The pressing need to develop and implement evidence-based practices to support people in their communities is especially acute because the demand for quality community services for people with intellectual and developmental disabilities (I/DD) is growing. Of the 4.9 million people with I/DD in the U.S. (as of 2011), 72% lived with a family caregiver (Braddock & Rizzolo, 2013) all of whom are aging and will become unable to provide the individual with care and support in the future. People with I/DD are living longer than at any point in the past. These facts put people with I/DD at increased risk for being placed under guardianship by the state (Glen, 2015), potentially restricting their ability to be self-determined, which could lead to diminished quality of life outcomes and reduced community integration and participation (Blanck & Martinis, 2015: Shogren & Wehmyer, 2015).
Since 1995, the estimated number of adults under partial or total (plenary) guardianship in the U.S. has tripled from .5 to 1.5 million (Schmidt, 1995; Reynolds, 2002; Uekert & Van Duizend, 2011). More than 8 million people receiving Social Security or Social Security Income have a representative payee (guardian) to help manage their benefits (Mcibbon, Nadler, & Vogelmann, 2014).
Less restrictive alternatives to guardianship, like Supported Decision-Making (SDM), protect peoples’ right to make basic choices about their lives in the community; such as where to live, where to work, what activities to engage in, by enhancing their self-determination: empowering them to be “causal agents…actors in their lives instead of being acted upon” (Wehmeyer, Palmer,Agran, Mithaug, & Martin, 2000, p. 440).
While there is no singular definition or model of SDM (Dinerstein, 2012), it generally occurs when people with disabilities use friends, family members, and professionals to help them understand the everyday situations and choices they face, so they may make their own decisions without the “need” for a substitute decision-maker such as a guardian (Blanck & Martinis, 2015; Quality Trust, 2013).
Because SDM is increasingly being advocated for and used in the field, there is a critical need for valid and reliable empirical evidence regarding (1) best practices in SDM, including effective and challenging “support structures and methods; and (2) whether people who engage in SDM are more autonomous, experience better life satisfaction, and achieve meaningful community living and participation (Kohn, Blumenthal, & Campbell, 2013). To this end, the National Resource Center for Supported Decision-making (NRC-SDM) hosted an online survey to collect stories of SDM successes and challenges from individuals, family members, advocates, and providers across the country.
The survey was developed by consulting working with a network of experts and professionals in the area of supported decision-making. Once the survey was in its final form, an application was submitted to Syracuse University’s Institutional Review Board, who conducted an ethics review and provided approval for the project to move forward. (See Appendix I for Survey Instruments.)