Thriving in Transition: Building Authentic and Impactful Partnerships with the IDD and Research Communities

Background and Purpose: Adolescents and young adults (AYAs) with intellectual and/or developmental disabilities (IDD) are at elevated risk of having poor outcomes during the transition to adulthood period. Health disparities among AYAs with IDD are further amplified for individuals from underrepresented racial and ethnic groups and those residing in rural settings. Additionally, the IDD community is often excluded from research collaboration to inform best practices, inhibiting researchers’ ability to address the IDD community priorities. In order to shape best practices through research, the voice of individuals with IDD and their families is crucial. The Thriving in Transition project was created to co-develop fully inclusive, and sustainable pathways for transition-aged individuals with IDD and their caregivers to engage in research, with an intentional focus on building pathways with marginalized populations within the IDD community (Black and Latinx communities, rural populations).

Methods: To co-build this sustainable person-centered research engagement platform, we implemented three interdigitating and complementary strategies to achieve meaningful stakeholder engagement: embedded Patient Advocate Collaborators (PACs), a dynamic, diverse Stakeholder Co-Learning Collaborative (SCLC) steering committee, and a participatory community forum methodology called community engagement studios (CES) with the IDD community.

Results: PAC members (n=4) include two parents of AYAs with IDD, a disability advocate and consultant, and an AYA self-advocate with IDD. The SCLC is comprised of 12 members of the IDD community, including caregivers of youth with IDD, self-advocates, and community partners. PAC and SCLC members meet biweekly and monthly, respectively, and contribute to the design, implementation, and interpretation of findings from the CES and other project activities. CES participants were recruited using affinity group snowball recruiting through community social groups, organizations, businesses with connections to the IDD community facilitated by our community partners. Nine CESs were conducted with 49 AYAs (18-30) with IDD and 37 family caregivers. CES topics explored barriers to meaningful research engagement with the IDD community and the most pressing needs for AYAs with IDD as they transition to adulthood. Overall, findings from the nine CESs regarding needs and goals of the transition to adulthood for AYAs with IDD align with self-determination theory (SDT) constructs of autonomy, competence, and relatedness. AYAs with IDD reported a need for progressively building as sense of independence (autonomy) and self-trust (competence), as well as, noting the desire to belong to a community (relatedness).

Conclusions and Implications: This project demonstrates how engaging, fully inclusive, and sustainable pathways for transition-aged individuals with IDD, their caregivers, and researchers were developed through a coalition of researchers and community members that co-designed, implemented, and interpreted project activities aimed at identifying and solving pressing needs for the IDD community as individuals transition to adulthood. Findings from the CESs highlight that AYAs with IDD seek higher levels of independence with tailored support, and themes mapped to meeting SDTs psychological needs of autonomy, competence, and relatedness to support thriving into adulthood.