Examining Choice and Control for People With IDD Over Time.
State data show adults with IDD gain more everyday choice, but remain stuck when decisions involve money or staff.
01Research in Context
What this study did
Houseworth et al. (2023) tracked choice-making for over 9,800 adults with IDD in Pennsylvania. They used state HCBS survey data from 2013 to 2019. The team split choice into everyday items (food, clothes, roommates) and support items (staff, goals, budgets).
What they found
Everyday choice scores crept up a little each year. Support-related choice scores stayed flat. The gap between the two widened over the six years.
How this fits with other research
Hall et al. (2005) reviewed 30 smaller studies and found that giving any real choice cut problem behavior. James shows that, at a state level, only the easy, everyday choices are improving.
Dababnah et al. (2025) warn that the same survey scale may drift over time. If the scale itself changed, the small uptick in everyday scores could be partly artifact.
Vallury et al. (2025) add that women with ID still face coercion in big health decisions. This matches James: support-level choice is stuck.
Why it matters
Your clients likely have more say about lunch than about their support plan. Use that insight: embed big decisions inside everyday routines. Run a quick preference assessment before team meetings. Offer two clear service options with pictures. Document the choice and revisit it quarterly. Small daily wins can build momentum for larger self-direction.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add one pictorial choice to your next team meeting agenda.
02At a glance
03Original abstract
Choice making is an important aspect of everyone's life in terms of fully becoming an adult within a democratic society. People with intellectual and developmental disabilities (IDD) are at risk for diminished choice making due to various factors, including guardianships; dependence on supports that are not person-centered; and, in some cases, limited capacity to express one's desires effectively. Independent Monitoring for Quality (IM4Q) data for 9,195 and 9,817 for adult services users with IDD were analyzed across two types of choice. Repeated measures mixed regression examined choice over time after controlling for age, support needs, residence type, and community type. We found significant increases in everyday choice making among IDD service users in Pennsylvania, but not in support-related choice. This study is the first to our knowledge to consider change in choice making, an important indicator of rights and inclusion for persons with IDD. By comparing three waves of data from the state of Pennsylvania (2013, 2016, and 2019), we were able to detect changes in choice making over time among home and community-based service (HCBS) users with IDD.
American journal on intellectual and developmental disabilities, 2023 · doi:10.1352/1944-7558-128.6.449