Acknowledgments i Executive Summary ii I. Introduction 1 A. Objectives 1 B. Methods 2 C. Limitations and implications for systemic human rights reforms 3 D. Legal and policy framework 4 E. Economic and social context 7 II. Observations 10 A. Defectology and disability 10 B. System structure and services 12 C. Entrance to and conditions in the institutions 15 D. Behavior programs 18 E. Medical care and treatment 19 F. Neglect in institutions 20 G. Rights and patient choice 22 H. Institutionalization of non-disabled children 23 I. Access to institutions and oversight 23 III. Human Rights Obligations and Strategic Recommendations 25 A. Right to community integration 25 B. Right to family and community support 28 C. Right to highest attainable standard of health and development 32 D. Right to education 36 E. Protections against inhuman and degrading treatment 37 F. Child's right to exercise choice 40 G. Citizen participation in national planning 41 H. Public education 43 IV. First Steps: Recommendations for Low-cost Immediate Action 44 V. International Cooperation 47 A. Recommendations to international donors 47 B. Proposed pilot programs for UNICEF 52 Conclusion: The Road to Reform 54 Appendix A: Community Integration Models 56
The staff and project team of Mental Disability Rights International (MDRI) is indebted to many people in Russia who gave generously of their time to provide observations and insights about the conditions in children's institutions. Family members, service providers, members of the medical and educational professions, government officials, and staff of non-governmental and international organizations were instrumental in our investigation.
We would like to thank all people at UNICEF/Russia who made our mission successful and productive. Dr. Olga Remenets of the International Child Development Centre deserves our most sincere gratitude for arranging visits, confronting logistical problems on our behalf, and accompanying the team into institutions. Without Dr. Remenets, our mission would not have been possible. Our interpreter Lengvard Khitrov was also essential to our work. Ekaterina Staravoytova assisted us with logistics and we will not forget her helpfulness and efficiency. We would like to thank Dr. Ezio Murzi above all for giving us the opportunity to conduct this investigation and contribute our suggestions for change in Russia's child care institutions.
We would also like to thank the many Russian government officials who made our visit possible. Elena Kupriyanova of the Ministry of Labor and Social Development was essential to our access to institutions and our meetings with officials in the regions of Kaliningrad, Saratov, and Moscow. We express our great appreciation for all her work and her accommodation of our needs. We would also like to thank the regional and local officials of the ministries of education and labor and social welfare for their gracious welcome and cooperation. We appreciated the opportunity to discuss the operation of children's institutions at length and in detail.
The MDRI project team would like to thank the directors and staff of the institutions visited for their time and openness. We found the great majority of staff we met at the institutions to be caring and concerned and willing to assist us in our work in order to improve conditions for the children. In many cases, these individuals have made great personal sacrifices for the children, working long hours for little pay. We acknowledge the difficult circumstances in these institutions in Russia and appreciate the dedication of the staff.
MDRI would like to thank the members of non-governmental organizations (NGOs) in Russia who provided us with critical background about the lives of people with mental disabilities and their families in Russia in and out of institutions. We would particularly like to thank Sergei and Marina Koloskov of the Down Syndrome Association. The courage and dedication of the members of the Down Syndrome Association who offered us hospitality and assistance was an inspiration to the entire MDRI team. Finally, we would like to thank Dr. James Conroy, Director of the Center for Outcome Analysis, and Karin Raye, Director of MDRI's Women's Rights Advocacy Initiative, for reviewing and commenting on this report.
This project was funded primarily by UNICEF/Russia. Core funding to MDRI from the Open Society Institute (OSI) and the Public Welfare Foundation covered part of the costs of on-site research as well as the operating costs necessary to write this report.
