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Title
Children's of Alabama Patient Visiting Capitol Hill To Speak About Children with Complex Medical Issues
Date
06/20/2016
Description
BIRMINGHAM – One Biloxi family is taking its 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). Miles Brown’s 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 21-22, 2016, 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. Miles, age 7, has juvenile idiopathic arthritis and makes a four-hour trip several times a year to see a pediatric rheumatologist at Children’s of Alabama in Birmingham. Miles and his father, Lance, will meet with both Alabama and Mississippi members of Congress to share the difficulties of caring for a child with medical complexity who is covered by Medicaid and why a legislative solution is needed. The public is invited to follow Miles on his journey via social media at facebook.com/childrenshospitalofalabama and twitter.com/ChildrensAL.

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 pediatric-focused networks offering a full array of home, primary, ambulatory, acute and post-acute care/providers. These networks would coordinate and manage the highly specialized care kids like Miles need in order to thrive. Once created, participation in the networks would be optional for families as well as for providers.

“Passing the ACE Kids Act of 2015 is a top priority for Children’s of Alabama,” said Mike Warren, Children’s president and CEO. “Each year we see more and more children like Miles 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 3 million are medically complex and of that population, 2 million rely on Medicaid for access to multiple specialists, therapists and hospitals.

The ACE Kids Act of 2015 would save Medicaid an estimated $13 billion over 10 years via the networks. The bill is supported by a bipartisan group of nearly 40 senators and more than 200 representatives.

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 win-win situation,” Wietecha said. “We advocate Medicaid improvement enabling 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 include: Sens. Charles Grassley (R-IA), Michael Bennet (D-CO), Rob Portman (R-OH), Bill Nelson (D-FL), Roy Blunt (R-MO), Sherrod Brown (D-OH), Mark 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).

Since 1911, Children’s of Alabama has provided specialized medical care for ill and injured children, offering inpatient and outpatient services throughout central Alabama. Ranked among the best pediatric medical centers in the nation by US News & World Report, Children’s provided care for youngsters from every county in Alabama, 41 other states and eight foreign countries last year, representing more than 677,000 outpatient visits and more than 15,000 inpatient admissions. With more than 2 million square feet, Children’s is the third largest pediatric medical facility in the U.S. More information is available at www.childrensal.org.

The Children’s Hospital Association is the national voice of more than 220 children’s hospitals, advancing child health through innovation in the quality, cost and delivery of care. Learn more about the ACE Kids Act and Speak Now for Kids Family Advocacy Day; read stories about the patient heroes coming to D.C.; and follow the families on Facebook, www.facebook.com/speaknowforkids, and Twitter, @speaknowforkids, #SpeakNowForKids.