“Scared out of my mind”: A family scrambles after their disabled 3-year-old loses Medicaid

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Jodi Whites glanced through tears in the rearview mirror at her 3-year-old daughter, Amelia, who was slumped in her car seat, pale-faced, lethargic and unresponsive. The 37-year-old mom of five repeated the same words loudly to her daughter as she tried to keep her awake.

They were going to the hospital. They would figure it out. Everything would be fine.

That day in April, emergency room doctors explained that an absence seizure, in which the patient is unresponsive, had caused Amelia to lose consciousness and start choking at school. They sent her home with medicine to prevent another.

In the three months since, Amelia wakes up crying almost every hour of the night. Amelia presses and taps her hands on her forehead to try and calm down. Whites sleeps in Amelia’s room, feeling helpless beyond rubbing her daughter’s back or giving her another pillow to help her fall back asleep.

“Parents of medically complex children can’t afford for emotion to take over,” Whites, of New Braunfels, said. “You get into the parking lot of the ER, you wipe your tears, you get your kid and you go. You can have your breakdowns once the doctors have seen them.”

But her daughter Amelia can’t see her doctors anymore. She can’t undergo scheduled brain tests because the Medicaid coverage that provided access to all her treatment — for her six congenital heart defects, her cerebral palsy and her autism — was revoked.

Amelia is one of half a million Texans booted from Medicaid — the federal health insurance program for low-income individuals — after three years of continuous coverage during the pandemic, when federal regulations prohibited moving anyone off of the rolls. Around 5 million Texans rely on Medicaid, which mainly provides health coverage for children, but some adults with disabilities and pregnant women can also receive benefits from it.

The state intended to remove people who are now ineligible, including children who turned 18, aging them out of qualifying, and women months out of their pregnancies. But many eligible Texans have also lost coverage for reasons including procedural errors like not sending in renewal applications on time, jeopardizing their ability to access consistent care.

But according to a letter addressed this week to the executive commissioner of the state agency that manages Medicaid for Texans, the Texas Health and Human Services Commission, approximately 80,000 eligible people have “lost coverage erroneously.” The letter, obtained by The Texas Tribune, was written by HHSC employees who did not name themselves, signing off only as “Concerned Texans and Dedicated Employees.”

When the Tribune reached out to the employees, they declined to provide any further identifying information. An HHSC spokesperson acknowledged that it was aware of "some cases that were denied" and said the agency is working to reinstate coverage for those people as quickly as it can. The agency did not answer questions about the accuracy of the 80,000 number.

First: Whites shows the gastrostomy tube that Amelia uses to eat in its storage space in their fridge. Last: Avery Whites checks on her sister Amelia during lunch by looking at the machine connected to the gastrostomy tube that she uses to eat. Credit: Evan L'Roy for The Texas Tribune

The Whites’ Medicaid history

Whites enrolled herself into Medicaid in 2019 when she was still pregnant with Amelia. After her delivery, Amelia had three strokes and began having seizures days later, leading to her need for a gastrostomy tube and other treatments, qualifying the newborn for Medicaid.

Whites’ husband, Trace, is self-employed as a master plumber and makes varying incomes per month. Together, they have five daughters, the youngest only a year old — and they can’t afford marketplace insurance for Amelia, which wouldn’t cover everything she needs anyway, they said.

In Amelia’s case, Whites said the state told her that her husband’s income in the month leading up to her application renewal was too high to requalify, which surprised her because his income changes every month.

Jodi Whites said she had believed Amelia’s coverage would continue. She said she didn’t receive any communication from the state that her renewal application was denied until two weeks before she lost coverage.

“As soon as I saw that denial, I could not breathe. I could not think. I was scared out of my mind,” she said, “because I know what a loss of coverage for Amelia means.”

She started calling HHSC, sending out emails and researching other options. Since then, it’s been a back and forth waiting for any news on being approved or denied while feeling confused when agents give her seemingly wrong information on the phone — like that she did not have the ability to repeal the first denial.

She has now reapplied for Medicaid with the most recent income information she has and has also applied for what is known as Medicaid “buy-in” coverage, which allows for slightly higher incomes, and is waiting to hear back from the state.

Advocates have called for a pause on removing people during the complicated “unwinding” process to stop more eligible families from losing access to care.

In a statement, HHSC spokesperson Tiffany Young said the agency “has implemented a multi-pronged communication effort to reach clients during their renewal process,” including mailing notices, sending text messages, hosting events and collaborating with community partners. HHSC is trying to prioritize redeterminations “for those most likely to no longer qualify for Medicaid.”

Losing “another mother” 

For the past three years, home health nurse Taylor Lackie has worked with the Whiteses, thanks to Medicaid. The 25-year-old spent her days at the Whites’ home measuring Amelia’s vital signs throughout the day and assisted with Amelia’s nutrition via her gastrostomy tube, which Amelia uses to “eat” because she isn’t able to digest through her mouth.

