On Wednesday, U.S. Rep. Joe Barton, R-Ennis, presented legislation to reform Medicaid by coordinating care for children who suffer from medically complex diseases but are not located near major pediatric centers.
Present as the House heard the legislation was 7-year-old Emmy Kaighan and her family. The Plano girl suffers from acute disseminated encephalomyelitis, a disease that aggressively targeted her brain tissue. When she was 3-years-old, she woke up one morning unable to walk or talk.
She was taken to Children’s Medical Center and placed in a medically induced coma for 31 days. She had the benefit of a coordinated care system at Children’s. Thousands of other children who are diagnosed with rare disorders don’t have that luxury; they’re not located near top pediatric centers. And they often receive care through Medicaid at facilities either out of state or far from home.
And so, according to CMS data, these patients represent less than 10 percent of all children enrolled in Medicaid but account for 40 percent of all its pediatric spending. The proposal, according to Children’s spokeswoman Meagan Abendaschein, could save the government $13 billion over the next 10 years.
“Children with complex medical conditions require a unique coordinated health care delivery system. Unfortunately, the current Medicaid system doesn’t support the model that we know is best for our patients,” said Children’s CEO Christopher J. Durovich in a statement “At Children’s Medical Center, we already provide care coordination for complex medical needs and we believe it is time for Medicaid’s delivery system to catch up to our advances.”
The ACE Kids Act of 2014 would create networks that follow a set of national standards that ensure the children receive the same type and quality of care no matter where they are treated. Emmy, meanwhile, got to meet Reps. Bill Flores, R- Bryan; Michael Burgess, R-Lewisville; Pete Sessions, R-Dallas; Sam Johnson, R-Richardson; and Ralph Hall, R-Rockwall.
“Congressman Barton’s legislation will improve the care that these children receive and reduce costs at the state and federal levels. I applaud his efforts to ensure that children with complex health needs receive the first-rate care they deserve, in the most efficient and child-focused means, regardless of where they live,” Durovich continued.