On Aug. 9, Holly Uchtman and her 7-year-old son Zyler headed to their weekly appointment at Mercy Hospital in Springfield. Zyler has Duchenne muscular dystrophy, a rare, terminal disease that causes muscles to weaken and eventually stop working. For two years, Zyler had been receiving eteplirsen, gene therapy that helped his muscles keep their shape.

But that day, there was a surprise on the other side of their journey. The state had removed Zyler from Medicaid, which pays for his nearly $40,000-a-week treatment. They were turned away, and he missed his appointment.

Zyler was one of the 120,000 people, most of them children, who have been dropped from Missouri’s Medicaid rolls since the beginning of 2018, either because the state removed them or they didn’t re-enroll. State officials say the huge drop is because leadership is finally weeding out ineligible recipients after years of neglecting to double-check eligibility.

In recent months, eligible families across the state say they’ve been arriving at doctors’ appointments to learn their children have been unwittingly dropped from the program and are unable to receive the required medical care.

“I cried. I cried for a week,” Uchtman said. “I was beyond stressed out. Plus, I have a full-time job. I have another kid. It’s been something no family should have to go through.”

Many parents say they never received re-enrollment paperwork before getting kicked off. Earlier this summer, the Department of Social Services did send Uchtman a postcard telling her to expect re-enrollment paperwork, she said. But it never came.

“I never received a paper one in the mail,” she said. “I never received a phone call. I never received anything.”

There are more than 850,000 people statewide using the program, which covers the poor and people with disabilities, and more than half of them are kids like Zyler. Uchtman had heard about families being kicked off, but she never imagined it would happen to her son, she said. His treatments alone cost almost $2 million each year.

“I just assumed that they’ve seen Zyler’s medical history, or his diagnosis, and seen that he needed the insurance,” she said.

Uchtman is planning to take Zyler to a Muscular Dystrophy Association clinic at Cincinnati Children’s Hospital early next month so he can meet with several doctors, including a neurologist. But she does not think they will be able to make the trip unless his Medicaid coverage is restored.

‘We’re doing a better job’

Health care providers, advocates for children and parents raised an alarm when Missouri's Medicaid enrollment began to decrease steadily last year. Between May 2018 and May 2019, the number of enrollees in Missouri dropped nearly 11%. By comparison, national enrollment decreased a little more than 2% in that same time period.

But several lawmakers in Jefferson City say the program is running as intended. It’s not a coincidence that enrollment started dropping in 2018, said Todd Richardson, the director of MO Healthnet, another name for the Missouri Medicaid program. That’s when the state started systematically reviewing who was using the insurance program, something previous administrations didn’t do.

Loading...

An improving statewide economy also means fewer people are eligible for Medicaid because they are now making too much money to qualify for the program, he said.

Credit Holly Uchtman | Provided Seven-year-old Zyler plays with Legos while he receives his treatment for muscular dystrophy. He was one of more than 100,000 people who were dropped from the state's Medicaid rolls in the last 18 months.

“We’re seeing enrollment return back to a number that’s far closer to its historical range than when it was when it hit its high-water mark in 2016 and 2017,” Richardson said. “We understand that there’s a number of factors that have led to that, but it’s something we’re also monitoring on an ongoing basis.”

The eligibility rule is a big factor in declining enrollment, said state Rep. David Wood, R-Versailles, chairman of the House Appropriations subcommittee for Health, Mental Health and Social Services. Wood agreed with Richardson that a drop in the number of people eligible for Medicaid was a factor. He said that a 2017 decision by Congress to change the Affordable Care Act so that people are no longer fined for not having insurance also contributed to the drop in Medicaid enrollment.

“Who we’re allowing in or the rules that qualify these children for Medicaid have not changed,” said Wood, who has been looking into why enrollment is decreasing. “Now, we’re doing a better job, and those people are being moved off of Medicaid if they don’t qualify. So, your factor that changes is the program, the economy, the change in the ACA.”

‘A system-wide failure’

Critics say the state’s explanations don’t add up.

State Rep. Crystal Quade, D-Springfield, isn’t buying it. She said state officials have blamed the enrollment drop on computer glitches, undelivered mail and long call center wait times.

There likely were people who were dropped because they were no longer eligible, she said.

“But I also know for certain that there are families who want coverage, who should have it, whose incomes that have not changed and have very serious illnesses that are no longer getting covered,” Quade said.

She wants the state to hold hearings to investigate, she said.

“It’s a system-wide failure,” said Joel Ferber, advocacy director at Legal Services of Eastern Missouri. “It’s not just all of sudden 100,000 parents were like, irresponsible or got really great-paying jobs and don’t need Medicaid anymore.”

The state has been slowly transferring to a new computer system, which is fraught with glitches, to review and organize Medicaid recipients, said Ferber, whose nonprofit has helped hundreds of people restore their Medicaid coverage.

That system isn’t cross-checking other databases that contain information about welfare and food stamp benefits.

Several states use “no-touch” renewals, which don’t require manual paperwork, to automatically re-enroll Medicaid recipients by checking other sources. But Missouri is only using those no-touch renewals for about 11% of its renewals, he said.

