Assessment & Research

Participation and Intellectual Disability: A Review of the Literature.

Dean et al. (2016) · Intellectual and developmental disabilities 2016
★ The Verdict

The ID field still lacks one clear definition of participation, so you must write your own and track choice and meaning.

✓ Read this if BCBAs writing participation goals for youth or adults with ID.
✗ Skip if Practitioners who only run discrete trial training with no community targets.

01Research in Context

01

What this study did

Libero et al. (2016) read every paper they could find on participation and intellectual disability. They did not run new tests. They simply mapped what researchers had already written.

Their goal was to see how scientists define participation. They found no shared definition.

02

What they found

Most studies talk about access and inclusion. Few ask if the person chose the activity or finds it meaningful.

The field measures being present, not being engaged.

03

How this fits with other research

Hamama et al. (2021) give numbers to the gap. Their survey shows friendship is the hardest area for kids with ID and autism. The review said meaning is missing; the survey shows where it hurts most.

Schall et al. (2024) move the ball forward. Eight years after the review, they asked stakeholders what good employment participation looks like. They got clear answers: supported work, customized work, internships, and college. The review asked for definitions; the Delphi study supplies one slice.

Lysaght et al. (2009) echo the worry. Adults with ID told interviewers that productivity feels important, yet barriers block them. The review calls for more voice; this earlier study already captured it.

04

Why it matters

If we do not define participation the same way, we cannot compare programs or show progress. You can fix this today. Write a plain definition in your next plan. Include choice, meaning, and responsibility. Share it with the team so everyone tracks the same thing.

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Add one line to your next goal that says how you will measure client choice or meaning.

02At a glance

Intervention
not applicable
Design
scoping review
Population
intellectual disability
Finding
not reported

03Original abstract

Participation is a central aspect of human functioning and a key focus of research and practice in the intellectual disability field. However, there is not an accepted definition of participation that guides research and practice. To inform the development of a definition, a scoping review of the intellectual disability literature from 2001-2015 was conducted. Findings suggest that existing research rarely uses definitions of participation, but does examine participation across multiple domains and addresses issues of access and inclusion. Less focus was placed on individual aspects of participation such as meaning, responsibility, and choice. Based on the findings, implications for future research and practice are provided.

Intellectual and developmental disabilities, 2016 · doi:10.1352/1934-9556-54.6.427