The Russian Federation has inherited from the Soviet Union an extensive institutional system of services and education for children that unnecessarily and improperly segregates them from society. The vast majority of children we observed within Russia's institutions and special schools could live, grow, develop, receive an education, and maintain family ties in a more integrated community environment. This is true for children with disabilities and children without disabilities who are orphaned or who come from troubled families. The health, education, and social services necessary to permit children to remain in the community with their own family or with substitute families are lacking. The MDRI team interviewed numerous parents of children with disabilities who are desperately trying to keep their children at home but find it difficult to do so in the absence of adequate government support. The great majority of children in Russia's institutions are "social orphans," many of whom have been placed in institutions by parents as a result of the lack of economic resources and other needed social support. Both real and social orphans could live with their own family or a substitute family if adequate educational services and support were available.
Russia's recent economic hardship has contributed greatly to problems facing children with disabilities and their families. With fewer resources available to them in the community, more and more parents are forced to place children in institutions. Institutional budgets, already stretched thin, are forced to cover the costs of serving an increased number of children. Children in institutions and in the community are increasingly at risk of impoverishment and neglect.
The near exclusive reliance on institutional care for children who require support contributes to the disabilities of children. Research in child development and the experience of other countries around the world has demonstrated that children experience developmental delays and potentially irreversible psychological damage by growing up in a congregate environment. This is particularly true in the earliest stages of child development (birth to age four), in which the child learns to make psychological attachment to parents (or substitute parents). Even in a well staffed institution, a child rarely gets the amount of attention he or she would receive from his or her own parents. Consequently, institutionalization precludes the kind of individual attachments that every child needs. In Russia, the MDRI team observed many caring staff doing everything they could to spread their attention to meet the needs of all the children under their care. Resources are inadequate to meet the needs of all children. The situation is particularly serious for children with disabilities who need the most care. Overworked staff are not able to meet their needs. Many children are left to spend long hours, days, or years in a crib without the attention or stimulation needed to grow and develop. The damage caused in their early years will likely stay with them forever. These children are effectively denied the opportunity to lead the full life of which they are capable.
Older children also suffer from unnecessary and improper institutionalization. Many older children are placed in institutions "temporarily" for a host of stated reasons - to give them an evaluation diagnosis, to provide "corrective services," or to give parents the time to get over a difficult period. Children labeled as "disabled" are placed in segregated classrooms in institutions or in the community, where they receive an inadequate or second-class education. Lacking contact with the mainstream, children fail to develop the social skills necessary to thrive in the community. Frequently, children temporarily placed in an institution lose contact with family or friends in the community. The loss of these social ties makes return to the community more and more difficult over time. Once family ties are severed, a child may lose hope of ever returning to the community. Children with mental disabilities are often consigned to a lifetime in an institution.
MDRI's major recommendation is that the Russian Federation should commit itself to a policy of community integration. To implement this new policy, appropriate authorities must create a network of community-based services and support systems to permit children to live, grow, and receive an education in the community. This system will end the unnecessary break-up of families and will help prevent mental disabilities that are caused by children's institutionalization. Educational systems must also be reformed to permit integration of children with mental disabilities within mainstream schools and classes. Ultimately, every child should grow up with a family and no child should ever have to be placed in an institution.
The International Convention on the Rights of the Child (CRC) embodies the principle that all children - regardless of disability - have value as human beings. The CRC establishes that the opportunity to grow up with a family in the community is a fundamental right of all children. The CRC specifies that health, education and social services be provided - to the extent of available resources - to ensure enforcement of these rights. The CRC requires laws to be reformed to protect all children against discrimination in society. These laws should also assure children access to needed social services and education in the community. Human rights oversight mechanisms (including ombudsmen) should be established to protect children against neglect and abuse and to ensure the enforcement of basic human rights for children remaining in institutional care. Oversight mechanisms must also be established to ensure enforcement of the rights of children receiving community-based services.
The Russian Federation must commit itself to a new policy of promoting the maximum possible community integration and family support for all children, particularly children with disabilities. As the United Nations has called for in the "Standard Rules on Equalization of Opportunities for Persons with Disabilities," national planning is needed to ensure enforcement of human rights and full opportunity to participate in public life in the community. Planning on the regional and local levels is needed to develop programs to bring about long-term reform. People with disabilities and their families should be invited to work with government authorities at all levels to develop effective reform plans and programs.
