08/20/2026
Community living was never supposed to mean families doing everything alone.
As the country moved away from institutions, people with disabilities were supposed to get the support they needed to live in their communities. But respite care, direct support workers, behavioral services, and other help can still be hard to find. Now, some of the support families do have is at risk.
We know from families and our own research what happens when services aren’t there. When services became harder to find, 81% of family caregivers told us they provided more support themselves. More than half reported very high stress, and half said caregiving put pressure on their finances.
A new Washington Post story follows Annie Morgan and her daughter Ava, who has Angelman syndrome. It offers a rare glimpse into what one family’s daily life can look like when the support they need falls short.
Families of people with disabilities already spend too much time piecing together services and filling gaps in a system that doesn’t provide enough support. They need more help to make community living work, not less.
Read Annie and Ava’s story: https://wapo.st/4g29uZ0
