Service Delivery

The Power of Partnerships to Identify and Address Mental Health Concerns Experienced by Adults With Intellectual and Developmental Disabilities.

Lunsky et al. (2024) · American journal on intellectual and developmental disabilities 2024
★ The Verdict

Adults with IDD must be paid partners, not passive subjects, in every mental-health research and service decision.

✓ Read this if BCBAs who design or deliver mental-health supports for adults with IDD in any setting.
✗ Skip if Clinicians looking for step-by-step behavior-intervention protocols; this is a big-picture paper.

01Research in Context

01

What this study did

Lunsky et al. (2024) wrote a narrative review. They asked how to close mental-health gaps for adults with intellectual and developmental disabilities.

The authors did not run a new experiment. They gathered stories and lessons from many projects. Their goal was to show why true partnerships with adults with IDD are essential.

02

What they found

The paper argues that research and services fail when adults with IDD are only subjects. The review shows that gaps shrink when these adults and their families help design, run, and judge the work.

Meaningful inclusion is not a courtesy add-on. It is the engine that makes mental-health programs fit real needs.

03

How this fits with other research

Hewitt et al. (2013) warned that good IDD programs stay small because policy and cost data are missing. Lunsky et al. (2024) pick up that thread and add the missing piece: include adults with IDD as partners to push policy forward.

Jackson et al. (2025) give the how. Their theoretical paper lists concrete supports like plain-language consent, paid roles, and mentor teams. Yona et al. supply the why; A et al. supply the roadmap.

Bogenschutz et al. (2024) extend the idea into social-inclusion research. They set six big goals that embed intersectionality and co-researcher roles. Yona et al. echo the same call, but keep the spotlight on mental-health services.

04

Why it matters

You can start today. Invite one adult with IDD to your next team meeting. Ask what mental-health questions matter to them. Pay them for their time. Use their words to shape your survey or treatment plan. This small step turns your project from something done to them into something built with them. Over time these partnerships fix the very gaps Hewitt et al. (2013) said keep programs tiny.

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Add an adult with IDD to your next project meeting, give them a paid co-researcher role, and ask what mental-health outcomes matter most to them.

02At a glance

Intervention
not applicable
Design
narrative review
Population
intellectual disability, developmental delay
Finding
not reported

03Original abstract

There are significant research gaps with regard to understanding and addressing the mental health concerns of adults with intellectual and developmental disabilities (IDD) and their families. In this article, we reflect on research we have carried out about mental health and IDD prior to and during the pandemic in Ontario, Canada. We aim to address how partnering with people with IDD, family caregivers, service providers, and policy makers can help accelerate needed progress in this area. We conclude with some lessons learned during the pandemic about what to emphasize in building and maintaining such partnerships.

American journal on intellectual and developmental disabilities, 2024 · doi:10.1352/1944-7558-129.2.96