Deinstitutionalization & Community Living - Publications and Reports
This page is divided into two sections: (1) publications and reports related to deinstitutionalization and community living, and (2) documentation of conditions in institutions with a particular focus on human rights violations and the long-term effects of institutional care.
Publications and Reports Related to Deinstitutionalization and Community Living
Deinstitutionalization Pilot Project Case Study (2009), a case study from the Community For All (Azerbaijan Program) provides information about institutionalized children and their families in Azerbaijan. The study considers stories of children who have left institutions and have been reunified with their birth families, as well as children who have been moved between various institutional settings. The case study documents the social, educational, health-related, and economic needs of children and their families, information on their physical and psychological states, their behavior, family/social relations, living conditions, and access to social and other types of services. The case study was conducted using face-to-face interviews with children and their parent/s. Participation in the case study was entirely voluntarily. Information gathered from this case study will be used to continue to identify challenges institutionalized children face, with an aim toward the development of best practices and appropriate community-based services for this target group. The author of the study is Feride Abbasova, the Deinstitutionalization Project's (DI Project) Mental Health Services Coordinator. The DI Project team has provided necessary support for the study. The study was funded by the Open Society Mental Health Initiative.
Strategy Development For The Reform Of The State Care System For Children Deprived Of Parental Care Living In State Care Institutions (2008), a report by UNICEF Ukraine, aims to identify the key elements for a strategy to take forward the Government of Ukraine's programme for the reform of child welfare.
The Right To Live In The Community: Making It Happen For People With Intellectual Disabilities In Bosnia And Herzegovina, Montenegro, Serbia And Kosovo (2008), produced by Handicap International Regional Office for South East Europe, concerns the situation of people with intellectual disabilities in Bosnia and Herzegovina, Croatia, Kosovo under UN Security Council Resolution 1244, Montenegro and Serbia. It describes how five organizations working in the region have successfully developed innovative services to support people with intellectual disabilities to live in their communities as equal citizens.
Supporting Independent Living for Disabled People (2008) sets out the findings of Stage 3 of the evaluation commissioned by the Papworth Trust (carried out by RAND Europe) to assess the successes and challenges of the FfL (Foundations for Living) initiative.
Program of Specialized Foster Family Care for Children with Disabilities (2007) demonstrates the foster care program of the Association for Promoting Inclusion in Zagreb, Croatia. To view the film in Croatian with English subtitles, please click here. To view the film in Croatian with Russian subtitles, please click here.
People with Developmental Disabilities: Living As Everyone Else Does (2006), by Chuck Sudetic of the Open Society Institute, discusses the process of deinstitutionalization through telling the stories of three people in Zagreb, Croatia, who have left institutions and are now living with support in the community.
Focus Report on the Right of Children with Disabilities to Live in the Community (2006), from the European Coalition for Community Living (ECCL), was released on December 3, the International Day of Persons with Disabilities. On this occasion, ECCL called for European policy makers to ensure that all children with disabilities can live in the community and to put an end to institutionalization. In the Focus Report, ECCL recommends what action must be taken to ensure that families of children with disabilities receive the support they need for children with disabilities to grow up in their families and together with other children.
The film, Living Proof: The Right to Live in the Community (2006), depicts the stories of people with intellectual disabilities who have spent a large portion of their lives in long-stay institutions and are now living in their own apartments. Living Proof is a co-production of the Association for Promoting Inclusion - a Croatian nongovernmental organization that promotes deinstitutionalization and community-based services - and WITNESS - an international human rights organization that supports human rights defenders to use video as an advocacy tool. Read a Press Release about the film.
Reality (2006), by ULOBA, demonstrates through interviews and video clips how personal assistance works for 6 individuals in Norway. The people in the film are different ages, genders, have different types of disabilities and different support needs. The film is in Norwegian with English subtitles.
People with intellectual disabilities have the right to be equal and active members of the community. Living together with people without disabilities enables them to develop their potential to the fullest, and it allows them to develop friendships and close relationships. These developments eventually lead to tolerance and acceptance of difference in all of society. To Live Freely... (2006) explores this idea through the telling of stories of people with intellectual disabilities living in the community in Belgrade, Serbia.
