By Grace Vitaglione
Julie Crockett’s 8-year-old granddaughter, Sophia McConkey, relies on Medicaid every day. She has a rare genetic disorder called TBCK syndrome that causes low muscle tone, seizures and fragile bones.
McConkey requires 24-hour nursing care, which allowed her to qualify for a Medicaid waiver called Community Alternatives Program for Children, which pays for 16 hours of nursing a day, Crockett said. Her family provides the other eight hours. Without the extensive nursing support, McConkey would have to live in a nursing home.
Crockett said that would be devastating, especially as there’s no nursing home for children in the Greensboro area where they live — which would leave the child without her family for the first time in her life. McConkey is aware of what’s going on, even if she can’t talk, Crockett said.
“She is bright and trapped. If she were in a nursing home, she would be ignored,” Crockett said. Otherwise, the family would have to try to provide 24-hour nursing care on their own without Medicaid, she said.
“I wouldn’t have a life until Sophia passed away, and then the guilt because I wasn’t able to keep her alive would destroy me,” she said.
Crockett said she’s “extraordinarily worried” about potential Medicaid cuts. She’s not alone. Advocates and people who rely on Medicaid expressed concerns about the impact of potential federal-level cuts on older and disabled people in North Carolina.
Medicaid covers medical costs for low-income people, including for low-income seniors in nursing home care. The program also provides home- and community-based services to keep people like McConkey out of nursing homes. Many low-income older people are dually enrolled in Medicare and Medicaid, which helps them pay for services Medicare won’t cover.
North Carolina Medicaid Deputy Sec. Jay Ludlam said if the U.S. Congress cuts Medicaid, the state will work with what they have, “but in the end, a cut is a cut, so getting less would mean we’d likely have to do less.”
The waiver program McConkey relies on is an optional service that is not required by federal Medicaid, so it could be up for elimination if cuts are made.
Federal and state government decisions to come
The Republican-led U.S. House of Representatives approved a budget framework on April 10 that instructs the Energy and Commerce Committee, which oversees Medicaid, to reduce government spending by $880 billion over a decade, STAT News reported.
But state Senate Leader Phil Berger (R-Eden) told reporters he doesn’t think major Medicaid cuts will happen, during an informal news conference after his chamber’s session on March 27.
“The folks in Washington have a long history of talking about a lot of things and a very short list of things they actually do,” he said. “We’ll deal with a problem when it is a problem.”
Nonetheless, the state must try to prepare for potential changes, said state Rep. Donny Lambeth (R-Winston Salem), hence his proposal to create a Medicaid Sustainability committee that would try to figure out how the state can contend with funding cuts.
Lambeth also cosponsored House Bill 491 in the N.C. General Assembly, which would set up the process for the state to implement work requirements for Medicaid beneficiaries if the federal government gives the okay. Sen. Ralph Hise (R-Spruce Pine) introduced a similar bill in the state Senate.
Medicaid is paid for by the state and federal government. States pay their share — in North Carolina’s case that’s just over a third of the costs — while the federal government picks up the rest.
For the Medicaid expansion population, the federal government pays considerably more — 90 percent of the cost — for expansion participants, while hospitals pick up the remaining 10 percent of the tab through a special tax assessment. But the law that expanded North Carolina’s Medicaid program contains a “trigger” law that says if the funding match from the federal government decreases, North Carolina’s Medicaid expansion program automatically ends.
That would mean a loss of coverage for more than 650,000 enrollees who have gained access to the program since December 2023.
Adding a trigger law to the Medicaid expansion legislation was the only way some Republicans would agree to vote for it, Lambeth said. Now he worries that there’s a high risk of Congress changing that funding formula.
If that were to happen, it’s unlikely that the state could make up the gap, he said.
Another proposal discussed in Congress is per capita caps, in which the federal government pays the state per enrollee versus based on the actual cost of services. That funding formula could incentivize states to enroll healthier people instead of sick people in Medicaid to keep costs down, according to Timothy Layton, associate professor of public policy and economics at the University of Virginia, who spoke on a panel for SciLine, an editorially independent nonprofit based at the American Association for the Advancement of Science.
Work requirements
Hise argued that his goal is to move people on Medicaid back into the workforce and onto private insurance —although Medicaid is an entitlement program, meaning individuals who meet eligibility requirements are guaranteed coverage. However, most of the Medicaid expansion population works already in low-wage jobs where health insurance is not offered.
Implementing a work requirement could appease those in Congress who want to cut Medicaid, Lambeth said.
During the first Trump administration, some states imposed work requirements, but those programs were struck down by federal courts, which noted that the law that created Medicaid intended to make the program an entitlement.
But with a new Congress and in a second Trump administration, work requirements might become an easier lift to implement; federal regulators might be more willing to approve them.
What a North Carolina work requirement might look like would largely depend on what the federal regulators are willing to approve. Lambeth said North Carolina would likely create exceptions for those in school, caregiving and doing certain amounts of volunteer work.
As to worries about major Medicaid cuts, Hise said that they would require an act by Congress — a move that would be foreshadowed and give the state time to prepare.
“I don’t look at Congress right now and think they’re incredibly efficient about changing laws and passing bills,” he said. “I’m waiting on a lot of hurricane relief right now.”
Georgia made work requirements part of their Pathways to Coverage program, which launched in July 2023 as a way of extending access to Medicaid without actually expanding it. Officials expected more than 240,000 people to participate in the program, but enrollment is currently only at 7,000 participants, far short of that goal.
