Press Release

U.S. House Passes ACE Kids Act, a New Health Home Model for Rapidly Growing Population of Children with Complex Medical Conditions

Castor-Barton led bill advances to U.S. Senate. ACE Kids Act will save time, money for families and states, and provide a new model for a system that is in crisis in caring for our nation’s sickest kids.

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Washington, December 11, 2018 | comments
Today, U.S. Rep. Kathy Castor (FL14) joined families of children with complex medical conditions across the nation to celebrate the passage of the bipartisan ACE Kids Act, included in HR 7217, the IMPROVE Act, which passed overwhelmingly through the U.S. House of Representatives.
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Today, U.S. Rep. Kathy Castor (FL14) joined families of children with complex medical conditions across the nation to celebrate the passage of the bipartisan ACE Kids Act, included in HR 7217, the IMPROVE Act, which passed overwhelmingly through the U.S. House of Representatives.

“After many years of advocacy, families of children with complex medical conditions can celebrate passage of the ACE Kids Act that authorizes the creation of new cost-saving and time-saving health homes where specialized care is coordinated in a high quality setting.  I wrote the ACE Kids Act many years ago with the simple but important goal of putting children with complex medical conditions and their families first,” U.S. Rep. Castor said.

“By creating a health home that better coordinates care for children and families, precious time, money and lives can be saved and children can access specialists who practice across state lines.  My inspiration has been the children served at St. Joseph's Children's Hospital Chronic-Complex Clinic in Tampa, Fla.  St. Joseph’s is one of the nation’s premiere health homes for children with complex medical conditions.  U.S. Rep. Joe Barton (TX6) and the bipartisan group of cosponsors deserve kudos for advocating for our important legislation.”

Most children with complex medical conditions receive care from multiple specialized pediatric providers who often are located at different clinics and hospitals.  Just take a glimpse at the care map for Caroline West, a Tampa, Fla., patient with a complex medical condition.  Families access these specialized doctors through Medicaid, which is federally funded but administered by state governments.

Families should be focused completely on their child’s health rather than sorting through different Medicaid rules for coverage, including barriers to specialists in other states.  Outside studies have found that, through care coordination, the ACE Kids Act will save families and states money while alleviating a fragmented and unnecessarily burdensome system of care for children and families.

“When Caroline was born we didn’t have a diagnosis for her and we travelled five states to five children’s hospitals at our own expense to try to find a diagnosis for her.  It is very difficult and trying for a family.  I feel like we were kind of out there alone.  We had a fantastic pediatrician, but they did not know how to handle complex chronic children,” said Tish West, mother of Caroline West, a patient with a complex medical condition.  “This bill will help the system provide the care coordination that families need to support their children and also to incentivize hospitals around the country to have a clinic such as the one we have here in Tampa, Fla.”

Tish West even shared her story and testified during a congressional hearing to help move the ACE Kids Act forward.

The St. Joseph’s Children’s Chronic-Complex Clinic, which currently serves 700 families and children, was started 16 years ago by a passionate pediatric critical care doctor named Dr. Daniel Plasencia and serves as the model for the ACE Kids Act.  Under Dr. Plasencia’s direction, the Chronic-Complex Clinic has become a health home where children with medically complex conditions, including premature birth, congenital disorders, cerebral palsy, heart disease and more, receive the special attention they need.

“The families with children with complex medical challenges deserve credit for moving this bill toward becoming law.  Thanks to their tireless work explaining to members of Congress the importance of coordinated care, my bipartisan ACE Kids Act is another step closer to the President’s desk to be signed into law,” U.S. Rep. Castor continued.

“As this Congress winds down, I urge my colleagues in the U.S. Senate to take up this important legislation and pass the ACE Kids Act so we can truly put children with complex medical conditions and their families first.  What a wonderful holiday gift that would be for these children and families,” U.S. Rep. Castor concluded.

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