"It's So Tough!": Barriers to Respite Care for Families of Children With Disabilities.
Parents still fight the same 15 barriers to respite care that were spotted 30 years ago.
01Research in Context
What this study did
The team talked to 42 parents of kids with intellectual or developmental disabilities.
They asked one question: what stops you from getting respite care?
Parents named every roadblock they hit, big or small.
What they found
Fifteen barriers showed up again and again.
Some were paperwork mazes. Others were long wait lists or workers who quit.
Parents said the system feels like a second full-time job.
How this fits with other research
Newman (1993) already warned that service coordination was awful thirty years ago. The new list proves the problem never went away.
Winburn et al. (2014) showed caregivers feel fear and role conflict around sexuality support. Ten Hoopen et al. (2025) adds that fear also shows up when parents ask for a help.
Hopkins et al. (2023) found parents of kids with Down syndrome pay out of pocket to fill service gaps. The new study shows respite is one of the biggest gaps.
Howard et al. (2023) asked direct support staff how they stay resilient. Short staff and burnout were top answers. Those same shortages now appear as parent-level barriers in the new data.
Why it matters
You can open your next parent meeting with one slide: 15 common roadblocks to respite. Ask which ones they face today. Then pick one barrier and write a plan to attack it together this month.
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Join Free →Print the 15-barrier list. Circle the top three each parent mentions. Pick one and draft a solution before the session ends.
02At a glance
03Original abstract
Although respite care can have a profound impact on the well-being of families, most parents of children with disabilities struggle to access these scarce services. The purpose of this qualitative study was to map the breadth of barriers families encounter in their pursuit of respite care. We interviewed 31 parents of children and youth with intellectual and developmental disabilities (IDD) about their experiences and the challenges they navigated. Fifteen key barriers emerged in our analyses, highlighting the complexities of this pursuit and the multifaceted issues that can arise for families. We offer recommendations for research and practice aimed at expanding access to this much-needed-but often elusive-family support.
Intellectual and developmental disabilities, 2025 · doi:10.1352/1934-9556-63.6.512