The Perceptions of Professionals Toward Siblings of Individuals With Intellectual and Developmental Disabilities.
Disability staff value adult siblings but rarely call them—fix it with a simple invite and policy nudge.
01Research in Context
What this study did
Laposa et al. (2017) asked 290 disability professionals one big question. How do you view adult brothers and sisters when you plan services for people with IDD?
The team used an online survey. It listed possible supports and common roadblocks. Staff rated how often each one shows up.
What they found
Workers said siblings can help, but they rarely show up in meetings. Paperwork rules, lack of staff time, and no policy push were the top blocks.
In short, staff like the idea of sibling help. The system just does not make it easy.
How this fits with other research
Heller et al. (2009) asked siblings the same question from the other side. Only 38 % of brothers and sisters expected to be primary caregivers, and most said no one invited them to plan. The two surveys line up: both sides want more contact, yet neither is reaching first.
Lee et al. (2021) widened the lens. Their scoping review shows culture shapes how siblings feel about caregiving and stress. Laposa et al. (2017) did not ask about race or language, so the new review hints that future staff surveys should.
Neely-Barnes et al. (2008) add a payoff. When any family member helps choose services, the person with IDD gets more supports and everyone feels happier. The 2017 data say siblings are an untapped part of that winning team.
Why it matters
You can open the door today. Add a sibling contact line to intake forms. Send the invite for next quarter’s plan meeting to the brother or sister too. One extra email costs nothing and may double family backing for your client’s goals.
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02At a glance
03Original abstract
Adult siblings of individuals with intellectual and developmental disabilities (IDD) report struggling to navigate the adult disability service delivery system and collaborate with professionals. To date, though, it is unclear how professionals encourage sibling involvement and, accordingly, the facilitators and challenges in working with siblings. For this study, 290 professionals participated in a national web-based survey; participants answered three open-ended questions about ways to involve siblings, positive experiences with siblings, and challenges in working with siblings. Professionals reported person-level and systems-level supports to encourage sibling involvement. Also, professionals reported enjoying working with cohesive families of individuals with IDD and witnessing the benefits that siblings bring to their brothers and sisters with IDD. Challenges in working with siblings included: lack of sibling involvement, systemic barriers, and caregiving burden. Implications for future research and practice are discussed.
Intellectual and developmental disabilities, 2017 · doi:10.1352/1934-9556-55.2.72