Missouri children are losing Medicaid coverage at rate that is alarming pediatricians

Saira Khobab and her 8-year-old son, both of whom were cut from Medicaid and struggled to re-enroll, walk into a pediatrician's office in Kansas City on July 11 (Clara Bates/Missouri Independent).

Dr. Maya Moody, a community pediatrician in St. Louis, knows a new month has begun when her clinic’s billing department runs patients’ names and she hears about the children no longer covered by Medicaid.

One of those patients, now 3 years old and deaf in one ear, was scheduled for a cochlear implant. But when his family unexpectedly lost Medicaid last year, they had to cancel the appointment.

Delays getting their coverage reinstated and securing another specialty appointment set the procedure back by around a year.

“And now,” Moody said, “he has developmental delays because he wasn’t getting all of his services that he needed for his hard-of-hearing.”

Other parents, she said, don’t learn their child lost Medicaid coverage until they reach the clinic’s front desk. And though they quickly submit paperwork to get coverage back, it can be months before it’s reinstated.

Since June of last year, Missouri has been re-checking the eligibility of all Medicaid enrollees, after a three-year federal pause due to the COVID-19 pandemic.

The Medicaid rolls are down by roughly 136,000 kids since the process of recertification started up again. Many qualify for coverage but are losing out due to paperwork or “procedural” reasons.

And in recent months, the state’s application processing times for Medicaid have gotten so long the federal government was compelled to intervene to help Missouri improve the situation.

In the meantime, thousands of children who lost coverage are dealing with delayed or foregone medical care, which can include missed vaccines for infants, preventative care and prescriptions for chronic diseases like asthma and diabetes — doctors, families and advocates told The Independent.

“While we’re waiting for this bureaucratic process of solutions and people sitting at tables talking about procedural issues, I’ve got kids in my office who are suffering poor health outcomes, delayed care,” Moody said. “It’s just heartbreaking.”

Worst-in-nation processing delays

Over the last year, the state’s Medicaid rolls shrunk by 249,209 people. Over half of that decline was children, even though children are eligible at higher income levels.

Of Missourians who lost coverage between June 2023 to May, state data shows nearly 80% were for a “procedural” issue, and the rest were no longer eligible.

Procedural issues generally refer to paperwork issues, meaning a participant failed to return paperwork or the state didn’t receive it. Those can include people not understanding the forms, not receiving them because of a change in address or the state losing the paperwork upon receipt.

As the state evaluates hundreds of thousands of current Medicaid recipients each month and processes their updated information, it continues to receive new applications — some of which are from people who were cut and trying to get back on.

Federal data shows Missouri’s application processing times have been among the worst in the nation since late last year.

Medicaid applications are generally required to be reviewed within 45 days. Nationwide, most applications were processed within 24 hours last year.

But more than half of applications took longer than 45 days to process in Missouri between December and March, the most recent available data. In February , that portion was 72% and in March it was 64%.

Nationally, only 14% of applications took longer than 45 days to process in March.

The federal Centers for Medicare and Medicaid Services wrote in a May letter obtained by the Independent that it is concerned the state is not doing enough to “achieve and sustain” compliance with federal rules on Medicaid and is intervening to help Missouri identify strategies to come back into compliance.

The Department of Social Services, which oversees the state’s Medicaid program, declined to comment for this story.

Kids hospitalized because of Medicaid lapses

Dr. Thuylinh Pham, a pediatric urgent care doctor in Kansas City, said she’s been seeing kids come in who have had Medicaid lapses and “can’t afford their chronic medications.”

Some families are unable to get a primary care appointment because they’re no longer insured, and don’t go to the ER because they’re worried about the cost.

“ These kids are coming in really, really sick,” Pham said. “We’re having to call 911, we’re having to get transport and get them into the hospital, and the reason for a lot of it is they want to avoid a bill, and so that is a really dangerous situation for these kids.”

Asthma medications out of pocket can cost over $100 per month.

“We are seeing kids who have been out of their medications for months and may have been well-controlled on the medications, but now…they’re being hospitalized for it because of Medicaid lapses,” she said.

Dr. Heidi Sallee, a pediatrician in St. Louis who is also president of the Missouri chapter of the American Academy of Pediatrics, remembers a specific patient’s deterioration.

A 5-year-old asthmatic girl was recently cut from Medicaid and her family couldn’t afford refills of her prescription. The girl ended up in the emergency room two times while waiting to be reinstated, Sallee said.

At one point, her mother had tried to fill a room with steam to ease the girl’s symptoms, but she stopped breathing and was rushed to the emergency room in an ambulance.

“If she’d been able to stay on her Medicaid and not have that interruption, she would have been on her medicines and would likely have not had that asthma exacerbation that then brought her to the ER two times,” Sallee said.