Lackie helped Amelia recover after she returned from heart surgery at Boston Children’s Hospital last fall for her heart defects. She helped administer oxygen when Amelia would start retching and lost the ability to breathe. Last spring, she accompanied Amelia to her preschool, texting Whites with updates when Amelia’s eyes glazed over and her mouth dropped open — the telltale signs that an absence seizure was underway.

“This woman is like another mother to my child,” Whites said. “This woman knows my child as deeply as I do when it comes to medical issues.”

But since they lost Medicaid coverage this June, Lackie has been unable to see Amelia. Whites has taken over Lackie’s nursing duties in the meantime but also has to care for her other children.

Whites said she received an email with instructions for registering her kids for the new school year and realized she can’t enroll Amelia because she can’t send her to school without a home health nurse.

Medicaid covered more than Lackie’s services for Amelia. It also provided regular supplies for her gastrostomy tube and oxygen, which she needed when she couldn’t breathe. A company working with Medicaid removed the supplies for providing oxygen on Thursday from the Whites’ home.

For her gastrostomy tube, Amelia needs access to syringes, special pump bags and formula. Whites paid out of pocket for a set of syringes once, but it was too expensive, and since then she’s been outsourcing to Facebook to reach families of children with similar needs. Some parents from other states have shipped her their leftover supplies. Others have asked her to pick them up, leading Whites to drive hours to different parts of the state to keep Amelia going.

“We learn to take care of one another as medically complex parents because we can’t always depend on the state for services,” Whites said. “We take care of each other and our kids.”

Shortly after losing coverage, Whites also reached out to Protect TX Fragile Kids, a nonprofit run by similar parents who help each other navigate Medicaid and advocate for improvement in policies for children with disabilities, for help with their situation and she’s connected with its community online to continue accessing supplies.

Terri Carriker, one of its board members, said Protect TX Fragile Kids has heard from dozens of families like the Whiteses going through the same situation since before the pandemic and she has seen families “file for bankruptcy, lose their homes, lose their cars and everything.” The pandemic emergency rules allowed a break from feeling “on edge” about the need to constantly requalify for coverage.

Carriker’s own daughter has medical issues and has aged out of her own Medicaid waiver program and is now transferring to an adult waiver program. Waiver programs cover groups of people with specific sets of health needs so they can receive tailored health care.

“My daughter would wind up in the hospital for something and I would almost feel relieved because at least here’s evidence that she still needs services,” Carriker said. “It’s awful.”

Amelia qualifies for a Medicaid waiver program that guarantees coverage, but she’s one of 6,012 people on a waiting list, her mother said.

Carriker said few other options remain for families in desperate need, but many are “stressful” and “humiliating.” One option includes taking a child for nursing home admission to one of the few facilities in the state that provide crisis care, and if the child meets multiple, strict health-related restrictions and spends one night in the nursing home, they can leave with Medicaid coverage.

A “tiny tornado” 

Last Friday, Amelia lost balance while running around with her sisters and tripped and fell into a door handle, giving herself a black eye.

It’s normal for kids to get hurt while playing, Whites said, but when they can’t reach their arms out to catch their fall, something is wrong. It’s a red flag in Whites’ mind, added to a running list of everything Whites hopes to share with doctors whenever the family is able to get coverage again.

Amelia’s father, Trace, became so stressed about the precarious situation that he emailed Gov. Greg Abbott’s office detailing the situation and asking for help.

He received a response on Wednesday from Marie Dahlmann, director of Abbott’s constituent communication division, saying she asked HHSC staff to review their situation — something his wife has been asking them to do the entire time.

State Rep. John Bucy III, an Austin Democrat on the House Select Committee on Health Care Reform, said his office has heard the “unwinding” has not gone well for many bureaucratic reasons that should be fixable. He said the systems used to manage Medicaid eligibility should be modernized.

“There’s no other way to say it: We’re in a crisis,” Bucy said. “This is terrible for Texans. But we’re coming back and this should not wait for the next session for the Legislature to act. This has to be dealt with now.”

Amelia will turn 4 soon and has recently developed a love for horses, so Whites hopes to take her to meet some for her birthday. Even though she can’t eat, Amelia started dipping her fingers into the ketchup of her sister and tasting it to “prove she won’t be outdone,” Whites said.

Amelia is mostly nonverbal but shakes her head or gestures strongly to make sure people know what she wants, Whites said.

“We call her the tiny tornado,” Whites said. “She is most definitely the most strong-willed child that I have — both from how strong she’s been to get through all of the medical procedures, but also with her desire to use communication of some kind.”

Both of her parents said they pray she continues to stay as healthy as she can in the interim but don’t know how long the gap will last or how they will deal with an emergency. Jodi Whites said all of the same symptoms Amelia had leading up to her first absence seizure have started creeping in again: her sleepless nights and her lack of balance.

“That day was the scariest day I’d had in a long time, and there is a daily fear, a conscious fear, every day, that that’s going to happen again,” Whites said, “and I don’t have the ability to do anything.”

Neelam Bohra is a 2023-24 New York Times disability reporting fellow, based at The Texas Tribune through a partnership with The New York Times and the National Center on Disability and Journalism, which is based at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University.

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