Getting from here to there: future planning as reported by adult siblings of individuals with disabilities.
Adult siblings say legal and housing plans lag far behind family talks—screen for the gap and plug it with sibling-focused training.
01Research in Context
What this study did
Faught et al. (2021) sent a one-time survey to adult brothers and sisters of people with intellectual or developmental disabilities.
They asked how many of eleven future-planning tasks the family had finished.
Tasks ranged from talking about the future to signing legal papers and picking where the person will live.
What they found
Siblings said their families had done only about six of the eleven jobs.
Chatting about the future happened most; legal papers and housing plans happened least.
The gap shows families talk more than they act.
How this fits with other research
Adams et al. (2021) extends the same picture. They ran a small sibling group called STEP and saw big gains in empowerment and service know-how.
The survey says "we stall," the pilot says "a class helps"—together they form a road map: assess first, teach next.
Eldeniz-Çetin et al. (2026) adds depth. Their interviews reveal deep worry about lifelong care. The low numbers in G et al. now feel less like laziness and more like fear; siblings need both skills and emotional support.
Herrema et al. (2017) shows the worry is not just among siblings. Any family member of an autistic adult reports high weekly fear about future care, matching the slow action seen here.
Why it matters
You now have a quick screen: ask siblings which of the eleven tasks are done. Where they stall, offer STEP or a sibling support group. Pair legal referrals with emotional check-ins; worry blocks action. Start early, long before parents burn out.
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02At a glance
03Original abstract
BACKGROUND: Although they will often serve as caregivers for their brothers-sisters with intellectual and developmental disabilities (IDD), adult siblings are rarely included in future planning. METHOD: This study examined 495 American siblings who completed a web-based questionnaire about themselves, their brother-sister with IDD, parents and whether their families completed 11 future planning activities. RESULTS: Although virtually all families completed some future planning, on average, families completed slightly over half of the 11 activities (75% completed eight or fewer). Families more frequently identified a successor to current caregivers and engaged in planning discussions with one another and with the brother-sister; least often, families completed a letter of intent or began securing residential placements. Future planning activities comprised three domains: (1) legal activities, (2) residential activities and (3) family discussions about the future. Variables relating to one or more domains included whether the brother-sister lived in or outside of family home; brother-sister independent living abilities; presence of an intellectual disability; parent caregiving ability; and current sibling caregiving and involvement with the brother-sister with IDD. CONCLUSIONS: Although most families engage in some future planning, performance varies widely within and across future planning domains. Future planning involves different considerations and interventions depending on whether one is considering legal, residential or family discussions.
Journal of intellectual disability research : JIDR, 2021 · doi:10.1111/jir.12806