Self-Determination and Community Living
Background - The Institutional Model
In long-stay institutions, residents are rarely provided opportunities to voice their desires and have their wishes heard. Nearly every life decision - from daily choices of what food to eat and what clothes to wear, to long-term planning around how to spend time and what types of support or treatment to receive - is made at the institutional level, irrespective of the abilities and preferences of individual residents. In addition, as a result of stigma and discrimination and a traditional emphasis on people's limitations rather than abilities, even people who live outside of institutions are denied opportunities to control their own lives.
Self Determination as an element of Community-Based Services
The philosophy of self determination stems from a fundamental belief in ability and human rights and is an integral element of community-based living for people with mental disabilities. It is founded on the principle that people with mental disabilities have the right to make informed decisions about their lives and the ability to live as responsible citizens in the community. Efforts for deinstitutionalization and the prevention of institutionalization must incorporate self determination in community-based services so that people with mental disabilities are enabled to live independent lives to the greatest degree possible.
Self determination seeks to alter models of service that are seen as preventing the empowering of individuals. Services that utilize a self determination philosophy empower and support clients to make informed decisions about their lives. Self determination also recognizes that equality of opportunity and freedom of choice are balanced with the duty to live as a responsible citizen. Therefore, services oriented for self determination provide the information and support necessary for clients to realize their responsibilities as members of society.
Below are links to organizations and publications which promote self determination for people with intellectual disabilities and people with mental health problems. Included are definitions and models of self determination as well as downloadable self determination tools designed for use by clients, families and service providers.
The Role of the Provider in Person-Centered Care Practice (2006) is a presentation given at The National Council for Community Behavioral Healthcare 36th Annual Training Conference April 8-11, 2006 in Orlando, Florida, USA. The presentation describes one person's road toward recovery from mental health problems through a path of self-determination. The document is available from the Center for Self Determination, Michigan, USA.
Self-Determination: What Is It? Why Is It Beneficial? How Is It Best Taught? (2005), by Sharon Field, examines the value and impact self-determination can have on the lives of persons with disabilities. Key ideas addressed in the document include: that self-determination requires an understanding of one's strengths and limitations and a belief in oneself as capable and effective; that students who help choose their school activities are more motivated to perform those tasks; and that adults can support student self-determination in a variety of ways. The document is available from the Center for Educational Networking, Charlotte, Michigan, USA.
Self-Determination: Supporting Successful Transition (2003), written by Christine D. Bremer, Mera Kachgal, and Kris Schoeller and made available on the website of the U.S. National Center on Secondary Education and Transition, provides information on self-determination in youth with disabilities and offers tips for families and professionals on promoting self-determination in this population.
Conference Briefing Papers on Fostering Mental Health Self Determination at the Individual, System/Financing, and Societal Levels: In 2003, the University of Illinois at Chicago (USA) National Research and Training Center on Psychiatric Disability sponsored "The National Self Determination and Psychiatric Disability Invitational Conference: We Make the Road by Traveling on It." Briefing papers presented at the conference focused on the authors' personal experiences in working towards self determination; critiques of service systems in the United States in regards to self determination; and social barriers to self determination with strategies for breaking through barriers. The papers can be downloaded individually or as one document.
- To view and download individual papers, please click here.
- To download the papers as one document, please click here.
Self Determination Among Mental Health Consumers/Survivors: Using Lessons from the Past to Guide the Future (2002), written by Judith Cook and Jessica Jonikas of the University of Illinois at Chicago (USA) National Research and Training Center on Psychiatric Disability and published in the Journal of Disability Policy Studies, outlines the history of self determination for people with mental health problems, barriers to self determination, contemporary self determination theories, and suggestions for ways in which the past could be used to guide the future for people with mental health problems.
Walking Toward Freedom: One Family's Journey into Self-Determination (2000), by John O'Brien and Connie Lyle O'Brien, describes the philosophy and use of self-determination by telling one woman's personal story. The article is available from the Center for Human Policy at Syracuse University, Syracuse, New York, USA.
Self-Determination and Young Adults: Seeking a State of Mind, by Calvin and Tricia Luker, discusses the difference between guardianship and self-determination as frameworks for the life planning of young people with disabilities. The article is available on http://www.bridges4kids.org/.
Numerous publications and fact sheets are available in the Publications section of the Center for Self Determination website. Titles include:
- Mental Health and Self-Direction: A Shift in Power
- The Promise of Freedom for Persons with Psychiatric Disabilities
- Communicating Self-Determination: Freedom, Authority, Support and Responsibility
Self Determination Framework for People with Psychiatric Disabilities: The Canadian Coalition of Alternative Mental Health Resources produced this short document with a definition of self determination and a description of the various elements of self determination, organized into three groups, or levels.
Self Determination Tools: The website of the University of Illinois at Chicago (USA) National Research and Training Center on Psychiatric Disability offers four documents with advice on advancing self determination services. The documents are designed for use by people with mental health problems.
Fact Sheet on Self Determination: This fact sheet provides a brief definition of self determination for people with disabilities. It outlines four principles of self determination, discusses five values supported by self determination, and describes how the concept of self determination requires a fundamental shift in the system of services provided to people with disabilities. The fact sheet is available from the Center for Human Policy at Syracuse University, Syracuse, New York, USA.
Self-Determination, by Michael Kennedy, is an article written by a self advocate expressing his thoughts about, and experiences with, self-determination. The article is available from the Center for Human Policy at Syracuse University, Syracuse, New York, USA.
Annotated Bibliography of Self Determination Resources: Staff at the University of Illinois at Chicago (USA) National Research and Training Center on Psychiatric Disability and its Self Determination Knowledge Development Workgroup developed this list of resources on self determination for people with mental health problems. While some articles are only available in hard copy, many of the resources listed include links to their online, downloadable versions.
National Coalition on Self Determination (NCoSD), Clifton, Virginia, USA, is a partnership of people with disabilities and family members. NCoSD views the concept of self determination as being organized into four principles: freedom, authority/control, support, and responsibility. As a group, NCoSD members work together in advocating national policies that support these four principles. More information is available at: http://www.nconsd.org/.