Children in Jeopardy: The Piñon Family's Story

By Kaley Johnson

The state of Texas is trying to end a program that allows thousands of children to thrive.

That’s the message Liz Piñon wants to send to state leaders trying to end the Cook Children’s Health Plan. Liz’s children are among the 8,000 medically fragile kids on the health plan; her 12-year-old triplets and 19-year-old son have various medical needs and have relied on CCHP for six years.

In March, the Texas Health and Human Services Commission announced plans to deny Cook Children’s a new contract for the Medicaid STAR and CHIP managed care programs. In June, Cook Children’s took legal action against the state for its decision to cut funding for the program, which has provided care for more than 20 years.

“If they don't have a child like we do, I feel like all families have to know that they can be in this position from one minute to the next,” she said. “And if they do, you know, having a system like the Cook Children’s Health Plan is such a godsend.”

For Liz’s family, paying for medical needs was like paying for another mortgage.

Liz’s triplets, born at 25 weeks, each have their own medical complexities requiring four or five specialty medications. Liz initially had to stay home with the kids because no daycare would take them due to their medical needs. The financial cost of medication, medical care and other specialty needs quickly added up.

“It was such a nightmare doing private insurance for our kids,” Liz said. “We were living check-to-check. Even though my husband had a white collar job, we were in the food lines the last week of the month to get vegetables to puree.”

Six years ago, everything changed when the family applied for care with Cook Children’s Health Plan. When Liz called to apply, the nurse she talked to knew the kids’ doctors, the equipment they might need and the therapists they might need now and in the future. This was different from talking to a private insurance agent who likely had no connection to Liz’s family, the doctors they saw or the community care available to them.

With Cook Children's Health Plan, the family has access to specialists, therapists and various programs under the same roof as opposed to having to navigate multiple practices for each medical need.

For almost eight years, the family saw the same pediatrician at Cook Children’s. While the doctor is no longer at the hospital, it made all the difference to have a physician who developed a relationship with the kids and the family as a whole.

“It's not easy being a Latina with special needs kids in Texas, right? I feel like I was always scrutinized a whole lot more,” Liz said. “So it was just nice to know that this doctor knew my family, knew everything I did for my kids, right? And was a voice for our family.”

Cook Children’s Health Plan also connects families with a service coordinator, who helps coordinate all the specialized care the family needs. In Liz’s case, the coordinator not only connected the family with specialists and set up appointments, but she also ensured the triplets could attend daycare. This alone changed Liz’s life; Liz has been able to serve as an expert on the Department of Education Committee because she does not have to stay home 24/7.

As young tweens, the Piñon triplets are thriving. One of her daughters participated in a wheelchair dance performance in Los Angeles this summer. Her other daughter, who has severe anxiety, was able to perform on a stage in Disney with her choir.

“Anyone that sees my kids says, ‘Oh, they look fine,’” she said. “They don't know all the thousands of appointments, thousands of hours of therapy, thousands of phone calls that have been made for them to be thriving and doing as well as they are.”

The Cook Children’s Health Plan has allowed Liz and her family to thrive. That may not have been the case under a different insurance plan, like the ones the state plans to fund instead. Without Cook Children’s Health Plan, thousands of kids may lose that same opportunity to truly thrive.