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Youngstown family to advocate in D.C. for children with medical issues
BOARDMAN
Three-year-old Chase Flaherty and his parents, Ericka and Kirk, will travel to Washington, D.C., to share with Ohio’s congressional delegation their personal story about caring for a child with complex medical conditions.
Chase’s message is brief: “The hospital makes me breathe,” he said softly at a news conference Thursday at Akron Children’s Hospital Mahoning Valley’s Beeghly Campus.
The boy and his parents, of Youngstown, will represent Akron Children’s Hospital at the Children’s Hospital Association’s Speak Now for Kids Family Advocacy Day activities June 15-16 in the nation’s capital.
They will join representatives of five other Ohio children’s hospitals and more than 40 families from across the country to put faces of real people who need and benefit from the legislation for which they are advocating.
While there, the Flahertys will meet with the local congressional delegation on behalf of Akron Children’s Hospital to urge support for the Advancing Care for Exceptional Kids Act of 2015 (ACE Kids Act of 2015 – S. 298, H.R. 546) and to improve care for children with medically complex issues who are covered by Medicaid.
Chase, born 13 weeks premature, has been in and out of the hospital since spending four months and one day in the neonatal intensive-care unit at Akron Children’s Mahoning Valley.
He was born with a brain bleed. In his short lifetime, he’s experienced chronic pneumonia and lung disease, cerebral palsy, asthma, eye surgery, blood transfusions, anemia, a seizure, and leg braces to stretch a shortened Achilles tendon.
Parents of five – Chase, McKenzie, Hayleigh, Kiley and Kirk Jr. – the Flahertys are advocating on behalf of other families experiencing similar circumstances.
“Chase truly is a miracle with all he’s been through, and we’re so fortunate the hospital, and the Medicaid program, is there for us so he can continue to receive excellent care,” Ericka said.
“We’re hoping Congress will continue to support children with medical complexity, a strong Medicaid program, and funding for training new pediatricians. It’s horrible just having a sick child; but not being able to pay for what they need would just be devastating,” she said.
“Caring for patients like Chase is our mission, and it is important to communicate with lawmakers that issues like expanding access to care and maintaining funding for Medicaid have a direct impact on our patients and their families,” said Charlie Solley, director of government relations and external affairs at Akron Children’s.
“The ACE Kids Act of 2015 would enable states to form provider-led networks designed to bring higher-quality care and greater care coordination to children with medically complex conditions,” Solley said.
The act, supported by a bipartisan group of nearly 20 senators and more than 120 representatives, would save Medicaid an estimated $13 billion over 10 years via the networks, he said.