Long waits, few providers and coverage gaps: inside Texas Medicaid program for children with disabilities

AUSTIN (Nexstar) — A March study on Texas Medicaid revealed a host of issues affecting access to healthcare for some of the state's most vulnerable children.

The study, commissioned by non-profit Protect TX Fragile Kids, evaluted families who receive care for their children under the Texas STAR Kids program. It's Medicaid-managed care for children and adults under the age of 20 with disabilities.

Cheryl Lingenfelter's 10-year-old son Nathan is 100% dependent on her and caregivers after an anoxic brain injury left him with severe disabilities. His healthcare is covered under the STAR Kids program, but Lingenfelter said it's been a challenge finding Nathan the care he needs because of how the program operates.

"Finding a good medical support team has been crucial in keeping him alive," she said. "I don't have a choice of just going anywhere who accepts Medicaid, I have to find a place that accepts an insurance company."

Under the STAR program, Texas and the federal government pay billions a year to insurance providers, in this case referred to as managed care organizations, that work as a liaison in between doctors and patients.

Nexstar reached out to Superior Health Group for comment on this study, but did not immediately hear back. The group serves as the statewide managed care organization for STAR families.

Because the MCOs are responsible for deciding what care get covered, Lingenfelter said she and other STAR Kid families have difficulty getting all of the, often costly, services they need paid for.

She said it has been a battle with MCOs trying to get physical therapy appointments covered for Nathan, who cannot walk, because the insurance companies deemed he is not making enough progress for that care to be worth the cost on their end.

"He's not gonna walk, that's the reality I live with. His brain is severely damaged, it's not going to happen. But that does not mean he doesn't need therapy," Lingenfelter said. "It's hard when we're constantly getting denials, or being told that 'you don't need therapy twice week, you'll only need it once a week.'"

Legislative proposals to improve STAR Kids

Hannah Mehta, founder of Protect TX Fragile Kids, has a son with a disability and has since devoted herself to advocating for children with disabilites in the Lone Star State.

"STAR Kids right now is a program that doesn't serve the complex population very well. Children who have complex medical needs require a different level of care," she said. "There is a whole sub-specialty team that's required to keep them stable. And right now under the current program, that is very difficult to access."

A 2019 investigative series by the Dallas Morning News sparked bipartisan legislative calls to fix problems in the program. Mehta said some progress has been made in the last two legislative sessions, but still names a host of bills she wants to be passed this year.

HB 4823 by Rep. Tom Oliverson, R-Cypress, would help ensure STAR patients have continuity of care and would establish a review system if and when families are denied healthcare coverage.

"These kids have complicated issues, complicated needs, and a lot of times their care coordination is really difficult, Oliverson said. "Managed care, doing the best that it can, has not proved to be the best mechanism as far as connecting these kids with the resources that they need and their families."

The Republican lawmaker, who is also a doctor, said the goal is to eliminate the barriers and red tape these families have to cut through.

"In their case, a barrier or delay and access to care could result in a hospitalization very easily. So it is time is of the essence for these kids," Oliverson said.

Mehta said if Texas wants to claim it is a state that values life, it needs to show it cares for some of its most vulnerable.

"Texas can do better and we believe that there's a huge opportunity in this legislative session to make some improvements that would help struggling families," she said.

PTFK has a list of priority legislation that the group believes with help STAR families, which includes a number of Senate and House bills, including Oliverson's.

His bill was referred to the House Human Services Committee. It has yet to receive a hearing.