Review Article
A critical assessment of supported decision-making for persons aging with intellectual disabilities

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Abstract

Supported decision-making is increasingly being promoted as an alternative to guardianship for persons aging with intellectual disabilities. Proponents argue that supported decision-making, unlike guardianship, empowers persons with disabilities by providing them with help in making their own decisions, rather than simply providing someone else to make decisions for them. To evaluate the empirical support for these claims, we reviewed the evidence base on supported decision-making. Our review found little such empirical research, suggesting that significant further research is warranted to determine whether—and under what conditions—supported decision-making can benefit persons with intellectual disabilities. Indeed, without more empirical evidence as to how supported decision-making functions in practice, it is too early to rule out the possibility it may actually disempower individuals with disabilities by facilitating undue influence by their alleged supporters. We therefore suggest several key areas for future research.

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

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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.

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