To keep Medicaid, a mom caring for her disabled adult son may soon need to prove she works

Four years before Kimberly Gallagher enrolled in Medicaid herself, the public health insurance program’s rules prompted her to make an excruciating choice — to give up guardianship of her son so she could work as his caregiver.

Now, another proposed twist in the rules could mean that, even though Missouri pays her to do that work, she might still have to prove to the state that she’s not unemployed.

The Kansas City, Missouri, resident has cared for her disabled son, Daniel, for all 31 years of his life. A rare genetic condition called Prader-Willi syndrome, in addition to autism, left him with an intellectual disability; a constant, excessive hunger; and an inability to speak. His needs left Gallagher, an elementary school teacher by training, with little opportunity to work outside her home.

As congressional Republicans consider slashing about $1 trillion in federal Medicaid spending, Gallagher is among the 18.5 million Americans who could be required to prove that they work enough to keep their health insurance.

Budget bills in the House and Senate would require 80 hours of work or community service a month for adults who are insured through the Affordable Care Act’s Medicaid expansion program, which has allowed states to extend Medicaid coverage to more adults with low incomes. Forty states, plus Washington, D.C., have expanded their programs, additions that now cover about 20 million Americans, including Gallagher.

She enrolled in the coverage in December 2023, after she could no longer afford her private insurance. Before her husband died of cancer in 2019, the couple paid for private insurance and supported themselves on the income he earned as a master watchmaker. After his death, Gallagher was left to earn a living and find insurance on her own. At 59, she’s too young to collect her husband’s Social Security survivor benefit.

The Medicaid program that pays for in-home care for Daniel and 8,000 other Missourians with disabilities allows family members to be compensated for caregiving, but only if they’re not the legal guardian of the person they care for. So, Gallagher went to court to give up her rights to make decisions for her son and transfer authority to her parents.

“I think it’s appalling that it’s required, but it was necessary,” she said. “There was no way I could work outside of taking care of Daniel.”

Republicans have touted Medicaid work requirements both as a way to reduce federal spending on the program and as a moral imperative for Americans.

“Go out there. Do entry-level jobs. Get into the workforce. Prove that you matter. Get agency into your own life,” Mehmet Oz, administrator of the Centers for Medicare & Medicaid Services, said in a recent interview on Fox Business.

Democrats, meanwhile, have cast the requirements as bureaucratic red tape that won’t meaningfully increase employment but will cause eligible people to lose their health insurance because of administrative hurdles.

Indeed, the vast majority of Americans enrolled in Medicaid expansion are already working, caregiving, attending school, or have a disability, according to an analysis by KFF, a health information nonprofit that includes KFF Health News.

And while the Congressional Budget Office estimates the work requirement included in the House bill would cause 4.8 million Americans to lose their insurance, only about 300,000 of those people are unemployed because of lack of interest in working, according to the Urban Institute, a nonprofit research group. Recent history in states that have tried work requirements suggests technical and paperwork problems have caused a substantial portion of coverage losses.

Still, the provisions are generally popular among Republican lawmakers and the public. Sen. Josh Hawley, R-Mo., who has repeatedly cautioned against cutting people off from Medicaid, has signaled support for adding work requirements.

And 68% of Americans favor the requirement described in the House bill, according to a recent poll conducted by KFF. But support for work requirements dropped as low as 35% when respondents learned that most Medicaid recipients already work and could lose their coverage because of paperwork requirements.

That’s what happened in Arkansas, where 18,000 people lost their Medicaid coverage in 2018 after the state phased in a work requirement. Thousands more were on pace to lose coverage in 2019 before a federal judge halted the requirement, largely over concerns about coverage losses. In discussions with focus groups, KFF found that many Arkansas Medicaid participants did not fully understand the requirements, despite the state’s outreach efforts, and some people didn’t receive mailed notices. Others were confused because the work-reporting paperwork and separate forms to renew Medicaid coverage asked for similar information.

Many family caregivers would be exempt from the work requirements proposed in Congress, but Gallagher probably would not, since she had to relinquish guardianship of her son to be paid for the work. While the hours she already logs should be enough to satisfy the requirement, she’ll need to report them again — unless the state can identify her through its existing data. But Missouri has a history of procedural problems in the state agency that administers Medicaid.

In early 2022, for example, Missouri was taking more than 100 days on average to process applications for Medicaid expansion, a wait that prompted patients to put off needed care and was more than twice the processing time allowed by federal law.

And 79% of the more than 378,000 Missourians who lost Medicaid coverage when covid-era enrollment protections ended in 2023 did so because of procedural reasons.

The next year, a federal judge ruled that Missourians were illegally being denied food aid by the state, in part because insufficient staffing at call centers left eligible people without assistance.

“They’re historically understaffed,” Timothy McBride, a health economist at Washington University in St. Louis, said of the state agency that administers Medicaid and food assistance. “I think that’s really the underlying problem.”

McBride’s analysis of Missouri’s Medicaid recipients found that fewer than 45,000 of the people enrolled in expansion in 2023 were unemployed for reasons other than caregiving, disability, attending school, or retirement. But more than twice that many Missourians could lose their insurance if work requirements prompt disenrollment rates similar to Arkansas’ implementation, according to a study from the Center on Budget and Policy Priorities, a left-leaning think tank that analyzes government policies.

The estimate assumes many otherwise eligible people would still lose coverage as a result of falling through the cracks, McBride said.

Hawley, who backed the Senate bill, declined to comment for this article. The senator previously told reporters that “we can sort that out” when asked about eligible people inadvertently losing Medicaid because of work requirements.

Gallagher worries about her coverage, because she recently was diagnosed with Hashimoto’s disease, an autoimmune disorder that attacks the thyroid gland. She said she had to search for her Medicaid card to fill the prescription that followed, having barely used it in the year in a half she’s been covered.

She also worries about her son’s Medicaid. A nursing home is not a realistic option, considering his needs. His coverage doubles as Gallagher’s only source of income and also pays for other caregivers, when she can find them, who give her breaks to tend to her own health and to her aging parents.

But nearly all in-home services like those Daniel receives are optional programs that states are not required to include in their Medicaid programs. And the magnitude of the cuts being proposed have prompted fears that the optional programs could be chopped.

“It would destroy our lives,” Gallagher said. “The only income we would have would be Daniel’s Social Security.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.