Claire, whose family lives in Gray, has a rare genetic syndrome called Cri Du Chat, which requires continuous care and therapy, but due to her family’s income level, she lost her TennCare coverage and is no longer eligible.
Jessica and Sean Fox are both full-time working parents with employer-based health insurance, but that coverage has not been enough to cover all of Claire’s needs.
Tennessee is the only state without a program, commonly known as a Katie Beckett waiver, that, regardless of income, provides Medicaid coverage to children with disabilities who require at-home care.
TennCare’s Employment and Community First CHOICES does cover children with intellectual and other developmental disabilities regardless of income, but only if the child is eligible to receive care in a nursing home.
Jessica said she tried applying for the CHOICES program twice, completed two in-home interviews but was still denied due to “sustained family living arrangements.”
When Claire was born, the Foxes were encouraged to apply for TennCare and were actually accepted at first.
“It was even retroactive, going back to Claire’s birth date. It was a Godsend. It picked up the thousands of dollars left behind in co-pays from my private insurance,” Jessica said.
“TennCare continued to be vital to our family’s financial security, when Claire was 4 months old and had to undergo more surgery. Due to the syndrome, she had to have a permanent feeding tube placed in her stomach, called a ‘G tube.’ She also had a procedure to keep her from aspirating her feedings back into her lungs.”
Before Claire turned 2 years old, the Foxes received a packet saying they had to renew their TennCare coverage.
“We reapplied, and were notified her TennCare would be terminated because we were ‘over the maximum income allowance,’” Jessica said.
While Jessica’s insurance pays 80 percent of Claire’s medical needs, the family still pays 20 percent of the costs out-of-pocket, which adds up to hundreds of dollars per month.
“I have been told by many people along the way how ‘lucky’ we are to have the insurance we do,” Jessica said.
“While I do feel fortunate about that, I also say that it is not enough for Claire. It works well for my husband, me, and my healthy kids, but it fails Claire, coming up short. Currently, Claire sees 19 healthcare providers, and each of those visits come with an out-of-pocket copay.”
Between January and June, the Foxes paid $936.47 for feeding tube supplies, $120 for specialists and $1,110 in therapy co-pays. Since May 31, the family has accumulated $2,040 in denied claims for therapy visits.
Jessica’s employer-based insurance also limits Claire to just 50 total therapy visits per year, and considering Claire requires three therapy visits a week, the Foxes had to discontinue her therapy in May once Claire reached her maximum.
“She gets speech therapy, which is both for her swallowing and her learning to speak. She also gets occupational therapy and physical therapy,” Jessica said.
“The doctor recommends she does each of those therapies once a week, and that comes from her developmental pediatrician at Vanderbilt. So we’re actually acting against medical advice because we can’t afford it.”
Because the Foxes are married and both have full-time jobs — Jessica is a nurse and Sean teaches at a local university — their household income is exceeds the threshold to be eligible for TennCare, which is 250 percent of the federal poverty level.
“It's devastating. I take it personal. I feel like I'm failing her, as her mother. We have to do better,” Jessica said. “The main message that I have is: No matter where you lie politically, this is an issue of making a moral and ethical decision. Sean and I do everything right. We're working, Tennessee taxpaying citizens. We're married and because we're married ... that actually counts against us.”
Jessica said Claire’s diagnosis qualified her as being permanently disabled, both physically and intellectually under the Social Security Administration.
“Her diagnosis is one of compassionate allowance. However, we quickly learned that despite her diagnosis, she was not eligible for any assistance. Sean and I were at a disadvantage because we were working professionals. Even the fact that our car was paid for counted against us,” Jessica said.
The Foxes are far from the only family dealing with this situation.
FOX 17 News in Nashville has aired several stories about 10-month-old Adelaide Kauffmann, 3-year-old Dylan Waibl and 2-year-old Alan Rose, whose families have all lost their TennCare coverage due to their household incomes being too high.
“Claire’s story is one of hundreds in our state. I cannot believe that Tennessee does not have the Katie Beckett waiver, or something similar,” Jessica said.
“Anyone would be hard pressed to find a more loving, harder working family than ours. We give 1,000 percent every day to our kids. We are productive, honest Tennesseans, and what is happening to Claire and other children like her is immoral. Please use her story to advocate for change.”
In an effort to to do that, Sean recently wrote a letter to Gov. Bill Haslam explaining his family’s situation. Jessica has also contacted her state legislators, Rep. Micah Van Huss and Sen. Rusty Crowe, to request they support the program.
At a recent town hall, Van Huss was asked by Sean about his support for Medicaid expansion, and more specifically, the Katie Beckett waiver.
“We’re looking at the (Katie Beckett waiver) legislation to see if there is something we can do for your case. I’m not opposed to that for the rare genetic diseases,” Van Huss said.