JOHNSON CITY, Tenn. (WJHL) — Claire Fox beamed as a swing at Rotary Park sent her toward the blue sky overhead.

The 7-year-old was surrounded by love. Her mother Jessica, still in scrubs from her nursing job, was there. So was Claire’s caretaker and even her speech language pathologist.

Claire may have wanted to use more than a smile to tell them all how she was feeling. She may have needed to express something more mundane without a cry or a facial expression.

The tools are there to help the first-grader do that (a genetic condition limits her speech), but Jessica Fox and a growing chorus of parents, advocates and lawmakers say Tennessee’s program designed to help kids like Claire is off to a very rocky start. That has included a months-long inability to procure a recommended speech-generating device for Claire due to a series of denials and delays.

Claire Fox and her mother Jessica play at Johnson City’s Rotary Park Boundless Playground April 1.

“As parents it’s hard when you see your kid suffering,” Jessica Fox said. “We have major problems. We need a fix on this and it’s really not acceptable is the bottom line. We need some accountability. We need answers.”

Fox said Claire would be expressing herself better by now but for what she describes as an incompetent and frustrating rollout of Tennessee’s Katie Beckett waiver. When Tennessee became the 50th and final state to implement the waiver about two years ago, working families like the Foxes with incomes too high to qualify for TennCare were elated.

“We feel like we wouldn’t even have this program if it weren’t for us sharing our stories about our kids and the lack of care,” Fox said of her work helping get the enabling legislation passed. “It didn’t even exist for kids like ours.”

The waiver provides coverage and services at two different levels for children with disabilities, including some whose disabilities are severe enough that they could qualify to live away from family in an institution. The aim is to meet those needs without families having to choose either that option or give up jobs so their incomes qualify them for TennCare.

That initial elation has withered, replaced by stress and frustration, said Fox and Mallorie Hatcher, another Johnson Citian whose son Nolan, 8, is covered by the program. They cite denials of medically needed devices and medications along with bureaucratic hurdles beyond what is reasonable — including in Fox’s case months spent fighting for approval to get Claire in the “Part A” program that provides the highest level of services and reimbursement.

Frustrations mount quickly after program begins

Fox served on a state advisory committee as the program was honed prior to implementation. When it came time to get Claire all her services, though, she said the program’s issues quickly became apparent.

“I helped formulate the policy and I felt from the get-go that I was being encouraged not to apply for Part A,” Fox said. She had served on an advisory committee after Gov. Bill Lee signed the waiver law in 2019.

“I had to say, ‘yes, I want my daughter to have everything she is eligible to receive and I know she meets the requirements for Type A,'” Fox said.

Claire Fox’s favorite swing at the Boundless Playground.

Despite her speech therapist’s recommendation of a speech-generating device TennCare had denied approval of the tool that both her family and the Washington County Schools say she needs.

“With a communication device it would help her a lot to not only talk about what she wants or what she likes but also comment on every little day-to-day things and situations,” said Hannah Brown, a speech language pathologist at Talkback Pediatric Therapy who works with Claire.

Brown said she’s seen TennCare approve similar devices for several children over the past couple years following trial use, letters of medical necessity and the typical hoops one must jump through. As Claire played in the background, Brown choked up talking about the denials for a little girl she called “full of love and life and energy.

“We have these kids come in and we see them every week and they’re working with the device and they’re doing great with it and then they go home and they don’t have it, so that’s hard.”

Everyone from Brown and a pediatrician to specialists at the Washington County School System and people from the Tennessee Department of Education has advocated for Claire Fox’s speech device. Jessica Fox said they ordered the device and TennCare then denied it.

Fox said she’s also got evidence of state workers claiming in records that she had been contacted by them over issues, while she said they haven’t. She only learned Claire had been approved for Part A when her Part B caseworker called her and let her know she’d no longer be working with Claire.

Fox and Mallorie Hatcher said there have been positives. Claire has a caretaker for after school and times like last week’s spring break, and some services have been covered.

But Nolan Hatcher has been without a crucial medication recently. Even when he was on the less expansive Part B initially, Hatcher said she ran into frustrations with reimbursement requests.

“This would be stuff like his feeding supplies and medicine and things like that,” she said. “They would want like an extra physician note written for stuff that was pretty straightforward. It was a little more work than it should have been for pretty self-explanatory stuff.”

Hatcher said she’s still seeking reimbursement on some expenses from Nolan’s time on Part B of the waiver, which ended in September 2021. Now she’s fighting to get coverage for the medication, without which Nolan has experienced some setbacks.

“I try to be very thankful about everything that we do get, but it shouldn’t be this hard and so much stress on families to get the things they need for their kids,” Hatcher said. “And it’s not just us. There’s a bunch of other families that are experiencing the same issues across the board.”

