In February, attorneys from TennCare and the Tennessee Justice Center sat on opposite sides of an assembly room in the state capitol building. They faced a joint committee of House and Senate members who would decide whether the state’s provider of the federal Medicaid program could change its own rules.
For months, the state agency has worked to draft new rules governing its ‘good cause’ process, which allows enrollees to appeal loss of their coverage past the typical appeal deadline of 40 days if they can prove they had good cause to miss it.
Before votes were cast by the Government Operations Committee, an unemployed father walked to the front of the room to share his perspective. He was given three minutes to speak.
His name is Keith Cottle and he lives in Crossville. He told the committee about his 13-year-old daughter, Journey. She had been diagnosed with Down Syndrome at birth, and had recently battled Leukemia. He told them that the insurance provided by TennCare was vital for her survival.
“Imagine me going to a hospital with her cancer needs to find out that her insurance has been terminated,” Cottle told the committee. “So I’m the one parent in this state that is here to say, ‘no.’”
For Keith, this hearing was personal. In 2023, Journey’s coverage was unexpectedly terminated by TennCare. He said the agency told him it hadn’t received his faxes with information they needed to recertify her coverage. But it had sent termination notices to the wrong address, and the Cottles hadn’t received them.
He missed the deadline to appeal, and the family lost their coverage.
After his testimony, the committee voted to change the rules. As Cottle walked back to his seat in the gallery, Rep. Justin Lafferty, a Republican of Knoxville, explained the committee’s decision:
“We’re not perfect,” Lafferty said. “We’re not living in a perfect world, and sometimes, sadly, bad things happen to good people.”
Journey Cottle is one of roughly 600,000 TennCare enrollees who were terminated from the program in 2023. They lost their coverage amid a wave of redeterminations following the COVID-19 pandemic, which had placed a years-long pause on the process.
In Tennessee, 40% of TennCare recipients were cut from the program.
But in many cases, nothing had changed about a person’s income or other qualifications. Mail was delivered to the wrong address, causing people to miss notices asking them to update their information with TennCare. In other cases, the state’s software glitched and mislabeled people’s eligibility.
Those issues are the basis of a federal class-action lawsuit filed by the non-profit Tennessee Justice Center on the behalf of dozens of TennCare enrollees who say they faced inordinate hurdles in getting their healthcare access restored.
TennCare declined to be interviewed for this story, citing the pending litigation. In a statement, a spokesperson said the rule change is meant to make it easier for people to appeal the loss of their coverage.
While TennCare’s rule change doesn’t negate the accusations of the lawsuit, TJC co-founder and staff attorney Gordon Bonnyman says it will make it more challenging for people to appeal the loss of their coverage in the future.
“It’s important that this process work,” said Gordon Bonnyman, co-founder and staff attorney for the TJC. “It literally can be a matter of life or death.”
Journey’s story
Journey Cottle was born with disabilities. She was premature, and kept in neonatal intensive care for weeks. Doctors diagnosed her with Down Syndrome soon after. Her father, Keith, was a welder for Norfolk Southern. Her mother is a homemaker. They felt lucky to have good health insurance through the railroad.
That’s because Journey needs almost constant care.
“She can’t walk long distances, her feet are angled inward,” Keith said. “She does not feed herself, so all her meals got to be fed to her. And, on top of that, she has sensory issues. Lots of sensory issues.”
A few years after Journey was born, Keith was diagnosed with a mental disability and had to quit his job at the railroad. Suddenly, the family was in dire need of health insurance.
“And who can afford today’s healthcare? No one,” Keith said. “I don’t care how much money you make, it’s astronomically high.”
The Cottles applied for TennCare, the state’s Medicaid program. It provides federally subsidized healthcare to mostly low-income pregnant women, parents or caretakers of a minor child, children, and individuals who are elderly or have a disability.
To qualify, people have to meet certain income limits and prove they have a medical need. Nearly 1.4 million Tennesseans are enrolled in the program, according to the most recent data. The vast majority of them are under 18, such as Journey Cottle.
“We applied and were approved easily,” Keith said. “Very easy process.”
Keith says Journey’s coverage was renewed year after year with no problem. And it became all the more vital to her care when she was diagnosed with Leukemia in 2020. Constant trips to specialists in Nashville and Knoxville, chemotherapy treatments, and medicines racked up a massive bill.
“The entire time it was covered by TennCare insurance,” Keith said. “Never a problem ever. And you can imagine the millions of dollars it would have cost me.”
In 2023, TennCare asked for additional information to recertify Journey’s coverage. Keith was told to fax proof of disability, proof of income and even his car registration to the agency’s Nashville office.
Despite all of that, one day Journey stopped receiving diaper deliveries. Keith made a call to find out why. They told him Journey’s coverage had been “terminated,” and that he would need to reapply for the program. That could take up to 45 days.
“I’m nervous now, knowing that she has no insurance,” Keith said. “And a child in her situation cannot be without insurance.”
‘the unwinding’
During the COVID-19 pandemic, the federal government stopped reviewing people’s eligibility for Medicaid to make sure they were still able to get healthcare during a global pandemic.
In 2023, when that pause was lifted by the Biden administration, more than a million Tennesseans were asked to prove they were still eligible for TennCare.
That volume of recertifications overwhelmed state workers at TennCare. Enrollees say mistakes and technical glitches by the agency caused around thousands of people to improperly lose their coverage.
Enrollees are entitled to a fair appeals process through federal law as long as they file it within 40 days. In Tennessee, there’s an extra hurdle: good cause. People who receive TennCare insurance can appeal their eligibility decision past that deadline, as long as they can prove they had ‘good cause’ to miss it.
Gordon Bonnyman says in the past, almost any reason could be cited as a good cause.
“Lots of things can happen,” Bonnyman said. “You could be sick, your child could be sick … and for years the state has had a rule that said if you fail to meet that deadline because of circumstances beyond your control and despite your best efforts, then that’s good cause.”
But during the unwinding, Bonnyman says that changed.
“TennCare didn’t change the rule but they just stopped applying it,” he said. “And they started deciding that instead of any circumstance beyond your control … you had to say that there was a death in the family, or you had to show that you were in the hospital or that your house had burned down.”
That made it harder for people to file a late appeal, and in some cases forced them to pay for medical expenses out-of-pocket. The Cottle family considers themselves lucky. They went eight days without insurance.
“What they want to do is say sorry, you’re terminated,” Keith said. “We have people running a program that want to choose who they want to cover or not, and I don’t agree with that.”
That’s the basis of the lawsuit the TJC filed on behalf of the Cottle family and dozens-of-others accusing TennCare of not following its own rules.
A federal judge ultimately sided with the TJC and its clients last year and sent the case to mediation with TennCare. Bonnyman says they couldn’t come to an out-of-court agreement.
Instead, TennCare petitioned the state government to alter its good cause rule so that it’s no longer in the wrong. This year, the general assembly approved that change, effectively allowing TennCare’s previously illegal behavior.
This story is part of our Healthcare Hollow series, made possible, in part, by the NIHCM Foundation.
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