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June 20, 2016Provided by Wolfson Children's Hospital Jacob Lopez, 8, and his family will be in Washington, D.C., this week to lobby for passage of the 2015 ACE Kids Act.Jacob Lopez needs a wheelchair to get around, but the OakLeaf 8-year-old gets around more than many people who have two functioning legs to work with.
He plays soccer, goes cycling, rides horses and loves to play pranks on people. Surfing, skiing, parachuting, participating in the Paralympics and the World Cup for Power Soccer and meeting President Barack Obama are on his to-do list.
Monday and Tuesday he will be in Washington — not meeting with the president, as far as he knows — but lobbying lawmakers. He and his Clay County family will be part of a Children’s Hospital Association delegation promoting passage of the Advancing Care for Exceptional Kids Act of 2015, which would improve how care is delivered to the 2 million U.S. children who have complex medical conditions.
Jacob, who was paralyzed from the waist down after a 2015 car crash, will be among 40 or so youth on the trip.
“I am looking forward to meeting the other children,” he said. “I’d like to meet the president, but I don’t think I can on this trip.”
ACE KIDS ACT
Jacob said he plans to tell lawmakers what his life has been like since the April 8, 2015, crash that also left his mother severely injured. They were on their way to get ice cream.
Jacob sustained a skull fracture, collapsed lung, bowel perforations, a traumatic brain injury, broken vertebrae and severed spinal cord. Following emergency surgery, he was admitted to the Pediatric Intensive Care Unit at Wolfson Children’s Hospital and placed in a medically induced coma for several weeks to allow his body to heal.
He spent 124 days at Wolfson and has been in the care of 17 pediatric medical and surgical specialists at one point or another. He has had eight surgeries — with more to come.
FRAGMENTED SYSTEM
The proposed legislation, known as the ACE Kids Act, would help families by establishing regional networks designed around the needs of such children to better coordinate the care they need. It would address fragmented care across state lines: Most families of children with medical complexity rely on Medicaid, which varies state to state, according to the association.
Making such improvements could save an estimated $13 billion over the first 10 years, compared to the current system, according to the association.
Jacob and his family plan to meet with U.S. Reps. Ander Crenshaw of Florida and Buddy Carter of Georgia and Sen. Johnny Isakson of Georgia, all Republicans.
“I want to tell them that I want to help other kids,” he said. “They need to listen to my story and pass laws to help other kids.”
Michael Aubin, Wolfson president, and Megan Denk, director of The Players Center for Child Health at Wolfson, will also be part of the delegation. Congress passing the ACE Kids Act is “top priority” for the hospital, Denk said.
‘A FACE TO AN ISSUE’
“Each year we see more and more children who depend on Medicaid to [be able to] access highly specialized care from multiple providers in different care settings,” she said. “To optimize care and relieve families of the burden of coordinating care themselves, we need to put networks into place that cross state lines and adequately support families.”
Lawmakers need to meet families the legislation could help, she said.
“It is always important to put a face to an issue. Children with complex medical conditions are not just statistics, they are [part of] families living in our communities,” she said. “By including families, they are able to tell their story, their difficulties and explain why a legislative solution is needed.”
EXAMPLE TO OTHERS
A year since the wreck, Jacob has largely recovered from his traumatic brain injury and has mastered his wheelchair, even participating in Brooks Rehabilitation’s Adaptive Sports Program, said his mother, Maria Munoz.
“The way he has embraced his wheelchair is really amazing to see. He is a little daredevil, always looking to go faster in his chair,” she said.
Jacob attends Annunciation Catholic School in Middleburg and has several doctor visits and therapy sessions each week. He, Munoz and stepfather Bill Miller “have confidence in progress being made in spinal cord research and hope, whether through medicine or miracle, that he will walk again at some point in his life,” she said.
Jacob knows that may not happen but still has a “wonderful attitude,” she said.
“He hopes to be an example to other children in showing that a disability should not stop you from enjoying every day,” she said.
Jacob’s advice for other children with health challenges?
“I would tell them they can do anything, even if people say they can’t,” he said. “They may have to find a different way to do it, but they can do anything.”
Beth Reese Cravey: (904) 359-4109
