Community-Driven Priorities in Intellectual and Developmental Disabilities Transition Services: An Environmental Scan

Abstract

The transition into adulthood can be an arduous time for young adults with intellectual and developmental disabilities (IDD) who face new responsibilities and significant shifts in services they receive. Peer support by someone with shared lived experience of disability can provide relevant and effective transition services. An inclusive team of researchers, which engaged people with lived experience in all research activities, conducted an environmental scan including a scoping review, focus groups (5 groups, n = 28 participants), and interviews (n = 19) to identify services and research priorities from the perspective of key community members (i.e., young adults with IDD, parents, peer supporters, researchers and service providers). Crosswalked data from the three sources demonstrated community-driven transition service priorities of independent living skills, person-centered approaches, and post-secondary experiences with peer support identified as a capacity builder. Priorities of key community members can be leveraged for existing transition and peer support interventions.

Plain Language Summary

Priorities for Transition Services Identified by Key Community Partners including Young Adults with Intellectual and Developmental Disabilities

The transition to adulthood can be hard for young adults with intellectual and developmental disabilities (IDD) due to changes in routines, responsibilities, and available services. Adult services often lack providers who understand the unique needs of people with IDD, despite increased demand for support during this time. Peer support, offered by people with similar lived experiences, can help fill this gap by providing meaningful assistance and understanding. However, the voices of young adults with IDD are often overlooked in setting transition priorities, with more focus placed on the views of family members, teachers, and other caregivers. To address this, researchers conducted an environmental scan to identify priorities for services and research from key community members, including young adults with IDD, peer supporters, caregivers, and professionals. An inclusive research team, which included people with IDD, used different types of methods like a scoping review of literature, interviews, and focus groups, to gather diverse perspectives. The results were combined and reviewed by an advisory board to identify critical needs for transition services. The top priorities identified were the development of independent living skills, person-centered approaches, and post-secondary experiences (like college or work). Peer support was highlighted as an important way to strengthen these services. By focusing on these community-driven priorities, researchers and service providers can better understand and support young adults with IDD as they transition to adulthood.