The Open Society Mental Health Initiative

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Supported Decision Making

 

People with intellectual disabilities or mental health problems are often denied the right to make their own decisions. This usually happens because it is believed that they do not to fully understand the consequences of their own decisions, or they are considered particularly vulnerable to abuse or manipulation, especially in financial or health matters. There are many well-intentioned motives to keep people with intellectual disabilities or mental health problems safe from harm, potentially caused by their own actions, by taking decision-making out of their hands. As a result, people with intellectual disabilities or mental health problems may be denied the right to personhood and self-determination, denied the opportunity to control their own lives, and are essentially treated as objects rather than subjects of life.

 

In many countries of Central and Eastern Europe, guardianship is overused for people with intellectual disabilities or mental health problems. Guardians often have considerable powers over their wards in all areas of life, which can result in the abuse of rights and restrictions on the freedom of the ward.

 

Alternative to Guardianship: Supported Decision Making

 

In contrast to guardianship, supported decision-making (SDM) is based on the principle that all individuals have a right to self-determination and respect for their autonomy, irrespective of disability. This means all individuals have a will which provides the basis for decision making. This also means that people with disabilities are entitled to necessary supports for exercising their decision-making capacity; for example, decisions made interdependently with family and trusted others should be legally recognized. In other words, SDM envisions that accommodations will be made in the legal system to enable people with intellectual disabilities and mental health problems to exercise their right to self-determination.

 

People with intellectual disabilities and mental health problems need to learn real world skills, have the opportunity to make mistakes, and learn from them. These people need support and tools for developing and using decision-making skills.

 

In this section of the website you will find information about various aspects of supported decision-making, relevant publications and reports, and a list of other useful links.

 

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Selected Sources:

Legal Capacity, Personhood, and Supported Decision-Making (2006), a presentation by Michael Bach, outlines key terms and definitions, concepts, and issues of supported decision-making. As well it presents the position of the Canadian Association for Community Living (CACL) on the provisions about legal capacity in the United Nations Convention on the Rights of Persons with Disabilities.   

 

Legal Capacity: Position Paper (2006), by Inclusion International, asserts the right of every person with an intellectual disability to have their right to make decisions recognized, and to receive the support they require in making those decisions. People should never be asked to give up their legal capacity in order to qualify to receive supports and services.

 

Eliminating the Pervasiveness of Guardianship (2005), a paper by Dohn Hoyle, argues that the principles and practices of person-centered planning and self-determination provide the tools to support individuals with disabilities to have the lives they want in the community, making guardianship unnecessary.

 

Self-Determination and Young Adults: Seeking a State of Mind (2003), an article by Calvin and Tricia Luker, discusses the difference between guardianship and self-determination as supports for the life planning of young people with disabilities.

 

Making Decisions Alliance (MDA) London, United Kingdom, is a consortium of 40 national and regional disability and senior's organizations set up to campaign for legislation on mental capacity, and to support a basic human right to be able to make your own decisions.

 

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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.