry of Education and Science of Russia letter dated March 15, 2004, # 03-59-49in/36-03, On participation in the USE of certain categories of graduates; regulations on state (final) assessment of graduates of IX and XI (XII) grades of general education institutions of the Russian Federation, approved by the Ministry of Education and Sciences order dated December 3, 1999, #1075, registered by the Ministry of Justice on February 17, 2000 (registration # 2114).
In the past several years, about three thousand children with disabilities (with vision, hearing, speech, musculoskeletal system, and other developmental disorders and illnesses) – graduates of general education and corrective institutions – have passed the USE annually.
According to information received from regions of the Russian Federation, each region has created USE examination facilities that are equipped taking into account various characteristics of psychophysical development of children in this category.
Professional educational institutions and higher education institutions, as well as institutions carrying out basic professional education programs, create special conditions for providing education to students with disabilities.
In the last 10 years, an increasing number of students with disabilities studying in professional educational institutions and higher educational institutions has been observed.
In 2002, 14.2 thousand persons with disabilities had studied in all types of education in state and municipal higher educational institutions, and by 2011 their number had increased by 37 percent and reached 19.4 thousand people. In 2011, 13.3 thousand persons with disabilities had studied in secondary special educational institutions, which is 32 percent (10.1 thousand people) more than in 2002.
Within the framework of the federal special purpose program on education development for 2011-2015 (hereafter, the Program), the construction and reconstruction of objects (foremost academic buildings) of higher education institutions and adaptation of their infrastructure for the needs of students with disabilities have been carried out.
Proper conditions in professional education institutions, including federal education institutions, are being created at this stage within the framework of development programs for these institutions (for example, Far Eastern, Baltic, and other federal universities).
The Russian Federation president’s order dated May 7, 2012, No. 599, On measures of state policy implementation in the field of education and science calls for an increase in educational institutions of secondary and higher professional education whose buildings are equipped for the education of people with disabilities from 3 to 25 percent by the year 2020.
Currently, 14,188 disability group one and two persons and persons with disabilities since early childhood study in state, municipal, and private institutions of higher professional education.
Remote-access education technologies are actively used in the education of students with disabilities. Students have access to educational portals of higher professional education institutions where they can obtain educational materials necessary to prepare for studies.
In accordance with the president of the Russian Federation’s assigned tasks, regions of the Russian Federation, within the framework of the high-priority national project “Education” currently undertake measures to provide computer equipment to persons with disabilities who study remotely from home, including those obtaining professional education.
Another direction to provide accessibility to professional educational institutions and higher educational institutions for persons with disabilities is the improvement of professional education content.
Students, including persons with disabilities, have a right to study according to an individual study plan and take part in formation of their professional education content, provided that federal state education standards of secondary and higher professional education and educational standards are met according to procedure stipulated by local regulations (the abovementioned right may be limited by employer-funded education contract provisions).
Article 49 of the Law establishes pedagogical employees’ responsibility to take into account psychophysical development of students and their health state, to adhere to special conditions necessary for persons with disabilities in order to obtain education, and to interact with medical institutions, if deemed necessary, while implementing content of educational programs.
The following projects have been implemented within the framework of the Program: dissemination of information on progress and results of measures implemented to form a tolerant attitude toward people with disabilities and dissemination of models of their social integration; design and piloting of programs of professional development for managers and specialists of psycho-pedagogical and medical-social assistance centers (PPMS) centers that provide comprehensive psychophysical and medical-social assistance for minors; implementation of educational activities for psycho-medical-pedagogical commissions’ specialists; educational institutions on issues of implementation of individual rehabilitation programs for children with disabilities into regular educational institutions.
Within the framework of the Program, the Ministry of Education and Sciences develops methodological recommendations on the organization of the educational process and ensures its accessibility to people with disabilities in professional educational organizations.
The aim of these methodological recommendations is the development of common approaches to create conditions for ensuring equal access for persons with disabilities to educational institutions and identification of special characteristics of needed for people with disabilities in professional educational institutions.
The government of the Russian Federation order dated October 15, 2012, # 1921-r approves Set of measures aimed at advancing the efficiency of measures on facilitating employment of persons with disabilities and ensuring accessibility of professional education in 2012-2015, which among other things, includes the following steps:
- The approval of requirements for the organization of the educational process for persons with disabilities in institutions of professional education, including availability of technical equipment for the educational process;
- Development of recommendations for formulating requirements for federal educational standards in professional education for people with disabilities;
- Amendments to approved federal education standards, as well as organization, if needed, of the development and approval of special federal educational standards for professional education for persons with disabilities;
- Development and implementation of special professional education programs adapted for persons with disabilities.
Department of Public Policy
Children’s Rights Protection