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Piney Flats family pushing for Katie Beckett waiver to support 1-year-old's medical needs

Zach Vance • Updated Dec 4, 2018 at 11:02 PM

Get a divorce, move out of Tennessee or quit their jobs.

Those were the drastic suggestions offered to Jeff and Jennifer Ledford to allow their 1-year-old son, Noah, to become eligible for supplemental insurance coverage through the state’s Division of TennCare.

Noah was born with a rare genetic condition, called CDKL5, that requires around-the-clock care at home.

Despite their best efforts, the Ledfords have repeatedly been denied that coverage through the Division of TennCare’s CHOICES and 1915(c) HCBS Waiver programs, administered by the Department of Intellectual and Developmental Disabilities, or DIDD.

“I started calling and pressing the people at DIDD. ‘Why? Why? Why?’ And I never could get a clear answer,” Jeff said. “The only answer they would give me is: ‘(Noah) had enough support to sustain’ and ‘We’ve not exhausted all our resources.’”

Jeff works as a financial adviser and Jennifer is an optometrist. Their employer-based insurance covers the majority of Noah’s hospital stays and doctor bills, but it does not cover the cost of hiring a full-time, private-duty skilled nurse to care for Noah during the day while the Ledfords work.

“That’s what he needs, and we can’t buy insurance that covers that because nobody will sell it to us and it’s not included in the employer insurance. Only Medicaid covers that. That’s why states all over the country have Katie Beckett waivers, except Tennessee,” Jeff said.

According to TennCare, employing a private-duty nurse for 24 hours a day, seven days a week, could cost more than $300,000 a year to care for one person.

Additionally, the Ledfords’ insurance does not cover any adaptive equipment costs. Jennifer said a special adaptive seating device could have cost the family as much as $6,000 brand new, but luckily, they were given one from a generous family whose child had outgrown it. Unfortunately, the adaptive seating device for Noah will likely be just the first of many devices he will need as he gets older and grows. And with those needs will come tremendous costs.

The Ledfords were initially under the impression that the DIDD program would not take household income into account. When they were interviewed in their homes, Jeff remembers the interviewer saying, “Our decision is not based on family income, it’s based on the condition.”

“That’s what perplexed us so much when we kept getting denied. If it’s not based on income, how could you find a more severe condition than what he has? ... So why does he keep getting denied? And to this day, I’ve never got a clear answer why,” Jeff said.

The Ledfords’ frustration with TennCare eventually motivated them to contact local legislators.

“(State Rep. Timothy Hill) and I have been very insistent with TennCare that they need to find a way to help these families,” state Sen. Rusty Crowe said.

“So far, they have not come through for us, and we do know that (TennCare Director) Dr. (Wendy) Long is leaving and there will be someone new taking over the reins of TennCare. This will be one of those things that we discuss with the new governor and the new TennCare director because it needs to be done. It really does.”

When asked for comment, Laine Arnold, press secretary for Governor-elect Bill Lee, said the incoming administration “looks forward to working with the legislature to help Tennessee’s children and families get the services they need.”

Expected House Speaker Rep. Glen Casada has already said he wants to reinstate oversight committees, including the oversight committee for TennCare. If that occurs, Crowe said that committee could be instrumental in getting a Katie Beckett waiver, or similar program, implemented during the 111th General Assembly.

“These are the kinds of things we’d take to that committee and say, ‘Look, this is urgent. Let’s get this done.’ Then the oversight committee would go to TennCare and push like crazy, like we are by ourselves, but the whole committee would push,” Crowe said.

Hill said getting a Katie Beckett waiver implemented would be one of his priorities entering the next legislative session.

“It appears the Katie Beckett waiver, which is very, very common in other states, in the short-term is the best way to go because that is something that has been tried through so many different states. It seems to be working well there,” Hill said.

“My job, on behalf of the Ledfords and other constituents in my district, is to find the best path. And it appears the Katie Beckett waiver would be just that.”

TennCare spokesperson Sarah Tanksley said TennCare has not determined the number of families who might benefit from a program like the Katie Beckett waiver, nor has the state analyzed what the potential cost might be.

“There are a number of ways in which the state could extend eligibility to children from families with higher incomes. Any of these options would require the appropriation of additional state funding by the Tennessee legislature, as well as approval from the federal government,” Tanksley said.

If Tennessee doesn’t implement a Katie Beckett waiver or similar program soon, Jeff said his family’s only option would be to sell their house and move out of state.

“I went through years and years of school to do what I do. My husband has worked hard to do what he does. For us to look at one of us quitting a profession we worked hard for, divorcing — which is not morally right to us and won’t happen — to have to move and be away from family and friends and the support system that we have here, it just baffles me,” Jennifer said.

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