Eye On Illinois: Readers, experts offer context on challenge of improving disability services

In government, simplicity is typically a myth. Even topics we presume complex often are undersold as, “Well, it’s complicated…”

Ten days ago I wrote about the state’s longstanding conflict with the federal government over the adequate provision of services for people with developmental disabilities. The gist was suggesting an informed estimate of how much it would take to at least solve the parts of the equation that require money.

An Oglesby reader wrote to point out a November 2020 study, from Chicago-based Guidehouse. The document, tinyurl.com/GuidehouseStudy, suggests new ways to fund services “including residential services provided through Community Integrated Living Arrangements and Intermediate Care Facilities for Persons with Intellectual/Developmental Disabilities settings, as well as nonresidential supports, including day programs, supported employment and therapy and counseling services.”

“I served on a rates study sub-committee,” the reader noted. “The results of the objective look at costs and comparisons to other states, were welcomed when released. I retired in 2021. At that time, I thought: finally, a commitment to increase rates to enable us to do what was becoming an impossible job. And I’m going to miss all the fun. But the state is not necessarily keeping up with the initial efforts. There is only so much money and there are so many human services issues that need to be addressed.”

Hence the call for a renewed cost figure, to remind legislators and taxpayers of the height of the mountain we need to climb.

At the reader’s suggestion, I contacted Josh Evans, executive director of the Illinois Association of Rehabilitation Facilities, and Kathy Carmody, who leads the Institute on Public Policy for Intellectual and Developmental Disabilities.

Both graciously responded with abundant information and insight. Readers moved by this topic should research both groups, and every state lawmaker ought to meet with these experts. Without attempting to invalidate the Guidehouse study based on its age – research started in August 2018 – data Evans and Carmody shared clarify any improvements in the six years of Gov. JB Pritzker’s administration still leaves Illinois both behind other states and far from its own stated goals.

“Illinois has made real progress in addressing the core issue facing adequate community-based services for persons with disabilities: investment of resources,” Evans said. “However, we’ve yet to fully fund vetted rate recommendations from 2020 that were intended to establish stability for individuals currently receiving services.”

He added the system still needs reforms to provide more individualized support, especially given “the needs and expectations of younger generations entering services.”

As I told the experts, I don’t think the average person will push for reform until they understand what problems we’re facing and what solutions are practical. We’re a long way from even that baseline.

• Scott T. Holland writes about state government issues for Shaw Local News Network. Follow him on X @sth749. He can be reached at sholland@shawmedia.com.