Topics: transition from high school, peer support, self-determination, postsecondary education, work experiences, independent living

“[Young people with IDD] should join research when they get older because it's a great way to meet friends. It's a great way to help your community.” (Young adult with IDD)

“I would say that it doesn't even [count] as peer support if it's done by someone who is neurotypical.” (Peer supporter)

Goal

To identify opportunities and strategies for including young adults with intellectual and developmental disabilities (IDD) in research through peer support. Peer support is support for young people with IDD by young people with IDD.

Key Findings

Young adults, families, transition service providers and researchers identified the following research priorities which could be enhanced by peer support:

1. Self-advocacy, self-determination, and person-centered planning
2.  Post-secondary training and experiences like college or work
3. Independent living skills
4. Evaluating which peer support models work best

The team is designing resources to help research team leads and people with IDD to learn about how peer support can help them work together to produce better research. These resources will include an accessible HTML toolkit and free training through FYREworks.

Partners

Supported by the Patient-Centered Outcomes Research Institute and in collaboration with the Research, Engagement and Advocacy for Community Participation and Health (REACH) Lab of the College of Public Health.

History

The transition to adulthood is a challenging time for youth, especially youth with IDD. Youth with IDD transition from high school and school-age services to adult life and the adult disability service system. Often youth receive fewer services and experience poorer outcomes. Transition outcomes such as employment, independent living, and community participation are poorer for youth with IDD compared to peers without IDD. This impacts quality of life and their reported levels of health. Peer support can improve transition outcomes, such as independent living, socialization and relationships, and employment for people with IDD. Peer support provided by someone with shared lived experience is an important and effective tool for increasing research inclusion and outcomes. Peer support can empower youth with IDD and their families to get involved in transition research.

Data and Analysis

We know that including people with IDD, and their families and caregivers, in secondary transition research can produce better results. The research team led qualitative interviews and focus groups utilizing the nominal group technique with youth with IDD, peer supporters, families, researchers, and transition service providers. We also conducted a scoping review of literature on peer support and secondary transition. We crosswalked the data using Farmer et al.’s (2006) data triangulation protocol.