Deinstitutionalisation and Community Living Problems and Priorities (2006) by Jim Mansell, sets out priorities for the future development of community services. It explores reasons for variability in the quality of community-based services for people with intellectual disabilities and highlights important lessons for countries starting to modernize their services. The paper concludes that success is likely to require a renewed focus on demonstrating improvement in the quality of life of people with intellectual disabilities and a change in staff role to provide more facilitative, enabling support of individuals, especially those with the most severe or complex disabilities.
Expenditure on the Residential Care of Children in the Republic of Moldova: A Financial Analysis Based on 2005 Budget Data (2006), by David Larter and Eugenia Veverita, reports on the financial costs of residential care for children in the Republic of Moldova, highlights significant financial inefficiencies, and advocates for closure of residential institutions. The document is available on the website of the Better Care Network, New York, USA.
Emerging Practices in Community-Based Services for Vulnerable Groups: A Study of Social Services Delivery Systems in Europe and Eurasia (2006) was prepared by Rebecca T. Davis for the Social Transition Team of the USAID Bureau for Europe and Eurasia (E&E). The report is the result of a study of promising practices in community-based care for vulnerable groups conducted in five countries (Armenia, Azerbaijan, Bosnia, Romania, and Russia) in the E&E Region between September 2004 and March 2005. Of particular interest is how these countries are moving from residential care to family-focused, community care models utilizing internationally recognized standards for children and youth, elderly, disabled, and minority groups (with an emphasis on Roma).
Supported Housing for People with Severe Mental Disorders (2006) by Chilvers, R.; Macdonald, G.M.; and Hayes, A.A. Many people with serious mental illnesses need support living in the community. For some people this takes the form of supported housing. In this review we looked for the best evidence for the effects of this type of housing - and found none. Whether or not the benefits outweigh the risks are currently only a matter of opinion, debate and informal reports. Well-designed, conducted and reported randomized trials are needed in this area. The paper is available from the Cochrane Database of Systematic Reviews.
Evaluation of the Family Support and Foster Care Project (FS&FC) and Prevention of Infant Abandonment and Deinstitutionalisation Project (PIAD) (2006), evaluates two deinstitutionalization projects that were initiated in Georgia in 2001 and 2002, respectively. In addition to describing the projects and discussing their effectiveness, the report offers recommendations on how to improve existing services. The report was prepared in partnership by the Georgian Institute for Policy Studies, the Development Researchers' Network, and UNICEF, Regional Office for CEE/CIS.
Family Attitudes To Deinstitutionalisation: Changes During And After Reform Years In A Scandinavian Country (2006), by Jan Tøssebro and Hege Lundeby, addresses the question of whether, after a family member has been relocated from an institution to community care, a family's preference for community services is short-term or lasting, concluding that the preference is not short-term. The article was published in the Journal of Intellectual & Developmental Disability.
Community-Based Care Leads To Meaningful Improvement for Children And Youth With Serious Mental Health Needs (2006) presents data from the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) showing that children and youth in systems of care spend less time in inpatient care, experience fewer arrests, make improvements in their overall mental health and do better in school than before enrollment.
Life Connections is the seasonal newsletter from Community Living Services (CLS), Wayne, Michigan, USA. The newsletter offers positive stories of community living from the CLS experience.
Promising Practices in Community-Based Social Services in CEE/CIS/Baltics (2005), by Rebecca T. Davis, provides a framework for analysis of community-based social welfare services and linkages with government structures in CEE, CIS, and the Baltic states. The report includes analysis of alternative care provision, de-institutionalization, programming for children with disabilities, standards of care, and overall social welfare sector reform. The report was produced for USAID and is available on the website of the Better Care Network, New York, USA.
