Abandoned by The State: Violence, Neglect, and Isolation for Children with Disabilities in Russian Orphanages

This report examines the lives and living conditions of orphans in Russia, isolated in institutions. The report details their experience of physical and psychological violence, their neglect, and their lack of health care, education, and play. 

To access report, please go to: https://www.hrw.org/sites/default/files/reports/russia0914_ForUploadweb.pdf

Summary

Children with disabilities may be overrepresented in institu- tional care. On international children’s rights nongovernmental organization (NGO) estimates that approximately 45 percent of children living in state institutions have some form of disability, despite the fact that children with disabilities account for only 2 to 5 percent of Russia’s total child population. The Russian government’s failure to ensure meaningful alternatives for these children means that many children with disabilities spend their childhoods within the walls of institutions, never enjoying a family home, attending school, or playing outside like other children.

This report is based on visits by Human Rights Watch researchers to 10 orphanages in 6 regions of Russia, as well as on more than 200 interviews with parents, children, and young people currently and formerly living in institutions in these regions in addition to 2 other regions of Russia. Children described how orphanage staff beat them, used physical restraints to tie them to furniture, or gave them powerful sedatives in efforts to control behavior that staff deemed undesirable. Staff also forcibly isolated children, denied them contact with their relatives, and sometimes forced them to undergo psychiatric hospitalization as punishment.

Many children also experienced poor nutrition and lack of medical care and rehabilitation, resulting in some cases in severely stunted growth and lack of normal physical development. Human Rights Watch determined that the combination of these practices can constitute inhuman and degrading treatment. Children with disabilities living in orphanages also had little or no access to education, recreation, and play.

Children with certain types of disabilities, typically those who cannot walk or talk, are confined to so-called “lying-down” rooms in separate wards, where staff force them to remain in cribs for almost their entire lives. Human Rights Watch documented particularly severe forms of neglect in “lying- down” rooms in the institutions it researched. The practice of keeping children with certain types of disabilities in such conditions is discriminatory, inhumane and degrading, and it should be abolished.

Research by the United Nations Children’s Fund (UNICEF) and others has demonstrated that institutionalization has serious consequences for children’s physical, cognitive, and emotional development, and that the violence children may experience in institutions can lead to severe developmental delays, various disabilities, irreversible psychological harm, and increased rates of suicide and criminal activity. UNICEF has urged governments throughout Central and Eastern Europe and Central Asia to stop sending children under the age of 3, including children with disabilities, to institutions.

While Russia lacks comprehensive and clear statistics on children in state institutions or foster care, experts estimate that the overwhelming majority of these children have at least one living parent. Russia’s high rate of institutionalization of

children with disabilities results from a lack of government and state-supported services, such as inclusive education, accessible rehabilitation, and other support that would make it feasible for children’s families to raise them. In addition, many parents face pressure from healthcare workers to relinquish children with disabilities to state care, including at birth. Human Rights Watch documented a number of cases in which medical staff claimed, falsely, that children with certain types of disabilities had no potential to develop intellectually or emotionally and would pose a burden with which parents will be unable to cope. In all of these cases, the children raised in their families had far exceeded any expectations.

Children with disabilities who enter institutions at a young age are unlikely to return to their birth families as a result of the practice of local-level state commissions to recommend continued institutionalization of children. The Russian government has failed to adequately support and facilitate adoption and fostering of children with disabilities, although these types of programs formally exist. As a result, when children with disabilities turn 18 and age out of orphanages, they are overwhelmingly placed in state institutions for adults with disabilities. Staff in many orphanages also fail to provide training and practical knowledge that would give children the skills they need to live independently once they become adults.

While in orphanages, children with disabilities may be subject to serious violence, neglect, and threats. For example, Human Rights Watch documented the use of sedatives to restrain children deemed to be too “active” in 8 out of the 10 institutions it visited in the course of researching this report. Twenty-five year-old Andrei M., a young man with a develop- mental disability who lived in an orphanage in Pskov region until 2008, told Human Rights Watch, “They constantly gave us injections, and then they sent us to the bedroom so that we would sleep.”

Human Rights Watch spoke with many orphanage staff who expressed a desire to support children’s maximal development and who worked hard to do so with the information and resources at their disposal. Some of these staff were also those who used practices such as physical and chemical restraints, for example. The findings below are presented with the understanding that well-intentioned staff often engage in unacceptable childrearing methods because they lack information, such as training in nonviolent disciplinary methods, as well as resources, such as additional personnel to help them care for large numbers of children.

