TAMPA — Like many teenagers, Caroline West needed to have her wisdom teeth extracted. But Caroline, 17, has a rare genetic condition known as alternating hemiplegia of childhood that has left her with severe physical and mental disabilities.
Her condition is so fragile, the routine dental surgery led to a cascade of complications that took two months to resolve.
"Any little thing throws her off balance," said Tish West, 60, Caroline's mother. "Just having her teeth pulled was a very big deal."
Even at the best of times, the Tampa teen requires no fewer than 15 different health care professionals and myriad services, a logistical and billing maze that had been her mother's full-time job for years.
Six years ago, West transferred Caroline's medical care to the Chronic-Complex Clinic at St. Joseph's Children's Hospital.
"It was life-changing for Caroline and our family," she said. "Her health improved because we were able to spend less time in doctors' offices and hospitals."
For 13 years, the program has coordinated and delivered care and services for children with medically complex, life-threatening diagnoses. Now it is one of 10 children's hospitals that will share a $23 million federal grant to start taking the model nationwide.
"This grant will improve what St. Joseph's Children's Hospital is already doing to serve medically complex children and provides the resources needed to share its expertise,'' said U.S. Rep. Kathy Castor, D-Tampa. Castor supported the Children's Hospital Association's effort to win the Federal Health Care Innovation Award, part of the Affordable Care Act.
An estimated 3 million American children are considered medically complicated; 2 million of them rely on the public Medicaid and KidCare programs.
Logical as St. Joseph's multifaceted model may seem, it's unusual because the health care payment system in the United States doesn't provide reimbursement for many of the coordination services complex patients need, explained Keri Eisenbeis, director of government relations for BayCare Health, which includes St. Joseph's.
"We want to get where providers all across the country will be able to participate and be reimbursed," Eisenbeis said.
The clinic brings just about all the medical services children like Caroline need under one roof — from medical appointments with specialists to organizing prescriptions, arranging for physical therapy, obtaining medical equipment such as wheelchairs and hospital beds and arranging home health care services.
"We coordinate it all so the parent isn't doing it alone,'' Eisenbeis said. "And now we can take that nationwide."