Ormond Beach Child Travels to Capitol Hill to Represent Wolfson Children’s, Help Advance Care for Exceptional Kids in Medicaid 

One local family is heading to Washington 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. The Johnson family’s effort in Washington is part of a national push 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.

Sandy Johnson, mom of medically complex Wolfson Children’s Hospital patient Keely Johnson, said they are excited to have this opportunity to represent their family and advocate on behalf of families of exceptional children with medical complexity.

She said, “A growing number of children and their families like ours face the realities of managing medically complex conditions under Medicaid, a program that changes from state by state.”

This results 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.

Keely, age 3, has a number of conditions, including a jaw condition called Pierre Robin Sequence, pulmonary hypoplasia, cerebral palsy and epilepsy. Sandy Johnson 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.

“It is critically important to provide coordinated care for kids like Keely,” said Michael D. Aubin, Wolfson Children’s Hospital President. “The UF Health Center for the Medically Complex Child affiliated with Wolfson Children’s Hospital is one way we are doing addressing care coordination in Northeast Florida. All medically complex children deserve the same, which is why we are joining the Children's Hospital Association in supporting a new bill called ACE Kids (Advancing Care for Exceptional Kids) that would help centrally coordinate care to ensure optimal outcomes for children with medical complexity throughout the U.S. Congress can take action now to improve Medicaid and ensure timely access to pediatricians and pediatric specialists.

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.”

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