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.”