Now 39, a Pikeville native and senior at Morehead State University, Ellis is among roughly 450,000 Kentucky adults ages 19 to 64 who face sweeping new requirements to keep their Medicaid coverage. She already meets the work and school rules, but she fears a single missed deadline or misplaced document could cost her the care she relies on.

"I have a lifetime of care ahead of me," Ellis said. "This is something I worry about every single day."

The changes, enacted by Congress and the Republican-controlled Kentucky General Assembly, affect the state's $22 billion-a-year Medicaid program, which covers 1.3 million people — more than 600,000 of them children — making it Kentucky's largest health plan. The federal government pays about 75% of the cost.

Most of the new rules take effect Jan. 1, 2027. Adults 19 to 64 must show they are working, in school or volunteering at least 80 hours a month, and they must recertify their eligibility every six months instead of once a year. During the first year, beneficiaries can self-report compliance, but beginning Jan. 1, 2028, they must submit documentation verifying employment, hours, income or other qualifying activities.

Dr. Steven Stack, secretary of the Cabinet for Health and Family Services, which oversees Medicaid, said the state will try to pull information from tax filings and public university enrollment records, but he acknowledged many will fall through the cracks.

"It will cause people to lose their coverage," Stack said. "Not because they are ineligible … but because it's a lot to keep up with."

Stack estimated "tens of thousands" of Kentuckians could lose coverage for procedural reasons. Nationally, a Robert Wood Johnson Foundation study projects 5 to 10 million people could lose Medicaid by 2028 under the new rules, many of them people who qualify but fail to provide adequate documentation or don't realize they are exempt.

"I think the unfortunate reality is that it will catch people off guard," Stack said. "No matter how hard you try to communicate, it's hard to reach everybody."

The federal changes stem from HR 1 of 2025, the sweeping law dubbed by the Trump administration as the "One Big Beautiful Bill," which is estimated to cut Medicaid spending by more than $900 billion over a decade. Kentucky lawmakers added further requirements through House Bill 2, including small copays for some services and tighter reporting rules. HB2 sponsor Rep. Ken Fleming, R-Louisville, argued during debate that Medicaid's budget had more than doubled in five years to an "unsustainable level." Fleming lost his reelection bid on Nov. 3 to Democrat Suhas Kulkarni.

Most of the changes apply to adults who gained coverage through the Affordable Care Act expansion, which allows people earning up to 138% of the federal poverty level — about $22,000 a year — to enroll. So-called traditional Medicaid, covering nearly 900,000 Kentuckians including low-income pregnant women, people with disabilities, and poor elderly nursing home residents, is largely unaffected.

Certain groups are exempt from the new work rules, including parents or caregivers of children under 14, pregnant women, foster youth up to age 26, people in substance use treatment, disabled veterans and those deemed "medically frail." In 2027, people can self-attest to a medical exemption, but starting in 2028 they must provide proof. Stack said the state is still developing guidelines for what qualifies as medically frail.

Democrats held listening sessions in Louisville, Lexington, Morehead and Prestonsburg to hear from beneficiaries. Rep. Lindsey Burke, D-Lexington, said the testimony underscored Medicaid's role as "a stabilizing force in the lives of Kentuckians."

"Whether it's the birth of a new child, helping new parents get on their feet, issues at the end of life or all the issues in between, Medicaid does a lot for the lives of Kentuckians," Burke said.

Even families whose services are technically shielded from the work rules are bracing for disruption. Cheri Kulik, an Oldham County mother whose 18-year-old daughter, Charlotte, has autism and receives services through the Michelle P. Waiver, said a little-noticed provision in HB2 now requires families to prove eligibility once a year just to stay on the program's waiting list — which already has nearly as many people waiting as it serves.

"If you're on that list and you miss this form you have to send back, they can take you off," Kulik said. She has been warning other parents to watch for the state's letter. "For a parent with a child with a disability, it is already ridiculously hard. I cannot emphasize that enough."

Kulik added: "I don't know if we've seen the worst of what's going to happen."

Newly elected Democrats have vowed to revisit the cuts, but it remains unclear whether any changes could be made before the rules take effect in Kentucky. For Ellis, the uncertainty is personal.

"I think a lot of people are going to lose coverage," she said. "I think we're going to see a lot of people across the state like me — who got health coverage for the first time — are going to lose coverage."