We’re all counting down to some event. There are 18 days until the 2016 Presidential Election. There are 65 days until Christmas. Brownwood resident, Alex Garcia, is counting too. There are only 11 days to stop a legislation that will put 5,600 seriously ill Texas children in danger of losing their medical care, and potentially ending their lives. One of those children is his three-year-old daughter, Addie.

Addie was born with Congenital Dyserythropoietic Anemia Type 1, or CDA Type 1. CDA Type 1 is characterized by severe anemia, and often an enlarged liver and spleen. This condition causes the body to absorb too much iron, which builds up and can damage tissues and organs. People with CDA Type I can also be born with skeletal abnormalities. In her three short years, Addie has received over 33 transfusions, nearly one for every month of her life. To date, there are only 200 reported cases of CDA Type 1 worldwide. Because of an additional significant genetic deviation, Addie’s particular diagnosis is the only reported case in the world. To read more about Addie, visit Addie’s Journey Facebook Page.

Addie, along with thousands of other Texas children with extreme special needs, is part of Medicaid’s Medically Dependent Children’s Program (MDCP). This waiver program was established by Medicaid to meet the needs of disabled children whose medical bills can total hundreds of thousands of dollars or more each year for life-saving treatments, medicines, and equipment. The majority of families enrolled in this waiver program also carry private insurance, pay out of pocket for expenses, with both parents working full time jobs, but simply don’t make enough money to keep their children alive without financial assistance from the Medicaid program. Without the additional insurance coverage of the MDCP, these Texas families would go bankrupt simply trying to provide for their child’s significant medical needs. MDCP is secondary insurance coverage for over half of children enrolled in the waiver program: this means that primary private insurance covers the vast majority of the kids’ care, and Medicaid only picks up the remainder. This allows families to keep their jobs and maintain financial stability rather than becoming fully dependent on additional state programs.

Traditional Medicaid, which is what the MDCP is now, is “fee-for-service,” meaning children enrolled in the program can go to any doctor that accepts medicaid to receive necessary medical care. The doctors receive payment first from the child’s primary insurance, if the child’s family has it, and then any remaining balance is paid by the state program.

The Affordable Care Act, commonly known as Obamacare, enacted by President Barack Obama on March 23, 2010, began to change the traditional Medicaid system. Under The Affordable Care Act, doctors had to be registered within the Medicaid program, adding a considerable amount of paperwork and a complicated registration process for doctors nationwide. Unfortunately, under this new process, Medicaid will no longer reimburse doctors not currently registered with the Medicaid program, leaving many doctors in an uncomfortable position of turning away patients.

STAR Kids is a new Texas Medicaid managed care program born from Texas legislation efforts to overhaul Medicaid under Senate Bill 7 presented during the 83rd Texas Legislative Session. Senate Health and Human Services Chairwoman Jane Nelson’s signed bills to overhaul Medicaid in an attempt to curb Medicaid fraud. The idea is to only pay Medicaid-registered doctors for services.

On November 1st, 180,000 children within the Medicaid system will be switched from the tradition fee-for-service Medicaid which allows families to choose their doctors. For the majority of these families, the switch will not negatively impact their care. But for families like the Garcia’s and Addie, who need extremely specialized doctors which may not be registered within the Medicaid system, it could be disastrous.

“I think one of the things they believed is it would help with cost, and help parents better manage the health of their child, but really what it’s done is tied the hands of families with medically-fragile children,” says Garcia. “The biggest thing about this whole thing is getting the quality of care a child needs. These are the sickest of the sickest kids in the State of Texas. With this new program, we might not be able to take our kids to see the doctors who can help.”

Recently an advisory committee formed by Health and Human Services made the recommendation for a 12-month delay in the implementation of the new Star Kids program, specifically for those enrolled the waiver programs. The committee discovered thousands of special needs children with extreme medical diagnoses could potentially lose access to the doctors familiar with their unusual cases. Health and Human Services has opted to move forward with the implementation of the Star Kids program, against the recommendation of the advisory committee.

Watching Health and Human services disregard the recommendation of a committee formed to protect their children leaves parents like Alex and his wife Jennifer wondering why members of legislation won’t aid these 5,600 Texas children facing life-threatening illnesses.

“You have a program that is about to put very sick kids into a situation that limits their care options. There are children’s lives at stake.”

Alex Garcia is asking his community to reach out to Texas legislators and urge them to delay the Star Kids program.

Individuals can call Senator Jane Nelson’s Office in Austin: 512-463-0112 or in Grapevine: 817-424-3446. Callers can ask to leave a message for Senator Nelson. Staff will take the caller’s name and zip code. Callers can ask the Senator to honor the Star Kids Advisory Committee’s recommendation to delay by 12 months the implementation of the managed care program for the medically fragile waiver population in order to protect some the most vulnerable and fragile children in our state.

For other ways to help, visit protecttxfragilekids.org. The site includes ways to email legislator offices, and lists of phone numbers for legislative committees and other offices.