Family Role in the Development of Self-Determination for Youth With Intellectual and Developmental Disabilities: A Scoping Review.
We have stacks of parent opinions on self-determination but almost no studies testing what families should actually do at home.
01Research in Context
What this study did
Adams et al. (2021) read every paper they could find on how families help youth with intellectual or developmental disabilities grow self-determination.
They located 24 studies. None tested a family coaching plan at home. All simply asked parents what they thought about self-determination.
What they found
The review found lots of parent opinions. It found almost zero studies showing how to teach families to build choice-making, goal-setting, or self-advocacy at the kitchen table.
In short, we know what families believe, but not what they should do.
How this fits with other research
Firth et al. (2001) gives us one bright spot. Three adults with severe disabilities picked more-independent work when staff simply arranged two clear choices. The tactic is tiny, yet it proves self-determination can be taught.
Sánchez-Luquez et al. (2025) and Heller et al. (2015) show the same hole in a different spot. Family navigation and caregiver support programs help parents feel better and find services, yet none measure youth self-determination skills.
Saré et al. (2020) and Byiers et al. (2025) echo parents’ cry for earlier help. Mothers “gently push” teens into the community but have no manual. The gap is identical: rich parent stories, almost zero tested home interventions.
Why it matters
You can stop hunting for a ready-made parent curriculum; it does not exist yet. Borrow the simple choice method from Firth et al. (2001): offer two clear options, then let the learner pick. Start there in your next family training session and measure what happens.
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02At a glance
03Original abstract
The development of self-determination is promoted by supportive contexts during adolescence; families are a key part of this context. In adolescent populations, research suggests families can support self-determination in a number of ways, yet less is known about how self-determination is promoted within families of youth with intellectual and developmental disabilities (IDD). To address this knowledge gap, we conducted a scoping review to examine the existing evidence pertaining to the role families of youth with IDD play in supporting the development of self-determination. A review of 24 publications revealed that existing research has focused on understanding family perspectives on self-determination, but there is a lack of studies investigating how families provide supports for self-determination in the home context for youth with IDD. Additionally, little intervention work has focused on supporting families to promote self-determination. Based on the findings, implications for future research and practice are provided.
Intellectual and developmental disabilities, 2021 · doi:10.1352/1934-9556-59.4.315