Children with Complex Medical Conditions and Their Families Convene on Capitol Hill to Urge Support for ACE Kids Act of 2015

WASHINGTON, June 12, 2015 /PRNewswire-USNewswire/ -- Next week, dozens of children with medical complexity and their families will meet with legislators in the House and the Senate to urge them to improve Medicaid for kids like them by passing the Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act of 2015 - S. 298/H.R. 546). More than 40 families have traveled from across the country to participate in the Speak Now for Kids Family Advocacy Day sponsored by the Children's Hospital Association (CHA). This year brings record-setting attendance for the annual event.

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. These children represent 6 percent of all children with Medicaid coverage yet account for 40 percent of Medicaid's spend on kids. Families will be visiting their members of Congress to share the difficulties of caring for a child with medical complexity and why a legislative solution is needed.

Reports and analyses from researchers at children's hospitals and CHA document barriers to care faced by children with medical complexity in Medicaid, who cross state lines to access specialized care. Medicaid's state-by-state approach creates a fragmented and burdensome system yielding productive opportunity to improve care coordination, quality measures and cost containment.

The ACE Kids Act of 2015 would give states the option to establish nationally designated children's hospital networks that would operate across state lines to provide the full array of coordinated care needed – home, primary, ambulatory, acute, post-acute -- by children with medical complexity while reducing overall costs. The networks would also employ quality standards essential to improving care and saving money.

"On the 50^th anniversary of Medicaid, it's important we remember just how many children have been helped by this program," says Mark Wietecha, president and CEO of CHA. "It's critical for leaders in Congress to make sure Medicaid dollars are well-spent by implementing smarter ways to organize and deliver the care kids need. We estimate Medicaid stands to save $13 billion over 10 years once the ACE Kids Act of 2015 is fully implemented."

No one better understands the significance of Medicaid and the need for better care coordination that crosses state lines than the families who experience it firsthand, including Wendy and Chad Larson of Odebolt, Iowa, parents of 2-year old Katelyn, a heart patient at Children's Hospital & Medical Center in Omaha, Nebraska. At 3 months old Katelyn contracted a virus that attacked her heart; she was diagnosed with dilated cardiomyopathy. Katelyn received a heart transplant at Children's, saving her life.

With medications costing $20,000 a year, in addition to annual biopsies and quarterly cardiology appointments (which include EKGs and echocardiograms), Katelyn's family depends on Iowa's Medicaid program to cover her complex medical care at Children's Hospital & Medical Center in Nebraska. "Families with children with complex medical conditions face so many challenges already; getting the very best, coordinated care for their precious child should not be one of them," explains Wendy Larson. 

There is growing urgency for innovating and improving care for children with medical complexity, a rapidly growing patient population accounting for 33 percent of growth in new patients in children's hospitals. One in 25 children is medically complex, and this population includes children with heart problems, like Katelyn, but also includes children with thousands of other different conditions — like congenital heart disease, cystic fibrosis and Down syndrome — as well as a variety of lifelong chronic health challenges due to prematurity. Thanks to advances in medicine, many children with medical complexity who once had high mortality rates are now surviving — and thriving — into adulthood. The ACE Kids Act of 2015 would help optimize their care before they transition to adult medicine.

"These visits allow Congress to hear directly from families about the need for care coordination through medical home-like networks. The ACE Kids Act of 2015 presents the opportunity for Congress to improve Medicaid for the nation's most vulnerable children who depend on it for care," adds Wietecha.

The ACE Kids Act of 2015 is supported by a bipartisan group of nearly 20 senators and more than 120 representatives. Original cosponsors of the bicameral, bipartisan legislation 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 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).

Children's Hospital Association is the national voice of more than 200 children's hospitals, advancing child health through innovation in the quality, cost and delivery of care. 
http://www.childrenshospitals.org | www.speaknowforkids.org

Learn more about Speak Now for Kids Family Advocacy Day; read stories about the child champions coming to DC; and follow the families on Facebook, www.facebook.com/speaknowforkids, and Twitter, @speaknowforkids, #SpeakNowForKids.

SOURCE Children's Hospital Association

Related Links

http://www.speaknowforkids.org