Review ArticleA critical assessment of supported decision-making for persons aging with intellectual disabilities
Section snippets
SDM's goals
SDM has the potential to be of great importance to persons aging with intellectual disabilities (ID). The parents of persons with ID are typically a primary source of decision-making support and assistance.2 As parents age and pass away, however, decision-making systems can become destabilized. Currently, the U.S. legal system's primary response to addressing and planning for such changes is to allow parents or other interested parties to petition a court for guardianship over an individual
Findings of literature review
We conducted this review of the relevant empirical literature to evaluate whether, and under what conditions, SDM processes are likely to achieve the goals set forth by their proponents. We canvassed the psychological, sociological, social work, and legal literature to identify empirical reviews or analyses of SDM, or evaluations that included or referenced empirical work. We did no formal quality evaluation—after finding how sparse the empirical literature is—but focused instead on summarizing
Conclusion
Our review indicates that the evidence base on SDM is currently insufficient to determine whether SDM processes either can or do achieve their goals. Given the problems with guardianship, and the need to develop less restrictive alternatives to guardianship in order to reduce the incidence of those problems, SDM should be explored as an alternative to guardianship. Nevertheless, in order for policymakers to make informed decisions as to whether and under what conditions SDM should be used in
References (27)
Moving towards substituted or supported decision-making? Article 12 of the convention on the rights of persons with disabilities
Eur J Disabil Res
(2011)Guardianship for your own good: improving the well-being of respondents and wards in the USA
Int J Law Psychiatry
(2010)- et al.
Evidence-based practices in the field of intellectual and developmental disabilities: an intentional consensus approach
Eval Program Plann
(2011) The emergence of assisted (supported) decision-making in the Canadian law of adult guardianship and substitute decision-making
Int J Law Psychiatry
(2000)- et al.
A typology of reviews: an analysis of 14 review types and associated methodologies
Health Info Libr J
(2009) Ageing With a Lifelong Disability
(2004)Wards of the State: A National Study of Public Guardianship
(2005)Representation Agreement Act, R.S.B.C
(1996)Issues in Human Rights Protection of Intellectually Disabled Persons
(2010)Out of sight: Human rights in psychiatric hospitals and social care institutions in Croatia
(2011)
Position Paper – Key Elements of a System for Supported Decision-Making
Legal capacity in the disability rights convention: stranglehold of the past of lodestar for the future
Syr J Int Law Comm
Guardianship for persons with mental illness—a legal & appropriate alternative?
St. Louis Univ J Health Law Pol’y
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Support for development of this paper was provided by the National Institute on Aging grant no. P30 AG012846 to the University of Michigan and P30 AG034464 to Syracuse University. Portions of the research included in this paper were presented orally at the meeting titled ‘‘Aging with disability: Demographic, social and policy considerations’’ organized by the Interagency Committee on Disability Research in Washington, D.C. on May 17–18, 2012.