Challenges ahead: Exploring external barriers to self-determination in individuals with intellectual disabilities.
Adults with ID face family, institutional, and policy barriers that systematically block self-determination—target these levels, not just individual skills.
01Research in Context
What this study did
Parchomiuk et al. (2025) talked with adults who have intellectual disability.
They asked what outside forces stop them from making their own choices.
The team used open interviews and grouped answers into themes.
What they found
Three roadblocks came up again and again: family rules, agency red tape, and laws that limit choice.
People said, “My mom still decides,” or “The group home won’t let me stay out late.”
These outer walls, not lack of skills, shut down self-determination.
How this fits with other research
Vargas (2013) first drew a map of these outer rings. Monika et al. filled it with real voices.
Jackson et al. (2025) now call for “shared citizenship” and measuring context. The new data give them the ruler.
Westendorp et al. (2014) saw the same wall in older adults: no good options, no confidence. The barrier picture is growing across age bands.
Why it matters
Stop teaching choice-making in a vacuum. Look at house rules, day-program forms, and state laws first. Fix one policy and you free many clients at once.
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02At a glance
03Original abstract
The extent to which individuals with intellectual disabilities (ID) can exercise self-determination in their adult lives is largely influenced by various contextual factors, including their family environment, the institutions they interact with, and the legal and social conditions in which they function. In this study, we aimed to explore the lived experiences of people with ID in the context of the environmental challenges they face on the path to self-determination. To achieve this goal, we conducted an inclusive study involving co-researchers with ID. Thirty-three adults with mild to severe ID participated in focus groups or individual interviews. Using reflexive thematic analysis, we generated four superordinate themes: microsystemic factors that impact self-determination; Exosystemic factors that impact self-determination; macrosystemic factors that impact self-determination; and consequences. The implications for practice are discussed.
Research in developmental disabilities, 2025 · doi:10.1016/j.ridd.2024.104895