While the Russian Federation is going through a difficult time of transition at present with hardships shared by much of the population, the humanitarian concern of children in institutions are urgent. A delay in the development of community-based alternatives creates increased human and financial costs. As institutional placements rise and more families break-up, children face rising levels of mental disability. Public exposÚs of abuses in institutions will increasingly pressure government authorities and international donors to invest in improving institutions. These new investments may increase the incentives for financially-strapped parents to place children in institutions. While emergency efforts may be needed to ensure sufficient food, heath, clothing, sanitation, and medical care in institutions, the bulk of assistance should go to children and families in the community. The Russian Federation should avoid the path taken by countries such as Romania, where international exposure of abuses in orphanages was followed by new investments in institutions - and an almost fifty percent rise in the total population of institutionalized children. The challenge to community integration will be even greater and more difficult if Russia follows this path. Russian authorities should respond to the current crisis by creating community services to meet the needs of children in their own home and community. As soon as possible, the entry door to institutions should be closed - and all new admissions should be terminated.
International assistance at this time is critical. Programs targeted to support families with children at-risk of institutionalization can prevent unnecessary break-up of families. These programs should be linked to advocacy training programs to empower family members to take part in reform efforts at the national level and through their local and regional authorities throughout Russia. International funding can lead the way to reform by supporting model programs that demonstrate the effectiveness of community integration. Russian models for community integration for children in out-of-home care do exist. These programs should be expanded to serve children with mental disabilities, and these models should be replicated throughout the Russian Federation.
Chapters III through V of this report provide detailed recommendations to the Russian government, local authorities, and the international donor community about steps they can take to bring about rights enforcement and service system reform. The following is a summary of the major objectives of reform:Click here to return to top of page
Policies and programs at all levels of government should reflect a broad commitment to community integration for children. The CRC requires a policy of commitment to promote community integration wherever possible. These policies should be reflected in local or national laws and practices. Full enforcement of the right to community integration will require, over time, the creation of a full network of community-based service and support systems for children with disabilities.B. Right to Family and Community Support
Social services systems in the community should be established to make it possible to keep children with their families wherever possible. Where out of home placement is necessary, a substitute or "foster" family should be made available.C. Right to the Highest Attainable Standard of Health and Development
Health and development of children in institutional care can only be maximized through the creation of community alternatives to institutions and outplacement programs. Emergency programs to protect the health of children in institutions may be needed. Model community programs are needed to demonstrate the effectiveness of community integration of children with disabilities. More habilitation professionals should be trained and employed to service children with disabilities; these professionals should work for community authorities and not for institutions so that programs can be adapted to serve children in the community as needed.D. Right to Education
All children, regardless of disability, shall receive a free and appropriate education in the most integrated/least restrictive setting suitable to the individual's abilities. Special programs shall be created in mainstream classrooms to ensure that children with mental disabilities can maximize their individual potential in a setting that promotes community integration.E. Protection Against Inhuman and Degrading Treatment
Russian authorities must establish enforceable legal rights, meeting internationally accepted human rights standards, to protect all children from inhuman and degrading treatment institutions; human rights oversight and enforcement mechanisms (including, but not limited to ombudsmen) are needed to ensure enforcement of these rights.F. Child's Right to Exercise Choice
All children in institutions - including children with disabilities - have the right to express and exercise choice about basic decisions that affect their rights. Services should be flexible enough to be shaped to meet the individual needs and expressed wishes of the child where possible.G. Citizen Participation and National Planning
National, regional, and local planning committees should be established to develop and implement community integration policies. These committees should include people with disabilities, family members, and representatives of other concerned citizens groups.H. Public Education
Public awareness campaigns are needed to promote understanding of the rights and potential for community integration of children with mental and physical disabilities. People with disabilities and their families should be actively involved in designing and implementing these efforts. These public awareness campaigns should be directed to people with disabilities, professionals, educators, family members, and to the general public.Click here to return to top of page