Who Helps? Characteristics and Correlates of Informal Supporters to Adults With Disabilities.
Adults with IDD lean on parents and siblings for fun first, housing last—so shore up that unpaid team.
01Research in Context
What this study did
Bao et al. (2017) asked adults with intellectual or developmental disabilities who helps them day-to-day.
The team used a national survey. They listed parents, siblings, friends, neighbors, and others.
People checked who gave unpaid help in areas like money, health, fun, or housing.
What they found
Parents and siblings were the main helpers.
Recreation got the most unpaid support. Housing got the least.
Most adults with IDD rely on family, not friends or staff, for free help.
How this fits with other research
Pitchford et al. (2019) asked only siblings and got the same picture: recreation tops, housing bottoms. The match shows the 2017 numbers hold up.
Syriopoulou-Delli et al. (2012) used open-ended questions. Siblings said they need facts, respite, and better services. The 2017 count now shows how big that job is.
Murthy et al. (2025) flipped the lens to Indian caregivers. Unemployed relatives begged for peer groups. Together the studies say unpaid help is huge worldwide, yet the helpers feel left out.
Why it matters
You already write formal plans. Add a quick map of each client’s unpaid team: mom, dad, brothers, sisters. Ask what help they give and what they need. A short check-in can stop burnout and keep recreation goals alive.
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02At a glance
03Original abstract
This study examined who provides informal (or unpaid) supports to people with intellectual and developmental disabilities (IDD). Participants included 657 adult siblings of people with disabilities who responded to a national survey about informal supports in the areas of recreation, employment, and housing. Results indicated that most people with IDD received informal supports, with parents and sibling respondents most often providing those supports. Support was most commonly received in recreation, as opposed to housing or employment. Asked to list nonfamily informal supporters, respondents often mentioned paid staff and disability organizations. Correlates of total numbers of informal supporters included the individual with disability's functioning level and parents' ability to care for their offspring with disabilities.
American journal on intellectual and developmental disabilities, 2017 · doi:10.1352/1944-7558-122.6.492