Lori Martin loves living in the Houston Heights. She and her husband Neil are raising two children in the community: a daughter, 3-year-old Quinn, and a son, 8-year-old Will. Will’s school is just a few blocks from their home, which is helpful as he is what healthcare professionals call “medically fragile;” he is a child at constant risk of a life-threatening health crisis.
Will Martin has Mitochondrial Disease, or Mito, a rare, inherited disorder of the mitochondria, a substance found in almost every cell of the body. Symptoms include loss of muscle coordination, vision, speech and hearing problems, heart, liver and kidney disease, and neurological issues involving activities such as walking and swallowing.
Like other disabled children in Texas, Will’s care fell under the state’s Medically Dependent Children’s Program, a Medicaid, fee-for-service waver program. MDCP allowed the Martins to keep Will healthy and at home, while helping them meet the challenges faced by a child with Mito. Under the waiver program, they have amassed a chorus of Mito specialists, care providers, and pharmacies to keep their son’s lifesaving medical needs flowing. Then, that changed.
“In November, 2016, state legislators took the Medicaid fee-for-service program away, and replaced it with the STAR Kids program – a collection of ten, private, for-profit, Managed Care Organizations, or MCOs. The transition has been frightening, and has put some children at great risk,” stated Natalie Gregory, Director of Public Relations for “Protect TX Medically Fragile Children,” a nonprofit agency raising awareness for the state’s severely disabled kids.
Lori Martin has witnessed this situation personally. “We are lucky in Harris County, there are so many fine medical professionals here. That is not the case throughout Texas. Still, after the transition to STAR Kids, Will went three weeks without a critical medication to keep him well. We have friends with fragile kids who have not received medications at all, or supplies such as feeding tubes or breathing machines, which means a child can’t eat or breathe. I just don’t know what lawmakers were thinking when they did this,” Martin stated.
“Once you start looking at the details of the program, it’s really hard to understand,” Gregory agreed. “Lawmakers say that there was no financial incentive for the change, but an MCO is a for-profit agency and, like any business, an MCO protects profits by cutting services, and denying access. The transition has caused many of our kids to suffer greatly.”
The STAR Kids program addresses the needs of about 180,000 disabled children in Texas. Of these, only about 3 percent qualify as medically fragile. These are the children who cannot forgo medications or care without risk to their lives – they are the most vulnerable.
“There are only 5,600 kids in the medically fragile group,” Martin stated. “For these children, we should go back to the waiver program. I feel that legislators have put a dollar amount on the value of my son’s life; a dollar amount on the lives of each of Texas’ most vulnerable children.
This new program is failing our medically fragile kids miserably.” How can you help? Martin suggests that readers call and write both Texas house and senate legislators to register concern.