Melissa Herrera says the most frustrating part about parenting a child with complex medical needs is repeating herself over and over to health care providers.
“If you can have something there that communicates the foundation of the child, it can take so much stress away from the parent,” said Herrera, whose 8-year-old daughter Angelica was born with a brain anomaly that affects her hearing, vision, motor control and coordination.
Legislation that aims to help parents like Herrera coordinate their children’s care is moving closer to passage through Congress. The Advancing Care for Exceptional Kids Act, known as the ACE Kids Act, was approved by the U.S. House of Representatives’ Energy and Commerce Committee in September.
The bill creates a subcategory of children on Medicaid with complex medical conditions defined as affecting two or more systems in the body and causing physical or cognitive impairment. Each child’s “enhanced pediatric health home” — usually a children’s hospital — would be reimbursed for coordinating their care, inside the hospital and at different specialists, including those across state lines.
The ACE Kids Act allows those out-of-state specialists to qualify for Medicaid reimbursement in the child’s home state without any additional paperwork. It would also connect the pediatric health homes electronically, so the child’s health records can be shared more easily among providers.
About 500,000 children across the country are believed to have multiple health conditions that place them in the category of medically complex, including many with developmental disabilities like autism, Down syndrome and cerebral palsy. The majority of children with complex medical needs are covered by state-funded Medicaid insurance.
“We really see the opportunity to improve care and reduce costs, by coordinating services for children that require multiple specialists, multiple hospitalizations in multiple states,” said Jim Kaufman, vice president of public policy at the Children’s Hospital Association.
At least half of children with Down syndrome have additional medical conditions, according to the National Institutes of Health. Most commonly, children with Down syndrome are more likely to be born with heart disease and can go on to develop leukemia, hearing and vision problems, high cholesterol, sleep apnea, celiac disease and immune disorders among other conditions.
“The ACE Kids Act will improve the process by which children with Down syndrome who participate in the Medicaid program, and who also have other complex medical conditions, are able to obtain quality care and coordinated treatments,” said Ashley Helsing, director of government relations for the National Down Syndrome Society, which supports passage of the bill along with Autism Speaks, the Autism Society and the March of Dimes.
Because it is relatively rare for a child to require complex care, most children’s hospitals do not have a comprehensive staff of specialists for every need, said Kaufman from the Children’s Hospital Association.
Without one national list of Medicaid providers, children now undergo repeat X-rays and other unnecessary procedures because of the lack of coordination across hospitals and across states, Kaufman said.
The legislation is expected to save the government money by reducing hospitalizations and unnecessary procedures. While the bill only covers children on Medicaid, military and private insurers are expected to follow, he added.
If the bill becomes law, Herrera hopes that she won’t always have to serve as Angelica’s nurse, case manager and insurance advisor as well as her mother.
“I think the support really helps parents be able to be the best they can be for their children,” said Herrera, who works as a parent navigator for the Children’s National Health System, a pediatric hospital in Washington, D.C.
The bill still needs approval of the full House and Senate, along with a signature from President Donald Trump to be implemented.
But children’s health care advocates are optimistic that the bill, with its bipartisan support, will pass this year and start improving coordination and communication among providers by 2019.
“These kids are living longer and thriving, so we need to make sure we have that health care delivery system that supports their families,” Kaufman said.