• Press Release
  • June 15, 2016

Children with Complex Medical Conditions and Their Families Urge Congress to Pass the ACE Kids Act of 2015

Washington, D.C. June 20, 2016 — More than 40 children with medically complex conditions and their families will meet this week with members of Congress during the Children’s Hospital Association’s Speak Now for Kids Family Advocacy Day, June 21-22, 2016, to discuss how to improve quality and care coordination for this unique population of children by passing the bipartisan, bicameral Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act of 2015 S. 298/H.R. 546). Of the approximately three million children who are medically complex, two million rely on Medicaid for access to multiple specialists, therapists and hospitals. These children represent six percent of all children with Medicaid coverage yet account for 40 percent of Medicaid’s spend on kids.

“The Medicaid program is essential to millions of children, especially the two million kids with complex medical conditions who need comprehensive coverage to meet their unique needs,” said Mark Wietecha, president and CEO of the Children’s Hospital Association (CHA). “But statistics tell only half the story. Today, children with medically complex conditions and their families will share their stories directly with members of Congress so legislators can hear firsthand how vital it is to pass the ACE Kids Act of 2015.” 

Chloe and Kenneth Allen, both age 8, of Heber Springs, Arkansas, represent just two stories of medical complexity that legislators will hear when they meet with families. Chloe and Kenneth were part of a set of triplets born early at just 25 weeks. (Their sister Cara did not survive.) Chloe, who weighed just 1 pound 5 ounces at birth, came home with a feeding tube, an oxygen mask and numerous medications. Eight years later, she continues to suffer from brain hemorrhages and will require special care well into the future. Her brother Kenneth was born weighing 1 pound 10 ounces and due to complications of his premature birth, his parents were told he might never walk, talk or even breathe on his own. He spent his first 316 days in the Neonatal Intensive Care Unit at Arkansas Children’s Hospital in Little Rock, Arkansas, approximately 70 miles away from the family’s home. Today, Kenneth has defied the odds and is always on the move, though he uses a feeding tube, sometimes needs oxygen and requires multiple medications. 

Kenneth and Chloe have made significant health strides thanks to Arkansas Children’s and neonatologist Robert Lyle, MD, who oversees and coordinates the comprehensive care they receive through the hospital’s Medical Home Program. Between Kenneth and Chloe, they see 13 specialists and seven therapists for their complex needs. Key to this care coordination is clear and open communication between the Medical Home Program, the family and a broader care team of specialists and therapists. 

While there are a handful of medical home-type programs for children with medical complexity underway in other states, children’s hospitals believe comprehensive care coordination across the family, community providers and the hospital should be available to all children with medically complex conditions regardless of geography. That’s why children’s hospitals are advocating passage of the ACE Kids Act of 2015. The bill enables states the option of creating coordinated pediatric-focused networks of providers to improve care for children with medical complexity in the Medicaid program while reducing unnecessary costs. 

In 2011, clinicians at the Arkansas Children’s Research Institute and the University of Arkansas for Medical Sciences studied the Medical Home Program and found it saved nearly $1,200 per patient per month for the year after a patient’s initial clinic visit. Based partially on this and other studies of cost savings associated with medical homes, actuaries assessed the ACE Kids Act would reduce Medicaid spending on this population of children by $13 billion over 10 years. But more important than bending the cost curve is the improvement in care coordination and delivery via the most appropriate settings – home, primary, ambulatory, acute and post-acute – that would result from the creation of pediatric networks designed specifically for children with medical complexity.

While Chloe and Kenneth are receiving quality care from Arkansas Children’s Medical Home Program, they and millions of other children with medical complexity could be benefiting from the acceleration of care improvement expected once the ACE Kids Act is implemented. The ACE Kids Act would enable data sharing on a national basis, across states, to advance best practices and national standards of care much like Medicare does for its beneficiaries. Furthermore, the bill advances the development of risk-based payment models that would provide predictable costs and flexibility to providers to use the most appropriate care setting.   

“Children like Chloe and Kenneth deserve a vibrant and cohesive national system of pediatric care purposefully designed to meet their needs,” explained Wietecha. “We hope hearing directly from families about how the ACE Kids Act would improve care for their children will help Congress to pass the ACE Kids Act this year.” 

A bipartisan group of nearly 40 senators and more than 200 representatives support the bicameral ACE Kids Act. Original cosponsors 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).

About the Children's Hospital Association

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.