Today U.S. Reps. Kathy Castor (D-Tampa/St. Petersburg, FL) and Energy and Commerce Chairman Emeritus Joe Barton (R-TX) introduced the bipartisan Advancing Care for Exceptional (ACE) Kids Act to improve the coordination of care for children with complex medical needs, while containing costs. The “medical home” model is based upon an innovative clinic started at St. Joseph’s Children’s Hospital in Tampa 14 years ago. A Senate companion will also be introduced and Florida Senator Bill Nelson is an original cosponsor.

“Children with complex health needs across America will benefit from coordination of care. I know this model works based upon my visits with families at the St. Josephs’ Children’s Hospital’s Chronic-Complex Clinic’s medical home which anchors medical and social services to its littlest patients,” U.S. Rep. Castor said. “Today, as we speak, St. Joseph’s is carefully tracking data to show other hospitals and states the improved service and cost savings that can gained by creating pediatric networks to serve children with medical complexities.”

Many of the nation’s sickest children must cross state lines to receive care from pediatric specialists whom they can access through Medicaid. But the state-by-state variability of Medicaid creates a care system that is fragmented and unnecessarily burdensome for these medically complex children and their families.  St. Joseph’s Children’s Hospital’s Chronic-Complex Clinic is now in its 14th year serving 1,000 children.

“St. Joseph’s Children’s Hospital is thrilled with the introduction of the ACE Kids Act,” said Kimberly Guy, president of St. Joseph’s Children’s and Women’s Hospitals. “As the first medical home in Florida for medically complex kids, we wholeheartedly support Congresswoman Castor’s efforts to improve the health of our most vulnerable pediatric patients – in Florida and across the country.”

One in 25 children is medically complex, according to the Children’s Hospital Association, and approximately 2 of these 3 million children are covered by Medicaid and represent nearly 40 percent of Medicaid costs for kids. These children may have cancer or a number of conditions — like congenital heart disease, cystic fibrosis and Down syndrome. In addition, children born prematurely often face a variety of lifelong chronic health challenges. These children require access to a myriad of pediatric specialists and parents or guardians must maneuver through a billing maze that many times becomes a full-time job. Transferring to a medical home, such as St. Joseph’s Children’s Chronic-Complex Clinic, has been life-changing for these sick children and their families. The ACE Kids Act would bring this medical home model nationwide by allowing for the creation of nationally designated children’s hospital networks. The ACE Kids Act is voluntary for states, providers and families.

“The ACE Kids Act is bipartisan and I urge my colleagues in the House and Senate to pass this legislation to coordinate state-by-state Medicaid services that will contain costs, but most importantly, better serve our nation’s sickest children,” U.S. Rep. Castor said. “This is the right thing to for these children and their families so they can focus on their health, not a logistical burden.”

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