Advancing Inclusive Research in Intellectual and Developmental Disabilities: Building Community and Supports for Participation.
Real inclusion needs a budget line for supports, not just an invite.
01Research in Context
What this study did
Jackson et al. (2025) wrote a how-to guide for making IDD research truly inclusive.
They list the supports teams need so people with intellectual or developmental disabilities help design studies, not just join them.
The paper is a roadmap, not a lab experiment.
What they found
The authors say inclusion fails when we only invite.
It works when we pay for transport, use plain-language forms, give extra meeting time, and share authorship.
These supports turn participants into co-researchers.
How this fits with other research
Zwiya et al. (2023), Bogenschutz et al. (2024), and Emerson et al. (2023) all asked for the same shift: move from studying people with IDD to studying with them.
A et al. answer by showing exactly how to fund, schedule, and staff that shift.
Johnson (2023) warned that race and power still hide in "inclusive" teams.
The new guide adds anti-bias training and diverse pay scales to tackle that risk.
Why it matters
If you run staff trainings, write grants, or sit on an IRB, this paper is your checklist.
Use it to budget for travel stipends, easy-read consent pages, and longer timelines.
When people with IDD help shape the question, the data you collect finally match real life.
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02At a glance
03Original abstract
People with intellectual and developmental disabilities are often excluded from equitable inclusion in the development and execution of research. Despite increased advocacy for inclusive research over the last decade, the widespread use of such practices remains limited. There is a need for systemic change to foster the inclusion of people with intellectual and developmental disabilities in planning, conducting, and disseminating research. This paper describes actions taken by a research group to make system changes to empower and support people with intellectual and developmental disabilities to learn about and engage in research. It highlights ongoing work that is needed and possible ways to advance systemic change.
Intellectual and developmental disabilities, 2025 · doi:10.1352/1934-9556-63.6.457