Supported Decision-Making: A Viable Alternative to Guardianship?†

The law has traditionally responded to cognitive disability by authorizing surrogate decision-makers to make decisions on behalf of disabled individuals. However, supported decision-making, an alternative paradigm for addressing cognitive disability, is rapidly gaining political support. According to its proponents, supported decision-making empowers individuals with cognitive challenges by ensuring that they are the ultimate decision-maker but are provided support from one or more others, giving them the assistance they need to make decisions for themselves. This article describes supported † This article was supported by a grant from the Administration on Aging and the National Institute on Disability & Rehabilitation Research. An earlier version of this article was presented at a conference entitled Aging with a Disability: Demographic, Social, and Policy Considerations organized by the Center for Aging and Policy Studies at Syracuse University and the Michigan Center on the Demography of Aging at the University of Michigan and held at the U.S. Department of Health & Human Services in May 2012. Another version was circulated for discussion at an October 2012 roundtable entitled Beyond Guardianship: Supported Decision-Making by Individuals with Intellectual Disabilities, hosted at the New York City Surrogates Court by the American Bar Association (ABA) Commission on Disability Rights and the ABA Commission on Law and Aging, in cooperation with the Administration on Intellectual and Developmental Disabilities in the Administration for Community Living, U.S. Department of Health and Human Services. The authors extend thanks to those participating in the above conference and roundtable for their insights, and to Lisa Iezzoni and Arlene Kanter for their helpful comments on earlier drafts. * Professor and Judith Greenberg Seinfeld Distinguished Faculty Fellow, Syracuse University College of Law. J.D., Harvard Law School; A.B., Princeton University. ** Professor, Syracuse University College of Law. J.D., University of Pennsylvania Law School; A.B., A.M., Ph.D., Harvard University. *** Associate Professor, Center for Bioethics and Humanities and Department of Psychiatry, Upstate Medical University. M. Bioethics, University of Pennsylvania; J.D., Yale Law School; B.A., University of Notre Dame. 1112 PENN STATE LAW REVIEW [Vol. 117:4 decision-making and its normative appeal. It then provides a descriptive account of how supported decision-making works based on the empirical literature on supported decision-making as well as that on shared decision-making, a related model used in medical contexts. The article shows how employing supported decision-making in lieu of guardianship, or integrating it into the guardianship system, has the potential to promote the self-determination of persons with intellectual and cognitive disabilities consistent with international and national legal norms. However, we find that, despite much rhetoric touting its advantages, little is known about how supported decision-making processes operate or about the outcomes of those processes. Further research is necessary to design and develop effective supported decisionmaking systems. We therefore propose a series of research questions to help inform policy choices surrounding supported decision-making.