Trevor Conklin says his favorite place in the world is Levine Children’s Hospital.
That’s not a typical choice for a 14-year-old, or for so many with an aversion to hospitals. It’s not what one would expect to hear from someone who’s endured 27 surgeries – including one the day he was born.
But the Mooresville teen with spina bifida – a birth defect that happens when a baby’s spinal column does not close all of the way – has a passion for healing that supersedes even his love of playing baseball or video games. That’s why he and his family were invited by the hospital to attend Speak Now for Kids Family Advocacy Day, June 15-16, in Washington, D.C.
“I’m excited about meeting the other kids,” said Trevor, who communicates through a paralyzed vocal cord. He and his 18-year-old sister, Melanie, are on the Teen Advisory Council at Levine.
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Their father, Dave Conklin, says the goal of the Children’s Hospital Association-sponsored event is “to pass legislation to make it easier for families of sick kids to get the services they need.” Specifically, they want to provide momentum for the Advancing Care for Exceptional Kids Act of 2015 (ACE), which was introduced in the Senate on Jan. 29.
“We need to create a network of children’s hospitals and link the hospitals and link the patients to the hospitals so that they have a broader network of care,” said Conklin, who is on the Family Advisory Council at Levine.
ACE pledges to improve the coordination of care for children, saving billions of dollars; gather national data on complex conditions to help researchers improve treatments for rare diseases; and address problems with fragmented care across state lines.
The latter issue was addressed in a recent Observer story about a South Carolina child who was turned away from medical care at a Ballantyne urgent care center because he was covered by South Carolina Medicaid. Conklin says ACE could eliminate such inconsistencies.
“Medicaid is run by states, with their own rules,” he says. “If we were to go to a hospital outside North Carolina, if we would not be accepted, we would have huge co-pay costs. … Although what happened in the South Carolina case did not involve a hospital but an urgent care, if that same child from South Carolina went to Levine, it would not have been an issue.”
He says coordination of care is another key component: “My wife and I are really good at working his care. We’re business people, very organized. But for so many families, it’s very difficult to coordinate care between all your doctors, therapies, things like that. This ACE act would also have a central coordination for families.”
Melissa Conklin says the trip isn’t just about Trevor, whose medical bills are covered by private insurance and Medicaid. “It’s an opportunity to represent and speak for kids who are chronically ill,” she says. “We hope to make a real difference.”
There are questions. “I don’t know how Obamacare rubs up against it,” Dave Conklin says. “But we need a more streamlined approach to children’s health care.”
Not all of the conference will be about policy issues. Conklin said much of the focus will be on children and the courage they show in the face of adversity.
“They definitely are making this about the kids. They want the children to meet the representatives. In fact, they’re making something along the lines of baseball cards of each of the kids to leave behind with the representatives. …
“As a family, we’re about advocating for others. It’s something we have to do. It’s part of our upbringing. Both my family and my wife’s family have family members who are very big into lobbying. I’m sure my mother is upset I’m not a senator yet,” he deadpanned.
Reid Creager is a freelance writer. Have a story idea for Reid? Email him at email@example.com.