During the review process, if Missouri’s computer system can’t verify a recipients’ income level, it sends out a mailed re-enrollment form for recipients to fill out, Ferber said. But many times those forms go to the wrong place, because people on Medicaid often move a lot or don’t have a permanent address, he said. That means they only learn they’re not on Medicaid when they arrive at the doctor’s office.

“The biggest problem is people are terminated without knowing, without really having a legitimate shot at keeping their coverage going,” Ferber said.

Of the clients that have come to Legal Services for help, “We’ve only had one client that turned out to be ineligible,” he said.

More than half of the recipients kicked off the Medicaid rolls were removed because they did not respond to mailed forms, according to state data from earlier this year.

Ferber said legitimately eligible patients have become collateral damage in the state’s effort to tamp down on unauthorized users.

Credit Sarah Fentem | St. Louis Public Radio Dierdre Wortham relaxes while members of her family play around her. Her son, Aiden (second from left) had to forgo treatment after the state removed them from Missouri's Medicaid program.

Panic, confusion and frustration

One of those patients is Diedre Wortham, who lives in Florissant. Like Uchtman, she never received a re-enrollment form.

Her 12-year-old son Aiden goes to a community clinic to get therapy for behavioral problems. “We call him Angry Bird,” Wortham said affectionately.

In July, Wortham’s older son took Aiden to his appointment because she had a final exam. At 48, she was two tests away from earning her high school diploma. But when they arrived at the clinic, they told her son Aiden couldn’t go to his appointment because he didn’t have insurance.

The clinic did offer to enroll Aiden in temporary insurance until the family could re-enroll in Medicaid. But in order to sign him up, Wortham would have had to leave school to fill out forms.

“Well, I couldn’t do that. Because if I would have left, then I wouldn’t have been able to go back and take my final exams, I would fail,” Wortham said.

She made the difficult decision to finish her test. Aiden skipped his appointment.

Wortham’s kids were still eligible. And she had just registered for cash assistance and food stamps, but without insurance, Aiden had to wait for weeks to go back to therapy once he got back on Medicaid. That left Wortham without help managing her son’s dark moods.

“You have to constantly ask him what’s wrong,” she said. “And you don’t have their doctor to speak to, to tell her what’s going to help accommodate that.”

Low-cost clinics and community health centers such as the one Aiden visits are ground zero for enrollment crises, said Dr. Melissa Tepe, chief medical officer at Affinia Healthcare. Every day, patients come in for an appointment to learn they’ve been dropped, she said.

The clinic’s navigators can usually work with them to get their coverage back, which is telling, she said.

“They’re usually able to re-enroll, which just tells me it’s not due to financial status, it’s not due to all of a sudden them having better-paying jobs and having private health insurance through work,” Tepe said. “They still need Medicaid, even though they got disenrolled.”

The clinics have been seeing more uninsured children in the past year, but the percentage of kids with private insurance has held constant, she said. That indicates that fewer people are moving from Medicaid to employer health plans, as the state suggests, she said.

Affinia also can sign patients up for temporary or retroactive Medicaid, but only if they have the right forms with them. But sometimes the person who needs to sign kids up isn’t the person who takes them to an appointment, as with Wortham.

Seeing the panic, confusion and frustration in her patients every day is frustrating, Tepe said.

“You want to see them really thrive, and this is one more barrier to that happening,” she said.

Credit Carolina Hidalgo | St. Louis Public Radio Regina Hartfield serves dinner for her children in their south St. Louis home. Hartfield said she's spent hours on the phone trying to get her children back on Medicaid.

‘They have to do better’

Trying to regain Medicaid coverage can be a headache, as Regina Hartfield learned when she tried to do so over the phone.

Hartfield lives in south St. Louis with her four kids and two stepkids. She works two jobs to support them.

This summer, her family was dropped from Medicaid because of what the state workers later told her was an “error in the system.” She’s been trying to sort out the problem for weeks by calling the Department of Social Services, sometimes staying on hold on her phone during her shift at a bank.

“Now you have to call over the phone and be on hold for hours — literally hours — in order to talk to somebody,” she said. “And then what happens? 'You know what? You actually called the wrong department, so we have to transfer you to another department,' where you're on hold again, for hours!”

Like Wortham, Hartfield learned her kids had been unenrolled when her 14-year-old daughter’s doctor contacted her.

“Not only was my daughter not able to get her braces checked and fixed, but my son is not able to get his medicine because his medicine is like $500,” she said.

Hartfield is constantly under stress about an unforeseen asthma attack or a broken bone. She wants to put up a brave front for her kids, but it’s becoming difficult, Hartfield said.

“I don’t want them to see me stressed out,” she said. “Of course, everyone wants their kids to see them as supermom … ‘She can do everything.’ But when situations like this occur and it’s out of your hands, there’s absolutely nothing you can do about it.”

Hear Sarah Fentem talking on St. Louis on the Air about her reporting on this story:

Correction: An earlier version of this story misspelled Regina Hartfield's name. It also misstated the age of 7-year-old Zyler Woodword.

Follow Sarah on Twitter: @Petit_Smudge

Follow Jaclyn on Twitter: @DriscollNPR

Send questions and comments about this story to feedback@stlpublicradio.org