Heather Patterson knows the five-hour drive from her home in Odessa to Fort Worth can be hectic. But, she’s willing to make the frequent trip to take her 5-year-old daughter, Emma, to Cook Children’s Medical Center.
Emma was diagnosed with KCNT1-related epilepsy shortly after she was born. Because of her extensive medical needs, she has been receiving care from Cook Children’s for nearly six years.
What is KCNT1-related epilepsy?
Children with KCNT1-related epilepsy typically experience seizures that start early in infancy and sometimes shortly after birth. Seizures typically consist of shaking in one part of the body that may spread to the entire body. About 3,000 cases have been identified globally.
Source: Children’s Hospital of Philadelphia
On April 18, Patterson was “absolutely speechless” to learn the Texas Health and Human Services Commission is considering an option that would dismantle her daughter’s current health plan and require her to find a new one.
The agency is seeking to remove Cook Children’s Medical Center, Texas Children’s Hospital in Houston, and Driscoll Children’s Hospital in Corpus Christi health plans from the new Medicaid STAR and CHIP contracts starting in September 2025.
“My hands started shaking, and I got nervous because of the sheer fact that, where we live, there is no pediatric ICU,” said Patterson. “To think we’ve been part of the Cook’s family for as long as we have… It’s very scary.”
Cook Children’s is protesting the decision in hopes Texas Health and Human Services overturns it. The health system filed its protest March 21.
“We strongly disagree with this decision, believe it will jeopardize access to health care and could harm vulnerable children and families, and that’s why we are appealing the decision,” the health system wrote on Facebook.
Jennifer Ruffcorn, press officer with Texas Health and Human Services, said the agency cannot comment on the procurement until contracts are awarded. The agency has not set a date for finalizing the decision.
Cook Children’s appeal
Launched in 2000, Cook Children’s Health Plan provides health coverage to Tarrant County-area families with Medicaid and CHIP. The Medicaid STAR and CHIP programs cover the cost of routine, acute and emergency medical visits.
STAR is primarily for pregnant women, low-income children and some adults who cannot afford health insurance. CHIP provides care to children in families who earn too much money to qualify for Medicaid, but cannot afford to buy private insurance.
“Because of my daughter’s medical needs, private insurance was not an option for us,” said Patterson.
Texas Health and Human Services contracts with 20 managed care organizations to provide, arrange and coordinate acute, preventive and primary care, behavioral health care, nonemergency medical transportation and pharmacy-covered services to people with limited income.
In Texas, Medicaid STAR and CHIP contracts run for six years, with three two-year renewal options. After contracts have been in place for 12 years, the agency runs a new procurement. During that process, the agency issues requests for proposals, accepts bids, puts insurers through an evaluation process, and then awards the new contracts.
When the agency directed managed care organizations to start preparing proposals for new contracts in December 2022, it included new elements. Among the changes was a new scoring-and-ranking system that placed more emphasis on numerical scores rather than health care quality, community preferences, market share and historical performance.
In its appeal, Cook Children’s argues the state’s scoring rubric for contracts lacked transparency and was set up to work against regional, provider-based sponsored plans like theirs.
“(The state) wants to be sure that they are getting the best value for the taxpayer dollar, I totally understand that. But, when you use a new process that kicks out the three largest children’s health plans in a Medicaid program that is two-thirds children, something’s wrong,” said Karen Love, president of Cook Children’s Health Plan.
The decision would lead to a reduction in the number of managed care organizations that administer the state’s Medicaid STAR and Children’s Health Insurance Program. This would mark a shift toward for-profit companies, a smaller number of top-rated plans administering care, and the introduction of new national plans to regions historically served by local health entities, according to The Texas Tribune.
If the agency stands by the decision to redistribute contracts, nearly 125,000 Tarrant-area families and their children could be shifted to new insurers. Across the state, over 700,000 families, children and pregnant women would be affected.
Dell Children’s Medical Center’s health plan in the Austin area would be the only Medicaid plan in the state run by a children’s hospital.
“We have thousands of patients who are in the middle of treatment and who have long, established relationships with their docs,” said Love. “When you get a new plan, there’s the possibility that not all doctors are going to be in that network. There’s a potential for gaps in care.”
Cook Children’s appeal also points to 400 local employees, over 1,455 primary care providers and 2,550 specialists being affected by the switch in contracts.
Employees “are in a situation where they don’t know what’s going on and they’re rightfully concerned,” said Love. “If this transition happens, we’re going to take care of our employees. We’ve got time to work with them to figure out other positions within the system.”
What’s next?
Cook Children’s would likely shut down its health plan if the decision is finalized, but the hospital itself is not in danger. In the meantime, executives with the health system wait patiently to hear back from the Texas Health and Human Services Commission.
“We don’t know when we’re going to hear back,” said Love. “For us, this is not about money, Medicaid is not a high-profit business for us as a system. We do it, because we’re committed to the families in our region, so that they have a choice.”
Cook Children’s brought in over $643 million in direct offsetting revenue from Medicaid in 2022, according to the health system’s 990 tax filings. Cook Children’s total revenue that year was over $1.77 billion.
If the procurement is dropped, it would be Texas Health and Human Services’ third unsuccessful attempt to procure new contracts for STAR and CHIP managed care organizations, according to the Tribune.
Patterson plans to continue following the decision closely for the next few months. If the decision is finalized, Patterson and her family are considering relocating to a city where her daughter would be able to receive similar care. Still, the move would disrupt their lives, she said.
“Heaven forbid we have to go to Austin. It puts a lot of strain not just on us as a family, but (Emma) who struggles being transported for long periods of time,” she said. “We have other children who are in school, and my husband’s line of work, it’s not so easy for him to transfer.”
Cook Children’s advises its members to continue seeking care from doctors and other providers. Families enrolled still have coverage and their health insurance will remain active for at least the next year and a half.
David Moreno is the health reporter for the Fort Worth Report. His position is supported by a grant from Texas Health Resources. Contact him at david.moreno@fortworthreport.org or @davidmreports on X, formerly known as Twitter.
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