Services for Children in Difficulty: Residential Care/Community Based Services (2005), by David Larter and Eugenia Veveritsa, explores the costs and advantages/disadvantages between two models of services for children in difficulty in Moldova. One model is built on the premise of combining education and care within the framework of large residential schools (internats); the other is based upon the provision of education in community schools while another agency provides support services to families and children within their own communities. The paper is available on the website of the Better Care Network, New York, USA.
Family Matters: A Study of Institutional Child Care in Central and Eastern Europe and the Former Soviet Union (2005), by Richard Carter, discusses the advent and perpetuation of institutional care in Central and Eastern Europe and the Former Soviet Union prior to and since the end of the communist regime. It also provides examples of family-based care as models of care to substitute institutional care and offers recommendations to donors, NGOs and governments for child care reform based on their experience in CEE and FSU. The study is available on the website of EveryChild, London, United Kingdom.
Status of Institutional Closure Efforts in 2005, a Policy Research Brief from the Research and Training Center on Community Living at the University Of Minnesota, examines and summarizes the research and policy issues that policymakers may face as they consider whether to increase, reduce, or close institutions. A substantial resource list is included, as well.
Parental Involvement in Residential Care and Perceptions of Their Offspring's Life Satisfaction in Residential Facilities for Adults with Intellectual Disability (2005), by Chaya Schwartz, examines parental involvement in relocation and post-placement care of offspring in residential facilities for adults with intellectual disability, as well as the characteristics of residents, parents, and residential institutions and the effect of those variables on parental perceptions of their offspring's life satisfaction. The article was published in the Journal of Intellectual & Developmental Disability and is available for a fee from Taylor & Francis Group.
Factors Associated With Outcome in Community Group Homes (2005), by Jonathan Perry and David Felce, discusses the variability found in the quality of residential services and the tendency for residents' quality of life to co-vary with their ability level. The article was published in the Journal of Intellectual & Developmental Disability.
Living Independently and Being Included in the Community (2005) is Inclusion International's response to a United Nations draft text in preparation for the international convention on the protection and promotion of the rights and dignity of persons with disabilities. In December 2001, the United Nations General Assembly created an Ad Hoc Committee for the purpose of working towards such an international convention. The Committee prepared a draft report in preparation for the convention, and Inclusion International's response to the Committee report is focused on independent living and community inclusion.
Increasing Population of Older Adults with MR Require Health Interventions and Prevention Strategies (2005), by Kathleen Fisher and Paul Kettl, stresses primary care providers need to be aware that elders with MR will comprise an increasing part of their practice, and that they present with many chronic conditions.
CBR: A Strategy for Rehabilitation, Equalization of Opportunities, Poverty Reduction and Social Inclusion of People with Disabilities (2004) is a joint position paper from the ILO, UNESCO, and WHO. It focuses on community-based rehabilitation as an effective strategy for increasing opportunities for people with disabilities. The document emphasizes the importance of the direct participation of people with disabilities in planning and implementing community-based rehabilitation programs, the need for increased collaboration among sectors providing services, and the need for government support and development of national policies.
Beyond De-Institutionalisation: The Unsteady Transition towards an Enabling System in South East Europe (2004), from Handicap International South East Europe, addresses the unsteady transition towards an enabling system aimed at facilitating the full participation of people with disabilities. It is meant to serve as a base for further research.
The "Community for All" Tool Kit (2004) is a useful set of resources for promoting deinstitutionalization and institutional closure. The tool kit is a product of collaboration between the Research and Training Center on Community Living, the Center on Human Policy at Syracuse University, the American Association On Intellectual And Developmental Disabilities (AAIDD), the Arc of the United States, the Council on Quality and Leadership, and the National Association of Councils on Developmental Disabilities.
Children in Institutions: Prevention and Alternative Care (2004), by Bragi Gudbrandsson, is a Council of Europe document which contains an overview of alternative care in Europe, outlines the effects of institutions on children, provides statistical information, and highlights the different approaches of child protection systems within Europe. It discusses reforming institutional care, foster care, post-care support, and the role of the social worker. The document is available on the website of the Better Care Network, New York, USA.
