The Open Society Mental Health Initiative

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Deinstitutionalization and Community Living

 

A priority area for MHI is to promote the closure of long-term residential institutions within the program's target region, Central and Eastern Europe and the former Soviet Union. As former residents of institutions move to family-scale housing in the community, service providers must ensure that appropriate supports are in place so that people have meaningful opportunities to participate in society. Therefore, simultaneous with the closure of institutions, sustainable community support services that address the individual needs of people with mental disabilities must be developed.

 

 Deinstitutionalization and Community Living in Easy to Read.

 

Residential Institutions in the Target Region

Around the world, countless people with mental disabilities remain trapped in institutions which deny them the right to live as autonomous and integrated members of their communities. Historically, government policy across Central and Eastern Europe and the former Soviet Union has been to segregate people with mental disabilities in long-stay residential institutions where the living conditions are often clear violations of basic human rights. Membership in, or candidacy for membership in, the European Union has done little to promote the social inclusion of people with mental disabilities. In the member states of the European Union, new institutions for people with mental disabilities continue to be built despite the fact that some governments have stated their intent to close institutions.

 

Institutionalization without justification perpetuates the social exclusion of people with mental disabilities and is, in itself, a violation of human rights. Segregating people, barring them from access to education and employment, denying them the right to choose where and how they live and with whom they associate, solely on the basis of a mental disability label, is unacceptable. The nature of such long-stay institutions is, in itself, dehumanizing, and their existence is an anathema to the concept of a civil and open society in which the rights of all citizens are respected.

 

Institutional Closure

Slowly, the situation for people with mental disabilities in the region is beginning to change as some large-scale initiatives are underway to close institutions and provide appropriate and sustainable community living services.

 

The European Union's Phare program is a pre-accession instrument which provides funding to candidate countries to assist them with their preparations for entry into the EU. Currently, Phare is helping to fund 36 projects in institutional reform in Romania. The projects selected for funding will create community-based protection and support services for people with disabilities, assisting consumers to be independent and active participants in their communities. Projects will also work to end discrimination against people with disabilities. Phare will fund deinstitutionalization projects in Bulgaria with contracts beginning in November 2006.

 

Other large-scale funding is being provided in Romania through the ChildNet program - a partnership between USAID/Romania, the Romanian National Authority for Child Protection and Adoption, and World Learning (a US-based international development organization). Approximately 8 million USD will be available to NGOs in Romania for the overall improvement of the child welfare system. Many of the programs and NGOs are focused on closing institutions for children with mental disabilities and on providing appropriate community-based housing and other support services. To learn more, please read the final report of the program.

 

This movement towards deinstitutionalization is prompting local and national governments, self-advocacy groups, NGOs, and other interested parties to examine and improve the community supports that are available to people with mental disabilities living in local communities. However, while there are pockets of high-quality, community-based services in the region, and while a number of governments have stated their intentions to move toward a community-based model, much work remains to be done.

 

Community Living

People with mental disabilities, like the global population, constitute a diverse group of individuals with a variety of abilities. In a community, each person brings her or his particular gifts and talents which can benefit society as a whole. Similarly, each person also has individual needs for community support that will allow him or her to best be included as a member of the general public. Community living services aim to facilitate the process of community integration for people with mental disabilities by not only advocating for the closure of institutions but also by providing the social support services that people require in order to live independently and to their fullest potential.

 

The opportunities to live in a community, make decisions about one's living situation, and be included as a member of society are not special privileges but fundamental human rights. The Supreme Court of the United States upheld this statement in 1999 when it ruled on Olmstead v. L.C. asserting that unnecessary segregation in institutions of individuals with disabilities may constitute discrimination. The Court held that unjustified segregation in institutions is discrimination not only because it perpetuates stigma but also because confinement in an institution severely curtails everyday life activities such as family relations, social contacts, work, and education. The Court determined that services to persons with disabilities must be provided "in the most integrated setting possible."

 

Some of the community living services that might be provided to people with mental disabilities are advocacy, support for self-determination and self-advocacy, training in independent living skills, in-home assistance with daily life tasks, overall health training and counseling, social interaction, and supported employment. Above all, the most appropriate and effective community supports for people with mental disabilities are those which recognize the individual and each individual's capacity for decision-making about his or her own life. Best practices include those services that adopt individualized approaches, that involve the consumer in decision-making, and that provide services tailored to individual needs. To view a short film on community living in Croatia, please click here.

 

In this section you will find examples of current best practices in community living services; information on the independent living movement and the concepts of person-centered planning and self determination; and numerous useful links including access to publications and reports related to deinstitutionalization and community living.

 

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Highlights

1) Dumping Grounds For Forgotten People

An investigation by Bulgarian journalist Yana Buhrer Tavanier on the mental care institutions in Bulgaria, Romania and Serbia.   

Please visit the website dedicated to the investigation and view the new promotional video.


Judith Klein, director of the OSMHI (Open Society Mental Health Initiative) has written a foreword to the article, which appears in the newsletter of the European Coalition for Community Living, Issue No. 10, October 2009 and also on the investigation website.


2) Report of the Ad Hoc Expert Group on the Transition from Institutional to Community-based Care

A report on the Transition from Institutional to Community-based Care was handed over to Commissioner Vladimír ?pidla on September 23, 2009. The report was drafted by a group of independent experts convened by Commissioner Spidla in February 2009 to address the issues of institutional care reform in their complexity.  The report is also available in Bulgarian, Croatian, Hungarian, Romanian.

Films

Karin Dom - a training and resource centre for children with special needs and their families

This short film was made following a BBC production about a children's institution in Mogilino, Bulgaria. The film features MHI partner organization Karin Dom and highlights what community-based alternatives for children can be like in Bulgaria.

UN Disability Convention

The Convention on the Rights of Persons with Disabilities received its 20th ratification on April 3, 2008, triggering the entry into force of the Convention and its Optional Protocol on May 3, 2008. This marks a major milestone in the effort to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms of persons with disabilities, and to promote respect for their inherent dignity.

Information on the convention process:
Convention in Easy to Read
View the list of signatories
Countries that have ratified the Convention
ICRPD Ratification Toolkit
Convention and Inclusive Education
View more information

 

News reports on the Convention:
Agreement on New UN Convention
Urging Implementation
Archive Webcast: Convention Signing 
Record Number of Countries Sign
Secretary-General Ban Hails Entry Into Force Of Treaty On Disability Rights
More news reports

Publications:
UN Handbook for Parliamentarians on the Convention on the Rights of Persons with Disabilities and its Optional Protocol
First Implementation Manual For The United Nations Convention On The Rights Of Persons With Disabilities (Addressed Specifically To Users And Survivors Of Psychiatry)


Ratify Now (The campaign to support global grassroots efforts to ratify the Convention on the Rights of Persons with Disabilities).

Films about Inclusion

Foster Care for Children with Disabilities: English ** Russian

I Want to Work and I Can Work!

Living Proof: The right to live in the community

Reality - film on personal assistance

Being an Unperson. A short film about the experience of dehumanization within the care system.

In My Language. A short film about autism and nonverbal communication.

A Way of Describing Autism. A short film by Dave Spicer and Amanda Baggs.

Equalise It!

A Manifesto for Disability Equality in Development Cooperation

The international committee of UK Disabled People's Council (formerly BCODP) has written this manifesto in the light of the signing of the UN Convention on the Human Rights of Persons with Disabilities. 

To read the campaign launch letter, please click here.

Organisations who wish to sign up to the Manifesto are asked to contact Bill Albert or Mark Harrison so that their name and logo can be added to the list of signatories.