Understanding and Increasing Supported Decision-Making's Positive Impact on Community Living and Participation Outcomes
The Burton Blatt Institute at Syracuse University (BBI), in collaboration with, the Kansas University Center on Developmental Disabilities at the University of Kansas (KUCDD) and the Quality Trust for Individuals with Disabilities (QT), represent the lead collaborators of the ACL funded National Resource Center on Supported Decision Making (NRC-SDM). These partners, along with other national disability and aging organizations, propose to significantly add to the current state of knowledge regarding evidence-based approaches to support individual decision-making that facilitates self-determination and enhanced quality of life outcomes, including community living and participation in daily life, for persons with intellectual and developmental disabilities (I/DD). Historically, persons with I/DD have been impacted by limited expectations about their capacity to make decisions. As a result, they have been placed in substituted decision-making frameworks and/or made to obtain a legally appointed plenary guardian. Despite studies documenting the impact of individual and system variables intellectual capacity, where one lives, family and social relationships self-determination and quality of life outcomes there is a lack of rigorous evidence-based research examining the ways in which the type and methods of decision-making impact self-determination and resulting life satisfaction, community living, and participation in daily life outcomes. The present proposal fits both the exploration and discovery stage of research and the intervention development stage of research by conducting unprecedented and refined analyses of data that will provide direct knowledge about the ways and extent to which models of individual decision-making are associated with and impact life outcomes. We examine this by testing a modified intervention using a randomized control trial approach of whether training individuals with I/DD, their families, and support networks to use a supported decision-making approach improves life satisfaction, and integration in community living and daily life outcomes. In close cooperation with the District of Columbia Department of Disability Services (DDS), the project will assemble samples of persons with I/DD served by DDS. Using valid and reliable measures, we will survey members of the cohort to determine their decision-making methods, level of self-determination, and life satisfaction outcomes, including community integration (Study 1). It is expected that the survey results will show the degree to which there are: (1) decision-making methods that lead to greater self-determination, life satisfaction outcomes and community integration, and (2) demographic variables, including legal decision-making status, that are associated with self-determination, quality of life outcomes, and community integration. These variables will be examined next as part of a field-based intervention study to determine the extent to which particular trainings in SDM may lead to improvements on those same outcomes (Study 2). The findings will help to recommend changes in policy and practice with the target population across the life course (youth in transition, working age adults, aging population). The objective is to improve enhance self-determination, community living, and integrated participation in accord with the Rehabilitation Act, ADA, and Olmstead Integration mandate. A robust knowledge translation program will target policymakers, service providers, persons with disabilities, their families and supporters as to the impact of supported decision-making. Materials and technical assistance will be customized to target audience learner needs and preferences to translate findings for future policy development and community living programs.
Michael Wehmeyer, Ph.D.
KS-Schiefelbusch Institute for Life Span