Components of a Modern Mental Health Service: A Pragmatic Balance of Community and Hospital Care (2004), by Graham Thornicroft, MD and Michele Tansella, MD, aims to provide an evidence base for the debate about whether mental health services should be provided in community or hospital settings. The article concludes that both community and hospital services are necessary in all political/geographical areas, regardless of their level of resources. The article was published in the British Journal of Psychiatry.
Minimum Standards for Day Care Centers for Children with Disabilities (2004), from the Romania National Authority for Child Protection and Adoption, outlines standards for advocacy and relationships with the community, activities, administration and management, human resources, and inter-institutional collaboration.
Health Financing for Poor People: Resource Mobilization and Risk Sharing (2004), by Alexander S. Preker and Guy Carrin, discusses the merits of community involvement in the financing of health care, with a particular focus on low-income countries. The document stresses that community financing schemes should complement, not replace, strong government involvement in health care financing and risk management. To order the document from the World Bank, please click here.
Making Social Inclusion a Reality: The Challenge for People with Mental Disabilities in Central and Eastern Europe (2003), by MHI Director Judith Klein and MHI Legal and Policy Consultant Camilla Parker addresses the challenges to deinstitutionalization and achieving equal citizenship for people with mental disabilities in Central and Eastern Europe. The article was published in the autumn 2003 issue of Eurohealth.
Central Asia: Turning to the Taeyip (2003), by Botagoz Kassymbekova. With their mix of religious guidance and sympathy, Central Asia's traditional healers are proving a popular alternative to psychiatric help. This article is one in a series commissioned and published by Transitions Online (TOL) and MHI.
Czech Republic: Enabling in a Disabling System (2003), by Katya Zapletnyuk. NGOs have brought care in the community to the country, but the Czech health system is still structured against the reintegration of people with mental-health problems. This article is one in a series commissioned and published by Transitions Online (TOL) and MHI.
Latvia: A Cat at the Window (2003), by Ieva Leimane-Veldmeijere. An advocate for community-based health care tells how NGOs, health professionals, and village authorities are working to establish Latvia's first group home for people with mental disabilities. This article is one in a series commissioned and published by Transitions Online (TOL) and MHI.
Romania: Including the Excluded (2003), by Razyan Amariei. How a self-help initiative proved that institutionalization and exclusion are not the only options for the intellectually disabled. This article is one in a series commissioned and published by Transitions Online (TOL) and MHI.
Children in Institutions: The Beginning of the End? (2003), by María Ángeles García Llorente, Laura Martínez-Mora Charlebois, Valerio Ducci, and Ana María Farías, describes some European and Latin American countries' movement away from institutionalization of children and towards a reform of social child protection policies with ideals such as human rights, freedom and citizenship of children as the basis for change. The paper is available from the UNICEF Innocenti Research Centre.
Close the Institutions for the Intellectually Disabled: Everyone Can Live in the Open Society (2003), by Karl Grunewald, Former Head of Division for Care of People with Disability, National Board of Health and Welfare, Stockholm, Sweden. This pamphlet discusses the human rights aspect of community living, the psychological effects of living in an institution, principles for inclusive living, the unique situations for children, youth, and adults, and the question of renovation of institutions.
The Health Evidence Network prepared a synthesis report entitled, What are the arguments for community-based mental health care? (2003). The report outlines findings which indicate that balanced care - a balance between community-based care and brief and limited hospital stays - is supported by the bulk of professional opinion.
Changing Minds, Policies and Lives: Improving Protection of Children in Eastern Europe and Central Asia, Redirecting Resources to Community-Based Services (2003), from UNICEF and the World Bank, provides a framework to help countries re-orient their financing systems for social care in such a way as to facilitate a program of reform. The ultimate goal is for countries to move away from institutional care towards more family-based and inclusive care programs which are generally more effective in meeting social needs and which are, at least on a unit-cost basis, less expensive.
