About 128K kids have been purged from state insurance programs for poor families.

Many families didn't know their kids lost insurance until they got to the doctor.

Like so many others, Heather Hantz found out the hard way that her son's health insurance had vanished.

Hantz, 44, a Tennessee single mom whose 6-year-old son, Harrison, has autism, moved into a new house last summer, then called the state government to provide her new address. It was critical, she knew, that she update her son's file at TennCare, a massive Medicaid program that provided him with essential health care coverage.

On the phone, Hantz got devastating news: Harrison didn’t have TennCare anymore.

“I was horrified,” she said, “because I knew exactly what was going to happen next.”

Over the next month, Hantz’s fears came true. Without TennCare, she could no longer afford to send Harrison to therapy that helped with his speech, dexterity and self-esteem. Soon he began having meltdowns and sobbing fits at school, then officials recommended transferring him across town to a campus with more robust special education services. After years of progress, Harrison has regressed.

“It was catastrophic,” Hantz said. “Imagine being this little boy who can’t process what’s going on. … It was like his foundation and his routine were ripped out from under his feet.”

Harrison is one of at least 128,000 children who, over a two-year span, were purged from TennCare or CoverKids, two Tennessee government health insurance programs for low-income families. It appears tens of thousands of these children have not acquired private insurance, so they likely joined the swelling ranks of the uninsured residents of Tennessee, already one of the unhealthiest states in the nation.

State officials said the sharp cuts are a consequence of TennCare and CoverKids pruning their enrollment, after years of allowing the programs to swell. Programs dropped these children because they are no longer qualified or because their families did not respond to mandatory renewal forms that were mailed over the past three years. TennCare officials confirmed "many members" were disenrolled because they did not respond to renewal forms, but couldn't estimate how many were cut purely because of lack of paperwork.

That uncertainty, sources say, is causing havoc for poor families across the state. Some medical professionals say children have inexplicably lost coverage without their parents' knowledge, and social justice advocates allege the widespread disenrollment was largely caused by pervasive procedural errors inside TennCare.

Agency officials passionately deny that claim.

“There were humans processing these renewals. And humans do make mistakes,” said Kim Hagan, TennCare director of member services. “But is it systemic? Absolutely not.”

This story focuses on the two-year period between December 2016 and January 2019, during which 1 in every 8 children in TennCare was disenrolled. However, the current loss of insurance could actually be much higher because TennCare initially released data showing an additional 52,000 children were removed from the program in February — the biggest drop in any month on record.

After being questioned by The Tennessean, TennCare officials took this recent data offline and insisted it was incorrect, saying there had been no historic cuts in February. New enrollment data for February has not yet been made public.

GET THE DATA:The Tennessean published all the raw data compiled for this story. See it for yourself.

Families unaware insurance has lapsed

It was about one year ago when two worried grandparents rushed into Sewanee Pediatrics, a small doctor's office an hour outside of Chattanooga. Their grandkids, ages 3 and 5, had pneumonia, a lung infection most dangerous to children.

In the waiting room of the clinic, the grandparents discovered they had a second emergency too. The kids' TennCare was gone.

“They learned they didn’t have insurance the moment they brought them in when they were really sick,” said Dr. Amy Evans, who recalled the family during an interview with The Tennessean. “The grandmother was outside on the phone trying to figure out insurance when she should have been able to be inside with the children.”

Scenes like this are a result of the disenrollments from TennCare, which some say has not done enough to inform families across the state their insurance has lapsed. Evans, a longtime pediatrician with a majority of patients on TennCare, said at least once a week a family discovers it has lost coverage while in her clinic, then must make a tough decision whether to pay for care out of pocket.

The impact was even more dramatic at another Middle Tennessee pediatric clinic that largely serves children of immigrants who are in the country illegally, nearly all of whom are reliant on TennCare. A medical professional at that clinic said it is common for a dozen families to find out their TennCare coverage has been canceled during a single day.

“What we are seeing now is massive numbers of people being dropped off the rolls with no notification, and they don’t find out until they have a reason to use their insurance,” the medical professional said. “They are forced to determine what the health of their child is worth to them and if they can delay whatever attention they need until they get — if they can get — their insurance back.”

The Tennessean is not disclosing the clinic or source as to not identify their patients who are in the country illegally.

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TennCare: 12% of kids disenrolled

TennCare, which is Tennessee’s state-run Medicaid program, uses billions in federal funding to pay for health care for some of the state’s poorest and most vulnerable residents. Eligibility is notoriously complicated, but TennCare is most generous with children, paying for care of kids from families that live close to or below the poverty line. Families that make too much money for TennCare can still enroll in CoverKids, a smaller program for children who live below 250% of the poverty line.

For this story, The Tennessean analyzed monthly enrollment data from five years of TennCare and two years of CoverKids, all of which is publicly available online. The analysis shows children began to leave TennCare at the end of 2016 as the government ramped up a renewal process that identifies and cuts ineligible families.

Since then, TennCare has lost 12% of all children enrolled.

Kelly Gunderson, a TennCare spokeswoman, said in an email statement that the size of the program has followed expectations. Enrollment swelled in 2014 and 2015 because officials suspended the renewal process so they could instead prioritize implementation of the Affordable Care Act, known widely as ObamaCare.

Renewals re-started in earnest in 2016. Gunderson said the government launched an advocacy campaign encouraging families to ensure TennCare had their correct addresses, then mailed out renewal forms that track income and other criteria to determine eligibility.

If the families were no longer eligible — or they didn't respond — they were cut.

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Biggest drops in Nashville, Memphis, Cheatham County

Enrollment data shows the biggest decreases have occurred in Tennessee’s two largest cities, Nashville and Memphis, where about 14,000 and 22,000 have lost coverage, respectively. Proportionately, the single largest drop occurred in Cheatham County, where nearly 1 in every 5 kids in TennCare was booted from the program.

The drop in the CoverKids program is even more dramatic — 39% of CoverKids recipients have been disenrolled since January 2018. Most of that decrease occurred in June when 18,000 children left the program in one month.

Unsurprisingly, in the same years that TennCare and CoverKids cut so many children, the number of uninsured kids in the state sharply increased, according to recent studies from Georgetown University and the University of Tennessee. These two studies measured uninsured children very differently but agreed on the conclusion that the problem is worsening.

Georgetown University found that Tennessee’s uninsured children rose from 58,000 in 2016 to 71,000 in 2017 — one of the largest spikes in the nation — and that the increase was even larger for children under 6.

The University of Tennessee recorded fewer uninsured children overall but an even steeper rise — from 22,238 in 2017 to 34,458 in 2018.

“I think that’s just the tip of the iceberg,” said Michele Johnson, executive director of the Tennessee Justice Center, a social justice group that is among the loudest critics of TennCare's operations. “This is the first time in 10 years that the number of uninsured children are going the wrong direction, and that just from the start of disenrollment.”

Johnson said the Justice Center believes many disenrollments occur because families struggle with TennCare’s renewal applications, which have amounted to as many as 47 pages in prior years. The center also received numerous complaints from families that say they never received the renewal packet in the mail — likely because it was mailed to the wrong address — then were cut from TennCare without their knowledge.

Hagan, TennCare's director of member services, said cases like these are rare and can be resolved with the program's appeals process.

“If there was ever a case — here or there — where the person called after termination and there had been an error in updating their address, we would absolutely put them back on,” Hagan said.

That appears to be what happened in the case of Harrison, the young boy with autism from the beginning of this story. His mother, Heather Hantz, said TennCare told her Harrison was dropped because she did not respond to her renewal packet. Hantz insists she never received it.

After disenrollment brought an abrupt end to Harrison’s therapy, Hantz said she sought out help from the Justice Center and the office of Sen. Bob Corker. Harrison was ultimately reinstated after about four months and resumed therapy in December.

Still, Hantz worries about other families that might not know where to get help if if they were similarly cut from TennCare.

“It makes me sick,” Hantz said. “If you don’t know to call Tennessee Justice Center or to get a congressional inquiry into your children’s health care, then you are going to get confused, and you are going to get frustrated, and you just might give up.”

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Brett Kelman is the health care reporter for The Tennessean. He can be reached at 615-259-8287 or at brett.kelman@tennessean.com. Follow him on Twitter at @brettkelman.