At 4 days old, she underwent open heart surgery, and on the day they were packing up to bring their daughter home from the hospital, her parents learned Claire had Cri Du Chat, a rare genetic disorder in which a piece of the fifth chromosome is missing.
“We’re told that there’s not a lot of research but what we do have is pretty outdated,” said Jessica Fox, Claire’s mother. “These kids typically don’t talk, they don’t walk, they don’t feed themselves, you know, the gamut of just absolutely devastating things you can tell a parent.”
Claire was a TennCare recipient for four years until her parents’ income knocked her out of the program. Although Claire was covered under her mother’s employer-provided insurance, Fox said TennCare was necessary because the private insurance didn’t cover all of Claire’s needs, like therapy, medical equipment and surgeries.
That’s what spurred Fox to fight for the passage of the Katie Beckett waiver in Tennessee, a program designed to help children whose parents exceed the income requirements for Medicaid.
During an event last week at Niswonger Children’s Hospital, Fox and other local mothers of children with complex medical needs celebrated the passage of the Katie Beckett waiver, which is now awaiting federal approval. Tennessee is one of the last states in the country to pass a protection of this nature.
Now, Fox and other mothers in the area are processing a new development that they’re concerned would put funding for the program at risk: A proposal from Gov. Bill Lee’s office to convert the federal share of the state’s Medicaid funding to a block grant.
“We’re trying to celebrate, but at the same time we’re getting absolutely floored by the news,” Fox said.
According to the Tennessean, the governor’s proposal would change how the state funds TennCare, replacing the current federal funding model with a $7.9 billion modified block grant that would fund the program’s core population. The value of the grant would increase with inflation and on a per-capita basis as enrollment grows. Lee has said there will be no reduction in benefits under this program.
Although she’s grateful that Tennessee has approved a Katie Beckett waiver, Fox believes funding the state's Medicaid program with a block grant would be a huge step back.
“When you look at the big picture, what my concern is is that the state is going to need more money than what the federal government gives them just because of healthcare costs and growth and population expansion,” she said. “What I think is going to happen is the state is going to have to make up the difference ... and that equals cuts, and the people that are the most expensive are my daughter.”
Fox recently traveled to Knoxville for one of several public hearings the state is organizing around Tennessee to gather feedback on the proposal. Two other local mothers, Mallorie Hatcher and Michelle Gross, joined her.
Hatcher said the proposal is scary.
Her son, 5-year-old Nolan, has a microduplication on his 17th chromosome, which means he’s small for his age, has difficulty eating and suffers from epilepsy.
She said Tennessee doesn't have a good track record for providing needed medical services to its residents, which makes her distrust the state’s argument that the greater flexibility enabled by a block grant will positively affect Tennesseans.
"There are already people across our state who are hurting, who aren't insured, don't have insurance, who aren't getting the adequate care that they need," Hatcher said.
The state expects it will use Medicaid dollars to pay for both parts of the Katie Beckett program, Part A and Part B. Taking into account $27.3 million approved by state lawmakers for the program plus matching federal Medicaid funds, Tennessee will have no more than $72 million to spend on services in the program.
According to the Knoxville News-Sentinel, the state has said the block grant proposal won’t have an impact on the Katie Beckett program.
Hatcher, however, has doubts.
"They're saying it's not going to effect the Katie Beckett waiver, but when it's funded by Medicaid dollars, I don't see how that's possible," she said.
Gross, another local mother, has a daughter, 6-year-old Asher, with a rare chromosomal disorder that causes small stature as well as mobility and intellectual delays.
Pointing to specific elements of the block grant proposal, Gross said she doesn’t like the idea of the state having more autonomy over the amount, duration and scope of covered benefits, or the thought of the state moving to a closed formulary for medication.
Gross said a closed formulary, which the state says in the proposal would allow it to negotiate better rebate agreements with manufacturers, doesn’t fit Asher’s needs or the needs of many other children in the state with medical issues.
Rep. Matthew Hill, R-Jonesborough, said Friday he is committed to ensuring that the state's plan won't contain cuts in services for children with complex medical needs.
"If it adversely affects the Katie Beckett population or its negatively impacts children with those needs, then I will not support it," he said.
Proponents of a block grant, Hill said, believe the state will have additional money under the new funding model to spend on services and care thanks to tens of millions of dollars worth of savings in administrative and compliance costs from the federal government.
Hill also noted that the governor's proposal isn't final.
"I have a feeling that it will change several times," he said.
Earlier this year, according to the Tennessean, the Tennessee legislature passed a bill requiring the governor to negotiate a block grant program with the federal government, an idea that Lee advocated on the campaign trail. The Centers for Medicare & Medicaid Services still needs to review and approve the plan, which Hill said will then move on to the Tennessee General Assembly for further consideration. The proposal is now going through a period of public comment.
"There's no evidence to indicate that the governor or his administration would negotiate some kind of deal with the federal government that would harm anyone," Hill said. "I don't believe they would do that."
The Division of TennCare and the Tennessee Department of Intellectual and Developmental Disabilities said new populations, such as children covered under the Katie Beckett program, would be financed for a period of time through the state’s traditional funding model to allow the new populations to reach a stable and predictable level of operation.
“This will allow the state to gain experience in serving any new populations to better determine appropriate funding levels,” the agencies said. “Once this experience is established, the new populations could be rolled into the block grant calculations, which would increase the block grant amount due the state.”
Hill said if CMS approves the plan, he'll carefully consider its details and what its effect would be on Tennesseans.
"If it's positive, then that's great, but if it's negative, then I will not support it," he said.