Seven-year-old Franklin Fergus begins to fall asleep in the lap of Julie Govier, a registered nurse, while he receives food through a tube on Tuesday, June 27, 2017 in his Lawrence home. Franklin was born with a genetic disorder, neurofibromatosis type 1, in which tumors grow on nerve tissue. Govier spends forty hours a week with Franklin along side his mother, Jane Fergus, who is a stay-at-home mom. The Fergus family is worried that a potential repeal of the Affordable Care Act could severely affect their ability to afford proper healthcare for Franklin.

On some levels, Franklin Fergus can appear like any other toddler. He is playful, smiles and laughs, enjoys being read to and loves to be hugged.

Clearly, however, he is not like many other toddlers. In fact, he is not a toddler at all. He is 7 years old and severely disabled due to a genetic disorder known as Type 1 neurofibromatosis, more commonly known as NF1.

It’s a disease that causes nonmalignant tumors to grow on nerve tissue, including the brain, resulting in both pain and severe disfigurement of his head and body. The tumors also grow in his neck and spine, which can constrict his trachea and interfere with his ability to breathe.

Jane Fergus reads a book to Franklin on Tuesday, June 27, 2017 in their Lawrence home. Fergus says that she has repeatedly reached out to members of the Kansas congressional delegation but has received very little response regarding her urging them to vote against repeal of the ACA.

“It’s a genetic disorder he was born with,” his mother, Jane Fergus, said during a recent interview.

Despite his illness, Franklin is enrolled in school and will enter second grade at Sunset Hill Elementary School in the fall.

And because of that, Franklin and many other disabled children around the country find themselves on the fringes of a national debate over health care, and in particular the future of Medicaid and the Affordable Care Act.

Franklin’s condition is so severe that he requires around-the-clock monitoring. A professional nurse, Julie Govier, whom the family simply calls “Nurse Julie,” works full-time caring for him and accompanies him to school each day where she serves as both his nurse and a paraprofessional educator.

Jane Fergus lays Franklin down in a crib-like safety bed equipped with a foldable side rail to prevent injury.

“He requires 100 percent care on bathing, toileting, feeding, dressing — 100 percent care for everything,” Jane Fergus said.

While he’s at school, she said, Franklin receives physical therapy, occupational therapy, speech and music therapy, all of which are paid for by Medicaid. That’s on top of the special education services he receives for his learning disability.

“The school district is able to access Medicaid funds for all or much of his therapies,” she said. “Which is, I think, a piece that people don’t understand: the impact of Medicaid changes on schools, not to mention everybody else.”

Statewide, public schools in Kansas receive more than $46 million a year in Medicaid funds to provide those kinds of services to children in a school setting. The Lawrence school district alone receives more than $700,000 in Medicaid reimbursements.

Under standard Medicaid rules, children with severe disabilities like Franklin’s are entitled to receive medical care in an institutional setting such as a nursing home or state hospital.

However, Kansas and most other states operate programs known as “Home and Community Based Services” that allow a limited number of people to avoid institutions and remain in their homes by using Medicaid money to pay for non-medical services, such as the care Franklin receives at home from Govier, and the different kinds of therapy he receives at school.

Jane Fergus said that in his first year of life, the cost of Franklin’s care exceeded $3 million. To this day, he requires ongoing medical care, including monthly visits to a children’s hospital in Cincinnati where he undergoes an experimental form of chemotherapy — treatment that the Fergus family could never afford on their own.

Jane Fergus’ husband, Fred Fergus, works as a teacher at West Middle School in Lawrence. But Jane does only occasional, part-time house cleaning work while spending virtually all of her available time helping to care for Franklin.

What concerns her most about the current health care debate, she said, is that those programs, known as HCBS waivers, are optional services under Medicaid, and thus they could be the first to be cut or eliminated if there are major cuts to Medicaid, which both the House and Senate health care plans propose to do.

Special education services, on the other hand, are not optional. Public schools in the United States are required to provide those services to students in their districts under a separate law, the Individuals with Disabilities in Education Act, or IDEA.

“They’re either going to cut (Medicaid) services or they’re going to cut enrollees,” Fergus said. “They’re going to have to cut something to make it work. All of that’s going to fall back on the states to cover that shortage.”

Jane Fergus isn’t the only person who has been sounding alarm bells about the impact Medicaid cuts could have on disabled children in schools. The Kansas Association of School Boards and several health care advocacy organizations have been trying to raise awareness of it, as well.

“Our primary concern is that the Senate bill, through its restructuring of the Medicaid entitlement program, appears to go far beyond repealing and replacing ‘Obamacare’ to directly impact Kansas schools that provide special education services to students under the federal Individuals with Disabilities Education Act,” KASB wrote in a letter to Republican Sens. Pat Roberts and Jerry Moran on Wednesday.

Republican leaders in the U.S. Senate delayed a vote on their health care plan last week, but the vote could be scheduled for the upcoming week if they can round up enough support for it.

Under that plan, states would have the option of taking their federal share of Medicaid funding as a block grant or through a tightly-controlled, per-patient formula. Either way, future increases in federal Medicaid spending would be tightly limited at rates far below the general health care inflation rate.

According to the nonpartisan Congressional Budget Office, that would reduce federal Medicaid spending by an estimated $772 billion over the next 10 years, compared to what would be spent under current law.

Jamie Price, senior vice president of the Lawrence-based Community Living Opportunities, which provides services to children and adults with intellectual and developmental disabilities, said that level of cut would be devastating in Kansas.

“When you look at that level of cut, in Kansas it would be close to $1 billion in cuts to Medicaid over the next decade,” she said.

Price noted that Kansas has already converted its Medicaid program into a privatized, managed care system now known as KanCare. Under that system, private insurance companies are paid a fixed, per-patient rate to manage the health care needs of more than 400,000 people enrolled in the program.

“So Kansas has already done a good job of bending the cost curve,” Price said. “If it goes to a block grant, in a state like Kansas, we would be hit doubly hard.”

Last week, after GOP leaders delayed the vote on their health care plan, Sen. Jerry Moran announced that he would not have supported it. But he said he does support repealing Obamacare and replacing it with a different kind of federal health care plan.

Sen. Pat Roberts, however, has said he would vote in favor of the plan. While he concedes that it has flaws, he said he believes the Affordable Care Act will “collapse” at any time, even though CBO analysts say that’s not true, and he believes Congress needs to act quickly to replace it with a more economically stable health care system.