Children's Hospital Association Applauds Introduction of Bipartisan Legislation to Advance Care for Children With Complex Medical Conditions in Medicaid

WASHINGTON, June 25, 2014 /PRNewswire-USNewswire/ -- Today, Representatives Joe Barton (R-TX) and Kathy Castor (D-FL) announced they and distinguished colleagues have introduced the Advancing Care for Exceptional Kids Act of 2014 (H.R. 4930). "ACE Kids Act of 2014" would help coordinate care to ensure optimal outcomes for children with medical complexity in Medicaid, while helping to contain costs. They are joined by cosponsors Reps. Anna Eshoo (D-CA), Gene Green (D-TX) and Jaime Herrera Beutler (R-WA).

The bill is the focal point for child patients and families from across the country participating in the Children's Hospital Association Speak Now for Kids Family Advocacy Day. The event provides families an opportunity to educate members of Congress about the need to ensure and protect children's access to the best possible care and highly-trained pediatric specialists.

Reports and analyses from the Association document common gaps in care faced by children with complex medical conditions in Medicaid, who often cross state lines to access specialized care. Medicaid's state-by-state variability creates a fragmented and unnecessarily burdensome system lacking in care coordination, quality measures and cost containment. Approximately two-thirds of the 3 million children with medical complexity are covered by Medicaid, and represent nearly 40 percent of Medicaid costs for kids. 

"ACE Kids will allow for better care coordination through nationally designated networks that cross state lines under Medicaid, improving care for kids and materially reducing costs for our health care system," says Mark Wietecha, president and chief executive officer of the Children's Hospital Association. "The nation's children's hospitals and the millions of families of children who have complex medical conditions thank our champions in the House, Representatives Barton, Castor, Eshoo, Green and Herrera Beutler for their bipartisan leadership."

The networks would also employ quality standards essential to improving care and saving money. The proposed networks, backed by more than 60 of the nation's leading children's hospitals, would engage states, families, children's hospitals and other providers.

Speak Now for Kids Family Advocacy Day facilitates meetings between families and their elected representatives to highlight key issues that affect their health care, including Medicaid, care coordination and timely access to pediatricians and pediatric specialists. Joining the families this year will be Dr. Jennifer Arnold, star of TLC's "The Little Couple," her husband Bill Klein, and their children, Will and Zoey. As a mother to children with medical complexity and a neonatologist, Dr. Arnold will raise her voice in support of ACE Kids.

No one better understands the significance of Medicaid and the need for better care coordination than the families who experience it firsthand, including Maggie Gonzalez, mother of

8-year-old Alyssa Melecio, an oncology patient at Ann & Robert H. Lurie Children's Hospital of Chicago. When Alyssa was 5 years old she was diagnosed with leukemia, requiring Alyssa to spend a great deal of time at the hospital during her two-year course of chemotherapy. Her leukemia is now in remission.

"Without Medicaid, there is no way we could have paid for Alyssa's treatments," says Gonzalez. "Now, thanks to Medicaid and the exceptional care provided at Lurie Children's Hospital, we have a healthy daughter who is already planning for how she can grow up and make a career out of helping other sick children."

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

"Care coordination is essential for the growing number of children who have complex medical conditions and need access to specialists and services. We hope that in hearing firsthand from families, members of Congress will take one more step to improve children's quality of care by saying 'yes' to ACE Kids," says Wietecha.

Children's Hospital Association represents more than 220 children's hospitals to advance solutions for children's health. www.childrenshospitals.net | 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 at www.facebook.com/speaknowforkids or Twitter, @speaknowforkids, #SpeakNowForKids.

SOURCE Children's Hospital Association