Children in Jeopardy: MJ’s Story

By Ashley Antle

For years, Breanna Hernandez spent her days driving her 10-year-old son, MJ, from appointment to appointment. They spanned the Metroplex from Fort Worth to Dallas to Waxahachie and points in between. Visits with specialists and hours upon hours of intense physical, occupational, speech and feeding therapy helped MJ reach the point where he now attends an applied behavior analysis (ABA) center, at which he receives multiple therapies, and continues with outside therapies as well.

“The last two years, we’ve had a more consistent schedule,” Hernandez said. “I feel like we are finally able to just breathe and live a little.”

However, a decision by Texas’ Health and Human Services Commission (HHSC) threatens to upend their lives once again. Despite having a 20-year record of excellence serving children and families in Tarrant County, HHSC has announced plans to not renew Cook Children’s Health Plan’s contract for managing Texas’ STAR Medicaid and CHIP programs in its service area, starting in Sept. 2025. Instead, the commission plans to award contracts to four national, for-profit insurance companies. The decision, made through an unfair and flawed re-contracting process, places more than 125,000 low-income families and children at risk of losing vital services and interrupting long-established relationships with their physicians. 

MJ is one of the more than 8,000 medically fragile children covered under Texas’ STAR Kids program by Cook Children’s Health Plan. While his health care coverage is not yet impacted by HHSC’s decision, his story illustrates the important role Cook Children’s Health Plan plays in the lives of its Members and their families. More importantly, if CCHP loses the STAR Medicaid and CHIP contracts, the future of the STAR Kids program at CCHP could become uncertain.

Breakdown of STAR, STAR Kids, and CHIP in Texas:

All three programs provide health insurance for children in Texas.

• STAR (Children's Medicaid): This is for children from low-income families who don't have complex disabilities.
  
   
• STAR Kids (Medicaid Managed Care): This is for children with complex disabilities up to age 20 who qualify for Medicaid. It offers extra support services beyond basic Medicaid.
  
   
• CHIP (Children's Health Insurance Program): This is for children whose family income is too high for regular Medicaid, but they can't afford private insurance.

MJ’s Early Start

Born at 27 weeks, MJ spent 190 days in a neonatal intensive care unit (NICU), including Cook Children’s Medical Center. Today, he lives with a variety of health issues that require him to see a number of specialists, like neurology, pulmonology and gastroenterology, to name a few. All of his current specialists and many of the therapies and services he needs are covered through Cook Children’s Health Plan, of which he is a member. This includes the STAR Kids Medically Dependent Children’s Program that provides in-home and community-based long-term services and supports for children with complex medical needs.

Choosing Cook Children’s Health Plan was a no-brainer for Hernandez.

“Cook Children’s is like our second home. It’s who we know and trust,” she said. “His records are there from the beginning, and all the specialists have access to them in one spot, including Amber, our case manager at the health plan.” 

Yes, Hernandez is on a first-name basis with her CCHP case manager. That type of connection, where everyone feels like family, is central to Cook Children’s culture. It’s also one of the benefits of having a non-profit, community-based health plan where the people who manage your child’s care live in the area, too. They know first-hand the resources in and near Tarrant County and how to help parents and caregivers navigate them. They understand the unique needs of local children and care deeply about the health of the community.

“The Health Plan has people that will find the information or resources you need and try to get that to you,” Hernandez said. “They are able to do the research about programs that us parents have no idea they exist. Because we do a lot. We’re all the things for our kids: caregivers, parents, therapists, doctors, nurses, advocates all while trying to navigate this life."

And then there’s the financial burden made easier by Cook Children’s Health Plan. Hernandez estimates the cost for MJ’s care since birth, which includes visits, hospital stays, surgeries, therapies and medical equipment, is well over $4 million and counting. She says managing that without CCHP would be unimaginable.

Starting From Scratch

If HHSC’s decision stands, Hernandez’s life will once again become even more complicated than it already is raising a child with special needs. As will the lives of thousands of special needs parents like her, especially the parents of the more than 170 ventilator-dependent children currently covered by CCHP.

For Hernandez, it would mean starting all over, just as life got a little easier.

“I don't even want to think about it because it causes fear, anxiety and added stress,” she said. “It would probably turn our world upside down just thinking about how to start all over getting established with a new plan. Is this new plan going to be accepted by the doctors that I've already established care with since he was a baby? These doctors have seen him since he was in the NICU.”

If she is forced to make a change, Hernandez worries about how a new managed care provider and potentially new doctors will affect MJ’s continuity of care. Will they understand MJ’s unique needs? Will she get timely answers to her questions and receive medications on time?

These are the questions burdening her and fellow parents of children with special needs that she wants HHSC and Texas lawmakers to consider.

“With our kids’ health, our world is constantly changing. We don't get a lot of the ‘normal’ or ‘constants’ in life,” she said. “What if you were put in the position where your life was made more complicated than what it already is for no good reason? With our kiddos that have special needs, this is a whole other world that nobody gets to see, unless you live in it each and every day. If you haven't spent time with a child or an adult that has special needs or different abilities, please do. You'll definitely be shaken by all of the different things that our families experience in our homes and out in the ‘normal’ world. It would definitely be an awakening.”

For now, Hernandez holds on to hope that HHSC will reverse their decision for the STAR Medicaid and CHIP contracts before the discontinuation of CCHP services in September 2025.

The procurement process for MJ’s coverage under STAR Kids begins this summer. Only time will tell if HHSC will protect MJ and the thousands of children and families who rely on CCHP. In the meantime, Hernandez takes every opportunity to speak out for those who can’t speak for themselves.