Autonomy in relation to health among people with intellectual disability: a literature review.
Health-choice research for people with ID is thin, but existing studies show autonomy support works—so start offering choices now.
01Research in Context
What this study did
The authors read 39 papers about health and autonomy in people with intellectual disability. They wanted to see how much research exists on letting clients make their own health choices.
They used a scoping review design. This means they mapped what is known instead of testing a treatment.
What they found
Almost no studies looked at health-related autonomy. Policies say "individualize" and "include," but the research shelf is nearly empty.
The gap matters. Without studies, teams have little guidance on how to support client choice during doctor visits, diet plans, or exercise programs.
How this fits with other research
Later scoping reviews keep finding the same blank spot. English et al. (2020) saw only 2 of 10 end-of-life papers where adults with ID actually joined the decision. McGrath et al. (2025) show the same hole in sexual health literacy.
The story flips when we leave the review world. Perry et al. (2024) tracked adults for 4.5 years and proved that staff who offer choices raise client autonomy and well-being. Frielink et al. (2018) found the same in a shorter study.
So the reviews say "little evidence," but the experiments say "autonomy support works." The gap is not effectiveness—it is measurement in health settings.
Why it matters
You do not need to wait for more papers. Use what Perry et al. (2024) already proved: give choices, share rationales, and let clients say no. Start in small health moments—picking a flu shot arm, choosing fruit or veggies, deciding walk time. Document the choices. Your data can help fill the research gap while respecting client autonomy today.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Insert one forced-choice during a health routine—"Do you want the nasal spray or the shot?"—and record the client response.
02At a glance
03Original abstract
BACKGROUND: Since the 1990s, individualisation, participation, normalisation and inclusion have been the main principles of care for people with intellectual disability (ID). Autonomy has become an important issue for these people. This review of the literature tried to answer the question: how do people with ID exercise autonomy in relation to health? METHOD: Searches in Cochrane, Medline and PsycINFO were based on the following aspects of autonomy: self-determination, independence, self-regulation and self-realisation. RESULTS: Thirty-nine of 791 articles met our criteria, including 14 on self-determination, seven on independence, 15 on self-regulation and three on self-realisation. CONCLUSIONS: In spite of decades of promoting autonomy, the exercise of autonomy in relation to health has so far rarely been an issue in the literature.
Journal of intellectual disability research : JIDR, 2009 · doi:10.1111/j.1365-2788.2009.01196.x