I write today on behalf of my 32-year-old son, Daniel, and thousands of Illinois citizens with developmental disabilities who continue to face a housing and staffing crisis.
Dan has autism, is non-verbal and requires 24/7 supports. He is loving, funny and helpful. He’s a terrific son who “keeps us on our toes” and is an essential part of our family.
Dan is fortunate to live for just over six years in a small group home near us in Champaign — one that could be forced to close because of inadequate state funding. We are very grateful to the agency that committed to opening a home for Dan here in Champaign.
Over the years that Dan has been “home,” his emotional and behavioral stability have improved dramatically. We’ve never seen him happier. But, the threat that the agency will not be able to hang on is with us every day.
Dan and others like him deserve the opportunity to live near their families, to build friendships and develop interests, to volunteer, work and play in their communities, just like “regular” people do. Illinois agencies provide the homes and care that make this life possible for people with disabilities, but they are severely underfunded and chronically understaffed.
In fact, our state ranks 47th for its funding commitment to people with intellectual and developmental disabilities. Direct Support Professionals — the caregivers who really support my son — are systemically undervalued and undercompensated by the state.
I say that Dan is fortunate because far too many Illinois residents with developmental disabilities are forced to live far from their home communities. And that’s if they receive any support or placement at all.
More than 18,000 people with disabilities are languishing on the state’s waiting list, and the lack of services is especially acute for people with complex medical or behavioral needs.
Even before COVID blindsided us all, we were aware that the cost to Dan’s agency of operating the three Champaign homes was becoming too burdensome. They closed one home in January. The possibility that they could close Dan’s home is frightening.
No system of care is perfect, but we can and absolutely must do better. Many other states do. Why can’t Illinois?
The good news is that everyone now knows exactly how to solve this crisis. In December 2020, the Illinois Department of Human Services released a state-commissioned, independent study that lays out a clear list of priorities and the funding required to implement them. When the General Assembly passes its annual budget in the next few days, I urge them to follow the funding recommendations in the study.
Now is the time to finally make humane treatment of our citizens with developmental disabilities a priority.