Sarah Husband received a phone call in June that left her incredulous.
The number of hours that Medicaid would pay for her four-year-old son Gideon’s care had been cut from 45 to 21.
As a licensed nursing assistant, Husband tends to her son’s needs in their Belmont home — through the Home Care for Children With Severe Disabilities Program, also known as the Katie Beckett Program. The reduction to just three hours of covered time per day delivered a drastic hit to Gideon’s well-being and the family’s income.
“He has so many needs,” she said. “How is this not understood? Like, he just has this huge medical record and so much documented from his providers that his conditions are getting worse and that his care is getting more complex and that there’s more things that we’re doing at home that a normal parent doesn’t have to do.”
The program is designed to help kids remain with their families rather than be moved into an institution. Private duty nurses, home health aides and licensed nursing assistants provide the necessary care.
Gideon needs a gastronomy tube to deliver nutrients and medication to his body. He’s susceptible to pneumonia, skin breakdowns, respiratory illness and seizures — and his doctors still don’t know the umbrella cause for his medical troubles, his mom said.
Her family wasn’t the only one to have care hours cut. In fact, around 160 families across the Granite State find themselves in a similar boat, she said.
Husband began connecting with other families on Facebook, seeking others with similar stories and frustrations. Those efforts coalesced into a new advocacy group called NH Families for Home Nursing, comprised of nine different families across the state.
When the families respectively appealed the care hour reductions, they did not receive an adequate explanation, she said.
“We were given really vague answers, like this type of care doesn’t qualify, or this is not medically necessary, that kind of thing,” Husband said.
The cuts were administered by the state’s three Medicaid managed care organizations: AmeriHealth Caritas New Hampshire, NH Healthy Families and WellSense Health Plan.
Since his care hours were cut by more than half in June and his family was placed 70th on a list for appeals, Gideon has had two tube site infections, a double ear infection, a respiratory illness and full-blown pneumonia.
“So the care that he requires is truly 24-hour care that’s above and beyond anything a normal four-year-old would need,” his mom said.
Last week, the advocacy group of parents sent out nearly two dozen letters to state leadership, including Gov. Kelly Ayotte, members of the state’s Executive Council, and the Department of Health and Human Services to help return the hours cut by the managed care organizations.
They seem to be gaining some traction.
“The department has been aware of these concerns and had already begun taking immediate action directing MCOs to restore services,” DHHS spokesman Jake Leon said Tuesday. “Building on improvements already made, the department will institute additional safeguards to strengthen oversight of MCO authorization of services for the most vulnerable children in our program.”
NH Families for Home Nursing is asking for a moratorium on further reductions, a full policy review and a restoration of the hours that were initially cut “to ensure that all future authorization decisions are driven by individualized clinical assessment rather than arbitrary caps or budget targets,” the letter sent to the governor states.
The letter details how one family in the coalition saw their son hospitalized six times in the three months since his authorized care hours were reduced from 60 to 42.
“A skilled nurse in the home is not a luxury — it is the early warning system that keeps these children out of the hospital,” the parents wrote to Ayotte and other leaders. “When those hours are cut, that safety net disappears. The hospitalizations that follow are not coincidences. They are predictable, preventable consequences of a policy that has eliminated the very monitoring these children require to remain safe at home.”
The first half year of Gideon’s life was characterized by over a dozen hospital stays and “astronomical” medical bills, Husband said. Someone told her family about the Katie Beckett program, and it changed the realm of possibility for them. Given the acute “complexity and unpredictability” of his medical needs, it became too difficult for Husband to keep working and tend to her son.
She underwent training as a primary caregiver so a portion of her time can be compensated by the Medicaid-funded program.
Gideon was originally covered for 60 hours but, in January, that number dropped to 45 before sinking again to 21 in June.
“It’s necessary care to keep our children out of the hospital, out of the ICU, and living at home,” Husband said.
Gideon is on fifteen different prescription medications, and Medicaid helps cover what commercial insurance does not. It also covers incontinence supplies, specialized creams, and the feeding tube equipment, she said.
“So it just gives us this peace of mind because without that, we would be in massive, massive debt,” she said.
Even so, the reduction in care hours doesn’t mean that Gideon needs less care. In fact, his mom said his needs have only increased. And the costs haven’t gone down either.
“We’re scrambling to try to figure out what things we can cut from our budget,” said Husband. “How can we still pay our mortgage? How can we do all the things that are necessary for our children?”
She feels “angry and frustrated” at the situation facing her family and knows she’s not alone.
Fueled by a shared sense of advocacy, NH Families for Home Nursing provides parents with a community they would have never otherwise had, she said.
“It’s been this really great feeling of we’re not alone anymore, that we have discovered other families who experience who are experiencing the same things, and we can bounce ideas off each other, but also just know we’re not alone because it is a lonely thing to experience,” said Husband.
