Forty-nine children and their families, including one from Clay County, are hoping face-to-face meetings with members of Congress helps lawmakers understand the plight of kids with medically complex conditions.
The group is lobbying leaders to pass a law expanding coordination between medical specialists across state lines.
The Advancing Care for Exceptional Act for Kids would standardize care for Medicaid patients and allow them to receive treatment across state lines.
Around 2 million kids with medically difficult conditions rely on Medicaid for access to specialists, hospitals and at-home care. But because Medicaid networks vary widely by state, it’s hard for some parents to coordinate their child’s care.
In April 2015, William Miller’s stepson Jacob Lopez, 8, was involved in a car accident that left him with a traumatic brain injury, skull fracture, punctured colon, collapsed lung and a severed spine, paralyzing him from the waist down.
“We are in Washington advocating for an organization Speak Now For Kids during their family advocacy day, really promoting the ACE Kids Act,” he said.
Since then, Jacob needs constant care and trips to a throng of medical specialists. Miller said because of the level of coordinated care available in Jacksonville, his family has been luckier than most.
But, he said, others in similar situations don't have access to the same level of care.
“Because of Jacob’s condition, he has 17 different physicians and caregivers and therapists that work with him on a nearly daily basis,” he said. “The advantage we have with the Bower Lyman Center for Complex kids is the ability to coordinate his services — coordinate his care. So, all of his doctors consistently know what’s going on with him.”