Participation and Intellectual and Developmental Disabilities

Individuals with intellectual and developmental disabilities (ID/DD) and their families face environmental and social barriers that interfere with community participation in places where they live, work, and play. This contributes to health, well-being and quality-of-life disparities. There is a need to establish a patient-centered outcome research (PCOR) community to develop research that addresses community participation to improve health and well-being.

Stakeholder involvement is a critical first step to build research capacity. We will create a network of individual, family, healthcare, and community organization representatives as stakeholders in research development activities. We will leverage the use of existing community relationships and initiatives to bring together three regional stakeholder communities that build local capacity, as well as connect nationally, to build larger scale capacity.

This research development project aims to develop a network of regional and national stakeholder communities and stakeholder-identified research priorities regarding community-level interventions as determinants of health, well-being and quality of life for children and youth with ID/DD and families. These priorities will lay the groundwork for future comparative effectiveness research.

We will hold research capacity-building meetings in the northeast (Philadelphia), northwest (Seattle) and south (Augusta, Georgia). Meeting activities will involve stakeholders locally to share information and build consensus toward the project research development outcomes and outputs. Project activities include conference calls, interim working groups, and a web-based platform. These activities will connect stakeholders nationally, facilitate ongoing stakeholder involvement, allow for discussion and review of information, and drive the development and completion of project outcomes and outputs.

Anticipated outcomes include establishing an engaged, diverse, and representative PCOR community in each region that is also connected nationally; developing a stakeholder driven research and action plan with research priorities, desired person-centered outcomes, and guidance for future comparative effectiveness research that is focused on health outcomes of children and youth with intellectual and developmental disabilities and families in relation to community participation. We will also develop stakeholder training modules that will facilitate, sustain, and expand stakeholder involvement for this PCOR community regionally and nationally.

We will coordinate a network of diverse individual, family, healthcare, and community stakeholders regionally and nationally through face to face meetings and supporting project activities including conference calls, work groups and a web-based platform. Project leaders along with regional engagement coordinators, will support engagement efforts locally and nationally.

Project Collaborators: University of Washington, Temple University, Augusta University and University of Pittsburgh will collaborate as project leaders along with a lead engagement coordinator. Executive/advisory board members and 6 named project partners will represent diverse stakeholders groups and community systems.