NC mother worries Medicaid requirements could threaten daughter’s care

Haley Gray’s daughter needs around-the-clock care. Making sure she continues to receive it requires another kind of work: paperwork.

Gray’s 28-year-old daughter has a traumatic brain injury and severe mental illness and lives in a group home near Raleigh. Gray said Medicaid, Medicare and other state-supported services help provide care her family cannot safely manage at home.

“We have to recertify for the group home. We have to recertify for the day program. We have to recertify for Medicaid. We have to recertify for every single component of care she receives,” Gray said. 

Across those services, Gray said, the family completes a recertification roughly every other month, involving 50 to 80 pages of paperwork.

“This is already a part-time job for me, which also then materially impacts my ability to work because I’m spending time every single week managing not just her care, but managing paperwork, and then having to chase down and make sure that everything is being done correctly all the time is never-ending,” she said. 

As North Carolina prepares for new Medicaid rules, Gray said she worries about families keeping up, documenting exemptions, and finding providers willing to serve them.

Beginning Jan. 1, 2027, most Medicaid enrollees will face eligibility reviews every six months instead of annually. Certain adults will also have to meet work and community engagement and reporting requirements. Qualifying options include 80 hours of approved activities in a month, at least half-time schooling, or qualifying monthly income of $580. 

Not everyone on Medicaid faces the volume of paperwork that Gray described. Her daughter receives several services, each with its own review process.

Recertification of Medicaid eligibility is required in order for a beneficiary to keep their coverage. For some services, beneficiaries must receive documentation of medical necessity from each provider and have them request renewed authorization before an existing approval expires. 

For families, those overlapping processes can mean coordinating with multiple providers while tracking notices and deadlines.

Asked what happens when her family has problems completing paperwork, Gray said, “Then we can be at risk of losing services.”

Gray previously owned a home care agency and said she knows how difficult it can be for providers to cover their own costs. She said she worries whether providers can afford to keep caring for people on Medicaid. If reimbursement payments do not cover their overhead, she fears some could stop offering care. 

“Providers are being compensated less than they were before to do more work, which can make them go from being profitable to not profitable, which means that we’re losing providers,” said Gray. 

Gray’s daughter also receives Medicare benefits and thus is exempted from the Medicaid work requirement. Other exemptions cover certain people with disabilities, serious medical needs and caregiving responsibilities.

Gray says she worries about people whose ability to work changes from month to month and how they will establish that they qualify for an exemption.

“So how do you decide that somebody’s sick enough to not need to meet that requirement?” Gray said. “Could my daughter work five hours a week? Yes, maybe. Could she do 80 hours one month? Maybe, but she definitely couldn’t do it two months in a row. And that’s one of the things that you run into also with this work requirement is that it requires a consistent number of hours. Well, I know a lot of people who have a variety of disabilities who maybe could do it one month, and they’d be enthusiastic about it. But then the next month, they would maybe do 20 because they burned out the previous month.”

Even an exemption may require paperwork. NC Medicaid advises recipients to gather medical records or other proof and contact their local Department of Social Services to establish whether the work rule applies to them.

The Trump administration says the requirements will encourage employment and independence, while technology improvements will help reduce administrative burdens.

Gray wants lawmakers to consider whether those efforts will make getting care easier for families like hers.

“I really feel like yes, the system needs to be looked at closely, but adding more paperwork is not necessarily the best answer,” she said.