This story was reported in partnership with the USC Annenberg Center for Health Journalism’s 2026 Impact Fund for Reporting on Equity in Health and Health Care and the Center’s Engagement Initiative.
At almost two years old, Charlotte Guptill could win an award for the world’s fastest butt-scoocher.
Wearing a mint green onesie patterned with pink ice cream cones, she paused her movement to glance at the large television on one side of her Allenstown living room, her attention affixed to a scene from “Tangled.” As she turned, her wispy blonde curls revealed a small, circular medical patch adhering to her pale temple, holding in place the oxygen tube threaded into her nose and connected to a small black backpack containing a mechanical ventilation tank.
Her dad, Adryan, crouched and scooped her into his arms. “This!” she shrieked, pointing at the television.
Charlotte only recently started babbling words. She was born with pulmonary hypoplasia, or underdeveloped lungs, among other ailments that primarily affect her breathing, heart, immune system and intestines. Due to her delayed development, she can’t yet walk on her own.
The pair sat together on the rug, mesmerized by the movie. For a moment, they could forget the shelves of medical supplies — feeding tubes, syringes, orange bottles of medication, and oxygen tanks — the stringent care schedule and weekly doctors’ appointments. In this moment, they were simply father and daughter.
Adryan isn’t just Charlotte’s dad. As a Licensed Nursing Assistant (LNA), he’s often her primary caregiver, especially at night. The role is new for him.
Sudden cuts to Charlotte’s allotment of nursing hours this summer threw the family’s delicate balance into flux. In May, the family’s 60 hours of paid home nursing dropped to 48 with no advance notice from her insurer, NH Healthy Families. The nurse who had cared for Charlotte looked elsewhere for work.
“All of a sudden she was gone, and there was no soft exit,” her mom, Hillary, said. “It was just gone.”
When the family’s nurse departed, Hillary and Adryan “had to pivot,” she said. Her husband lost his job at the state Department of Corrections.
“Work couldn’t handle all the time he needed off,” Hillary said.
With their income cut in half and lacking critical care for Charlotte, the couple shifted plans.
The Guptills aren’t alone.
Charlotte is one of 160 children in the Granite State whose medical complexities make her eligible for Home Care for Children With Severe Disabilities (HC-CSD), also known as the Katie Beckett option. This form of Medicaid health insurance not only covers her many appointments and medical supplies but also allows her family to hire nurses and caregivers who administer care at their home. It also permits trained parents like Adryan to become paid caregivers.
The Katie Beckett program — named after the girl who inspired Ronald Reagan to endorse this form of care for families — provides a critical alternative, allowing children to remain home instead of moving into an institution.
Fifteen families of medically complex kids had their home care hours — either for nursing or LNA time, which fill different needs — slashed at the start of the summer by their Medicaid insurers, called managed care organizations. They received little explanation, leaving them not only reeling but, in many cases, scrambling financially.
An investigation by the Concord Monitor in partnership with USC Annenberg Center for Health Journalism found that:
- Federal policy shifts: The cuts were triggered by Medicaid restrictions in the One Big Beautiful Bill Act (H.R. 1) and an end to pandemic-era recertifications, leading insurers to implement cost controls.
- No notice: Insurers eliminated hours without explanations, prompting state intervention to mandate 30-day advance notice and review.
- Financial peril: A loss in care hours directly cuts family earnings, in some cases by up to half, while increasing out-of-pocket medical costs.
- Threatened institutionalization: Without adequate home nursing or LNA hours, families face becoming unable to care for medically complex children safely at home.
- Temporary relief: Reinstated hours were only a short-term fix, leaving families fearing renewed cuts to their care and income as temporary extensions lapse.
‘A band-aid’
For parents of medically fragile children, holding down a full-time job can feel close to impossible. They juggle their kids’ feeding tubes, ventilators, tracheostomy tubes, medication schedules, school, slews of paperwork and prescriptions, not to mention an eternal back-and-forth with Medicaid to contest claims.
These endless hurdles lead many parents to train as caregivers and receive Katie Beckett compensation.
The state of New Hampshire stepped in this summer to temporarily reinstate hours for these families through November, mandating that the three Medicaid Managed Care Organizations (MCOs) — WellSense Health Plan, AmeriHealth Caritas and NH Healthy Families — provide written notice of future authorization changes, as well as clear them with the state Department of Health and Human Services.
