Pop culture targets “tweens” – children ages 8 to 13 caught between childhood and adolescence. UF’s Jacksonville Health and Transition Services program, known as JaxHATS, targets tweens of another sort – teens and young adults with disabilities and special health-care needs caught between pediatric and adult-oriented health systems.
The only test pilot program of its type in the state, JaxHATS – a collaboration between Children’s Medical Services and the departments of pediatrics and medicine in the College of Medicine-Jacksonville – helps 16- to 26-year-olds with special health-care needs make that transition. And the program’s growth in just one year confirms its success in the five northeast Florida counties it serves – Duval, Clay, Baker, St. Johns and Nassau.
Ironically, the reason this group needs help is because of medical advances in pediatrics.
“Children with congenital health problems or chronic health conditions originating in childhood are living longer and longer,” said David Wood, M.D., co-medical director and founder of the JaxHATS program. “In the 1960s and 1970s, children with Down syndrome or cystic fibrosis rarely made it into adulthood, but now, due to advances in medical science and treatment, their life expectancy is almost normal – into their 50s and 60s,” he said. “The health-care and insurance system is not prepared to incorporate these chronically ill young adults into the adult care system.”
JaxHATS aims to ensure access to quality primary care while preparing patients to coordinate their own care in the adult health-care system.
“There are no care coordinators in the adult health-care system, so we need to get these patients prepped – showing them how to read a prescription bottle, fill a prescription, make an appointment, call if they’re feeling ill, know what side effects are, call 911,” said Deborah Ducett, JaxHATS program manager.
The program is primarily funded by Children’s Medical Services. This year state Sen. Stephen Wise, R-Jacksonville, and state Rep. Don Davis, R-Jacksonville Beach, submitted a revised proposal for a bill that if passed would replicate JaxHATS and expand the scope to any large metropolitan area in Florida.
The JaxHATS multidisciplinary team includes Wood, an associate professor of pediatrics; Linda Edwards, M.D, an associate professor and division chief of general internal medicine; Ducett, who also serves as social worker; nurse care coordinator Paulette Daniel; and UF medical residents and medical students.
The program provides a safety net for the tweens and their parents and guardians. “Many of these adolescents and young adults would otherwise ‘fall through the cracks’ of our medical system and utilize emergency rooms for their primary care as well as urgent care,” Edwards said. “It’s like a support group for parents and guardians, who know they have someone they can call to assist them.”
In addition to promoting independence, JaxHATS helps patients set goals.
“We go beyond just looking at health needs and look at the long-range life goals for our patients and help them get them linked up in the community,” Ducett said. “We don’t provide actual employment placement or independent living services, but we do help them access the resources they need through our relationships with stakeholders and community organizations.” JaxHATS also explores the financial benefit issue for these young people, many of whom have been on Supplemental Security Income for years.
“When they turn 18, they have to be reevaluated under the adult criteria for SSI, and those with cerebral palsy or spina bifida almost automatically qualify,” Ducett said. “But if they have childhood-onset asthma or diabetes, they don’t qualify and then the situation can spiral – they may not be able to work full time, they can’t get insurance, their health care suffers, their quality of life worsens and their dreams vanish.
“Our clients and their families tell us they’re relieved and comforted knowing JaxHATS is here,” she said.