Parents’ difficult calculations

Dr. Shanon Luke, who for the past three years worked as a pediatric resident in Columbia, said she’s seen disenrolled families postpone preventative care, such as getting lab testing done to determine the cause of a child’s slow physical growth.

“ It can be frustrating just wanting to provide the best care for the patient, but having this barrier,” she said, “…seeing the difficulty that they had in making the decisions on what to do for their kid because they were concerned about finances was just really sad.”

Several pediatricians mentioned patients driving from hours away, from rural areas without pediatricians who take Medicaid, only to be turned away for lack of coverage.

Missouri Ozarks Community Health is a federally-qualified health center with six clinics in rural south-central Missouri. It offers limited pediatric care, said COO Randall Gann, and is primarily seeing the current Medicaid issues in kids’ dental care, where they provide services for many more kids.

Gann said he’s seeing patients waiting five or six months to get dental care, after they’re disenrolled and try to come back on — and that those delays have gotten worse the last few months.

“We have a lot of parents making decisions right now to not pursue dental care for their kids,” he said, “unless, you know, they get on the Medicaid status and can actually get approved before bringing them back in.”

A ‘multitude of systems issues’

Parents and advocates trying to get answers from the state about their coverage issues often run up against seemingly insurmountable barriers.

The state has long been grappling with technology issues, including a dysfunctional call center, and staffing issues.

LaNetta Nole, a mother of two living in Malden, in the southeast part of the state, has been trying to get her kids — a 14-year-old son and 10-year-old daughter — back on Medicaid since February.

She works at Pizza Hut and her husband works as a mechanic. His employment health care plan would cost $500 per week to add her children, she said.

Her son got braces in December but hasn’t been able to go back to the orthodontist for his monthly routine checks and adjustments because he’s uninsured. Each visit to the orthodontist costs $170 without insurance, she said.

“We don’t have that,” she said. “…I don’t even have that to take him back to the orthodontist and he needs to go.”

Cole has called the state each month since January. She has waited up to four hours on the phone to connect with a representative.

When she tried going to her in-person to a Family Support Division office in East Prairie earlier this year, she said she was directed to a booth and told to wait for a call. She didn’t have time to wait beyond 20 minutes.

“I’m so confused by it, and I’ve wracked my brain trying to figure out why they have not been reactivated,” she said, “Because I submitted everything.”

Advocates who help people with their Medicaid enrollment issues say they’ve been frustrated the state hasn’t taken more action to address problems that have been there for the last year.

Joel Ferber, advocacy director at Legal Services of Eastern Missouri, said they’ve noted a “multitude of glitches and systems issues,” including with the state failing to process documents in a timely way, losing documents and people being kicked off due to computer errors.

They’ve seen “so many newborns without coverage for more than a month missing doctor’s appointments,” Ferber said.

Jim Torres, program manager for health insurance services at Samuel Rodgers Health Center in Kansas City, said after he helps clients get their information to the state, “it’s hitting a brick wall,” often taking months to have the state register simple changes.

“Patients sometimes come back to us and say well, I gave you the information to send in. Didn’t you send it in?” Torres said.

“Yes, I did,” he replies. “It’s sitting on their computer system, it hasn’t been worked.”

Some women, Torres said, give birth before they finally are able to get switched from adult Medicaid to the pregnancy Medicaid category, which covers important services like prenatal visits.

“It’s a broken system,” Torres said “I think they’re dedicated hardworking public servants but the system just isn’t working.”

Ripple effects

Saira Khobab, a mother in Kansas City, spent the last month calling Torres in a panic.

At the optometrist in May, when Khobab went to buy a pair of glasses for her 6-year-old daughter, she was told her Medicaid had been deactivated. The glasses would cost around $200 out of pocket, which the family — her husband works overnight shifts at a gas station — couldn’t afford.

She worried her daughter wouldn’t be able to see the blackboard at school next month.

Her daughter, her 3-year-old son, 8-year-old son and Khobab all lost Medicaid coverage after the family’s annual renewal in April, even though they meet the income requirements for eligibility and Khobab remembers submitting the required paperwork.

Her youngest son has several health problems. Khobab needs care, too, that she’s had to delay — she fell twice while pregnant, gave birth in May, and has had trouble walking. She needs to go to physical therapy, she said.

“Especially after I gave birth, it’s been really stressful,” she said.

Late last week, she finally got news their coverage had been renewed.

“I’m happy for her,”  Torres said, “because I could sense the frustration and the worry in her voice — ‘kids are sick, they have dentist appointments, doctor’s appointments, how are we going to do this?’”

The saga isn’t over. Bills are piled up on her dining room table for appointments she is relying on Medicaid to backpay, now that they’re finally reinsured.

And she rattles off the specialty appointments she’ll need to make now for herself and kids. She worries about what will happen in the months of waiting for openings.

“Tomorrow,” she said, “I will call when my card is active. I’ll call and see what we are going to do.”

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