The Leave No Child Out Campaign factsheet (2002), from the NGO/UNICEF Regional Network for Children (RNC), emphasizes that children belong in families and communities, and that placing any child in an institution should be the very last resort. Institutionalization - no matter how well intentioned - hinders intellectual, physical, emotional and social development. The younger the child and the longer the time spent in institutions, the greater the damage. Children in institutions are deprived of the opportunities to develop their potential, and in many cases, they are deprived of their most fundamental rights. The document is available on the website of the Better Care Network, New York, USA.
The World Health Organization and the Swedish Organizations of Disabled Persons International Aid Association developed a two-part study, Community-Based Rehabilitation as we have experienced it ....voices of persons with disabilities (2002). The study aims to examine the impact of community-based rehabilitation programs on the quality of life of disabled persons and to identify which community-based rehabilitation initiatives are perceived as being the most useful. The study does not attempt to evaluate the different programs in relation to their particular objectives or methods; rather, it aims to give voice to the participants in programs with different goals, structures and strategies. Part One of the study is available here. Part Two is available here.
Children and Disability in the Context of Family Breakdown in Central and South Eastern Europe and the Former Soviet Union (2001), by Elayn Sammon, is a study on children with disabilities in the context of family breakdown. It includes overviews and statistics from 10 countries, a call for strengthened family support services, and draft guidelines on how child agencies can better mainstream these issues into their work. The study is available from EveryChild, London, United Kingdom.
Consumer Roles in Monitoring Community Services for People with Developmental Disabilities (2000), written by Charlie Lakin for the Home and Community-Based Services Resource Network, provides information on the benefits and challenges of a consumer monitoring program in California, USA.
Building Stronger Communities for All: Thoughts about Community Participation for People with Developmental Disabilities (1999), by Robert Bogdan and Steven J. Taylor of the Center on Human Policy, Syracuse University, Syracuse, New York, USA, was prepared for the President's Committee for People with Intellectual Disabilities' Forgotten Generations Conference, February 21-22, 1999. The essay presents thoughts and observations on what it means for people with developmental disabilities to be part of the community.
A Chance to be Made Whole: People First members being friends to tear down institution walls (1997), by People First of Tennessee, discusses the possibilities and challenges for self advocates who work for deinstitutionalization and who attempt to support residents of institutions as they move into the community.
Analysis of Expenditures and Outcomes of Residential Alternatives for Persons with Developmental Disabilities [Article abstract] (1997), by Roger J. Stancliffe and K. Charlie Lakin, examined expenditures, staffing, and outcomes for 116 adults with intellectual disabilities who moved from state institutions in Minnesota, USA, to various community living settings and a comparison group of 71 persons who remained institutionalized. The study found that community residences were less costly and had more favorable staffing and uniformly better outcomes than did institutions. The full article is available for a fee from the American Association on Intellectual and Developmental Disabilities.
The Social Meaning of Mental Retardation: Two Life Stories (1995, ISBN 0-8077-3343-1), by Robert Bogdan and Steven J. Taylor, addresses the question, "What does it mean to be ‘mentally retarded'?" For answers, the authors interview two experts, "Ed Murphy" and "Patty Burt," former inmates of institutions. The new edition of this study concludes with a postscript that discusses what happened to Ed and Patty in the decade after the original release.
Quality Health Care for People with Developmental Disabilities: A guide for health professionals (1990), from the Institute on Community Integration at the University of Minnesota, USA, provides information on appropriate, comprehensive health care that should be reasonably expected for people with developmental disabilities in all communities. The publication contains information on health care needs of people with developmental disabilities and recommendations for health care practices adapted from accepted standards of health care for the general USA population. The guide is available from the website of the Minnesota Governor's Council on Developmental Disabilities (USA).
What's Worth Working For? Leadership for better quality human services (1989), by John O'Brien, discusses three activities of leadership for improved quality of community-based service for people with intellectual disabilities. First, shaping direction through vision. Second, identifying distinctive contributions by clarifying legitimate purposes of services for people who need long term assistance. And, third, guiding daily work on problems by defining the accomplishments of effective services.