That intervention, families fear, may merely be a band-aid.
Home health coverage is a lifeline for the Guptills.
“It ensures that Charlotte is able to stay home longer and have less hospitalizations because she’s getting nursing-level care,” said Hillary, who works full-time in healthcare administration and part-time as Charlotte’s LNA when Adryan is off the clock.
Now that November has rolled around and temporary reinstatements are beginning to expire, parents are hoping their kids’ hours remain funded while bracing to receive news that could once again plunge households into both medical and financial uncertainty.
Charlotte’s approved nursing was just extended until May. But others are still waiting to find out what will happen.
Denise Gray, whose 13-year-old daughter Brooklynn has cystic fibrosis, spelled it out in no uncertain terms.
“A reduction in hours becomes a reduction in pay, which becomes less money to be able to buy what she needs,” said Denise, who provides LNA care for her teen.
‘Less stable’
With the One Big Beautiful Bill Act, or H.R. 1, taking effect, New Hampshire’s three MCOs found themselves in a sticky situation. Medicaid is funded jointly by the state and federal governments. However, shrinking federal contributions would reduce the insurers’ revenue streams with newer and more stringent eligibility requirements.
Patients and health care organizations found themselves caught in the crossfire.
“I think we’re all worried — locally, regionally, nationally — about the impact of H.R.1 and what that might mean for budgets, for state Medicaid programs, and then specifically, access and coverage of health services for kids with complexity, especially home community-based services,” said Dr. Jay Berry, who heads the Complex Care Unit at Boston Children’s Hospital, where the majority of Katie Beckett families in New Hampshire seek care.
The Complex Care Unit treats about 5,000 children, he said, with more than a quarter of coming from out of state.
The cuts families are experiencing in the Granite State mirror those happening elsewhere, he said.
“We have families that are calling us from multiple states, worried and wondering what they would do if their private-duty nursing were cut entirely or reduced to a degree where it would affect them so much,” he said.
The biggest underlying worry, he said, is that families would no longer be equipped to keep their children at home.
“It’s just devastating for families to go through,” Berry said.
In New Hampshire, full-scale Medicaid recertifications were paused during the pandemic, so the reapproval process for coverage became semi-automatic. With an end to that grace period, parents say they feel like Medicaid insurers are exhibiting more scrutiny and denying care that was once covered.
Multiple experts from different healthcare organizations were unable to explain the exact reason for the cuts, and officials with the Department of Health and Human Services did not respond to the Monitor’s request for an interview, instead providing a statement.
Regardless, the effects have rippled across the state.
When these “sudden changes” occurred, staffing and expected work hours for caregivers and their agencies were disrupted from Nashua to the North Country, according to Keliane Totten, CEO of the Home Care, Hospice & Palliative Care Alliance of New Hampshire
“It created, I would say, a less stable income for a short period of time, at least, which was fortunate due to the intervention getting some of the staffing back in place,” Totten added.
When Charlotte Guptill lost her nurse in May, a month passed before the Guptill’s nursing agency, Team Select, was able to find someone to work part-time, even with the hours reinstated. Only in September were they able to hire a second person — and the coverage extends only as long as Charlotte has her approved hours.
The Granite State, like much of the country, has a shortage of caregivers and low pay for the ones it does have. This, in large part, is why so many families on Home Care for Children With Severe Disabilities pursue parent caregiving over hiring outside help.
Medicaid hasn’t raised rates for home care wages since 2023, Totten said. And before that, it had been a decade since an adjustment took place.
Each nursing agency has a slightly different going rate, but on the whole, LNAs earn around $20 to $22 per hour, said Sarah Husband, a founder of the advocacy group NH Families for Home Nursing.
Berry worries, like many of the families do, that the home care hour cuts spell out something more drastic for the future of medically complex children.
“Just thinking again down the line, if their services were cut, I mean, these are real families at risk of losing the children out of their homes,” he said. “I can’t tell you how devastating it is for them to even consider something like that happening, and so worried that it’s out of their control that they couldn’t stop it.”
‘Not so alone’
As attendees streamed into the Executive Council meeting at Pelham Town Hall in mid-October, a group of parents pushing children in wheelchairs and strollers followed close behind, a melange of nerves and excitement emanating from the group, which slid into seats in the front row of the auditorium.
