New federal law could benefit children with medical complexity

Texas Politics

AUSTIN (Nexstar) — When the Children’s Comprehensive Care Clinic was established in 2012, leaders behind the project had set goals in mind: to improve patient care and reduce the burden on families who have children with medical complexity.  

“Families spent less time in the emergency department, decreased their length of stay in the hospital and decreased the number of hospitalizations,” said Dr. Rahel Berhane, the medical director of the clinic. “And the outcome of measures for care were all positive.” 

Berhane says the clinic, which is part of the Ascension Dell Children’s Medical Center, currently serves around 700 patients — and most are children who have medical complexities. 

“There are a number of specialists who are needed to keep them well, some of whom have such rare conditions that the kind of expertise they need is only found in expert centers outside of the state,” she said. 

She says four-year-old Rowan Holler’s story is an example of how their model has worked. Holler has a rare skin disorder called Epidermolysis Bullosa, known as EB for short.  

“Basically her skin is not attached to her body and it affects her internal organs,” said her mother, Kate Holler.  

Rowan loves to go horseback riding and her mom describes her as “resilient.”

“That’s one of her absolute favorite things to do and it’s just a moment when she can not have to deal with the pain and frustration of her disorder,” Kate said.

The Holler family travels to Denver every six months to see a specialist there. They work locally with Dr. Adam Rosenbloom, a complex care pediatrician at Children’s Comprehensive Care Clinic. Rosenbloom is in constant communication with the family and Rowan’s team of specialists. 

“I think of a complex care pediatrician as being the coach of a team and really bringing all of these components of the team together to make sure that everybody’s working towards that same goal of providing value and improved outcomes for those children with medical complexities,” he said. 

A new federal law could provide other kids that have medical complexities with a model like what’s taking place at the Children’s Comprehensive Care Clinic. The Advancing Care for Exceptional (ACE) Kids Act of 2019 was signed into law this spring as a part of a larger package of Medicaid legislation.  

“It establishes a medical home — a complex care pediatrician that can have more time and more resources to be able to coordinate that care with all of the specialties that they have,” Rosenbloom said. “It’s really looking at these children as a whole and caring for them as a population at all times and really being accountable for the outcomes that they have.” 

During a press conference at Dell Children’s Medical Center highlighting this law, Congressman Roger Williams, R-Texas, said he’ll be meeting the Hollers later this month. He praised the legislation for its potential to reduce cost while providing better services to patients.

“We can do things from bipartisanship in Congress,” he said. “It’s hard to believe that, but this is evidence that we can do it.” 

Kate hopes other families can benefit from this law, saying it’s been transformational in Rowan’s care. 

“It makes such a big difference in Rowan’s care that everybody is able to coordinate with those specialists that we see,” she said. “A regular pediatrician’s office that we were with before the comprehensive care clinic just couldn’t handle it and really all they could say was, ‘We’re sorry.’” 

States have the option to participate starting on Oct. 1, 2022.

According to the Children’s Hospital Association, states would opt-in by submitting a state plan amendment to the Centers for Medicare and Medicaid Services for approval. A spokesperson explained that states with Medicaid managed care — like Texas — may choose to implement the law with health homes and health plans working together to provide health home services to children with medical complexity. 

Copyright 2019 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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