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One local family takes their story to Capitol Hill to urge Congress to help children with complex medical conditions by passing the bicameral, bipartisan Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act of 2015 - S. 298, H.R. 546). The Edigers’ effort in Washington, D.C., is part of a broad national push to address key needs for children through the Speak Now for Kids Family Advocacy Day, June 15–16, 2015, sponsored by the Children’s Hospital Association (CHA).
As scientific advances have made it possible for kids to survive serious conditions, a growing number of children and their families face the burdensome realities of managing highly complex medical conditions. Everett Ediger, age 8, was born with spina bifida and hydrocephalus (fluid build-up in the brain). He’s had over 20 surgeries and sees a number of Children’s Hospital Colorado specialists and therapists to address the complications associated with spina bifida. Because of his medical complexities, Everett qualifies for the Medicaid waiver.
Everett and his family will meet with their members of Congress to share the difficulties of caring for a child with medical complexity that is covered by Medicaid and why a legislative solution is needed.
The ACE Kids Act of 2015 would improve care for children with medical complexity who are covered by Medicaid by giving states the option to create nationally-designated children’s hospital networks offering a full array of home, primary, ambulatory, acute and post-acute care and providers. These networks would coordinate and manage the highly specialized care kids like Everett need in order to thrive. Once created, participation in the networks would be optional for states, families as well as for providers.
“Passing the ACE Kids Act of 2015 is a top priority for Children’s Hospital Colorado,” said Jena Hausmann, president and CEO of Children’s Hospital Colorado. “Each year we see more and more children like Everett who depend on Medicaid to access highly specialized care from multiple providers in different care settings. To optimize care and relieve families of the burden of coordinating care themselves, we need to put networks into place that cross state lines and adequately support families. The ACE Kids Act of 2015 would enable states to take up this effort.”
Of the nation’s 78 million children, approximately three million are medically complex and of that population, two million rely on Medicaid for access to multiple specialists, therapists and hospitals. This population represents 6% of all children with Medicaid coverage, yet accounts for 40% of Medicaid’s spend on kids.
The ACE Kids Act of 2015 would save Medicaid an estimated $13 billion over ten years via the networks. The bill is supported by a bipartisan group of nearly 20 senators and more than 120 representatives, including both Senator Michael Bennet (D) and Senator Cory Gardner (R).
CHA President and CEO Mark Wietecha is encouraged by the bipartisan support for children with medical complexity and their families. “The ACE Kids Act of 2015 would help millions of families while lowering utilization costs for Medicaid, a complete win-win situation,” said Wietecha. “We advocate Medicaid improvement that enables care coordination across state lines, inclusive of primary and acute pediatric specialists, to ensure children can get the highest quality care in the right place and at the right time.”
Original cosponsors of the ACE Kids Act of 2015 include: Sens. Chuck Grassley (R-IA), Michael Bennet (D-CO), Rob Portman (R-OH), Bill Nelson (D-FL), Roy Blunt (R-MO), Sherrod Brown (D-OH), Mark Steven Kirk (R-IL) and Patty Murray (D-WA), and Reps. Joe Barton (R-TX), Kathy Castor (D-FL), Jaime Herrera Beutler (R-WA), Gene Green (D-TX), Anna Eshoo (D-CA) and David Reichert (R-WA).