Understanding Decision Making Among Individuals With Intellectual and Developmental Disabilities (IDD) and Their Siblings.
Siblings already make most formal choices for adults with IDD, so include them in every supported-decision plan.
01Research in Context
What this study did
The team talked with adults who have intellectual or developmental disabilities and their brothers and sisters. They asked who really picks the big things in life: where to live, how to spend money, or what to do on Saturday night.
The study used open interviews, not check-box forms. People told stories about who offers choices and who signs the final papers.
What they found
Parents often list the options. Siblings usually sign the forms and speak to doctors or banks. The adult with IDD keeps the most say only in fun choices like pizza or movie night.
In short, siblings drive formal decisions while the person with IDD keeps leisure control.
How this fits with other research
Virues-Ortega et al. (2014) already gave us a pick-list for choosing preference tools. Dudley et al. (2019) adds the family angle: even the best tool falls flat if siblings hold the pen.
Giesbers et al. (2020) show only 30% of family help goes both ways. That low back-and-forth helps explain why siblings must step in for big choices.
Begum et al. (2011) saw warmth differ in teen years, but this adult study shows roles, not feelings, shift. The gap is about life stage, not contradiction.
Why it matters
If you write supported-decision plans, invite the sibling early. Ask: "Which choices will you keep, and which will your brother/sister handle?" Put leisure picks on the client’s own list so autonomy shows up where it really lives.
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02At a glance
03Original abstract
Many siblings anticipate fulfilling caregiving roles for their brothers and sisters with intellectual and developmental disabilities (IDD). Given these roles and the importance of supported decision making, it is crucial to understand how individuals with IDD and their siblings make decisions. Using dyadic interviews, we examined the perspectives of nine sibling dyads ( N = 18) about decision making in relation to self-determination, independent living, and employment. The ages of participants ranged from 19 to 57. Data were analyzed using constant comparative analysis to identify themes. Decision making was characterized by: parents and siblings primarily identifying courses of action; the probability of respective consequences based on the person-environment fit; and the role of the sibling in making the final decision. Characteristics related to the individual with IDD, the family, the sibling, and the environment impacted decision making. Individuals with IDD were more likely to make their own decisions about leisure activities; however, siblings were more likely to make formal decisions for their brothers and sisters.
Intellectual and developmental disabilities, 2019 · doi:10.1352/1934-9556-57.1.26