Families of Children with Medically Complex Conditions Hit Capitol Hill to Address Medicaid's Role in Child Health

WASHINGTON, June 18, 2013 /PRNewswire-USNewswire/ -- Participants in the Children's Hospital Association's Speak Now for Kids Family Advocacy Day – 36 child patients and their families – convene today through Thursday on Capitol Hill to deliver an important message to their members of Congress: at a time when access to care is improving for millions of adults, don't forget the kids.

The Association's 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.

As states prepare for health reform and the entry of more than 30 million mostly adult Americans into the health care system, these families will call on their representatives to ensure they focus on the needs of children.   

"Even as the Affordable Care Act is implemented, we expect that 40 percent of all children will continue to rely on Medicaid for access to specialized pediatric care," says Mark Wietecha, president and CEO of Children's Hospital Association. "The set-up of health exchanges, as well as Medicaid expansion in many states, is aimed primarily at millions of adults, but we can't let that dilute the resources available for children – especially children with medical complexities."

No one understands the significance of Medicaid and the challenges of accessing care quite like the families who have experienced it firsthand. Located in Port Lavaca, TX, Audrina Cardenas' family is intimately familiar with the realities of being medically complex. Audrina was born with a rare and usually fatal congenital malformation known as ectopia cordis where her heart formed outside of the chest.

"The care Audrina receives at Texas Children's Hospital in Houston enables her to thrive. But the care she needs doesn't fit neatly into a box. She receives care from multiple pediatric specialists, and the system just isn't geared to support the coordination between these healthcare providers very well," says Audrina's mother Ashley Cardenas.

"Whose job is it to make sure the primary care physician, the nephrologist, neurologist, speech pathologist and the orthopedist are all talking to each other and making sure that the child patient is getting the best possible care?" asks Wietecha. "There's no doubt the lack of a systemic approach to care coordination for children with medical complexities translates into missed opportunities for both improving care and controlling costs." 

Like the Cardenas family, the Putney family located in Egg Harbor Township, N.J. also has extensive experience navigating the maze of challenges that come with a medically complex child. Lily Putney was 15 months old when she was diagnosed with "presumed viral encephalitis," seizure disorder, developmental delay and cerebral palsy. To receive the specialized care services she needs at Children's Specialized Hospital, based in Mountainside, NJ, her family has coverage through TRICARE and Medicaid, relying on several different clinicians and specialists in these programs for her care.

"Coordinating care among specialists is a massive task for us. I frequently worry that something will fall through the cracks because there's no one provider who has the 'big picture' on her care needs," says Lily's father, Anthony Putney, who changed professions to become a nurse in order to better manage his daughter's care.

"This population now represents 6 percent of all children in Medicaid and 40 percent of the costs," explains Wietecha. "Care coordination is a lynchpin for this growing number of children who need access to a multitude of specialists and services. We hope that in hearing about the real-world experiences of many of these families, members of Congress will make this issue a priority and support modernizing Medicaid to meet this growing health burden." Adds Wietecha, "When cases are this complex, a state-by-state, patchwork approach to care management is going to continue to challenge these kids. We want to see the system optimized for this unique population. That's why we will advance a data-driven framework for national pediatric networks that would achieve better care coordination for medically complex children."

About the Children's Hospital Association
The Children's Hospital Association advances child health through innovation in the quality, cost and delivery of care. Representing more than 220 children's hospitals, the Association is the voice of children's hospitals nationally. The Association advances public policy enabling hospitals to better serve children, and is the premier resource for pediatric data and analytics driving improved clinical and operational performance of member hospitals.

For more information on Speak Now for Kids Family Advocacy Day, visit www.childrenshospitals.net, or follow the families on Facebook at http://www.facebook.com/speaknowforkids or Twitter, @speaknowforkids, #FAD13.

SOURCE Children's Hospital Association