"I'm supposed to be in charge": self-advocates' perspectives on their self-determination support needs.
Adults with ID told us exactly how staff can support their self-determination: listen first, offer choices, and let them lead.
01Research in Context
What this study did
Matson et al. (2011) asked adults with intellectual disability to talk about the staff behaviors that help or hurt their self-determination.
The researchers held open-ended interviews with self-advocates. They looked for common themes in the stories.
What they found
Adults said staff boost self-determination when they listen, offer real choices, and step back so clients can lead.
Staff block self-determination when they make every decision, rush people, or ignore preferences.
How this fits with other research
Adams et al. (2024) extends these findings by showing adults now use trusted supporters and tech tools to make decisions. The 2024 study moves from "what staff should do" to "how people actually get support."
Weiss et al. (2001) seems to contradict our paper. Their survey found most adults in community homes had almost no choice. Matson et al. (2011) shows the same adults can name exact staff actions that would fix this gap. The difference is lens: 2001 counted opportunities; 2011 captured voices.
Oliver et al. (2002) tested one fix: active-support staff training. Engagement rose only for adults with severe ID and no behavior challenges. Their data warns us that "step back and offer choice" works, but only after we match training to client profile.
Why it matters
You can raise self-determination tomorrow by pausing before you choose. Ask "What do you want?" Give two real options, then wait seven seconds. These micro-moments add up to the macro-change adults asked for in this study.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →In your next session give the client two real choices and wait seven full seconds for an answer before you speak again.
02At a glance
03Original abstract
In this qualitative interview study, we explored the perceptions of adults with intellectual disability regarding interpersonal or social supports needed to express their own self-determination. Specifically, 10 adults, all members of a self-advocacy group, were asked to discuss their understanding of the term self-determination and ways in which support staff have either supported or inhibited their self-determination. Ten themes characterizing supportive and impeding staff actions were identified. The need for greater exploration of environmental and social influences on self-determination is emphasized.
Intellectual and developmental disabilities, 2011 · doi:10.1352/1934-9556-49.5.327