Carol Westlake said she can attest to that. The Executive Director of the Tennessee Disability Coalition (TDC) helped families advocate as Tennessee became the last state to enable the waiver program named after a girl from Iowa.

One example of what Westlake called “a lot of red tape” is that families have to apply for TennCare, knowing they’ll be denied, and then follow up and apply for the waiver program. She said some bureaucracy is necessary in a federal program and that families were very understanding early on. 

“Now that we’re a year and a half in and families have been enrolled in the program but haven’t seen any services yet, or families have been enrolled in the program and they’re paying premiums and they haven’t seen any services yet,” Westlake said.

Instead of TDC focusing on other issues, the “rocky rollout” has the advocacy group back working with those families to push for improvements. She said the issues aren’t universal, but of the 1,300 families enrolled, those with children needing the Type A services have probably seen the most frustration.

“I think that the state is failing many parents in operationalizing this program,” she said. “I think it’s a good program. I think it can do good things. I think that the powers that be in the state haven’t always listened to families and really sought ways to make it more workable.” 

Back to being a squeaky wheel

Jessica Fox said Claire’s inability to get the speech device five months after the process to access it began is what pushed her over the edge and back into going public about her frustration.

“I have been accepting that this is a new program, that there are things that have to be worked out,” Fox said. “I’ve tried to remain positive and look at all the good things that it’s brought to my family.”

The continued difficulty navigating the program and the recent experience with Claire’s speech device makes keeping a positive attitude difficult, she said.

The Fox family: Dad Sean with Claire, son Carter and sister Charli (center), and Jessica. (Courtesy Jessica Fox)

“It’s supposed to make our lives better, and it has been making it a lot more difficult lately. It has not been family-friendly and I really feel like it’s not what the legislators had in mind for our families when they formed the waiver. They got to meet our kids and know our day-to-day lives are hard.”

State Rep. David Hawk (R-Greeneville) is one of those legislators and he said the post-waiver frustration isn’t new. Parents and advocates approached him a year ago and said, “look, we’re having problems navigating the new Katie Beckett waiver.”

Hawk said he and other legislators didn’t just sit on that information but asked people at TennCare and DIDD to work at simplifying the system.

“I had hoped that we were at a place where that simplification had occurred, but unfortunately after hearing from you and others I don’t think it is fixed.”

Hawk said the continued lack of progress means the legislature has to “get the attention” of the two departments once again and let them know what Fox, Hatcher and the TDC have been saying for months: parents continue to have difficulty navigating the system and getting approval for needed and eligible services.

Roughly two years in, Hawk said TennCare is serving far fewer than the 3,000 families the legislature approved funding for. “We’re just in the hundreds in terms of families that are actually receiving care, so we definitely need to do a better job, and families like the Fox family their issues need to be addressed, and I’m going to work on this,” he said.

That said, bringing legislative pressure to bear on a program whose staff report to the governor is a challenge. With the legislature in session for another month or so, Hawk said he plans to get the attention of people within the administration and share the concerns that have been brought to him and others by numerous families.

He said he hopes legislators can get enough attention over the next four weeks to see some quick improvements. The fact that a program with templates Tennessee can follow from 49 states continues struggling to operate as intended isn’t where Hawk wanted things to be.

“This was discussed a year ago and we sit here now still talking about the same problem, so that is very frustrating as a legislator. I’m sure it’s very frustrating to those families.”

A speech-generating device like the one Claire Fox needs.

When families don’t get into the program or services are limited, the state is actually leaving federal money on the table, Hawk said. As a Tenncare (Medicaid) program, Katie Beckett gets two federal dollars for every state dollar.

“It’s giving these families the ability to be able to work as opposed to being full-time caregivers. It’s allowing the children to get into an educational setting and being with their peers and having a fulfilling lifestyle that is the same as everyone.

“The families were so excited about these opportunities, and to deal with these frustrations week after week after week is unfair to them.”

In a statement to WJHL sister station WATE in Knoxville, TennCare said it wished “every family’s experience with the program met every one of their expectations and we strive to make that happen.”

The agency said it and DIDD have worked closely together to expedite the process for families in the program. It said it had only had six medical appeals for a total of five children since the program’s launch.

“We remain committed to continuing to listen to our stakeholders and make additional adjustments that will improve the member experience,” the statement read.

On her way home from Rotary Park Friday afternoon Jessica Fox contacted News Channel 11. A rep for one of TennCare’s managed care companies had called her after the interview and told her Claire’s speech device had been approved.

Fox said she was happy for Claire and her own family but remains committed to holding the state accountable until what she sees as the program’s major issues are resolved.

“I’m not the only parent to receive denial letters. I hear stories daily of parents kind of at their wits’ end that are just really begging for help.”