Understanding and Increasing Supported Decision-Making’s Positive Impact on Community Living and Participation Outcomes
The Burton Blatt Institute at Syracuse University
Kansas University Center on Developmental Disabilities
Quality Trust for Individuals with Disabilities
Sponsor: The National Institute on Disability, Independent Living, and Rehabilitation Research – Disability and Rehabilitation Research Projects (DRRP)
This project examines how a person’s decision-making status impacts their level of self-determination and their quality of life, including community participation and integration. Currently, many individuals with intellectual and developmental disabilities (I/DD) are at risk for being placed under legal guardianship, which may restrict their self-determination and concomitantly, their quality of life and community integration. Findings from this research may lead to changes in policies and practices by courts, service provision agencies, and families that increase supported decision-making strategies that are more inclusive and empowering of people with I/DD and which increase their independence and community integration. Trainings, technical assistance, and future interventions should ensure knowledge translation of findings ensuring research moves into practice.
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 Quality Trust for Individuals with Disabilities (QT) are the lead collaborators of the ACL-funded National Resource Center for Supported Decision Making (NRC-SDM). The NRC-SDM partners, along with other national disability and aging organizations, propose to significantly add to the current state of evidence-based research and approaches to supporting 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 low expectations about their capacity to make decisions. As a result, they have been placed in substituted decision-making frameworks, such as guardianship, that can decrease self-determination and lead to diminished life outcomes including community integration.
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. The present project 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 impact life outcomes. To do so, we will create and test an intervention using a randomized control trial approach examining whether training individuals with I/DD, their families, and support networks to use a SDM approach improves life satisfaction and integration in community living and daily life outcomes.
In cooperation with the District of Columbia Department of Disability Services, we will recruit 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). We expect 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 training in SDM may lead to improvements on community participation (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 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 about the impact and benefits of SDM. 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.
Peter Blanck, PhD, JD, PI
Michael Wehmeyer, PhD, Co-PI
Karrie A. Shogren, Ph.D., Co-PI
Meera Adya, PhD, JD, Project Director
Michael Morris, JD, KT Coordinator
Mary Killeen, MA, Intervention Specialist
Celestia Ohrazda, Dissemination & Training
Tina M. Campanella, MA, Co-PI
Jonathan Martinis, JD, Co-PI