Present and future Challenges in Lithuanian Mental Health Policy: shifting from deinstitutionalization towards community integration, by Dovile Juodkaite, discusses the necessity to put an end to the social exclusion and violation of human rights of people with mental disabilities. It maintains that the practice of placing people with mental disabilities in closed residential institutions must end and thus aims to affect deinstitutionalization policy in Lithuania.
Fact Sheet: Children in Residential Treatment Centers from the Bazelon Center for Mental Health Law, Washington, D.C., United States, outlines the situation of, and in particular the problems within, residential treatment centers for children with mental health problems. The fact sheet maintains that home- and community-based services are both more effective and more efficient than services in institutional settings.
The Included in Society project researched the number of people in institutional care in 22 European Union and E.U. accession countries. The aim was to make politicians, policy makers, and the general public aware of the rights of people with disabilities who are segregated in large institutions and to demonstrate the need for providing alternative community-based care. The Open Society Mental Health Initiative worked on this project in collaboration with several other international disability NGOs. The project was supported by the European Commission, DG Employment & Social Affairs, Unit on People with Disabilities.
The American Association on Intellectual and Developmental Disabilities (AAIDD) offers an article titled "What's in a SIS Score: User Experiences of the Supports Intensity Scale." In the article, published in the second issue of the SIS Vantage newsletter, three users of the Supports Intensity Scale share different, yet valuable uses of this planning tool for persons with intellectual disabilities. "What's in a SIS Score" highlights the different, yet valuable uses of SIS assessments in providing person-centered services and supports to people with intellectual disabilities. Since its publication in 2004, the Supports Intensity Scale, an assessment tool for persons with intellectual disabilities, has been adopted by six U.S. states and is in use in the Netherlands, Hong Kong, and Canada, and by providers across the United States. The SIS is published by the American Association on Intellectual and Developmental Disabilities (formerly the American Association on Mental Retardation). To download a free article on SIS, please click here.
The Skinfaxe Institute in Uppsala, Sweden, maintains a website with numerous links to useful publications and reports in the area of intellectual disability and deinstitutionalization. All articles and books are available to download in full. Also included on the site are descriptions of deinstitutionalization and community-living projects in Europe, Jordan, and China.
Examples of Good Practice in the Field of Community-Based Services for Children and Young People with Intellectual Disabilities in Romania was created by Inclusion Romania - the National Federation of Organizations for Persons with Intellectual Disabilities from Romania, in Bucharest. The document compiles program information from numerous organizations providing community-based services in the country. The document also discusses the national strategy for the equalization of opportunities for persons with disabilities, agreed upon in 2000 by members of Inclusion Romania and representatives of several State Ministries, and it discusses obstacles to further developing community-based services for people with intellectual disabilities.
The website of Steve Gold, an attorney from Philadelphia, Pennsylvania, USA, provides articles offering information on enforcing the Americans with Disabilities Act. ICF-MRs and Money Follows the Person, an article released in June, 2006, focuses on alternatives to institutionalization in the United States.
The European Coalition for Community Living publishes a quarterly newsletter with information on deinstitutionalization in general, deinstitutionalization initiatives, and upcoming events. To access the newsletter, please select from the issues listed below:
Institution Watch is a publication of the People First of Canada-CACL Joint Task Force on Deinstitutionalization. The publication monitors progress toward full community living for all people with intellectual disabilities in Canada.
The Center on Human Policy (Syracuse University, Syracuse, New York, United States), provides on its website a list of resources and reports on community inclusion. The topics addressed are many and varied and include: community supports/inclusion, early childhood, friendships/relationships, gender and disability, inclusive education, individualized funding, institution closure, person-centered planning, perspectives of people with disabilities, self advocacy and self determination, and supported employment. To view the resource list, please click here. Links to selected articles are available below.
- In Support of Families and Their Children (2000), by Nancy Rosenau.
- Acting On A Vision: Agency Conversion At Kfi, Millinocket, Maine (2000), by Pam Walker
- Assistance with Integrity: The Search for Accountability and the Lives of People with Developmental Disabilities (1994), by John O'Brien and Connie Lyle O'Brien
- Supported Living: What's the Difference? (1993), by John O'Brien
- Personal Relationships and Social Networks: Facilitating the Participation of Individuals with Disabilities in Community Life (1991), by Zana Marie Lutfiyya has not been updated, but updated information can be obtained by contacting the Center on Human Policy.