Meanwhile, the state spent more money on administrative costs to run the program than they did on health care expenses.
What does Medicaid look like in N.C.?
Medicaid funds the health care of more than 3 million people in North Carolina.
In eight of North Carolina’s 14 congressional districts, at least 26 percent of the population is enrolled in Medicaid, according to data from the health policy organization KFF. Children make up the largest group in each district.
The program is especially important in rural areas, Ludlam said. In Robeson, Vance and Edgecombe counties, for example, well over half of the population is enrolled in Medicaid.
Mark Holmes, director of the Cecil G. Sheps Center for Health Services Research at UNC Chapel Hill, said the program is a major source of funding for the state’s rural hospitals, many of which are struggling financially.
Before Medicaid expansion, hospitals were providing “uncompensated care,” Ludlam said. Expansion helps communities pay for the cost of health care that’s going to be delivered either way, he said. Without it, local communities would still have to absorb those costs.
“People don’t stop getting sick. People don’t stop being older or disabled,” Ludlam said.
If large cuts do happen, Ludlam said that could mean pulling back on optional services — like the waiver Sophia McConkey relies on — along with tightened eligibility and lower reimbursement rates for health care providers.
Lower reimbursement rates would likely also drive down many direct care workers’ wages, said Kristen Brannock, president of Resources for Seniors, a not-for-profit agency that coordinates services for aging and disabled Wake County residents. Decreasing wages have implications for the state’s direct care workforce shortages, she said.
Ludlam said he wouldn’t expect the N.C. General Assembly to be able to make up the difference in proposed cuts with state dollars, especially in a budget cycle with Helene recovery.
Keeping people in communities
Donna Barker, 79, lives with post-polio syndrome, a condition with symptoms such as muscle and joint weakness that can appear decades after the person contracts polio and becomes progressively worse. She uses a wheelchair and moved into a nursing home when her parents could no longer help take care of her. Soon after, she met a man there named Terry who was also in a wheelchair. The two started spending time together and married six months later.
They were able to qualify for NC Medicaid’s Community Alternatives Program for Disabled Adults program, which supported in-home caregiving services. She and Terry were able to move out of the nursing home and live together in Newton, N.C.
A home health aide helps Barker with activities like bathing and dressing five days a week. Without Medicaid, she wouldn’t be able to afford those services.
“We’ve been married 12 years, in November of this year, and we just don’t want to go back to a nursing home,” Barker said.
Older or disabled people account for about 21 percent of the traditional NC Medicaid population but 54 percent of expenditures, Ludlam said. That’s in part because they rely so heavily on the program for covering things such as doctor visits, hospital care and mental health services as well as home and community based services like in-home aides.
The program that Barker relies on is an optional service, not one required by federal Medicaid, said Brannock. These could be the first programs states eliminate if the U.S. Congress cuts Medicaid, she said.
In Wake County, over 300 adults rely on the Community Alternatives Program for Disabled Adults for supports like in-home aides and adult day care that they receive through Resources for Seniors. They also receive care management, home modifications and nutritional supplements, Brannock said. Without it, they would be in nursing homes.
The program actually saves money, because institutionalizing people is more expensive, Brannock argued, because Medicaid would have to pay for people’s care in a nursing home at a higher cost.
“It’s ‘pay me now or pay me later,’” she said. “When folks can’t maintain their independence and they end up on the Medicaid rolls at a much higher cost.”
For those who can’t afford to pay out of pocket for nursing home care but don’t qualify for Medicaid, they’d likely have to cobble together what they can through friends and family — but they would be in “really dire straits,” she said.
‘A cut to Medicaid is a cut to Medicare’
President Donald Trump has promised that the federal government won’t cut Medicare, the federal health insurance program for people over 65 and some people with disabilities.
Many of those people who qualify for Medicare also rely on Medicaid — there were almost 13 million Americans who were dually eligible for Medicare and Medicaid in 2024, according to Kata Kertesz, managing policy attorney at the Center for Medicare Advocacy, a nonprofit law organization that advocates for better access to comprehensive Medicare coverage.
Medicaid may cover wraparound services like dental, vision and hearing — which Medicare doesn’t generally cover, she said. Medicaid can also help cover the cost of premiums, coinsurance and deductibles for eligible Medicare beneficiaries who couldn’t otherwise afford it.
Medicaid is also the primary payer for nursing homes, and most nursing home residents are dually eligible for both programs, said Toby Edelman, senior policy attorney with the Center for Medicare Advocacy.
Medicare doesn’t cover much nursing home care — the program may only cover up to 100 days of care in a skilled nursing facility under certain conditions. An individual could exhaust their savings and assets until their income is low enough to qualify for Medicaid to cover their nursing home care.
In North Carolina, the annual cost for a semi-private room in a nursing home is over $100,000, which many people cannot afford out of pocket, according to a survey conducted by Genworth, a company that provides long-term care insurance.
Brannock said many older adults who are on both Medicare and Medicaid don’t realize which program pays for what, so it can be harder to make that connection.
Kertesz agreed. “There is a lot that needs to be done still in making people aware of this connection, so that people know that a cut to Medicaid really is a cut to Medicare,” she said. “These cuts would harm millions of Medicare beneficiaries.”
Brannock said it seems as though many Americans believe there’s a social safety net out there protecting older adults in need.
“The truth of the matter is that social safety net has been failing for decades now, and it’s completely overrun by demand,” she said.
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