The meeting began as usual, with the audience standing for the Pledge of Allegiance and a prayer. But when Governor Kelly Ayotte took the microphone to begin issuing commendations, the parents sat up straighter, listening intently over their children’s chatter. She invited them to join her on stage.
“Despite the significant demands of caring for their own children, these dedicated mothers continue to advocate for their families and for other families, ensuring that the needs and voices of medically complex children are heard,” Ayotte told the crowd. The moms beamed with pride.
Ayotte, who has previously spoken out on their behalf, offered a commendation for “their outstanding advocacy, unwavering dedication, and meaningful efforts to improve care and support for families across the Granite State.”
Throughout the reinstatement process, this handful of parents collaborated closely with the state’s medical director and the director of Medicaid, as well as the executive branch.
“When Managed Care Organizations cut hours without adequate notice to families or the State, we stepped in to stop it,” Ayotte shared in a statement with the Monitor. “We will continue working to ensure these families’ needs are met and hold Managed Care Organizations accountable for supporting them.”
The Executive Council meeting marked the first time that these “medical moms” had met each other in person.
Sarah Husband, whose four-year-old son Gideon has a rare neurodegenerative disorder affecting his cognitive functioning, movement and swallowing, learned from a phone call with her insurer in June that the boy’s 45 hours of LNA time were cut to 21 — along with it, half her income as his caregiver. The Belmont mother sent a call into what felt like the void of Facebook.
There, she learned that what happened to Gideon didn’t occur in a vacuum.
Other parents shared similar stories. With Sarah’s initiative, they banded together to form NH Families for Home Nursing.
“I found that the advocacy has given me my spark back,” Sarah said. “Like there was this thing that was missing because I didn’t really have anything that was mine, because I gave up my career to be a caregiver.”
They found a champion in Executive Councilor Janet Stevens, who just lost her bid to retain her seat. Her loss creates even greater uncertainty for families about the future.
“They will not get away with this,” Stevens had said of the managed care organizations.
Those organizations must now give families 30-day notice of any changes to their authorizations.
The Monitor reached out to each of the three insurance organizations responsible for covering this care. WellSense Health Plan and NH Healthy Families did not reply to the Monitor’s request, and AmeriHealth Caritas declined an interview.
“We continue to monitor the cases for all 160 children receiving home health services through this program so that vulnerable children receive the care they need through their MCO,” DHHS spokesperson Jake Leon shared in a statement with the Monitor.
After Laconia mom, Natalia Wylie, was told the paid nursing hours she provides her daughter were erased to zero, she found out she wasn’t alone.
“I saw all these disability rights comments, all these comments about hours being cut on Facebook,” she said. “I’m like, oh my god, I’m not the only person. Like this is happening to a lot more families than just us.”
Sofia has spinal muscular atrophy and was previously approved for 40 hours of nursing each week. Paid or unpaid, Natalia still needs to suction Sofia to help her breathe, mash her food so it’s digestible, help her go to the bathroom, administer her medication and get her dressed in the morning
Sofia’s condition is so volatile that Natalia sleeps next to her every night, unwilling to miss a moment when her daughter struggles to breathe. Natalia said she feels “sick to her stomach” thinking about the looming uncertainty of what might happen next.
“They had no right to do what they did,” she said. “I mean, you’re on Katie Beckett for a reason. Katie Beckett is for medically complex patients, children, and to really not even go into their medical history and just decide, oh, no, we don’t want to approve them anymore, like they didn’t have the authority to do that.”
‘By a thread’
Whenever Brooklynn Gray runs across the lacrosse field, stick in hand, teammates cheering each other on, no one watching from the outside can see evidence of the 40 medical procedures she’s undergone and the 22 medications she takes each day.
“Sports is my favorite thing to do,” said the 13-year-old, whose awareness of her own mortality casts a shadow over much of her life. Brooklynn knows that if she works her body too hard during practice or a game, she could weaken her lungs more than her cystic fibrosis already has. She faces a 50% chance of needing a lung transplant in her lifetime, her mom said.
“I don’t get to do much of the stuff normal teens do, and I just want to be a regular teenager,” she said.
Brooklynn has been on Katie Beckett Medicaid since she was in elementary school, with her mom, Denise, serving as her LNA for the past four years. Brooklynn’s authorized hours, which had initially sat at 50, fluctuated several times in the past year before dipping to 22.5 at the start of the summer. They rose to 28 in September, but Denise said she is still waiting for the full 50 to resume.