Children with disabilities living in state institutions may also face various forms of neglect, including lack of access to adequate nutrition, health care and rehabilitation, play and recreation, attention from caregivers, and education. For example, Olga V., a pediatrician at a Sverdlovsk region orphanage for children with developmental disabilities, stated that not all children in the orphanage go to school, including 150 children in “lying-down” rooms who she claimed were “uneducable” (neobuchaemy) – an outdated diagnosis that state doctors and institution staff continue to assign to some children. In the same orphanage, another pediatrician stated that rather than select food appropriate for children’s ages and health needs, staff “grind up whatever we have and use tubes to feed the ones who can’t feed themselves.”

As a result of violence and neglect, children with disabilities in state institutions can be severely physically and cognitively underdeveloped for their ages. Nina B., an independent, Moscow-based pediatrician specializing in the health of children with disabilities, told Human Rights Watch that children from orphanages often become atrophied due to lack of stimulation, movement, and access to rehabilitation services.

Children with disabilities living in state institutions also face numerous obstacles to adoption and fostering, including lack of government mechanisms to actively locate foster and adoptive parents for children with disabilities; lack of support for adoptive and foster families of children with disabilities; and some state officials’ negative attitudes towards children with disabilities and their active attempts to dissuade parents from adopting or fostering these children on the basis that they will be unable to care for them.

The Russian federal government has in recent years developed several policies that include important measures to end institutionalization and provide better alternatives for children with disabilities and their families. For example, the government formulated the National Action Strategy in the Interests of Children for 2012-2017, which aims to create government support services that would enable children with disabilities to remain in their birth families, return children with disabilities who live in institutions to their birth families, and increase the number of Russian regions that do not use any form of institutional care for orphans. The government also established a foundation to finance projects by regional governments and NGOs in certain priority areas, including prevention of child abandonment and social inclusion of children with disabilities.

However, these well-intentioned policies lack clear federal plans for implementation and monitoring. As such, they fail to adequately address the widespread practice of institutional- ization of children with disabilities and to create sufficient meaningful alternatives for children with disabilities and their families.

In May 2014 the Russian government also passed a resolution that establishes orphanages as temporary institutions whose primary purpose is to place children in families and mandates that orphanages protect children’s rights to health care, nutrition, and information about their rights, among other fundamental rights guaranteed under the UN Convention on the Rights of the Child (CRC). While the resolution contains important protections for all children living in state institutions, Human Rights Watch is concerned that several of its articles may segregate children with disabilities living in state institutions from their peers without disabilities and that the resolution does not give sufficient attention to the needs of children with disabilities with regard to adoption, fostering, and access to information on their rights.

Russia has a robust civil society, including many groups that advocate on behalf of children with disabilities and provide services to both children in institutions and children with disabilities and their families outside of institutions. For example, several groups in Moscow and other Russian cities raise awareness about the human rights and dignity of people with disabilities, provide parents of newborns with disabilities with information on services available to these children in the community, and provide services such as support groups to parents of children with disabilities.

With regard to disability rights, the Russian government has taken steps to create more accessible infrastructure and community-based services for all persons with disabilities. For example, in May 2014 the Russian State Duma accepted in their first reading a set of amendments that include a prohibition against disability-based discrimination and an expanded list of changes to be made so that public facilities and services are accessible.

While these initiatives are important, Russia has a long way to go to enable children with disabilities to grow up in their communities and participate in community life. Most importantly, Human Rights Watch has found that children with disabilities and their families have felt the effects of the government measures to a very limited extent. Parents continue to give up their children to state care with little or no information about their children’s rights and developmental potential or about community-based services that are available to help them raise their children.

In order to ensure protection of the rights of children with disabilities in Russia and to comply with its international human rights obligations, the government should immediately adopt a zero tolerance policy for violence, ill- treatment, isolation, and neglect of children with disabilities living in state institutions and guarantee children’s rights to food, education, and play. In addition, the government should accelerate and expand initiatives to prevent healthcare workers from pressuring parents of children with disabilities to relinquish care to institutions. In cases where children are orphaned or living without parental care, the government should ensure that institutionalization is used only in the short term, in emergency situations, to prevent the separation of siblings, and when necessary and constructive for the child and in his or her best interest.

In the long term, Russia should take concrete steps to end the institutionalization of children, especially infants separated from their parents, with extremely limited exceptions, as described above.

Until the government acts, it will needlessly continue to consign these children to lifetimes within four walls, isolated from their families and communities, and robbed of the opportunities available to other children.