Independence is everything to Justin Bonny. The 21-year-old lives at home with his family in Barrington and works at the Dover Housing Authority, helping out with after-school programs. He’s a drummer, and his passion is making music. What makes that possible is the in-home nursing and personal care he qualifies for through New Hampshire’s Medicaid program. Bonny has a genetic condition, an RYR1-related myopathy, that weakens every muscle in his body and can pose serious risks to his breathing.

“I refuse to, you know, be in some institution,” he said. “I need to be able to be in my own home or be in an apartment or wherever I end up living. And it’s very important to me to have that freedom and independence.”

But he’s worried that freedom and independence could be at risk.

Last month, Republicans in the U.S. House passed a budget plan that would likely require large cuts to Medicaid, the safety net health care program funded jointly by states and the federal government. That could force New Hampshire to roll back key parts of its Medicaid program, which covers more than 180,000 children, seniors, people with disabilities and low-income adults.

This comes as Republicans in Concord are also weighing changes to New Hampshire’s Medicaid program, including work requirements and new monthly premiums for some patients.

Bonny and others who rely on that health coverage Medicaid in New Hampshire say they’re following the news anxiously — and bracing for potentially life-altering changes.

The nurse he hired through Medicaid has been a lifeline. Before that, his mother had to spend nights in his room, in case he needed to turn over or had an issue with his BiPAP machine, which helps him breathe.

Once, he had to call his grandparents in the middle of the night because he couldn’t wake her up. But he’s even more worried for friends who have disabilities and live alone, without the same family support.

“This program, Medicaid, is vital to – just for basic survival,” he said.

Cuts worry patients who rely on Medicaid support for disabilities, mental health

If Congress moves forward with Medicaid cuts, the state could lose potentially hundreds of millions of dollars annually, according to an analysis by the New Hampshire Fiscal Policy Institute. That would force state lawmakers to either come up with that money elsewhere, or cut back on who or what Medicaid covers in New Hampshire.

New Hampshire’s expansion of Medicaid to low-income adults under the 2014 Affordable Care Act could also be at risk. Under state law, that program — known locally as Granite Advantage — ends automatically if federal funding for it goes down.

Democrats in the state Senate recently tried to get rid of that automatic-repeal provision by amending a different bill about Medicaid. Senate Republicans blocked that amendment, ruling it not germane to the underlying legislation.

Asked last month if she was concerned that federal cuts could threaten New Hampshire’s Medicaid expansion program, Ayotte said it was too early to speculate.

“I can’t deal in hypotheticals,” she said. “So I don’t know what’s going to happen. And we’ll address whatever happens when it happens.”

But as politicians debate the future of Medicaid, it’s leaving people like Jennifer Belmont-Earl wondering what it means for their families.

“I don’t like a lot of the rhetoric that goes along with cuts to Medicaid, because I think it assumes that people that have to use Medicaid don’t deserve it, don’t deserve health care,” she said.

The Barrington resident has two children with autism, ages 5 and 8. Medicaid has allowed them to see specialists at Boston Children’s Hospital and Dartmouth-Hitchcock Medical Center, and get regular speech and occupational therapy. She said that’s helped them learn to communicate better.

“We’ve been very lucky because Medicaid has covered a lot of the different child-led therapies that have really helped our children to become more independent,” she said.

Belmont-Earl said it would be a huge burden to pay for those services out of pocket, even with private insurance. She’s heard from families whose insurance stops paying for speech therapy at a certain age, or only covers some types of therapy.

For Karen Prive, 53, of Franklin, Medicaid opened the door to better mental health care. Before that, even though she had Medicare — a separate federal program for seniors and people with disabilities — she was paying hundreds of dollars each month to see a therapist and psychiatrist for her depression and PTSD.

“The help I was getting wasn’t enough,” she said. “I was being hospitalized a lot.”

Now, she sees a team of providers at her local mental health center. It’s made a big difference. She’s rarely hospitalized.

But Prive worries about what funding cuts would mean for nonprofit mental health centers like hers, which get most of their revenue from Medicaid.

“A lot of the providers don’t accept Medicare,” she said. “If I’m not at the community mental health care center, I’m scared that I’m going to lose my mental health care.”

Work requirements, monthly premiums

Policymakers in New Hampshire are also considering changes to Medicaid at the state level. Last week, the state Senate gave initial approval to a bill that would add work requirements to Medicaid.

Ayotte has also proposed charging some Medicaid recipients premiums as a way to lower costs for the state. (New Hampshire does not currently charge any monthly Medicaid premiums, though 17 other states have premiums or fees for children’s coverage.)

The governor’s plan would apply to households with children making at least 255% of the federal poverty level — about $68,000 for a family of three — and adults in Medicaid expansion making at or above the federal poverty level — $15,650 for a single adult.

Neither Ayotte’s office nor the state Department of Health and Human Services answered questions about how much people would pay in premiums, though federal law caps the costs at 5% of income.

State officials estimate premiums, along with an increase in pharmacy copays, would save the state about $27 million over the next two years. Ayotte has said that would make the state Medicaid program more sustainable and keep eligibility for children at the current levels, which are more generous than in most states.

“It’s meeting our financial needs in New Hampshire to maintain eligibility where we are, and to sustain the budget for essential services,” she said.

But Erin Morehouse of Nashua worries the premiums could make coverage unaffordable for her. After being laid off from her job as a public health researcher in November, she’s working part-time at Target for $17 an hour while she looks for another job.

Medicaid has allowed her to afford the medications she needs for asthma and serious allergies, she said. But if she had to pay 5% of her income each month for Medicaid, she’d probably have to go without health coverage.

“I think I’d just figure out what [medications] I could do without for a bit, or what I could stretch as long as I could,” she said.

These articles are being shared by partners in The Granite State News Collaborative. For more information visit collaborativenh.org.