Involvement of adult siblings of persons with developmental disabilities in future planning.
Most adult siblings are willing but left out of future care plans—invite them today.
01Research in Context
What this study did
Heller et al. (2009) mailed a survey to 139 adult brothers and sisters of people with developmental disabilities.
They asked who talks about future care plans and who expects to become the main helper later.
What they found
Only 38 percent of siblings saw themselves taking the lead in caregiving.
Most families left the brothers and sisters out of planning talks, even when they lived nearby and visited often.
How this fits with other research
Neely-Barnes et al. (2008) showed that when the whole family joins planning, the person gets more services and everyone feels happier. Tamar’s team zooms in on one missing piece: the siblings.
Laposa et al. (2017) asked 290 professionals the same question and heard the same story. Staff agree siblings should help, yet few are invited. The two surveys line up like puzzle pieces, showing the gap from both sides.
Lee et al. (2021) scoured eight studies and found culture changes how siblings feel about helping. Tamar’s sample mixed many backgrounds, so your families might need different outreach than the paper shows.
Why it matters
You can fix the gap now. Start a sibling support group at your clinic. Add a standing agenda item: “Who will help after mom and dad?” Invite brothers and sisters to transition meetings and give them the same resource list you give parents. One small invite can turn the 38 percent into 100 percent readiness.
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02At a glance
03Original abstract
This study examined factors influencing involvement of siblings of individuals with developmental disabilities in future planning and their expectation of future caregiving. The sample consisted of 139 adult siblings recruited from an online sibling list and a sibling conference. Results indicated that few families made plans or involved siblings in the planning. Siblings who were most involved in future planning were older, more involved in disability activities, and provided more support to their sibling with disabilities. About 38% of siblings expected to be primary caregivers and were more likely to expect this role if the sibling with a disability lived closer and was female, had more sibling contact, provided them with more support, and felt greater caregiving satisfaction. Major support needs of siblings were for support groups, workshops-training on how to assume caregiving responsibility, financial support, and printed material on making future plans.
Intellectual and developmental disabilities, 2009 · doi:10.1352/1934-9556-47.3.208