‘Having Medicaid keeps me alive': Illinois residents anxiously watch as Congress considers Medicaid cuts

Chicago Tribune

4 hours ago

Across Illinois, millions of people are anxiously awaiting the next move on a bill that would cut hundreds of billions of dollars from Medicaid across the country.
The 'One Big Beautiful Bill Act' would slash the program, which provides health care coverage to people with low incomes, in order to help pay for tax cuts and border and national security. President Donald Trump and congressional Republicans say the bill would cut waste, fraud and abuse from Medicaid, providing coverage only to those who truly need it.
But Democrats, health care leaders and patients say it would devastate those who rely on the program, and the hospitals that serve all patients. Across Illinois, 3.4 million people are on Medicaid — about one-fourth of the state's population.
Depending on which proposals are adopted, Illinois could lose billions of dollars — a loss that could force the state to make difficult decisions about who gets coverage and what kind of coverage they get.
Though the bill was still in flux as of Friday afternoon, multiple proposals in recent weeks have included work requirements for some people who receive Medicaid, changes to rules surrounding so-called provider taxes, and have threatened coverage for more than 770,000 Illinois residents who receive Medicaid as part of the Affordable Care Act's expansion of the program.
'No state, including Illinois, can backfill cuts in federal funding for Medicaid,' said the Illinois Department of Healthcare and Family Services, in response to Tribune questions. 'Cuts in federal funding will lead to reduced services and enrollment, putting the full range of Medicaid services at risk.'
The Tribune spoke with three Illinois residents on Medicaid about what the cuts could mean to their lives.
It's difficult to survive on $1,077 a month.
That's how much Kristina Lewis receives in monthly Social Security disability payments. She gets disability payments from the federal government because she can't work due to mental health issues, heart failure and Type 1 diabetes, she said.
The 64-year-old Alsip woman, however, has been able to stretch her small income, largely because she receives rental assistance from a local charity and because Medicare and Medicaid pay for her health care needs. She's one of nearly 400,000 people in Illinois who receive both Medicare and Medicaid because of disability, low income and/or age, according to KFF, a nonprofit organization focused on health policy.
She's scared of what might happen if Medicaid, a state and federally funded program, is cut. She's on five different medications for heart failure alone.
'They do those cuts and I don't know how people like me on certain medications, how we're supposed to survive and live,' Lewis said. 'I know I'm not the only person out there that's terrified of what's going to happen.'
House and Senate versions of the bill have included provisions that could make it more difficult for people who are enrolled in both Medicare and Medicaid to keep their Medicaid coverage, according to KFF.
Lewis is also one of millions of people in Illinois who may end up dealing with the fallout of Illinois receiving fewer federal dollars overall, if certain proposals become law. Both the House and Senate have proposed changes that could limit the amount of money Illinois and many other states collect in so-called provider taxes, which help boost the amount of money states receive from the federal government for Medicaid.
Proponents of provider taxes say they're a necessary way of funding Medicaid, while critics say provider taxes are a way for states to inflate how much money they receive from the federal government. Republican Rep. Chip Roy of Texas recently called provider taxes a 'Medicaid money laundering scam.'
Though the concept of provider taxes may seem obscure and bureaucratic, in Illinois, they account for about $11 billion a year spent on Medicaid — about 25% of the state's spending for medical services, according to the Illinois Department of Healthcare and Family Services.
Senate Republicans' proposal to reduce provider taxes suffered a major setback Thursday, after the Senate parliamentarian shot it down, saying it didn't follow procedural rules, according to The Associated Press. It was not yet clear Friday afternoon if changes to provider taxes would still be part of the final bill.
Limiting provider taxes is a 'backdoor' way of cutting federal Medicaid funding for Illinois, said Kathy Waligora, a spokesperson for EverThrive Illinois, a nonprofit advocacy organization working to achieve reproductive justice.
'The provider tax is absolutely going to shrink the size of the Medicaid program in Illinois,' Waligora said of proposed cuts. 'Exactly what benefits are cut, what provider rates are cut, what eligibility will be cut remains to be seen, but it will be across Medicaid.'
Lewis is worried about any kind of reduction to her Medicaid benefits. She said she first got on Medicaid about 10 to 15 years ago when she was living in a nursing home because of health issues. Eventually, her health improved to the point where she could live independently.
She worries that if her health issues again become unmanageable, she might have to one day return to living in a nursing home.
'I would really, really struggle,' she said of if her Medicaid benefits were cut. 'My biggest fear is to end up in another nursing home. You lose your independence.'
If she did have to live in a nursing home again, Medicaid may end up footing the substantial bill. In Illinois, Medicaid pays for about 68% of all nursing home care, according to the state Department of Healthcare and Family Services.
