Families say they face ‘heavy burden’ with Cook Children’s Health Plan in limbo

After a March brain surgery at Cook Children’s, 15-year-old Preston Benjamin-Sewell had to relearn how to walk, eat and talk.

He was in the Fort Worth-based hospital for a little over a month and a half, a place he’s well acquainted with. The first several days were challenging, said Meghan Czarobski, his mother. Preston was bedridden and couldn’t do anything independently.

“But once he gets up and going, nothing holds him back,” Czarobski said. “He just starts going. So, he went from, like, not being able to walk to, as soon as he got his footing, he was taking off.”

The surgery was to help with seizures. Preston has autism, an intellectual and developmental disability and a rare form of epilepsy called Lennox-Gastaut syndrome. He’s triple insured through Cook Children’s Health Plan, Blue Cross Blue Shield and TRICARE to help cover health care costs, Czarobski said.

They’re at Cook Children’s frequently, but the family and others in North Texas are concerned about possible disruptions to their health care coverage, after state lawmakers didn’t take action to address the way the state awards Medicaid contracts.

Texas’ Health and Human Services Commission announced in March 2024 that it was not awarding its multibillion dollar Medicaid contract to Cook Children’s Health Plan. Texas pays insurance providers, like the Cook Children’s Health Plan, who administer health insurance to children and pregnant patients on the Medicaid STAR and CHIP programs.

Instead of going to Cook’s Health Plan and a handful of other similar plans in Texas, the Health and Human Services Commission awarded the contract to Aetna, United Healthcare, Molina, Blue Cross and Blue Shield for Tarrant County and five neighboring counties. Also excluded were health plans associated with Texas Children’s Hospital in Houston and Driscoll Children’s Hospital in Corpus Christi.

The contract award for STAR Kids, which provides Medicaid benefits to children and adults 20 and younger with disabilities, including Preston, is on hold by court order.

Lawsuit over Texas’ Medicaid contract

Cook Children’s Health Plan and the other children’s hospital-associated health plans sued — a legal fight that was paused as the Texas Legislature convened this year. The judge had set a hearing for after the legislative session in order to give lawmakers the chance to address the contracting issue.

A group representing the private insurance companies has made assurances that the transition will be smooth, but families said wondering what will happen with their health coverage has taken a toll on them.

The unknown is scary, said Czarobski, who lives in Lake Dallas.

“It’s a heavy burden to carry, of not knowing,” Czarobski said. “It is a constant worry, because I want the best care for him.”

Despite pleas from Cook Children’s, the state lawmakers didn’t intervene in the dispute, though several related bills were filed. Cook Children’s had warned of “dire consequences” for 125,000 children and expecting mothers in plan’s Tarrant County service area if lawmakers failed to take action.

“Cook Children’s is deeply disappointed that Texas lawmakers failed to pass crucial legislation that would have prevented the most significant disruption to the families receiving Medicaid benefits in 25 years of managed care,” the hospital said in a statement. “This essential reform aimed to address how the Texas Health and Human Services Commission (HHSC) awards contracts for its STAR and CHIP programs.

Despite the legislative session ending, our commitment to the 125,000 Tarrant County area families and children who depend on Cook Children’s Health Plan (CCHP) and our Promise remain unwavering. We will now continue our fight for them in court.”

Meanwhile, families are in limbo, wondering what’s next for their health coverage.

The legislative process ends. Cook Children’s legal battle continues.

The state and the children’s hospital-associated health plans entered the Texas legislative session expecting state lawmakers to wade into the debate.

A court case was placed on pause as lawmakers met. Texas Health and Human Services, which awards the contracts, referred the Star-Telegram to the court filing when reached for comment.

Cook Children’s Health Plan argues the state’s process to select which companies to hire was flawed, according to a June 20, 2024, court filing. The state didn’t give preference to plans that have a track record of success, instead favoring “large, for-profit national companies, some with checkered compliance histories and none with Cook Children’s’ record of providing quality, best-value care to needy children and expectant mothers in its community,” the document reads.

The state has denied allegations from the children’s hospitals.

Several bills were filed related to the process for awarding Medicaid contracts, but none gained traction.

Lawmakers were being asked to “change the rules in the middle of the game,” said Sen. Lois Kolkhorst, a Brenham Republican who chairs the Senate Health and Human Services Committee, in a statement.

“While many lawmakers — including myself — listened to both sides intently, in the end, a consensus emerged in both chambers to not move any legislation that would thwart the awarded contracts,” Kolkhorst said. “Instead, the consensus seemed to support the position that the current procurement should move through the court system.”

Lawmaker intervention could be precedent-setting and lead to legal challenges, she said.

“The long-term impact of elected lawmakers intervening in the selection process for new awardees could affect future contracts, such as those with the Texas Energy Fund or for highway construction,” Kolkhorst said. “In this scenario, any bidder could petition the legislature to choose different winners and losers in state procurement.”

