But Senate Republicans' health-care bill could radically affect the Medicaid coverage on which Aidan and several million children with special medical needs depend. It would exempt some young beneficiaries from changes that would turn Medicaid from an open-ended entitlement for poor Americans into a program most likely bound by per-person spending caps. The highly restrictive exclusion would apply to only a minority of children.
Many others with often complex conditions — such as cystic fibrosis, autism and Down syndrome — would be vulnerable to whatever cuts their states make in the face of funding that by 2026 would be 26 percent lower than under the Affordable Care Act.
"It's just a fraction of kids . . . who would qualify for the carve-out," said Janis Guerney, public policy co-director at Family Voices, an advocacy organization that has been campaigning against the GOP legislation. "The caps are going to put states under so much financial pressure that they are going to do away with the things they don't have to cover."
Those could include services Medicaid pays for, from doctors and specialists to nurses in schools and at home, from prescription drugs to occupational, speech and physical therapy.
Children living in poverty represent the biggest group at risk — but not the only one. Medicaid also covers about 400,000 young Americans up to age 18 who are from working- and middle-class families. Like Aidan, they qualify because their medical problems are so extensive that only with special support can they get care at home.
"Absent those supports paid for by Medicaid, the only option many families will have is institutionalization," said Meg Comeau, a researcher at the Boston University School of Public Health's Catalyst Center, which helps states improve insurance for children with special needs. "You'll see kids going into pediatric nursing homes, kids not being able to be discharged from hospitals."
Of the estimated 5 million to 6 million children with special needs who are enrolled in Medicaid, 1.2 million would meet the Senate bill's "blind or disabled" definition based on the strict criteria for federal Supplemental Security Income (SSI) eligibility. They must come from impoverished families who can prove they are blind or have "marked and severe functional limitations" that are fatal or will last continuously for at least a year. Under the bill, the federal government would continue to pay for a portion of their medical bills without setting any financial ceiling.
That would not be the case for the rest of the children. As many as 4 million qualify for Medicaid because their families have low incomes, and their medical conditions are not tracked separately. Starting in 2021 as proposed in the Senate GOP plan, the federal government would give states the same amount of Medicaid funding for these children as they would for all other children — even though the health costs for a child with a disability probably would be much higher.
"The potential consequences could be devastating," said Sara Bachman, another researcher at the Catalyst Center. "States on their own are quite variable on the ability to support the services kids need." The federal participation in the Medicaid program is an essential underpinning."
A Republican Senate aide said Orrin G. Hatch (R-Utah), who chairs the Senate Finance Committee, and several other GOP lawmakers wanted to exempt all children with disabilities from the per capita spending limits. But bill drafters ran into a problem: the lack of information, including cost specifics, about Medicaid's varied population of children with special needs. That precluded them from crafting a more expansive definition.
"We were trying to get as many of them, if not all of them, exempted from the cap," said the aide, who was authorized to speak only on the condition of anonymity. But "the only good definition and the only good numbers we had, were for SSI."
The bill would require states to begin reporting details on children with special needs, in anticipation of Congress expanding the exclusion in the future. "Hopefully in a couple of years, when we have a better idea of who they are, we can get them in there," the aide said.
Until then, the harshest repercussions would hit those such as Aidan. Some families have private health insurance through work. But even the best policies rarely pay for as much as Medicaid does.
Christy Judd's 8-year-old son, Ethan, has a congenital neuromuscular disease and needs a ventilator to breathe at night. Every week he gets physical therapy to improve his balance and mobility. In his small town of Inwood, W.Va., Medicaid picks up the hefty copays for both that equipment and care, and during the school year it also pays for the nurses and aides who are in Ethan's classes. He could not be there safely without them.
If not for Medicaid, "his health care would exceed what we make in a year despite the fact that we have very high-quality health-care insurance," said Judd, a high school history teacher. "He requires eyeballs on him 24-7."
Medicaid also is critical in extending the limits of the Long family's private insurance in Montana. At Aidan's school, it covers his physical, occupational and speech therapies, plus the nurses or aides who watch him to make sure a seizure doesn't cause him to fall and strike his head. The Senate plan could jeopardize funding for such school-based services nationwide, probably forcing superintendents to choose between reductions to special-education services or general programs.
"We're really grateful for the local support our school district has shown, but they're kind of stuck like sandwich meat between the rights of the kids and the capacities of the local taxpayers," Ben Long said.
His wife, Karen Nichols, put her photography career on hold to care for Aidan. Yet the family depends on the Medicaid-paid nurses who come to their home four or five times a week. Without that support, Ben Long said he would have to leave the communications nonprofit organization where he works to help Karen with all the medical challenges. "It's too big a job," he said.
On good days, their blue-eyed boy is active, kicking a soccer ball and fishing. Then come the bad days, when the seizures hit and do not stop. The costs for emergencies are huge: $70,000 to get Aidan via an air ambulance to a children's hospital, where the room alone costs $10,000 a night, according to Long.
Lawmakers are scheduled to return to Washington on Monday with GOP leadership planning a hard push for the Senate measure's passage, which is far from certain. Aidan's father has been trying to rally advisers of Montana's governor to raise concerns, and he has repeatedly sought to reach Sen. Steve Daines (R-Mont.). Ben Long said that after he called, wrote and tweeted the senator, Daines responded with a form letter that did not address any of his points.
"You meet these parents of other kids with these severe disabilities," Long said. "These parents are fighting to keep their families together, and they're fighting for their kids' lives."
Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.