Denise said some administrative errors between her nursing agency and insurer have led to the delay, despite reinstatements in place months ago for other families. And with those reinstatements running out, she fears that her 50 hours may not come at all, despite having been told they’re on their way.
Their household is hanging on “by a thread,” Denise said. When her income was cut in half, it imperiled any sense of stability she and Brooklynn felt.
“I am literally pennies from losing my car, losing our house,” said Denise, who purchased her 2025 Hyundai Palisade three months before the first cuts hit her family. She just went through a divorce with Brooklynn’s dad and has needed to borrow money from him to stay afloat. Many of the families the Monitor interviewed for this project mentioned the acute strains that having a medically complex child can place on a marriage.
The number of hours WellSense, her Medicaid insurer, authorizes for LNA care doesn’t change Brooklynn’s needs. Each day, her mom has to administer a cecostomy flush through a tube in her stomach to cleanse her intestines of any stool — cystic fibrosis has led to a slew of gastrointestinal difficulties. She also must receive a regular nebulizer treatment of medication misted into her airways to prevent the buildup of mucus.
Denise supplements her LNA income with hours driving for Lakes Region Student Transport, which has provided ample flexibility for doctor’s appointments and other medical needs that arise. Now, however, after several months without enough money to make ends meet, she said she is “at the point where I have no choice.”
“She needs the medical care more than we need the money,” Denise said. “And we shouldn’t have to pick between medical care and supporting my family.”
In October, she started interviewing for full-time positions, with the giant question mark over Brooklynn’s hours looming large.
“I’m really struggling,” she said.
Six months before the cuts happened, Denise took out a remodel loan for her home, a small, earth-toned bungalow with a screened-in porch facing their quiet, un-striped road in Laconia. An American flag hangs by the door.
Having grown up there, moved away and returned, Denise has inhabited this house for a total of 38 years. It’s the only home Brooklynn has ever known.
Brooklynn saw the impacts quite tangibly when her care hours were cut: “We can’t buy certain foods and snacks,” she said, pushing a strand of long, brown hair from her face. “Like sometimes we can’t buy snacks.”
Katie Beckett, Denise said, allows her to earn income while supporting Brooklynn. Otherwise she wouldn’t be able to work.
Brooklynn has averaged one or two multi-week hospital stays each year of her life, her mom said, be it for surgery or unforeseen complications that arise. She spent 15 days at Boston Children’s in August for a sinus procedure — her fourth one to date. The progressive disease affecting her lungs mostly manifests in her sinuses, necessitating such interventions.
“It affects how I live my life. I have to miss things I love ‘cause I have to go to the hospital. And not making lacrosse teams cause [I’m] in [the] hospital,” Brooklynn said.
Hospital stays further the Grays’ financial stress, since Denise cannot collect income as Brooklynn’s LNA during those periods. Her compensated care is limited to New Hampshire.
“I had no income for two weeks, but I still had to feed myself during that time and provide care for the child that was still at home,” she said.
Looking ahead
Even with the traction parents have gained for their children’s care, the length of reinstatements and the responsiveness of insurers have been very “case-dependent,” since not everyone has the same care organization, said Husband of NH Families for Home Nursing. Multiple families are worried they may need to take out mortgages — or second ones — if more hours are cut.
“It seems like NH Healthy Families pushed people out into 2027. People with WellSense are seeing November,” Husband said.
They’re fighting battles on new fronts too, with medical supply challenges and children missing school because of nursing shortages.
To that effect, Hillary Guptill wants more systems in place to protect families.
“I think, at a state level, they need to start researching when hours get cut. Like, having a second party research the reasoning and make sure that it makes sense before hours get cut,” she said.
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This is the first story in Fragile Futures, a series of stories on children with medical complexities in the Granite State.
If you have experiences with home care for medically complex children or young adults that you would like to share, please contact Rachel Wachman at rwachman@cmonitor.com or 603-369-3304. If you would like to write a letter to the editor, please email your thoughts to letters@cmonitor.com.
This story was reported thanks to support from the USC Annenberg Center for Health Journalism’s 2026 Impact Fund for Reporting on Equity in Health and Health Care. Rachel Wachman also participated in the Center’s Engagement Initiative.
