Twenty years ago, my son Charlie came into the world at only 24 weeks old with multiple complex health conditions — including the need for a shunt to drain fluid from his brain.
Our lives were forever changed, blessed with the gift of being parents to this miracle baby full of courage, determination and grit. But, we also faced the daunting challenges of keeping Charlie alive, and ensuring he had the very best medical care possible.
In his first two years, Charlie underwent 108 surgeries. Of those, 83 were brain surgeries. Never before had I encountered the health care system in such an up-close and personal way. Nothing could have prepared me for navigating such a complex, frustrating and confusing system.
Charlie was placed on the Medically Dependent Children Program (MDCP) at age 8 through Medicaid, the government program that provides health coverage to some of Texas’ most vulnerable citizens. In recent months, the Texas Legislature has taken a deep dive into Medicaid, holding hearings to examine whether the program is effective, valuable and accountable. As someone who has experienced Texas Medicaid firsthand, I am here to tell Texas leaders it is all those things and more. While Medicaid is not perfect, it’s an essential program that has made all the difference in the quality of life for my son and in the lives of our family members.
Before going on Medicaid, my husband and I had private health insurance that covered a fraction of the countless hours and pieces of equipment and medications that Charlie requires. The financial burden nearly broke us. While my husband worked night shifts, I worked daytime hours and we rotated caring for Charlie around the clock. We rarely saw each other, had little time for our older son and ultimately lost our house because we could not make ends meet.
When we were approved for Medicaid, the clouds started to part. We slowly began to rebuild financially – and emotionally. Our challenges were far from over, but we had the comfort of knowing that a majority of Charlie’s medical needs would be covered.
For the first several years of Charlie’s Medicaid coverage, we were part of the fee-for-service model, where the state runs the program and pays doctors and facilities for the services they provide. While it was a major improvement from only having limited private health insurance, the fee-for-service approach was not a good fit for our medical needs. Nothing was straightforward. Everything was fragmented. The left hand did not talk to the right hand. And, there was no one to call when things went wrong. At one point, when Charlie needed a new carseat, I reached a dead end at every turn. Finally, state officials informed me they needed to hear from Charlie personally to process the request. Charlie is non-verbal.
Very fortunately, about two years ago, Charlie’s care was brought into a newly launched Texas Medicaid program called STAR Kids. This program, designed specifically for medically fragile children like Charlie, is administered under the more contemporary care model that Texas has shifted to in recent years – Medicaid managed care. Under managed care, private health insurers contract with the state to run Medicaid. Here in Corpus Christi and Nueces County, Driscoll Health Plan administers STAR Kids and handles care for Charlie.
STAR Kids and Driscoll Health Plan have completely transformed the way Charlie receives care and the quality of that care. We now have a service coordinator assigned to our family, Carol, who helps walk us through every step of Charlie’s health care journey. If we hit a roadblock, Carol is one phone call away and gets to work immediately to find solutions and move things along. Today, every one of Charlie’s doctors and health providers communicates – not only with each other but with Driscoll Health Plan and everyone who plays a role in his care. Beyond doctor’s visits and equipment needs, Driscoll Health Plan works with local communities to organize events including visits to the aquarium and opportunities for children like Charlie to get out more and be active members of their community. Driscoll Health Plan also hosts quarterly town hall meetings for parents, where we can bring any questions or concerns we have and leave more informed and assured.
Under STAR Kids, Charlie may be the patient, but our family is the recipient of much more than just medical care. The Medicaid we know today has given us peace of mind, clarity and one-on-one support so we don’t feel so alone in what can be an overwhelming health care system.
Charlie’s journey, and our journey as his family, is unique. Not every Texan who receives health care through Medicaid will have our same experience. Like anything else, Texas Medicaid has had growing pains. But we have witnessed a lot of change for the better. It’s important for Texas leaders to hear from the men, women and children like us who are directly impacted by this important program.
Health care may not be perfect. It can and should continue to improve. But Texas Medicaid is working, and our son, in his 20thyear of life, and our family – which is stronger and more optimistic than ever – is a testament to that fact.