Opinion: Illinois Faces a Choice: Protect Disability Care Progress or Slip Backward

SPRINGFIELD -- Illinois knows what backsliding looks like — long waiting lists, underpaid caregivers, and families left without support. In this op-ed, IARF President Josh Evans warns that proposed service hour cuts risk dragging the state toward that past just as momentum has taken hold.

The piece frames the moment as a choice: continue forward with thoughtful reform like the Zero Hour model, or rush into short-term cuts that destabilize lives. Evans’ argument is straightforward but powerful — progress only matters if it’s protected. The decisions made now will define whether Illinois keeps its promises to people with disabilities:

For years, Illinois was known as a state that chronically underfunded services for people with intellectual and developmental disabilities (I/DD). Direct Support Professionals (DSPs) — the essential workers who provide daily care, skill building, medication assistance, and community access — were paid wages that made retention nearly impossible. People with disabilities faced years-long waiting lists, limited community options, and instability in the support system they depend on to live safe and meaningful lives.

In recent years, however, that narrative began to change. Under the Pritzker administration, and with bipartisan support in the General Assembly, Illinois has made steady and substantial progress. We have raised DSP wages, serviced more Illinoisans under the Ligas Consent Decree, and taken major steps to stabilize a workforce that is the backbone of community inclusion.

We cannot let that progress slip away.

Beginning January 1, 2026, the state intends to reduce funded DSP service hours in 24-hour Community Integrated Living Arrangements (CILAs). These homes support more than 10,000 adults with I/DD — people who rely on trusted staff to help them navigate each day. The planned cuts would reduce critical hours of support, especially for individuals with the most complex behavioral or medical needs.

This is not an abstract policy shift. It means fewer opportunities to hold a job, socialize, or simply participate in the community. It means providers — already facing workforce shortages — will have to stretch staff even thinner, fueling burnout and turnover.

As with many decisions in state government, this cut was meant to be temporary — a budget placeholder until Illinois is ready to fully fund a better model known as “Zero Hour” staffing. That model ensures providers have the resources needed to staff homes 24/7, something everyone agrees is long overdue.

But cutting hours now, only to add hours later, makes no fiscal or operational sense. It needlessly destabilizes people’s lives.

Layer on top of that the looming threat of deep federal Medicaid reductions over the next two years. If state cuts proceed at the same time federal dollars shrink, the result will be a service system pushed to — and over — the breaking point.

The people who would pay the price are among the most vulnerable in our state.

We want to be clear: IARF has been proud to partner with state leaders on every step of the progress we’ve made. We know Governor Pritzker and lawmakers share our commitment to a stronger, more equitable I/DD system. We are deeply grateful for that shared vision.

That is what makes this moment so important.

The question before us is whether we continue forward — investing in a stable, high-quality workforce, honoring our commitment to community inclusion, and expanding opportunities for people with disabilities — or whether we take a step backward that jeopardizes all we have achieved together.

We are asking the administration to do one essential thing: delay the implementation of DSP service hour cuts until the Zero Hour model is ready and funded.

This is a reasonable, responsible approach that protects continuity for individuals and families, maintains compliance with federal mandates, and ensures providers have the time and stability needed to plan for systemwide changes.

Illinois has finally begun to correct the decades of underinvestment that left people with disabilities without the support they deserved. We have momentum. We have a plan. And we have leaders who understand what’s at stake.

Now we must protect the progress we have made.

Delaying the January 1 cuts isn’t just a budget decision — it’s a promise kept. It’s a commitment to stability, dignity, and community for tens of thousands of Illinoisans who deserve nothing less.

The road ahead includes big challenges, no doubt. But together, we can continue moving forward — not backward — and build a future where every person with disabilities has the support needed to thrive in the place they call home.