SPRINGFIELD — Intellectual and developmental disability service organizations are bracing for potential cuts to Medicaid and Medicare from the federal government under congressional Republicans and President Donald Trump.
About 3.9 million Illinoisans are enrolled in Medicaid. Of that total, 44% of Medicaid recipients are children, 9% are seniors and 7% are adults with disabilities, according to the Illinois Department of Healthcare and Family Services.
“We’re very concerned. We don’t see what the path is right now,” Illinois Association of Rehabilitation Facilities CEO Josh Evans CEO said. “And so our mission is to continue to educate our members of Congress that this is not just a program that is ripe with payments, it’s serving people.”
IARF is an association of community-based providers that serve children and adults with intellectual and developmental disabilities and serious mental illnesses in Illinois. Community providers focus on inclusion in a smaller community that offers more independence when providing care and some community providers help their residents find employment.
“I’m going to do whatever it is that I can do, but I can’t come up with $8 billion to keep a federal program going in my state,” Gov. JB Pritzker said in an interview with The Contrarian last week. “I can spend hundreds of millions of dollars to try to provide free healthcare for people who are most acute, but people are going to die because of what they’re doing.”
Prtizker proposed increased funding in the developmental disabilities division at the Department of Human Services, DHS, in his proposed 2026 fiscal year budget. This would include funding to continue placements of individuals who qualify and want to live in community-based settings and for new placements under a 2011 federal court order the state has struggled to comply with.
The Ligas Consent Decree requires states to provide care options in integrated community settings for Illinoisans with intellectual and developmental disabilities who request community-based services.
Despite Trump’s claim that he would not make cuts to Medicaid, congressional Republicans’ budget resolution would almost certainly result in shrinking funding for the program.
Trump has vowed not to cut Medicaid benefits, but he has also said his administration will go after “waste and fraud” and cited tens of billions of “improper payments” in entitlement spending as the target for trims.
“You need to be careful in terms of how you’re looking at Medicaid, whether it’s focused on ways you can try to eliminate fraud, abuse and improper payments, which we all support, by the way, (but) major substantive changes to Medicaid will have a downstream impact on disability services,” Evans said.
Service providers worry the budget cuts proposed in a United States House budget resolution could jeopardize access to medical care for people with disabilities in Illinois and across the United States who rely on Medicaid. The budget proposal calls for $2 trillion in budget cuts, making it likely that Medicaid and Medicare will be impacted, Evans said. All 14 Illinois Democratic House members of Illinois’ congressional delegation voted against the resolution.
“I think some people assume that the cut automatically equals cost savings, but that isn’t necessarily the case,” said Kelly Berardelli, CEO of southwest suburban-based disabilities nonprofit Sertoma Star Services. “Just because the funding is cut doesn’t mean the need is gone, and a lot of people we serve are from the most vulnerable populations, so they’re going to still need services and supports.”
Sertoma Star Services serves more than 1,500 children and adults with intellectual and developmental disabilities in the Chicago area and Northwest Indiana. The organization receives most of its funding from Medicaid, and many of the people using their services rely on Medicaid for access to care.
“Any cuts to Medicaid have the potential to reduce the quality of life for the people we serve,” Berardelli said.
Evans agreed.
“Disability services in Illinois are primarily exclusively funded through Medicaid,” he said. “There’s no private pay, there’s very little to no Medicare. It’s all Medicaid.”
If access to community-based care is slashed by Medicaid cuts, people will seek care through institutionalized facilities, which tend to be large facilities run by the state with a focus on medical care, or in some cases, be hospitalized. This could cause Illinois to further violate the Ligas Consent Decree.
According to Berardelli, people with intellectual and developmental disabilities living at home could lose access to respite care if Medicaid funding is decreased in Illinois. Respite care is temporary care from a professional who is not the recipient’s primary caregiver, which is usually a couple of hours in a day or week.
More than half of those who receive care from Sertoma Star Services live with a family member over the age of 55, making the threat to respite care particularly concerning, Berardelli said. If these people cannot get respite care, they may not be able to live at home and will have to be placed in institutionalized facilities, more full-time care away from home.
While some may seek placements at community providers, there are already long wait times and a shortage of community providers of care for people with intellectual and developmental disabilities.
“Cuts to Medicaid would, I think, inevitably increase that waiting list,” Berardelli said. “Progress has been made over the past several years, and we would definitely see that progress reversed if there were cuts to Medicaid.”
Behavioral health services would also be impacted as Medicaid helps both to fund service providers in addition to insurance coverage for services such as mental health care and addiction treatment.
“The majority of our member organizations who provide behavioral health services are straight Medicaid,” IARF senior vice president of behavioral health policy and advocacy Emily Miller said. “Very few accept private insurance and so you would decimate the community with these drastic cuts that are being proposed to the Medicaid program.”
Cutting federal funding would also cause many health industries to compete with one another for funding. If there is a more limited pool of funding for health provider programs, not every specialized program would get the funding they need.
In the state fiscal year that ended in June, Illinois received over $20 billion in federal Medicaid funding, which made up about 62% of the total funding for Medicaid programs in Illinois, according to HFS.
“If there’s a major change where we see a dramatic loss of dollars, that means we’re going to have to be lobbying against one another in the healthcare and human services space for a more limited amount of resources,” Evans said. “We cannot be put in that position.”
Erin Drumm is a graduate student in journalism with Northwestern University’s Medill School of Journalism, Media, Integrated Marketing Communications, and a fellow in its Medill Illinois News Bureau working in partnership with Capitol News Illinois.
Capitol News Illinois is a nonprofit, nonpartisan news service that distributes state government coverage to hundreds of news outlets statewide. It is funded primarily by the Illinois Press Foundation and the Robert R. McCormick Foundation.