Research About Us, With Us: An Inclusive Research Case Study.
Adults with IDD can co-run research, making studies sharper and staff attitudes brighter.
01Research in Context
What this study did
Klein et al. (2024) followed one research team that added adults with intellectual disabilities as paid co-researchers.
The team ran the whole study together: picking questions, collecting data, and sharing results.
This case study asked, "What happens when the people we study also steer the research?"
What they found
The group said the project felt better and the work came out stronger.
Adults with IDD gave ideas the trained scientists had missed.
Everyone learned new skills and trust grew across the team.
How this fits with other research
Garcia-Melgar et al. (2022) used the same co-design idea with school teams and saw the same plus: shared voice sharpens plans.
Meadan et al. (2018) told us to treat families as experts; S et al. move that idea one step further and make adults with IDD the experts.
Werner et al. (2011) warned that student clinicians often feel unsure about working with people with IDD; this case shows one real way to fix that fear—work beside them.
Why it matters
You can open the same door. Invite your adult clients to help shape the next social-skills group, behavior plan, or staff-training video. Start small: let them pick the video clip, test the survey wording, or co-lead one lesson. You get fresher ideas and they gain status and pay—an immediate equity win.
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02At a glance
03Original abstract
Inclusive research combines the expertise of academically trained researchers with the lived experience of individuals with disabilities to render results that are more accessible, accountable, and meaningful to the disability community. In this case study, adults with intellectual and developmental disabilities (IDD) contributed as co-researchers to a series of studies on mental health of adults with intellectual disability. The research model, specific engagement strategies, and lessons learned are shared. Feedback from members of the research team suggests that including adults with IDD as co-researchers benefited investigators, co-researchers with IDD, and project outcomes. Our case study emphasizes the valuable contributions of research partners with IDD and provides a model that may be adapted and utilized by researchers to enhance their practice.
Intellectual and developmental disabilities, 2024 · doi:10.1352/1934-9556-62.4.260