Dayton area teen travels to Capitol Hill to help advance care for exceptional kids in Medicaid
One local family is heading to Washington with representatives of Dayton Children’s Hospital to ask their members of Congress to take action and make sure children can count on a strong health care network to meet their unique needs. Awo Onwudiwe and her mother, Dr. Mamle Anim, efforts in Washington is part of a national push to have a true focus on health care for kids and to advance coordinated care for children with medical complexity in Medicaid through the Children’s Hospital Association’s Speak Now for Kids Family Advocacy Day in Washington, DC, June 24-25, 2014.
“It will be an honor to represent Dayton Children's Hospital on Capitol Hill for Family Advocacy Day to share stories of the specialized care children's hospitals provide,” says Mamle. “This event is to bring real stories to our legislators about how children's hospitals like ours at Dayton Children’s impacts real people's lives and the importance of their continued support in making public policy decisions affect that care.”
A growing number of children and their families face the realities of managing medically complex conditions under Medicaid, a program that varies state by state, resulting in fragmented and burdensome care for these families of exceptional children. Medically complex conditions include cerebral palsy, cystic fibrosis, congenital heart defects and childhood cancers. Of the nation’s 76 million children, approximately 3 million are medically complex. Medicaid is the largest payer for children with medical complexity who require costly medical services and access to multiple specialists and locations for their care, covering 2 million of these children. These children represent 6 percent of kids in Medicaid but 40 percent of Medicaid spending on pediatric care. At Dayton Children’s Hospital, 50 percent of children are covered by Medicaid.
Awo, age 14, has sickle cell disease, an inherited disorder in which red blood cells (which are normally round and flexible), are sticky, hard and shaped like crescent moons. The most common symptoms that patients experience are painful episodes affecting any part of the body. Awo and her family will meet with members of Congress to share their personal experiences in coordinating their health care and why access to multiple specialists, therapists and hospitals is so important.
“As much as we want every child to be healthy, it is the tough reality that kids get sick or are injured and need specialized care,” says Vicki Giambrone, vice president for strategic partnerships at Dayton Children’s, “And we know that having access to a team of pediatric experts close to home improves outcomes for kids and we believe every child, including those with medically complex conditions, deserve to have access to that kind of care.”
Children’s Hospital Association President and CEO Mark Wietecha is encouraged by the bipartisan support for children with medical complexity and their families. “Children’s hospitals are working with Congress to advance a solution that will not only help millions of families who currently struggle with coordinating care for their children, but will lower costs for the system overall. An improved delivery system that enables care coordination across state borders enabling these exceptional children to get the right care in the right place and at the right time is within our grasp. We’re looking forward to working with our congressional champions to advance this innovative solution.”
Children’s Hospital Association represents more than 220 children’s hospitals to advance solutions for children’s health.
For more information on Family Advocacy Day, visit www.childrenshospitals.net; read family stories on the Speak Now for Kids blog, www.speaknowforkids.org/blog; or follow the families on Facebook at http://www.facebook.com/speaknowforkids or Twitter, @speaknowforkids, #SpeakNowForKids.
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