Protection, participation and protection through participation: young people with intellectual disabilities and decision making in the family context.
Practice decisions out loud with teens who have ID; it turns family protection into shared autonomy.
01Research in Context
What this study did
Heinicke et al. (2012) talked with youth who have intellectual disabilities and their families. They wanted to see how the teens take part in family decisions.
The team used open interviews. They asked about real choices like weekend plans or what to eat.
What they found
Most teens followed a 'protection first' path. Parents made the call and kept the teen safe.
When families rehearsed choices, the teens spoke up more. Practice let them test outcomes and grow autonomy.
How this fits with other research
Hoyle et al. (2022) extends this view. They showed parents of older teens with ID feel lost when sex topics come up. Both studies say families need tailored support, not one-size rules.
Jasmin et al. (2018) found a twist. Kids with DCD and their parents often disagree on what help is needed. That backs R's point: ask the teen directly, don't assume protection is wanted.
Amaral et al. (2014) looked at chores, not choices. Youth with Down syndrome did fewer tasks and needed more help. The gap in household roles lines up with the gap in decision roles seen by R et al.
Why it matters
You can add a two-minute choice rehearsal to any session. Role-play what happens if the teen picks the blue shirt or the red, the apple or the fries. Let the teen state the outcome in their own words. Over time, move the rehearsal to bigger choices like after-school clubs or medical questions. The study says this simple step shifts the family script from 'we protect' to 'we practice together.'
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02At a glance
03Original abstract
BACKGROUND: Research suggests that persons with intellectual disabilities (ID) are expected to be more compliant than persons without disabilities and that expectations for compliance begin in childhood. No study, however, seems yet to have included a primary focus on the participatory rights, or rights to express opinions, desires and preferences and to be heard and taken seriously in decision making among young people with ID who are not yet considered legally adult. The purpose of the two current studies was to explore how the right to participation is negotiated for young people with ID in a family context and to determine family members' recommendations for strategies to facilitate the participation of young people with ID. METHOD: In the first study, four young people with ID, their mothers and two siblings from four families took part in semi-structured interviews about decision making in the family context. In the second study, a mother and daughter from the first study discussed and developed strategies to promote participation for young people with ID. RESULTS: In the first study, all participants communicated that young people with ID follow an age-typical yet restricted pattern of participation in decisions about their lives. Young people's participation was consistently framed by familial norms and values as well as their families' desire to protect them. In the second study, both participants suggested communication about the outcomes of real or imagined decisions would help young family members rehearse decision-making strategies that would facilitate their autonomy while remaining within the bounds of familial norms, values and perceptions of safety. CONCLUSIONS: Although young people with ID may make fewer independent decisions about their lives than typically developing peers, support in decision making can enable both increased protection and independence.
Journal of intellectual disability research : JIDR, 2012 · doi:10.1111/j.1365-2788.2012.01649.x