- On Choice, by Steven J. Taylor
- Unfolding Capacity: People with Disabilities and Their Allies Building Better Communities together, by John O'Brien and Connie Lyle O'Brien.
- A Home of One's Own, by Bonnie Shoultz
- From a Community Residence to a Home of Their Own, by Pam Walker
- Not Just A Place To Live: Building Community In Toronto, by Pam Walker and Susan O'Connor
The World Bank has produced several reports on community-based living:
- Redirecting Resources to Community Based Services (2003), a World Bank concept paper, provides information on redirecting financial resources away from institutional systems of care and towards inclusive community-based services. The focus of the paper is on Central and Eastern Europe and the former Soviet Union.
- Community-Based Social Services: Practical Advice Based upon lessons from Outside the World Bank (2003) assumes that community-based social service interventions can have sustainable and effective outcomes. The paper gathers information outside of the Bank, in both developed and developing countries, on design and delivery of successful community-based social service initiatives.
- Moving from Residential Institutions to Community-Based Social Services in Central and Eastern Europe and the Former Soviet Union (2000) seeks an answer to how the region can transition from relying on residential institutions to developing community-based social services. The document is based on a review of successful strategies in both developed and transition countries.
The Japanese Society for Rehabilitation of Persons with Disabilities has several articles and reports available on the topic of community services and community-based living in Japan:
- Attention Shifts to Group Homes for Intellectually Disabled Individuals (July 2003)
- Japanese Survey Reveals Weak Supports for Life in the Community (May 2003)
Institutional Conditions and Human Rights Violations
Caring for Orphaned, Abandoned and Maltreated Children: Bucharest Early Intervention Project - Powerpoint Presentation (2007), by Charles Nelson, et al., summarizes the Bucharest Early Intervention Project's findings on the long-term impacts of institutional care on young children. The findings show that institutional care has long term damaging effects on brain development. The document is available on the website of the Better Care Network, New York, USA.
Assessment Report: On the Conditions and Perspectives of the Institutions for Children in Bulgaria and of the progress made in implementing the governmental obligations under the UN Convention on the Rights of the Child (2006), from the Bulgarian Helsinki Committee, presents the dynamics of the development of the institutional child care system in Bulgaria since 2003.
Monitoring Report on Closed Institutions in Latvia (2006), by the Latvian Centre for Human Rights with funding from the European Commission, finds that, concerning mental health care in Latvia, community based services are almost unavailable. In most cases, mental health care consumers receive regular treatment at psychiatric hospitals or must move to a social care home for the rest of their lives. The main identified problems in psychiatric hospitals are that legislation has not been harmonized with international human rights standards and that Latvia continues to violate the requirements of Article 5 of the European Convention for Protection of Human Rights and Fundamental Freedoms.
Human Rights in the Ukrainian Boarding Schools: Freedom from Cruel and Degrading Treatment (2006) documents human rights abuses in boarding schools in Ukraine. The report finds that although Ukrainian legislation and state programs guarantee protection of the rights of the child, the guarantees fall short of the rights provided for in the UN Convention on the Rights of the Child and, in practice, these rights are not always upheld within Ukrainian boarding schools. The report outlines recommendations for change including a call for the Ukrainian government to pay special attention to the needs of children with disabilities such as accessibility of education, individual training, and socialization. The complete report in Ukrainian is not available at this time.
Human Rights in Ukrainian Medical Institutions for Children and in Children's Psychiatric Hospitals (2006) from NGO M'ART outlines the legal rights of children in hospitals and the functioning conditions of children's medical services. The report argues that, although Ukrainian legislation and programs contain guarantees of child protection, the state youth policy does not cover the rights provided for in the UN Convention on the Rights of the Child, to which Ukraine is a party. The report also documents violations of children's rights on the part of medical staff in hospitals across seven regions of Ukraine. The report's Table of Contents, Acknowledgements, and Introduction are available in English by clicking here. The full report in Ukrainian is available by clicking here.