Sen. Chuy Hinojosa, a McAllen Democrat who worked on legislation related to awarding Medicaid contracts, said the children’s hospitals seemed to lack a unified strategy to address their concerns.

Allegations that Texas Children’s was providing gender transition-related health care and that Superior Health Plan, a Medicaid provider in Texas, was spying on Texans also sidetracked lawmakers, Hinojosa said.

“I was disappointed this session that the legislature did not take action on this situation, and the way the commission mishandled the procurement process,” Hinojosa said.

Lawmakers are headed back to Austin for a special session that begins July 1. Ultimately it’s up to the governor, but legislation related to the children’s hospitals isn’t a likely agenda item, Hinojosa said, ahead of Abbott’s special session announcement.

“He’s the one that makes that call, but to do that, there would have to be a consensus, not only among the children’s hospitals but also the leadership and legislators, as to what would be the proper solution to make sure that our children’s hospitals continue providing the services they have provided for years to families in their respective regions,” Hinojosa said.

Parties in the lawsuit have until June 30 to submit an update on the case’s status to the appellate court overseeing the case, according to Cook Children’s and the Texas Managed Care Alliance, an organization representing Aetna, Blue Cross Blue Shield, Humana, Molina and UnitedHealthcare.

Aetna and Blue Cross Blue Shield directed the Star-Telegram to the group for comment. Spokespersons for Molina, UnitedHealthcare, Driscoll and Texas Children’s did not return emails seeking comment.

The court case could go to trail in a state district court later this year.

As for lawmakers, something could be done in Austin come 2027.

“When the lower court makes a decision, and the appeals process is exhausted, the Legislature will have a clearer picture of what aspects of state law should be clarified,” Kolkhorst said. “It is possible that the resolution will come in advance of the 90th Legislative Session, at which time it can be properly addressed.”

Cook Children’s families wait and worry

Kolkhorst and a group representing the private insurance companies that would take over the contracts are confident families would still be able to get the care they need with the new insurers at the helm.

“Texas will continue to ensure that our children’s hospitals operate as Medicaid providers and will maintain enhanced rates for those Medicaid services,” Kolkhorst said. “These hospitals will still be able to serve all of their Medicaid patients, albeit with a health plan provided by a different organization, if this contract is executed.”

Anyone who’s in the Medicaid program will continue to be able to go to Cook Children’s, said Laurie Vanhoose, director of the Texas Managed Care Alliance.

The children’s hospital is in network for UnitedHealthcare, Molina, Blue Cross and Blue Shield and Aetna, she said, noting that insurers already have extensive experience operating Medicaid in Texas.

There are protections and processes in place to make sure there are no gaps in care during the transition and to ensure patients have access to their doctors, Vanhoose said.

“The hospital will not be impacted,” Vanhoose said. “Every Medicaid member will continue to be able to go to Cook Children’s Hospital System, if that’s where they’re going today, or if that’s where they want to go in the future. We have very, very specific state and federal regulations around transitions of care and continuity of care to ensure continuity of care.”

But families are worried.

Lizdelia Piñón of Crowley has four children with special needs who use Medicaid at Cook Children’s, including 12-year-old triplets with cerebral palsy and other health conditions that require medical attention and are on STAR Kids.

Her oldest, 20-year-old Gabriel, is a jokester. Felicita, the oldest of the triplets, is an advocate and leader. Frida, her identical sister, is the artist of the bunch — quiet, introspective and nurturing. Santiago, the youngest triplet, is smart. Piñón describes him as her philosopher.

She wishes legislators had taken action during the legislative session.

You never know when your family will need Medicaid, especially the programs provided by non-profit providers like Cook Children’s Health Plan, Piñón said, praising its efforts to help coordinate the family’s complex medical needs.

She worries about having to check with each of her kid’s 15-some doctor to make sure they’d still be in network and waiting for doctors to be moved to the proper plan if not.

“They try to make the process so much easier, and I’m terrified of having to deal with the private insurance managing the Medicaid and what a nightmare that’s going to be for our family and lots of families like ours,” Piñón said.

The waiting itself is creating problems for the North Texas family. They’re trying to get a new wheelchair for Felicita come September, but the months-long process is on hold as the family waits to see what happens with the Cook Children’s Health Plan.

“We’re kind of in limbo,” Piñón said.

It’s horrible, she said.

Preston and his mom Meghan Czarobski recently found out he likely has another brain surgery coming up. He’s had some success from the surgery in March, but Preston is still having dangerous seizures almost daily.

Having exhausted medication options, the next step is an implantation device placed in the brain to stop seizures, Czarobski said.

“I’m hoping we can get things done with having Cook’s health plan in place so he can get some relief, because it’s not fair to him,” Czarobski said. “It sucks, and that’s putting it nicely. It just plain sucks, like epilepsy sucks.”

Staff Writer Ciara McCarthy contributed to this report.

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