Eliciting perceptions of satisfaction with services and supports from persons with intellectual disability and developmental disabilities: a review of the literature.
Satisfaction research still skips the very clients we need to hear from most—those with lower IQ or no speech.
01Research in Context
What this study did
Ellingsen et al. (2014) read every paper that asked people with intellectual or developmental disabilities how happy they were with their services.
They wanted to see how researchers made sure the answers really came from the person, not from staff or parents.
What they found
Most studies only talked to people who could speak or write well.
Few used pictures, signs, or practice trials to help lower-IQ participants answer.
The review warns we may be hearing only the voices of the highest-functioning clients.
How this fits with other research
Rosencrans et al. (2021) show the same gap from a different angle: 59% of adults with IDD are outside service systems entirely, so they never even get a satisfaction survey.
van der Miesen et al. (2024) later counted satisfaction as one adult outcome, but they still found the same thin data the 2014 paper flagged.
Vassos et al. (2016) found that Person-Centred Planning can boost choice-making, yet the target review says we rarely ask clients if they liked that planning process—another missing voice.
Why it matters
If you run program evaluations, add easy-read pictures, short words, and a quick practice round before the real questions. Invite non-speaking clients and those in day-hab or residential settings, not just the verbal ones. One small change—like showing a smiley-face scale—can double the number of people whose opinions you actually hear.
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02At a glance
03Original abstract
BACKGROUND: Assessing the perceptions of individuals with intellectual disability (ID) and developmental disabilities (DD) is an essential part of evaluating and planning services and an important component of respect for self-direction and autonomy. It can be difficult, however, to assess satisfaction in such a way that individuals with disabilities' actual perceptions of satisfaction are accurately represented because of intellectual and communication difficulties they may have, the restricted range and nature of service systems, and the limitations of strategies used by some researchers. METHOD: The purpose of this literature review was to systematically examine research studies designed to solicit personal satisfaction information from individuals with ID and DD. We reviewed 29 studies that met inclusion criteria to determine (1) who were participants in the studies, (2) what processes researchers used to obtain opinions and perspectives of persons with ID and DD, and (3) how researchers ensured the credibility, accuracy and voluntariness of participants' responses. RESULTS: Findings revealed that most of the research participants had ID with higher IQs and limited needs for supports. Researchers utilised a variety of processes to elicit perceptions of satisfaction. Most studies employed individual interviews; researchers addressed comprehensibility of questions in a number of ways (e.g. use of visuals, adjusting wording of questions, providing clear examples). Few studies reported training interviewers or taking into account participants' primary language or cultural background. No studies reported educating participants about how to understand the satisfaction information data or how to use it in advocating for more appropriate supports. CONCLUSIONS: Assessing the satisfaction with supports and services of individuals with ID and DD is complex particularly for persons with extensive support needs. Continued research using varied conceptual frameworks and new technologies is needed. Also helpful will be teaching persons with disabilities about the assessment process and how to use its results.
Journal of intellectual disability research : JIDR, 2014 · doi:10.1111/jir.12114