Quality of Care for IDD Adults Living in Florida: A Pilot Study
When Caring Isn’t Enough: Rethinking “Quality of Care” for Adults with IDD
By
Cindy M. Walker, PhD
Founder & CEO, Research Analytics Consulting
Co-authored by
Jacqueline Gosz, MS and
Sue Gottesman, MBA
When I agreed to help design a survey on the quality of care for adults with intellectual and developmental disabilities (IDD) in Florida, it wasn’t a business decision — it was a personal one.
As a Guardian Advocate and Representative Payee for a 46-year-old woman with an IDD — someone I love like family — I’ve seen firsthand both the dedication and the limitations within our system of support. She lives independently now, with a live-in caregiver, a coach, and family who care deeply for her. But like so many others, she depends on a network that is good-hearted yet fragmented — one that often provides comfort, but not always growth. This pilot study, which gathered the voices of 157 adults with IDD and their families across Florida, was an effort to listen — truly listen — to how those receiving care experience their lives.
What We Heard
Respondents were asked about their caregivers, job coaches, roommates, Supported Living Coaches, and Adult Day Training programs — the web of supports that sustain everyday life for adults with IDD.
When we analyzed the data, a clear pattern emerged:
● The highest scores
reflected emotional care — feeling loved, respected, and supported.
● The lowest scores
reflected growth — learning new things, gaining independence, becoming more self-sufficient.
In other words, people feel cared for, but they aren’t always learning how to care for themselves.
As one family shared, “We love the staff — but my son wants to work, not just go to a day program. No one helps him with this.”
This is a crucial finding. It suggests that while our systems of care succeed in meeting emotional needs, they often fall short in nurturing autonomy — the very foundation of empowerment and dignity.
A System of Comfort, Not Empowerment
Across the data, one theme echoes: adults with IDD are surrounded by care, but rarely by opportunity. Only 17% of respondents reported working, and less than 25% worked with a Supported Living Coach — the very professionals meant to teach independence.
Many programs focus on safety, consistency, and affection — all vital. But without a parallel focus on skill-building and choice, we risk creating a system of learned helplessness rather than one of self-determination.
As researchers, we see the numbers.
As families, we feel the consequences.
Where We Go From Here
This pilot study doesn’t claim to represent every community or every story. But it raises an urgent question for all of us — families, providers, policymakers, and advocates alike:
Are we helping adults with IDD live independently, or simply keeping them comfortable?
The answer calls for a renewed vision — one that values both care and capability. A system where teaching life skills, encouraging employment, and honoring choice are not add-ons but essentials.
Because true “quality of care” isn’t only about feeling cared for — it’s about becoming capable of caring for oneself.
At Research Analytics Consulting, we believe data should reveal not just what is measurable, but what is meaningful.
This report — Quality of Care for IDD Adults Living in Florida: A Pilot Study — is both a mirror and a call to action.
