Parents fight to delay change for Texas medically-fragile children

News 8's Jason Whitely has more.

SOUTHLAKE -- Christina Gregory moves around her home as fast as any 2-year-old, but the little girl’s body won't do one thing.

"When she was born she didn't breathe -- at all," said mother Natalie Gregory.

Christina still cannot breathe on her own. A ventilator keeps her alive.

She has a rare genetic disorder called congenital central hypoventilation syndrome. Worldwide, only 1,000 people have it, Natalie said.

"Her lungs developed properly. Her brain works fine," she explained. "There's a nervous system disconnect."

Christina is among 5,600 children in Texas who are medically-fragile and rely on Medicaid.

Nov. 1, 2016, a new state law goes into effect and switches these kids to a managed care insurance program.

The state’s Health and Human Services Commission created a tailored managed care program for 180,000 children and young adults under the age of 21 who have disabilities after lawmakers agreed to it in 2013. In 60 days, those Medicaid clients will move into the new program, which is called “STAR Kids” for medical care.

Patients in STAR Kids will join more than 80 percent of the Texans on Medicaid already in managed-care programs, the state said. Problem is, Natalie said, that is likely to put some highly-trained specialists out of reach for medically-fragile children.

"She's basically going to have to settle for second-tier care. The best of the best specialists aren't necessarily jumping through hoops to sign up," said David Gregory, Christina’s father.

So far, only two of her 12 doctors have joined, he added.

Health and Human Services said all existing doctors are encouraged to sign up for the new program, but obviously don't have to, in the end.

So, the Gregorys are among those asking the state to delay this for a year for the state’s 5,600 medically-fragile children.

When the legislature reconvenes in January, families hope to get medically-fragile children exempted from the law.

One local state representative has voiced his support.

“As a legislator and father, I truly appreciate these parents openly sharing their fears and concerns about the transition from the Medically Dependent Child Program to STAR Kids,” said State Rep. Tan Parker (R-Flower Mound). “Protecting their continued access to health care and specialty providers is critical, and I have been in contact with the appropriate officials on this matter. It is my perspective that we will work diligently together to ensure these inspirational Texans have the necessary health care protections needed to stay as healthy and vibrant as possible.”

For more information about the new managed care program, click here. To learn more about a parental group in favor of protecting medically-fragile children, click here.

Copyright 2016 WFAA


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