The impact of caring for adults with intellectual disability on the quality of life of parents.
Parents and paid staff must plan together, but money rules have to reward that teamwork first.
01Research in Context
What this study did
Storch et al. (2012) talked with parents who still care for their adult sons and daughters with intellectual disability.
The team used open interviews to learn how formal services and natural supports like family, friends, and faith groups work together.
They wanted to see why the two support circles sometimes clash and what would make them mesh better.
What they found
Parents said both kinds of help are needed, but they do not blend on their own.
Without clear funding rules, agencies and families step on each other’s toes instead of sharing the load.
The study calls for money and policies that push teams to plan together, not in separate silos.
How this fits with other research
McQuaid et al. (2024) later counted supports across the country and found family still carry most weight, especially in health, while jobs and housing stay thin. Their numbers back the 2012 plea to invest where support is weakest.
de Leeuw et al. (2024) scoping review lists caregiver guilt and distrust as big walls to future planning. The 2012 paper shows the same walls stem from clashing formal-natural roles, so both studies point to early, honest team talks as the fix.
Frazier et al. (2023) list 64 parent-reported job barriers. The 2012 work explains why those barriers persist: without funding that rewards joint planning, agencies and families keep working alone, letting gaps grow.
Why it matters
You can’t fix service gaps by adding more meetings. You need funding that pays for shared plans. Ask your funder or agency for a joint planning billing code, or write one into your next grant. One shared hour paid beats ten unpaid emails.
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02At a glance
03Original abstract
Evidence suggests that integrated support, combining both natural and formal supports, is often essential for individuals with developmental disabilities to achieve their preferred quality of life. However, studies are limited on how to organize supports so that people with developmental disabilities and their families find a balance between formal and natural supports. Often, there are systemic and personal boundaries around the nature and extent of support that can be offered to persons with developmental disabilities through formal mechanisms, yet the value of natural supports in the lives of persons with developmental disabilities is often undervalued in society. Therefore, the objectives of this study were to explore formal support providers' perspectives on (a) the unique skillsets and attributes of natural support providers and formal support providers; and (b) how we might best enable both natural and formal supports for persons with developmental disabilities and their families. Following a qualitative approach, we interviewed 16 formal support providers working with adults with developmental disabilities and their families via Zoom. We analyzed data using thematic analysis. We organized results into three themes: the role of natural supports, the role of formal supports, and strategies to best configure a system of supports. Results imply that there is a need for investment of funding to incentivize both support structures for adults with developmental disabilities and their families. Future studies should explore the perspectives from people with developmental disabilities and their natural support providers.
Journal of intellectual disability research : JIDR, 2012 · doi:10.1111/j.1365-2788.2011.01501.x