Letter: State budget short of needs for the disabled

I write today on behalf of my 30-year-old nonverbal son Matthew who has lived for seven years in a home operated by UCP Seguin, a community agency that cares for people with disabilities. After a recent surgery, Matthew's doctor suggested that he rehabilitate in a nursing home. I called UCP Seguin for advice, because a nursing home does not have experience with the kind of care a developmentally disabled person needs.

These were the words that followed: "Matthew belongs in his home with the people who know him and love him." This meant the world to me, because I trust Matthew's caregivers. They are skilled at addressing his needs. They understand his silent communication and know how to respond. The caregivers at Matthew's home know exactly how to care for him. And to lose them? Unimaginable.

Unfortunately, this is the situation thousands of families in Illinois face. Significant underfunding from the state created a crisis in the community provider system, including an inability to recruit and retain qualified caregivers. Providers are forced to close homes, limit services and turn away families who are desperate for support.

Matthew needs 24/7 care from dedicated, patient, well-trained and well-paid caregivers. He deserves a system that supports him in living a full, meaningful life. I urge our state lawmakers to consider the thousands of Illinoisans with disabilities when they negotiate this year's state budget.

In December 2020, the Illinois Department of Human Services released an independent study that lays out a clear list of priorities and the funding required to implement them.

Gov. Pritzker's proposed budget falls $152 million short of the $246.8 million increase needed to fully fund the study's recommendations and stabilize the system. Without this funding, the safety and well-being of people with disabilities is gravely at risk. They deserve more.

Kathleen Hansen


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