PAXTON — Kelly Griffin had grown tired of living with roommates and reveled in having her own apartment during her senior year at Judson University in Elgin, Illinois.
Kelly has Down’s Syndrome and qualifies for a Medicaid benefit known as Home and Community Based Services. The program paid for a personal service worker to help her succeed at living alone.
The worker, a young woman named Kaylee, gave Kelly rides to the grocery store and doctors’ appointments and coached her as she worked a variety of part-time jobs near campus. Another young woman also helped Kelly.
“They developed a friendship and did a lot of fun things together,” said Gayle Griffin, Kelly’s mom, seated next to her daughter in their home in Paxton.
“My girlfriends,” Kelly agreed.
More than 3 million Illinois residents like Kelly receive health insurance and long-term care through Medicaid. The joint federal-state program covers low-income people and those with disabilities. But the Trump administration wants to cut $1.5 trillion dollars in federal spending. which according to a report released in March by the nonpartisan Congressional Budget Office (CBO), won’t be possible without steep cuts to Medicaid.
Experts say those cuts could come in a variety of forms, from a cap on federal spending on Medicaid to work requirements for people who receive coverage through the Affordable Care Act. The Associated Press reported Wednesday that House Republicans appear to be backing off some—but not all—of the proposed steep reductions in the Medicaid program. But no final decisions have been made yet, with House Speaker Mike Johnson telling reporters to “stay tuned.”
Meanwhile, the possibility of losing coverage is causing tremendous stress to people in Illinois who rely on it to survive.
Gayle says it’s devastating to think about. Kelly, who has since graduated and moved back home to Paxton, is looking for a job and an apartment. But that hinges on Kelly having that same Medicaid benefit. She’s now 27 and cannot drive and she will need a work coach as she pursues her dream of finding a job in the food industry.
“We’ve always really dreamt of her having the most autonomy that she can have in her lifetime,” Gayle said. “And she is an only child, so we want her to have the greatest measure of independence when we’re no longer here.”
Medicaid cuts would mean a loss of independence for many
If Kelly could no longer hire personal service workers through Medicaid, she might have to switch to institutional care such as an assisted living facility. And many others would have to make the same painful switch, says Paula Vanier, who works for PACE, a nonprofit in Urbana that supports people with disabilities.
Vanier relies on Medicaid herself — she was born with cerebral palsy that resulted in a speech impediment and requires her to use a wheelchair.
She said moving to a facility comes with a loss of independence.
“You don’t get to go where you want to go,” she said. “You don’t get to eat what you want to eat. You don’t get to have a dog.”
Like Kelly, Paula Vanier also relies on Medicaid for personal service workers, who help her with a variety of tasks like bathing, dressing and laundry. Without those workers, life would be much harder for her. But it would be worse for her neighbor, she said, who has even more severe disabilities and cannot get out of bed without a personal service worker to help.
Kelly and Paula are just two of the 83 million people in the country who receive Medicaid for health care and other types of care services. Right now, they are in the dark about which parts of Medicaid could be cut.
“The Medicaid program as a whole is under attack, as we all know, by the Trump administration and by the Republican-controlled Congress,” said Nadeen Israel, senior vice president of policy and advocacy at AIDS Foundation Chicago. “They’ve named lots of different ways that they are planning their attack, their cuts.”
She says Republicans have discussed changing the way Medicaid is funded. Currently, the federal government and Illinois each pay about 50% of the costs — and there is no limit. That means when health care costs rise due to inflation, the federal dollars also increase to cover that difference.
Republicans, though, have floated the idea of block grants, which means states would get a lump sum each year with no increases for inflation. They’ve also discussed spending caps, meaning the federal government’s share for a Medicaid’s recipient’s medical bills would be fixed at a certain amount and no more.
In either case, states would have to make up the shortfall, which, Israel says, is unlikely.
“The way our fiscal climate is in Illinois,” she said, “we’re not flush with cash to begin with.
People covered by Medicaid expansion may be at even greater risk
A dozen House Republicans recently warned in a letter to House leadership that they won’t support a bill that includes “any reduction in Medicaid coverage for vulnerable populations.”
Israel says that means it’s likely Republicans may Medicaid cuts more on federal spending that supports what’s known as the Medicaid expansion population.
These are adults living in poverty who receive Medicaid through the Affordable Care Act. Unlike traditional Medicaid, the federal government pays 90% of the cost of covering that population and the states pay 10%.
Forty-one states have chosen the expansion, including Illinois, which has 770,000 residents in its expansion population.
“We’re talking about young people who have jobs,” Israel said. “They’re still kind of in or near poverty, right? … We’re talking about a lot of part-time [working] folks. We’re talking about some older people who aren’t at the 65-year mark, yet,” meaning they don’t yet qualify for health insurance through the federal Medicare program.
Illinois, like some other states, also has a trigger law. If the federal funding dips below 90%, the state must drop Medicaid coverage to the expansion population within 90 days unless it can make up the difference. Again, Israel says — unlikely.
“No state can come up with a few billion dollars a year like that,” she said. “Even if … a lot of people supported taxes, increasing taxes, which is not the case. But even if that was the case, you can’t collect that much tax that quickly.”
Yet another Republican proposal is to stipulate work requirements for the expansion population. Israel says that would be burdensome to people already stressed by poverty and many would inadvertently get dropped from the program because they missed a piece of mail or failed to check a box on a form.
The non-partisan Center on Budget and Policy Priorities has done research that shows some proportion of these people will then give up and not try to re-enroll.
“That’s why the Republicans want to put in a work requirement,” Israel said. “They won’t say that, but they know that if they put that in, a lot of qualified people will give up.”
Republican lawmakers have said they want the work requirements so people on Medicaid have “skin in the game,” meaning they are actively contributing to their own well-being.
As it stands, almost two-thirds of Illinois residents in the expansion population work. Those who don’t may have a chronic health or mental health condition, or a substance abuse problem that makes working difficult.
That was the case for Matthew McFarland, who grew up in Harvey, a south suburb of Chicago, and now lives about 20 minutes away in Dyer, Indiana. He enrolled in the Illinois expansion program when he was attending Cook County drug court and needed to pay for rehab to overcome his severe drug addiction.
“I mean, I had to get better before I could work, right?” he said. “I couldn’t, you know, with a massive and I do mean really bad heroin, crack cocaine addiction, which means I also had underlying mental health conditions, and I was very sick, right? I was literally sick from the Hepatitis and severe liver damage. There is no way I could have worked.”
Today, McFarland is no longer enrolled in Medicaid. He gets health insurance through his job as Vice President of Strategic Partnerships and Community Relations at TASC, a Chicago-based nonprofit that provides support to people struggling with addiction — and helped him turn his life around.
“Here I am, you know, paying it back, right?” he said. “The medication was expensive, but it saved my life; sure, the drug treatment was expensive, but it saved my life. And now, you know, I’m saving other people’s lives.”
What will happen to Medicaid could become more clear as lawmakers start to mark up the House budget bill that they passed in April.
Meanwhile Medicaid advocates hope that if they’re loud enough and word gets out, they might rescue a program that literally saves lives.