NEW ORLEANS, La. — The diagnoses for Hailey Bowen’s 12-year-old son came one after another.

First, it was severe ADHD. Then autism. Oppositional defiant disorder, marked by persistent defiance and hostility, came next, then evolved into disruptive mood dysregulation disorder, a condition with severe outbursts. Now, obsessive-compulsive disorder is another possible issue.

Despite it all, he recently transitioned from a school for students with disabilities to general education, helped with a Medicaid-funded one-on-one aide. He’s earning good grades and learning to socialize, said Bowen, a landscape architect in New Orleans. She imagines a day when he won’t need the aide, and can use the coping skills he’s learning at school to get a job as an adult.

But with potential federal cuts to Medicaid looming, Bowen and her husband, a teacher, fear their son’s progress could unravel if he’s no longer eligible and can’t continue to have an aide. She credits the one-on-one attention as the reason he’s able to join mainstream education.

“We didn’t think this was possible,” she said. “And the only reason it is possible is because they are with him 35 hours a week.”

Finding $880 billion

Uncertainty is growing among Louisiana’s many families who rely on Medicaid for health insurance. The federal government is considering how to cut hundreds of billions of dollars from the budget after the House passed a resolution ushered through by Speaker Mike Johnson, a Louisiana Republican.

While the resolution, aimed at extending tax cuts, does not explicitly mention Medicaid, it instructs the House Energy and Commerce Committee — which oversees the program — to cut $880 billion in spending over the next decade.

In interviews last week, Johnson said that cutting large programs within Medicaid was not on the table, and that he was looking at finding efficiencies in every program, not cutting benefits for people who rightly deserve them.”

Health policy experts say it would be difficult to cut that much without dipping into Medicaid significantly. The majority of funding that the committee oversees is related to Medicaid and Medicare. Even if the committee eliminates all nonhealth care spending, it would still fall more than $600 billion short.

“In order to find those savings, they’re going to have to look everywhere,” said Courtney Foster, senior policy adviser at Invest in Louisiana, a policy organization that advocates for low- and moderate-income families.

‘Incredibly difficult’

Medicaid covers 1 in 3 Louisiana residents, the second-highest rate in the U.S. More than half of the state’s children receive health insurance through the program, and nearly two-thirds of births are covered by it. It also funds services for people with disabilities and supplements Medicare for low-income seniors.

Families in Louisiana who have come to rely on the coverage said they worry that if Congress makes changes to the program, a lifeline could be cut.

Alessia Filetti, a self-employed art conservator, qualified for Medicaid when the state raised income requirements in 2016. She got treatment for a foot injury recently that was making it hard to care for her daughter, who is nonverbal with autism. With weekly therapy, her 7-year-old is learning how to ask to use the bathroom and hold a fork. Without Medicaid, she fears she’d struggle to get treatment for herself and wouldn’t be able to pay for her daughter’s medical care.

“If we get dropped, our life is going to become incredibly, incredibly difficult,” she said.

Claire Tibbets, executive director at the Autism Society of Greater New Orleans, and her husband, who works in shipping and receiving at the Ernest N. Morial Convention Center, pay over $500 per month for private insurance. But their 7-year-old daughter is covered through LaCHIP, Louisiana’s Medicaid program for children; adding her to their private plan would be financially impossible, she said.

Medicaid also covered their daughter’s monthlong NICU stay when she was born prematurely. “I don’t even know how we would have paid for that, honestly,” she said.

Madeleine Brisco, a nonprofit fundraiser, spent months securing Medicaid coverage for her 9-year-old daughter under TEFRA, a program that helps children with disabilities whose parents earn too much for Medicaid but face overwhelming medical costs. Her daughter has epilepsy and autism, requiring frequent therapy, neurological imaging, and emergency care for seizures.

Before TEFRA, Brisco’s family paid all of their $7,500 deductible within months of the start of each year, leaving little room to save for other expenses. Calling it a “financial gamechanger,” she fears TEFRA could be among the first programs cut.

Christina Martin, an advocacy leader for the Louisiana Developmental Disability Council’s Advocacy Network, relies on Medicaid for herself, her daughter, who has a rare chromosome disorder and autism, and her father, a 56-year-old liver transplant patient.

“It’s not just a number on a spreadsheet,” Martin said. “It’s our kids’ lifeline.”

Who is covered, and who is at risk?

In 2016, Louisiana joined what was at the time 36 states in expanding Medicaid coverage to all adults earning up to 138% of the federal poverty level as part of the Affordable Care Act.

In 2025, that means a single adult earning $21,597 or less per year qualifies for this government-funded health care.

It is not clear yet who would lose coverage under potential cuts. One proposal from House Republicans would reduce the federal match for the Medicaid expansion, which 40 states have enacted. That would leave Louisiana with a $14 billion budget shortfall over the next decade and coverage for 782,000 people at risk, according to an analysis by Kaiser Family Foundation, an independent policy research organization.

The Louisiana Department of Health did not respond to questions about the potential cuts.

Capping the amount of money Louisiana receives by transitioning the program to block grants has also been discussed by House Republicans. If that happens, “there could be much wider impacts of coverage changes amongst different group,” said Kevin Callison, an associate professor in the Department of Health Policy and Management at Tulane University.

President Donald Trump has said Medicaid won’t be cut, but Democrats, including U.S. Rep. Cleo Fields, D-La., argue cutting $880 billion without touching the program is nearly impossible.

“Obviously, everybody knows that Medicaid is going to be that target,” said Fields.

At recent town halls across Louisiana, Fields said Medicaid was a top concern, given the state’s high enrollment rate.

A loss of insurance doesn’t change health care needs, said Alice Riener, chief executive officer of CrescentCare, a Federally Qualified Health Center with locations in New Orleans and Houma. Patients will still need care, they will just wait to get it or access emergency rooms more often. An increase in uncompensated care could devastate small hospitals, she said.

“Rural hospitals will close,” Riener said. “Clinics will be deeply impacted.”

For families like Hailey Bowen’s, it’s enough to consider leaving the state, even though they don’t want to.

“We’re talking about Pennsylvania, because that state has a very good track record,” Bowen said, referring to educational opportunities for children like her son. “Private schools won’t take him, so that’s not even an option.”

She calls her congressperson three times a week but feels ignored.

“I feel like they see my name on the computer, they pull up my name and it just doesn’t matter,” Bowen said.

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