Nonetheless, five working families from Northeast Tennessee on a mission to get a Katie Beckett waiver adopted in Tennessee traveled 286 miles to the state Capitol to personally explain their financial hardships to lawmakers during Disability Day on the Hill, an event organized by the Tennessee Disability Coalition.
For families like the Foxes, Ledfords, Hatchers, McInturffs and Grosses, private insurance has failed them, as it does not adequately cover the enormous medical expenses incurred to appropriately care for their children.
When the families turned to TennCare for assistance, they were turned away because their income exceeded 250 percent of the federal poverty level, or $51,050 for a household of three. From there, some of the families, like the Ledfords and Foxes, were advised to apply for the state’s Employment and Community First CHOICES program, which is primarily directed at helping the disabled achieve employment.
However, that program, known as the Essential Family Supports benefit group, has reached its capacity and no longer accepts applicants, according to Family Voices of Tennessee Director Kara Adams, who helped organize the Disability Day on the Hill event.
“So there is no way for these families to receive care, especially if they’re not eligible for TennCare. Most of all the families we’ve talked to have private insurance, but their private insurance doesn’t cover what needs to be covered,” Adams said. “There are no other means for these families to receive help.”
Many private insurers also put limits on therapy visits. For example, Mallorie Hatcher’s 5-year-old son Nolan has a rare chromosome disorder and requires weekly therapies. But before her insurance covers any therapies or medical expenses, the Hatchers have to meet a $5,000 out-of-pocket deductible each calendar year.
“So January is always kind of hard. We just finance it or whatever we need to do. But, the way therapy works, by the time you meet the deductible, then (the insurance company) is saying you can’t have any more therapies,” Hatcher, who is a full-time occupational therapist, said. “For a child with developmental delays needing early intervention, it’s just not sufficient.”
One extreme solution, as the Ledfords, Grosses and Foxes have all been advised, is to quit their jobs and get divorced or just move out of state. Tennessee is the only the state in the country that has not adopted a federal provision, created by President Ronald Reagan in 1982, often called a Katie Beckett waiver or TEFRA program.
The Katie Beckett waiver, named after a woman who spent her childhood living in a hospital, would allow children with severe disabilities to receive at-home care and be eligible for the state’s Medicaid program, regardless of family income.
The prospect of getting this program installed in Tennessee is what motivated these five families to travel, with children in tow, to Nashville to personally implore lawmakers to get this passed.
But it wasn’t easy. Since most of these families work, most had to take time off work and arrange babysitters for their other children, not to mention transporting the necessary medical equipment.
“I’m not going to lie, it’s very challenging. It was very challenging taking Claire down there with her needs, and Sean and I took off work to do this. And, you know, we have two more kids, one we had to leave behind to make arrangements for grandparents to take care of him and get him to school. Then we have our 2-year-old,” Jessica Fox said.
“It’s was definitely a challenge for us. But very much a labor of love, as well, to bring this message on home. Them seeing it in person, face-to-face. ... You could see people start to tear up. So, it’s very real.”
Jenn and Jeff Ledford even said their 1-year-old son Noah, who has a rare genetic condition called CDKL5, had seizures during some of the meetings with lawmakers.
“I felt like they were a lot more sympathetic to the cause, I guess, where we took Noah. They saw Noah. They see what we deal with. He had seizures while we were in the meetings with lawmakers. And (they) know that it’s a daily battle we have with him,” Jenn said.
Hearing the Ledfords’ story face-to-face seemed to convince state Rep. Gary Hicks, R-Rogersville, Jenn said.
“After speaking with him, he was just like, ‘I think I’m on board with this at this point.’ He’s not a cosponsor, but he was like, ‘Thanks for coming in, thanks for telling your story, thanks for bringing your son in so that we actually see what we’re fighting for.’”
As it currently stands, state Rep. Sam Whitson, whose granddaughter has Down syndrome, has filed a caption bill, HB0498, with the intention of it becoming some type of Katie Beckett waiver program. Northeast Tennessee state Sens. Rusty Crowe and Jon Lundberg, as well as state Reps. Matthew Hill, Timothy Hill, Micah Van Huss and David Hawk have signed on as cosponsors. House Speaker Glen Casada also has signed on.
Following their lobbying efforts, most of the families were cautiously optimistic about the odds of the bill passing, but as with most things, it will come down to cost. Rough estimates coming out of Nashville have the Katie Beckett waiver program costing the state $8 million to cover 1,000 families, but that figure is still being determined. Once final language of the bill is determined and the fiscal note attached, lawmakers will have a better grasp on the funding.
Another moving part is whether Gov. Bill Lee will include funding for the program in his first budget proposal.
To learn more about efforts to adopt a Katie Beckett waiver in Tennessee, visit www.tndisability.org.