New report outlines barriers to care for Texas children with severe disabilities and medically complex conditions


Boram Kim


Findings from a new study on Texas Medicaid released last week revealed numerous systemic issues that are having a compounding negative effect on access for beneficiaries, ranging from the state’s workforce shortages to Medicaid policies that target children who age out of STAR Kids into STAR+PLUS. 

Commissioned by Protect Texas Fragile Kids (PTFK), the study analyzed and aggregated hundreds of thousands of online constituent engagements across the state and outlined a broad range of regional issues facing families and patients with severe disabilities and complex medical needs. 

The study revealed that systemic issues within the state’s Medicaid managed care organizations (MCO) were severely impacting access to care for medically complex Texans. Those issues ranged from disparate MCO policies and processes to the state’s lack of capacity and services for pediatric care.

A briefing to lawmakers on March 27th revealed that provider shortages in remote parts of the state were causing families to travel long distances to more densely populated areas or even out of state in some instances to access services. This exacerbated other findings of queues and waitlists related to network inadequacy and provider shortages that create barriers to care.  

Dean Browell, PhD, chief behavioral officer of the research group Feedback that conducted the study, highlighted transition points or changes to a beneficiary’s status—from a new diagnosis or aging, for example—as a frequent barrier to care. He said those issues along with policy knowledge barriers were creating situations where families were losing access to the networks of care they had built over time. 

“Institutions such as Texas Children’s, where someone may finally get this incredible team all working together for the care for their child, and then turning 17 or 18 [years of age], suddenly find that Texas Children’s will not provide that to them anymore,” Browell said during the briefing.

“So suddenly they are now back at square one of having to do cold calls to [doctors], try and piece together this care, find out how far they’re gonna have to go for each portion of care. And guess what, there’s another transition period coming up [at age 21]. So then [they] actually have to go through that transition period twice, after finally actually hitting a rhythm prior to that.”

PTFK works with thousands of families statewide who have children and loved ones with significant disabilities and complex medical needs, everything from ultra-rare and undiagnosed disorders to severe intellectual or developmental disabilities and autism. 

This population represents less than 1% of Medicaid and CHIP enrollment but consumes 40% of the Texas Medicaid budget. The state’s Medicaid managed care program serves these individuals, many of whom require an institutional or hospital care in order to remain in the home and community, through STAR Kids, STAR+PLUS, and waivers for home and community-based services (HCBS). 

In an interview with State of Reform, PTFK Executive Director Hannah Mehta said the data from the study reinforced what the organization already knew—the existence of serious challenges with access to care and network adequacy for this vulnerable population. The state’s large geographical area, rural care deserts, and limited specialty medical care centers pose challenges to access, particularly on the pediatric side.

Over the course of the pandemic, the families she represents experienced decreases in mental health, lower levels of access to private duty nursing and certain hospital outpatient and limited stay supports, and continued supply shortages for things like medications, formula, and home medical equipment. 

“In Texas, ‘waitlist’ is often used as a term to apply to waiting for access to home and community-based services,” Mehta said. “But what the scientists found when sifting through all this data is that term is often also applicable to access to services even once you’re in those programs and have coverage under those programs. So that might mean waitlists for access to subspecialty care, therapies, or certain types of home services like private duty nursing, which are really critical to this population. 

Sometimes it’s [a waitlist] for access to certain medical centers. So across the board, one of the top findings was that these waitlists exist not just prior to receiving coverage, but even after you have access to that coverage.”

PTFK has been working with lawmakers over recent sessions to develop patient protections and reform care models, which Mehta says are not designed at both the policy and capacity levels to meet the needs of these children. 

The organization is advocating several priority bills advancing through the legislature that address some of the concerns, including House Bills 4541, 4823, and Senate Bill 2145

HB 4541 would create a pilot program providing comprehensive care to children with complex medical needs through an alternative payment model. HB 4823 and SB 2145 would establish procedures for conducting medical reviews aimed at protecting Medicaid patients and their benefits. 

The legislature will also decide whether to continue the state’s current statewide prescription drug formulary for the Medicaid population, which sunsets this August. HB 1283 would eliminate the sunset provision to retain this centralized formulary. Access to drugs on the formulary is vital to protecting the health of medically complex individuals. 

The organization is also focusing on the state’s broader fiscal policy that addresses critical healthcare workforce needs. There is a $32.7 billion budget surplus this cycle and both the House and Senate have proposed base budgets of $289 billion, $130.1 billion of which would come from general funds. Appropriations in the budget bill for health and human services this session total $97.36 billion over the biennium, $41.5 billion of which would come from the general revenue. 

PTFK is advocating for rate increases for private-duty nursing and personal care attendants related to HCBS, provisions that were initially part of the budget but have since been substantially cut or removed.

“I think one of the interesting findings that came out of the data study was talking about the system in general and the way that it works,” Mehta said. “It was a quote from a physician actually, who said that they really feel that there is ‘deep systemic rot’ within the Texas Medicaid system.

And that’s discouraging to hear for families who rely on these life-sustaining services. It’s something that is literally a true safety net force for thousands of families across the state. And so we hope that lawmakers will take the opportunity this session to help address some of those issues and put some improvements in place to better use our tax dollars more effectively.”