Recruiting the Voices of Persons With Intellectual and Developmental Disabilities in Policy Development: Priorities for Health Equity Data.

Krahn et al. (2023) ran focus groups with adults who have intellectual or developmental disabilities. They asked what makes health-equity surveys easy, respectful, and useful.

The team wanted to know how to collect data without relying on parents or staff as proxies.

Adults with IDD said surveys need plain words, pictures, and neutral helpers. They want their own answers counted, not someone else's guess.

They also want results shared back in formats they can understand.

Kaufman et al. (2010) once said substitute-decision-maker consent was key to boost ID research numbers. Gloria's team now flips that view, showing adults want to speak for themselves.

Malone (1999) found staff proxy ratings matched self-ratings on an empowerment scale, but still urged teams to collect self-reports whenever possible. Gloria et al. give the practical blueprint for doing exactly that.

Morris et al. (2021) flagged that behavior-analytic studies rarely report assent procedures. Gloria supplies a real-world example of honoring voice from the start.

If you write surveys, consent forms, or program evaluations, swap jargon for plain language and add visuals. Offer quiet support instead of letting proxies answer. Sharing findings back in easy-read formats keeps participants engaged and shows respect.