Future Directions in Supported Decision-Making

Abstract

Supported decision-making is at the forefront of modern disability research. This is due to Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD), which creates a state obligation to provide support for the exercise of legal capacity. This turned the practice of supported decision-making into a human rights imperative. Government and funding agencies are increasingly focusing their attention on the area. Researchers are similarly increasing their interest in the field. The impending danger is that the rush of interest in the area will overshadow the original intention of supported decision-making: to ensure that people with cognitive disability are provided with the freedom and the tools to participate as equal citizens and for every individual to be free to direct their own life. This article explores the theoretical foundations of supported decision-making and the evolution of supported decision-making research. It explains the research that is emerging in leading jurisdictions, the United States and Australia, and its potential to transform disability services and laws related to decision-making. Finally, it identifies areas of concern in the direction of such research and provides recommendations for ensuring that supported decision-making remains protective of the rights, will and preferences of people with cognitive disability.

Siblings of adults with intellectual and developmental disabilities: Their knowledge and perspectives on guardianship and its alternatives

“…Signatory nations responded to the UNCPRD in a variety of ways, as many countries began to implement policies for SDM (e.g., Australia and the United States), while other countries (e.g., Canada) which already had such legally recognized measures in place revised their policies (Arstein‐Kerslake, Watson, Browning, Martinis, & Blanck, ; Browning, Bigby, & Douglas, ; Watson, ). The United States of America (US), which has signed the UNCRPD but not ratified it, has had limited implementation of SDM as many states continue to rely on more restrictive measures (e.g., guardianship; Blanck & Martinis, ; National Council on Disability, ).…”

Refining the Supported Decision Making Inventory

“…Nationally and internationally, supported decision‐making has received significant attention as an approach to empower people with intellectual and developmental disabilities to act with agency over decisions about their lives (Arstein‐Kerslake, Browning, Watson, Martinis, & Blanck, ; Gooding, ; Shogren, Wehmeyer, Martinis, & Blanck, ). Legally, supported decision‐making has been recognized in several jurisdictions throughout Europe, South America, and the United States.…”

“…Legally, supported decision‐making has been recognized in several jurisdictions throughout Europe, South America, and the United States. These international efforts have been shaped by the Convention on the Rights of Persons with Disabilities (United Nations, ), which states in Article 12 that people with disabilities have a right to legal standing on an equal basis and access to supports for the exercise of legal capacity (Arstein‐Kerslake et al, ; Davidson et al, ). A central focus in the growing adoption of supported decision‐making throughout the world are the assumptions that (1) people with disabilities can retain legal agency over their decisions without the removal of rights even if they need support for decision making and (2) that people with disabilities should have the right to name and change those that they designate to support them in making complex decisions (Blanck & Martinis, ; Glen, ).…”

“…As such, legal recognition of supported decision‐making is only one step. As highlighted by a recent international symposium on supported decision‐making, there is also a need for practice frameworks and tools that enable people with intellectual and developmental disabilities and their supporters to implement supported decision‐making (Arstein‐Kerslake et al, ).…”

“…Building on this framework and other work in the field (Arstein‐Kerslake et al, ; Bigby et al, ; Bigby, Whiteside, & Douglas, ; Campanella, ; Hickson & Khemka, ), Shogren, Wehmeyer, Uyanik, and Heidrich () described the creation of a pilot version of the Supported Decision Making Inventory (SDMI). The creation of the tool was based on an extensive review of the literature (Shogren, Wehmeyer, Lassman, & Forber‐Pratt, ) organized around the domains of a social‐ecological approach to supported decision‐making.…”