Project Description:
The Burton Blatt Institute at Syracuse University, in collaboration with the Quality Trust, the Kansas University Center on Developmental Disabilities at the University of Kansas, and the Council for Quality and Leadership, will add to the current state of knowledge regarding the influence of different approaches to support individual decision-making that facilitates self-determination and better quality of life outcomes including community living and community participation for persons with intellectual and developmental disabilities. Historically, the majority of the target population has been impacted by limited expectations about capacity to make decisions and as a result have been placed in a substituted decision-making framework or been made to obtain a legally appointed guardian.
Despite multiple research studies that have documented the impact of individual and system moderators as varied as gender, intellectual capacity, where one lives, and family and social relationships on self-determination and quality of life outcomes, there is a lack of evidence-based research examining the correlation between type and methods of decision-making, the degree of self-determination and resulting community participation and quality of life outcomes. This collaborative research proposal seeks to fill the gap in research and literature and is based on two hypotheses: (1) Restrictive decision-making methods deny self-determination and, as a result, people subjected to those methods have less quality of life outcomes, including less community integration; and (2) Supportive decision-making methods - which focus on providing people with help understanding the situations and choices they face, so they can make their own decisions - increase self-determination and improve life outcomes, including community integration.
In cooperation with the District of Columbia Department of Disability Services (DDS), a cohort of people with intellectual and developmental disabilities will be the focus of evaluation over time to collect data on decision-making supports and methods, degree of self-determination and other personal and contextual factors of interest on a personal level and inclusive of environmental factors, as well as examining the effect of an intervention, the Self-Determined Decision Making Model (SDDMM) to promote supported decision making..
This research design proposes a three year study of a demographically representative cohort of persons served by DDS. Using scientifically verified outcome measures, we will survey members of the cohort to determine their decision-making methods, their level of self-determination and their quality of life outcomes, including community integration. Survey results will show whether (1) there are particular decision-making methods that lead to greater self-determination, quality of life outcomes and community integration than others and (2) whether there are demographic variables, including legal decision-making status, that predict greater self-determination, quality of life outcomes and community integration. A second study will examine the effect of the SDDMM on self-determination and quality of life outcomes.
The results of the qualitative and quantitative research will be used to recommend changes in policy and practice with the target population across age (youth in transition, working age adults, aging population) to improve less restrictive supported decision-making approaches to enhance self-determination and community living and participation to meet the goals of the Rehabilitation Act, the ADA, and the Olmstead Community Integration mandate.
Results will be used in a robust knowledge translation program to target policymakers, providers, persons with disabilities, and their families about the influence and impact of supported decision-making on self-determination and community living and participation quality of life outcomes. Materials, training, and technical assistance will be customized to target audience learner needs and preferences that translate research findings to inform future policy development and community living programs.
Unserved or Under-served Populations:
Racial or Ethnic Minorities, Disadvantaged Circumstances, Geographic Areas, Rural/Remote, Urban