Cornelia Simms, 60, of Auburn Gresham, fears work requirements could make it difficult for her to stay on Medicaid — even though she has a job.
Under the bill, childless, able-bodied adults ages 19 to 64 would be required to spend at least 80 hours a month working, doing community service or going to school, in order to stay on Medicaid.
Simms already works about 80 hours a month as a home health care aide — a profession she got into after spending years caring for her ailing mother. She discovered that she enjoys helping elderly people and stuck with it after her mom passed away.
About 70% of Illinois residents on Medicaid already work, according to KFF.
But Simms worries about the paperwork, and the potential problems it could create if she's subject to work requirements. The bill would require states to verify at least twice a year that Medicaid beneficiaries are meeting work requirements. Simms is concerned about being asked to prove that she's eligible twice a year, especially because she said she prefers to verify her eligibility in person, which can require time away from work.
It can be tough for her to take days off from work because the person she cares for relies on her help, Simms said.
'I'm mainly her sole person to take her to the hospital, grocery stores and do all those things with her,' Simms said. 'If I have to take off work to see about my Medicaid then she will be lacking the daily things that she needs.'
The extra paperwork can also create administrative complications. Once, Simms said she forgot to submit paperwork to verify her continued eligibility for Medicaid. Simms lost her coverage, and it took more than six months to get it back, she said. During that time, she canceled doctor appointments and generally tried not to get medical care.
'I tried not to catch a cold,' Simms said. 'I just prayed and held out.'
In Illinois, anywhere from 270,000 to 500,000 people on Medicaid may end up losing coverage for administrative reasons, if work requirements proposed by House Republicans went into effect, according to the Illinois Department of Healthcare and Family Services.
'What we see in other states where there are work requirements is that having the hoops to jump through, the red tape and the administrative burden keep people from accessing and enrolling in health care,' said Anusha Thotakura, executive director of Citizen Action/Illinois, a public interest coalition that's been working with partners across the state to hold events and drive action to fight Medicaid cuts.
'Many eligible people who are working will still lose access if these requirements are put into place,' Thotakura said.
Without Medicaid, Simms said it would be difficult for her to afford health care. She's in the process now of getting about $4,000 worth of dental work, most of which is being paid for by Medicaid, she said.
'No person, unless you've got some money, can afford it, not on a 9-5 (job), not the lower class or middle class,' Simms said of health care. 'It's impossible.'
Isaiah Rogers was up in a tree, wielding a chain saw when his vision began to blur.
He didn't know what was wrong with him, but he knew he couldn't continue his work trimming trees. Dizzy and in pain, Rogers went home, rested and popped ibuprofen.
Eventually, Rogers' son convinced him to go to the hospital. There, he was diagnosed with Type 2 diabetes and told that if he had waited a couple of more days to seek care, he might have died. The hospital helped sign Rogers up for Medicaid, he said.
Since that scare several years ago, Rogers has faithfully been going to his doctor appointments and taking insulin and other medications, he said. He has not been able to return to his job trimming trees, and has been working small side jobs. He and his son have been staying with a friend to help them get by.
The 61-year-old West Pullman man relies on Medicaid to pay for his doctors' visits and the medications that 'keep me above water.'
Rogers is now worried about losing that lifeline. A recent version of the bill proposed work requirements not only for childless able-bodied Medicaid recipients, but also for adults with children older than 14.
Rogers' son is 12. The single father is concerned that there might come a point when he would be subject to the proposed requirement to work 80 hours a week or lose his Medicaid coverage.
Between his health issues and caring for his son, as well as his lack of a high school diploma, Rogers doesn't think it would be possible for him get a job working 80 hours a month. Rogers drops his son off and picks him up from school each day, taking city buses with him to and from the school.
He doesn't envision letting his son take the buses himself. 'At 14, no, not in Chicago,' Rogers said of his son taking the bus alone. 'People who don't ride the bus and don't live in our 'hood, they don't know what's going on. I'm not going to subject my son to that danger.'
He knows the dangers all too well. Rogers was incarcerated when he was younger, saying he was once a 'destroyer' of his community. He's since tried to turn his life around, working with Community Organizing and Family Issues to create positive change.
But his life now, as he knows it, depends on having Medicaid.
He's confident he'll lose Medicaid if he's required to work 80 hours a month. He worries that if he loses Medicaid, he'll no longer be able to afford insulin and his other medications, and he may slip into a diabetic coma or suffer a stroke.
'Having Medicaid keeps me alive,' Rogers said. 'It keeps me going, with the consistent doctors appointments, with the different types of medications.
'Having Medicaid helps me stay healthy to let me take care of my son,' Rogers said.