Erica Carter is passionate about her job, and she has 7 acres of flowers and vegetables to show for it.
Carter's specialty is reeling in grants to support students in the Omaha Nation school district, where she is a finance manager. One paid for the garden that sits next to the district's campus. Another allowed the school system, in one of Nebraska's lowest-income counties, to pay students to maintain it.
"They're out in the sun. They're watering plants," she said. "It's the first time they get a paycheck in their life."
Carter, 41, is paralyzed from the chest down, an injury she's lived with since a fall in her early 20s. It didn't slow her down as she built her accounting career and got a master's degree in human resource management.
But in November 2023, Carter — who lives in Sioux City, Iowa — got a letter from Iowa's Department of Health and Human Services. It said that her income was too high for her to stay on Medicaid and that she might lose her benefits in two weeks if she didn't take action.
States are scrambling to get ready for a new federal requirement to double-check that many people on Medicaid qualify for the benefit, by showing they are working, volunteering, or studying at least 80 hours per month. Politicians' focus on requiring work has angered many people with disabilities who have Medicaid and say current policies that apply to them have the opposite effect — making them choose between working or receiving benefits.
"I have no options"
When Carter got the letter, she was making $110,000 a year, well above Iowa's 2023 income limit for working people with disabilities: $36,450 for a household of one.
"I had no time at all to prepare," she said. "I had a decision to make."
At the time, Carter got her health coverage through Iowa's Medicaid for Employed People With Disabilities, a "buy in" program that allows working disabled Iowans to pay a part of their income to the state to maintain access to Medicaid benefits. Forty-seven states offer Medicaid buy-in programs, but most restrict eligibility through limits on income and assets.
For years, disability rights advocates have pushed state legislatures to change the limits, arguing that they prevent people like Carter from accepting raises or building savings, for fear of losing crucial medical benefits. Massachusetts, Minnesota, New Jersey and Rhode Island have eliminated such limits over the past five years.
To keep her Medicaid coverage, Carter would've had to find a job paying her far less than she was making. Or she could drop her Medicaid coverage and enroll in the school district's health plan. But that plan didn't cover many of the disability-related expenses that Medicaid did.
Carter decided to keep her job and leave the Medicaid buy-in program. In the end, the decision felt like a no-brainer, she said.
"I like getting up and going to work every day, and I really like what I do," she said. "Why would I throw that away?"
But it's been hard on her finances. Carter said she now spends about $35,000 a year out of pocket for expenses her old plan covered, such as the nurse who visits her three times a week, modifications for her car and wheelchair repairs.
"I had the motors go out on my wheelchair," she said. "So that was like $4,000 to fix."
Over the next year, Carter picked up extra jobs and cashed in some of her retirement savings.
"I want to pay my own way. I don't mind paying taxes," she said. She doesn't want to hide her income, either. "I just want an option," she said. "I have no options right now."
A program originally intended to encourage work
Congress approved the option for states to create Medicaid buy-in programs in the 1990s, intending to incentivize more people with disabilities to work. Iowa was one of the first states to adopt the program.
According to state data, 11,640 Iowans were participating in the buy-in program as of late January, or 1.7% of all Medicaid recipients in Iowa.
The income caps have inched up since Carter got her letter. Iowa's limit, set at 250% of the federal poverty level, is $39,900 for a household of one this year.
The rules also restrict recipients from accumulating too much in assets. The current cap is $12,000 for an individual or $24,000 for a married couple, excluding some assets, such as a primary home or vehicle.
Carlyn Crowe, the public policy manager at the Iowa Developmental Disabilities Council, said the limits can prevent disabled Iowans from reaching their goals. "Work full-time and be able to buy a house, live in the community, buy a car," she said. "Those limits placed on what they can earn and save are keeping them from doing that."
Crowe's organization, which has counterparts in every state, is federally funded and advocates for people with disabilities. In Iowa, such advocates have asked legislators to drop the hard limits on income and assets. Instead, they suggest that disabled Iowans pay 6% of their income to buy into the Medicaid program, an approach modeled after a 2024 Tennessee law that created a Medicaid buy-in program with no income and asset limits. (Tennessee is waiting on federal approval before starting its program.)
In recent years, these efforts have built bipartisan support and gained traction. An Iowa House committee unanimously advanced a bill in 2025 to remove the income and asset caps, but the bill died after failing to move forward during this spring's legislative session.
State legislatures are now facing federal reductions in Medicaid spending estimated at more than $900 billion over 10 years, as part of the One Big Beautiful Bill Act.
Alice Burns, an associate director of KFF's Program on Medicaid and the Uninsured, said the specific worry is that buy-in programs, though they're a small part of the larger Medicaid system, could increase overall Medicaid spending if eligibility changes.
"The premiums charged in buy-in programs are nowhere near close to the expected costs of covering people," Burns said. (KFF is a health policy research, polling, and news organization that includes KFF Health News.)
Focusing on initial cost increases is myopic, said Daniel Van Sant, the director of disability policy at The Harkin Institute at Iowa's Drake University. More workers mean additional income tax revenue for states. It also enables some people with disabilities to earn enough to transition off other government assistance programs, such as the Supplemental Nutrition Assistance Program.
"Three, five, seven years from now, you may be recouping those expenses by having people be able to work their way off," Van Sant said.
Falling through the cracks
Iowa lawmakers tried a more modest adjustment during this year's legislative session. Instead of removing the income limit entirely, they introduced legislation that would raise the cap to 300% of the federal poverty level and exempt pension accounts and a spouse's income, among other things, from the asset cap.
In the end, the provision was stripped from a wide-ranging public assistance bill. If it had passed, the new income limit would have been one of the highest in the country for a buy-in program, according to KFF.
Alex Watters, a former City Council member in Sioux City who was paralyzed from the chest down after a diving accident, told state lawmakers during a subcommittee hearing in February that the proposal was a step in the right direction, but not enough.
"I fear that we're going to lose people to other states," said Watters, who added that he was considering moving to Minnesota, which never had an income cap and eliminated asset caps for its Medicaid buy-in program in 2024.
Even if Iowa had raised its income limit, Carter would still have been ineligible.
Carter remains committed to her primary job at the school district. She plans to keep working there and taking on additional jobs, seven days a week, so she can pay for her medical needs and continue helping students.
This story comes from NPR's health reporting partnership with Iowa Public Radio and KFF Health News.
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