Children’s Specialized Hospital Patient Family Travels to Capitol Hill to Urge Congress to Support the ACE Kids Act of 2015

June 27, 2016

New Brunswick, NJ – One local family took 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 Krill sisters of Beachwood, New Jersey, were chosen to represent the state of New Jersey alongside 40 other children from across the country in Washington, D.C., as 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. The Krill family came head to head with this reality when sisters, Katie, 14, and Kelly, 18, were both diagnosed with a rare chromosomal abnormality causing a delay in motor and cognitive skills. The Krill sisters and their family met with members of Congress including Sen. Cory Booker (D-NJ), Rep. Leonard Lance (R-NJ), Sen. Robert Menendez (D-NJ), and Rep. Frank Pallone (D-NJ) 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 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 Katie and Kelly 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 Specialized Hospital,” said Warren E. Moore, FACHE, president and CEO, Children’s Specialized Hospital.  “Each year we see more and more children like Katie and Kelly 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 all stakeholders to collaborate in the efforts.”

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. This population represents 6 percent of all children with Medicaid coverage yet accounts for 40 percent of Medicaid’s spend on kids.

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,” said Wietecha. “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).

Children’s Specialized Hospital is the nation’s leading provider of inpatient and outpatient care for children from birth to 21 years of age facing special health challenges — from chronic illnesses and complex physical disabilities like brain and spinal cord injuries, to developmental and behavioral issues like autism and mental health. At thirteen different New Jersey locations, our pediatric specialists partner with families to make our many innovative therapies and medical treatments more personalized and effective...so children can achieve more of their goals.  To help, or find more information: call 888-CHILDRENS; visit www.childrens-specialized.org; Facebook: www.facebook.com/childrensspecialized; Twitter: www.twitter.com/childrensspecnj; YouTube: www.youtube.com/cshnj; LinkedIn: www.linkedin.com/company/children's-specialized-hospital

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.

http://www.childrenshospitals.org | www.speaknowforkids.org

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.