From 'Cage Beds' to Inclusion: The Long Road for Individuals With Intellectual Disability in the Czech Republic (2006), by Barbara H. Vanna and Jan Siska. Abstract: In the Czech Republic, individuals with intellectual disabilities continue to be institutionalized in large, remote, state-run institutions and as a result are isolated from community interaction. Some practices associated with these institutions are coming to be seen as human rights violations. Although non-governmental organizations (NGOs) offer alternatives to institutionalization, demand for such services exceeds supply. Czech legal structure hinders NGO funding. Large state institutions continue to be built. This article was published in Disability & Society.
Canadian television station CTV News produced a two-part story on the former Woodlands School, an institution for children in British Columbia (October 2006). Most children sent to Woodlands were children with intellectual disabilities. Woodlands was closed in 1996, and today a group of about 60 survivors of the institution is seeking compensation for the abuse that they suffered there. To read and/or view the full report, please click here.
Archipelago of the Forgotten - Social Care Homes for People with Mental Disorders in Bulgaria (2005), by the Bulgarian Helsinki Committee, is a report on the situation of people with mental disabilities in state institutions in Bulgaria.
Research on Institutional Care of Vulnerable Children (2005), by the North American Council on Adoptable Children, gives a brief overview of the key findings of academic research into the effects of institutional care for vulnerable children. The literature review examines children served by group care, outcomes, cost, and policy implications. Other literature reviews examined the mental health implications of group care. The document is available on the website of the Better Care Network, New York, USA.
Attachment in Institutionalized and Community Children in Romania, (2005), by Charles H. Zeanah, Anna T. Smyke, Sebastian F. Koga, and Elizabeth Carlson, examines attachment in institutionalized and community children 12 - 31 months of age in Bucharest, Romania. As predicted, children raised in institutions exhibited serious disturbances of attachment as assessed by all methods. These results held even when other variables, such as cognitive level, perceived competence, and quantitative interaction ratings, were controlled for. The article was originally published in Child Development (Vol. 76, No. 5, pp. 1015 - 1028) and is available on the website of the Better Care Network, New York, USA.
Children in Institutional Care: The Status of their Rights and Protection in Sri Lanka (2005), by Save the Children Sri Lanka and Save the Children Canada shows institutionalization becoming an option for Sri Lankan families in difficult circumstances in the absence of alternative forms of care. While parents and guardians institutionalize children to provide them with material comforts, children highlight their need for emotional care. Children also spoke out against the lack of privacy, integrity, identity and the absence of avenues of self-expression within institutions. The document is available on the website of the Better Care Network, New York, USA.
Designing Research to Study the Effects of Institutionalization on Brain and Behavioral Development (2003), by Charles H. Zeanah, Charles A. Nelson, and Nathan A. Fox, provides an overview of the largest longitudinal investigation of institutionalized children less than 2 years old ever conducted. The Bucharest Early Intervention Project is an ongoing randomized controlled trial of foster placement as an alternative to institutionalization in abandoned infants and toddlers being conducted in Bucharest, Romania. The article was originally published in Development and Psychopathology and is available on the website of the Better Care Network, New York, USA.
In 2003, the Mental Disability Advocacy Center in Budapest, Hungary completed research on the use of cage beds in four European Union accession countries: the Czech Republic, Slovakia, Hungary and Slovenia. The resulting report, Cage Beds: Inhuman and degrading treatment in four EU accession countries, provides general information on the use of cage beds, country-by-country documentation, and recommendations for change.
Abandoned To the State: Cruelty and Neglect in Russian Orphanages (1998), a Human Rights Watch report, addresses the situation of institutionalized children in Russia. It outlines numerous recommendations to the Russian state government, the United Nations, the Council of Europe, donor governments, and NGOs.
Amnesty International has reports available on institutional conditions in Bulgaria and Romania: