Tennessee's Medicaid program insures more than one million people, mostly kids.

For years, TennCare relied on an outdated, paper-heavy process to determine eligibility.

But this system was rarely able to determine if kids were actually eligible.

CHATTANOOGA – When the leukemia was finally gone, Tricia Sewell thought her family’s nightmare was over.

It was October of last year. Sewell’s 5-year-old son, Abel, had just finished three years of chemotherapy, all of which had been covered by Tennessee’s state Medicaid program, known as TennCare. Chemo was successful, but now Abel needed monthly blood tests to check if the cancer ever came back.

At the doctor’s office, something went wrong. The staff discovered Abel’s TennCare had vanished. His mom paid out of pocket for the blood test. Then she realized she'd pay again next month. And the following month. And months and months after that.

“I was livid because I knew the costs,” Sewell said. “In the back of my mind, I always knew what this all costs.”

That was eight months ago, and the family's financial struggle was just beginning. Sewell said state insurance dropped her teenage son, Jacob, who has ADHD, in December. The boys' medical bills now amount to as much as $900 a month, Sewell said. To cover the costs, the family extended its mortgage, adding decades of debt to a modest home that was nearly paid off. Ultimately, the family resorted to skipping a few blood tests – putting Abel’s health at risk – because it can’t afford to pay.

“It has felt horrible,” Sewell said. “But when these bills come in, it makes you feel even worse.”

At least 220,000 Tennessee children were cut, or were slated to be cut, from state health insurance in recent years in an unwieldy TennCare system that was dependent on hard-copy forms and postal mail, according to a Tennessean investigation. The majority of these kids likely lost their coverage because of late, incomplete or unreturned eligibility forms.

Most TennCare beneficiaries are automatically renewed for coverage each year, but some families were required to complete mailed forms to confirm if they are eligible for state insurance. The Tennessean analyzed a TennCare database of 319,000 children who went through this paperwork process from January 2016 through December 2018. The analysis indicates TennCare representatives, using this paperwork process, were rarely able to determine if kids were actually eligible or not.

TennCare replaced this paperwork system earlier this year, but its impact on families was dramatic. Last year TennCare disenrolled more children than any other state Medicaid system in the nation – not just because a growing economy lifted poor families out of poverty – but because late, incomplete and unreturned paperwork made it difficult to tell who was eligible and who wasn’t. The rate of uninsured children is climbing statewide, and advocates say there are numerous stories of families who lost coverage but didn’t know it.

TennCare officials say they can't determine how many kids were cut from the insurance due to lacking paperwork despite the fact that the agency maintained a database on the renewal process.

In a written statement, agency spokeswoman Sarah Tanksley said the database provided by TennCare is “not reliable” and cannot fully account for how many people actually lost coverage.

For instance, the database does not show how many families used an appeal to keep or reinstate their coverage at a later date. Tanksley also said the analysis may not account for some kids who renewed their coverage through the federal insurance marketplace website or other TennCare systems. TennCare said it couldn't determine how many people in the database filed appeals or went through the other scenarios.

“We have more than a thousand dedicated employees working every day with our members and a leadership team that is continually looking at how we can best serve the Tennesseans who qualify for our program,” Tanksey said in the statement. “We want every Tennessean who is eligible to receive coverage, and any insinuation to the contrary is false."

Agency officials stress its new system for applications and renewals is more modern and convenient. TennCare Connect launched statewide in March.

"The process today, if you'll let me, is really great," said TennCare Commissioner Gabe Roberts during a legislative hearing in April. "Instead of having to send out a blank packet to individuals and having them basically reapply for the program or to fill out all this information, we are able to target what information we need."

NEED HELP?:If you lost insurance in the TennCare purge, there's a number you can call for help

TennCare, CoverKids are a lifeline for the poor

TennCare, the state’s largest government program, is a federally-funded Medicaid system that provides health insurance to Tennessee’s poorest residents. Eligibility for TennCare is complicated, but the program is most generous when it comes to children, extending coverage to kids from families that live close to or below the poverty line. The poverty line for a family of four is about $25,000 of household income.

Families that make too much money for TennCare can still enroll in CoverKids, a program for children whose households earn $64,000 or less.

Historically, TennCare has insured about 1.2 million Tennesseans, 60% of whom are children. The program has swelled and shrunk in the last five years based on whether the state required families to prove each year they were still qualified. The renewal process was suspended in 2014 so the state could focus on the implementation of the Affordable Care Act. As a result, TennCare grew to about 1.6 million people. Renewals restarted in late 2015 and the number of TennCare participants declined. The program currently insures about 1.4 million people.

TennCare and CoverKids renewals were handled like this: Most participants were renewed automatically because the government could verify their income by cross-referencing other social service programs, such as food stamps. If eligibility couldn't be determined automatically, families were mailed a questionnaire – sometimes as long as 47 pages – to complete and return.

Children are most likely to lose coverage – even if they are eligible – during renewal processes, said Tricia Brooks, an expert at the Georgetown University Health Policy Institute who studies Medicaid programs nationwide.

Brooks said paper-heavy renewal systems can be rife with problems: Forms may be mailed to wrong or outdated addresses or families might never complete documents they don't understand.

“You may have policymakers who say the families have an obligation to provide information so it’s their own fault, but that narrative is not a good one,” Brooks said. “We know people move. We know the mail might not catch up to them. And we know we send lengthy forms that are complex.

“A 47-page form is daunting for a Ph.D.,” Brooks added. “It’s even more daunting for a low-income family with a lot of stress in their lives.”

Two state lawmakers have also pressed TennCare leaders for answers about the loss of children's health insurance. During budget hearings in April, Sen. Jeff Yarbro, D-Nashville, and Rep. Dwayne Thompson, D-Cordova, asked agency officials how many children were disenrolled due to lacking paperwork.

Both lawmakers said TennCare didn't provide them answers. Yarbro added that poor families had been “sabotaged” by a renewal system that didn’t work.

“This is utterly broken to the point of where it appears to be more by design than accident,” Yarbro said. “You have to conclude that this is a management decision to trim the rolls or at least let them shrink by relying on people either not receiving, or not completing, the gargantuan applications.”

Wendy Long, a former TennCare director who oversaw the agency from 2016 to 2018, declined to comment through a spokesman. Long is now the Nashville public health director.

Tennessee Medicaid shrinking the fastest

People are being dropped from state Medicaid programs all over the nation, but Tennessee is leading in the number of children cut. About 10% of children in TennCare and CoverKids left the programs in 2018 – more than similar programs in any other state – according to a recent Georgetown study.

Although the Tennessean investigation shows that much of this decline stems from paperwork issues, Lt. Gov. Randy McNally has credited Tennessee’s strong economy with lifting families out of poverty and off the state insurance programs.

Additionally, Roberts, the TennCare director, said he thinks some families did not complete the renewal paperwork because they already knew they were no longer eligible for coverage.

“What we have seen historically in our program is that when individuals don’t access the benefit as much … or they don’t want the benefit for whatever reason, they get the mail and they don’t respond to it,” Roberts said during a TennCare budget hearing in April. “So there are any number of reasons why someone would appropriately come off the program because they don’t respond to the paperwork.”

Brooks, the Georgetown expert, said politicians and bureaucrats across the nation are quick to credit the economy for shrinking Medicaid programs. But that explanation means an impoverished family of four must suddenly earn well above the poverty line and be so confident in their understanding of Medicaid eligibility that they don't try to renew their kid's coverage.

“You could not possibly think that even the majority of these families are either going over the income limit or getting other coverage,” Brooks said. “The economy was not improved that much.”

The economy explanation also doesn't match what is being witnessed in doctors’ offices across the state. More than 10 Tennessee medical professionals have told the USA TODAY Network-Tennessee that families regularly discover their TennCare has been revoked while standing in their clinics.

The same pattern has been echoed by the Chattanooga mayor’s office, which launched a special effort to assist residents who lost their TennCare, and the Tennessee Justice Center, which has assisted TennCare families for more than two decades. In the past three years, the Justice Center has taken calls from thousands of people with TennCare problems and represented more than a thousand families in TennCare appeals.

Kinika Young, the center’s director of children’s health, believes many families never receive renewal forms because TennCare mails them to the wrong homes.

“This is not a situation of kids no longer being eligible because the economy is better or any other excuse like that,” Young said. “It really is that these kids were cut off because of red tape. The system has to be flawed because we know parents would not be willing to let their kids lose coverage if they had received the packets.”

TennCare officials deny that renewal paperwork is often mailed to the wrong address. The agency pays the U.S. Postal Service to send mail to forwarding addresses, but stressed it is the responsibility of participating families to update their address.

TennCare also said it called and sometimes texted or emailed families to stress the importance of filling out renewal forms.

Tanksley, the TennCare spokeswoman, said in an email statement “many people fail to take the steps required to maintain coverage.

“The fact is there are multiple reasons why an individual may choose not to participate in the renewal process and a failure to do so says nothing in and of itself about the adequacy or accuracy of the process,” Tanksley said.

Although TennCare defended the paper renewals, the agency is using a different processing system now. After five years of troubled design, the state government launched TennCare Connect, a new online portal for applications and renewals, in March.

To determine if a person is eligible, TennCare Connect automatically pulls information from more than 50 government databases, according to agency officials. About 75% of renewals still require paperwork to be mailed, but families are sent more specific questionnaires and have more ways to respond.

Months with no insurance, no answers

On a sunny spring afternoon, Abel and Jacob Sewell rode bikes down a narrow road on a hill in front of their house in rural Chattanooga. Half-joking, their mother reminded them to be extra careful because they didn't have health insurance.

Jacob didn't listen. He wrecked his bike and scraped his knee. Blood ran down his leg but the cut wasn't bad enough to require medical attention.

His parents were relieved. The stack of unpaid bills in the living room wouldn't grow any taller. At least, not on this day.

“If I had all the money in the world, I’d go out and get them insured proper,” said John Sewell, the boys’ father. “But we don’t have that luxury. And there are lots of people in Tennessee who don’t.”

In an effort to restore the boys’ insurance, the Sewells joined TennCare Connect earlier this year, and Tricia Sewell said she spent months asking TennCare why they were cut from coverage. She finally got an answer in May when she received a TennCare letter claiming the boys’ renewal paperwork was incomplete and her husband, a construction worker, makes too much money to be eligible.

Sewell said she had twice mailed pay stubs to TennCare showing her family should qualify. She also provided stubs to The Tennessean showing the family appears to be eligible for CoverKids.

This month TennCare agreed. The family received a letter on Wednesday approving both Abel and Jacob for CoverKids.

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USA TODAY Network-Tennessee reporter Corinne Kennedy contributed to this story.

TennCare and CoverKids: How to apply, renew or appeal

After years of relying on paper forms and postal mail, the Tennessee government launched a modernized application system to handle state health insurance earlier this year. TennCare Connect gives Tennessee families more options to apply for or renew TennCare or CoverKids coverage.

Apply online: Tennesseans can now apply for TennCare or CoverKids through the TennCare Connect web portal – Tennesseans can now apply for TennCare or CoverKids through the TennCare Connect web portal – tenncareconnect.tn.gov . You can also submit documents to renew coverage with TennCare Connect.

Download the app: If you want your state insurance information on your cell phone, download the If you want your state insurance information on your cell phone, download the TennCare Connect app . The app is available in the Apple Store and on Google Play.

Over the phone: The Tennessee government also processes state insurance applications at a TennCare call center. You can reach the call center at 1-855-259-0701.

How to appeal : Do you think TennCare made a mistake? You can appeal state insurance decisions by calling the TennCare call center at 1-855-259-0701 or TennCare Solutions at 1-800-878-3192.

Need help? If you need help or legal representation with your TennCare application, renewal or appeal, contact the Tennessean Justice Center at 1-844-478-KIDS. You can visit their website at If you need help or legal representation with your TennCare application, renewal or appeal, contact the Tennessean Justice Center at 1-844-478-KIDS. You can visit their website at www.tnjustice.org

TennCare investigation: How we did it

For this investigation, USA TODAY Network-Tennessee analyzed a TennCare database, obtained through a public records request, that details more than 319,000 children who were in the TennCare paperwork renewal process between January 2016 and December 2018.

The database was maintained by Maximus, a Virginia outsourcing company hired by the state to oversee TennCare eligibility. The data only lists recipients age 19 and younger, who TennCare classifies as children.

According to the renewal database, TennCare determined eligibility for 31,500 children based on completed renewal forms returned to the agency. In comparison, paperwork for more than 221,000 kids appears to have been returned late, incomplete or not at all. In this group, more than 202,000 children were slated to lose coverage because their parents or guardians never responded to the renewal forms, according to the database.

Potentially, as many as 35,000 more children who submitted renewal paperwork may have been approved after being told their coverage would end, but they were not tracked in this database. TennCare says it doesn't know how many of these kids were approved.

Additionally, of the 221,000 kids who had lacking paperwork, some may have later restored their health insurance by filing an appeal. Again, TennCare says it does not know how many. Appeals are not documented in the Maximus database.

For perspective, TennCare provided recent appeal rates: 19% of those filing paperwork renewals appealed since 2015, including adults (children aren't tracked separately, but they may appeal at a higher rate, officials said). Of the children who appealed, 78% of them are eligible today. Using those figures, 61,000 of the children in the paperwork system may have appealed, and about 47,000 would currently be eligible.

That high rate of successful appeals is alarming to the Tennessee Justice Center, an advocacy group that is among TennCare’s loudest critics.

“I think that’s just more damning for TennCare,” said Justice Center attorney Chris Coleman. “That means they are terminating coverage for kids that are eligible – this is proof of that.”

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.

Reach Mike Reicher at mreicher@tennessean.com or 615-259-8228 and on Twitter @mreicher.