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VIDEO: Jaime Herrera Beutler, Bipartisan Group of Lawmakers Introduce Bill to Advance Care for Children With Complex Medical Conditions
Legislation would expand access to specialized care for Southwest Washington families, save taxpayer dollars
Today, Representatives Jaime Herrera Beutler (R-WA), Joe Barton (R-TX) and Kathy Castor (D-FL) announced that they have introduced the Advancing Care for Exceptional Kids Act of 2014 (H.R. 4930). “ACE Kids Act of 2014” would help coordinate care to ensure optimal outcomes for children with medical complexity in Medicaid, while containing costs. In addition to Jaime, other original co-sponsors are Reps. Anna Eshoo (D-CA) and Gene Green (D-TX).
“I am honored and excited to announce the ACE Kids Act of 2014. The title of the bill explains a lot about its purpose. We are trying to advance care for some exceptional kids. This legislation focuses on improving care for children with medical complexity on Medicaid. Not only are we trying to improve access to and the quality of care for these kids, we also think that this network model will produce savings for the American taxpayer,” said Rep. Barton.
The ACE Kids Act is voluntary for states, providers, and families. The bill allows for the creation of nationally designated children’s hospital networks to care for children with medical complexity. These networks would include and coordinate the full range of care and providers. Children’s hospitals would anchor these networks because of their expertise and experience in treating the unique and highly specialized needs of these children.
“All children deserve access to 21st century, state-of-the-art medical care. Unfortunately, the current Medicaid system limits struggling families’ access to specialized care based on their zip code,” said Rep. Herrera Beutler. “I’m pleased to help with this bipartisan solution that will use existing resources to expand options for low-income families on Medicaid, ultimately driving down costs for taxpayers. That means more children from Southwest Washington and elsewhere will get access to the best children’s hospitals and the lifesaving care they provide– regardless of the state where they live.”
This legislation is based on the experiences of real world programs and outcomes: individual children’s hospitals have established a track record in developing successful care coordination models for children with medical complexity. But to serve all of these children better – not just those children and families fortunate enough to have access/proximity to this type of care – this legislation would move beyond a state by state approach and creates a national framework for delivery system reform.
“Seattle Children’s Hospital cares for medically complex children in the Pacific NW and Alaska and we support this bill. As the only center that has a full array of pediatric subspecialist in our region we coordinate the needs of these children with their primary care providers to improve the quality of their life. It is imperative that we can keep their care from being fractured, inefficient and unsafe. I personally have worked with families who have had their requests for care with our specialists denied only to have their child’s condition worsen and end up back at Seattle Children’s with complications that put their child at risk and increase the cost of their care.” Mark Del Beccaro, MD VP Medical Affairs, Seattle Children's Hospital
Reports and analyses from the Children’s Hospital Association document common gaps in care faced by children with complex medical conditions in Medicaid, who often cross state lines to access specialized care. Medicaid’s state-by-state variability creates a fragmented and unnecessarily burdensome system lacking in care coordination, quality measures and cost containment. Approximately two-thirds of the 3 million children with medical complexity are covered by Medicaid, and represent nearly 40 percent of Medicaid costs for kids.
“ACE Kids will allow for better care coordination through nationally designated networks that cross state lines under Medicaid, improving care for kids and materially reducing costs for our health care system,” says Mark Wietecha, president and chief executive officer of the Children’s Hospital Association. “The nation’s children’s hospitals and the millions of families of children who have complex medical conditions thank our champions in the House, Representatives Barton, Castor, Herrera Beutler, Green, and Eshoo for their bipartisan leadership.”
There is growing urgency for innovating and improving care for children with medical complexity, a rapidly growing patient population. One in 25 children is medically complex, and they include children with cancer, but they also include children with thousands of other different conditions — like congenital heart disease, cystic fibrosis and Down syndrome — as well as many children born prematurely who have a variety of lifelong chronic health challenges. Thanks to advances in medicine, many children with complexities that once had high mortality rates are now surviving – and thriving – in adulthood. ACE Kids would help optimize their care before they transition to adult medicine.
“Care coordination is essential for the growing number of children who have complex medical conditions and need access to specialists and services. We hope that in hearing firsthand from families, members of Congress will take one more step to improve children’s quality of care by saying ‘yes’ to ACE Kids,” says Wietecha.