A New Report from the Florida Health Care Transition Services Task Force for Youth and Young Adults with Disabilities

by Janet Hess

Suzanne Crews is afraid of the day when her children’s pediatrician will tell her he can no longer care for them. As the parent of two 23-year olds with developmental disabilities and chronic health conditions, she worries about who will be able to handle their complex medical needs. How will she find a primary care physician and adult specialists close to their home in Highlands County who are trained and willing to deal with Jeffrey, who at 6’2’’ and 240 lbs., functions as an 8-year old?

For Crews and other families with similar challenges, it is welcome news that advocates in Florida are working to improve the process of transitioning to adult health care. In a recent report entitled “Ensuring Successful Transition from Pediatric to Adult Health Care,” the Florida Health Care Transition Services Task Force for Youth and Young Adults with Disabilities outlined 16 recommendations to build a comprehensive system of care for the estimated 500,000 young people ages 12-24 with disabilities or chronic health conditions living in Florida.

The large number of youth and young adults with disabilities transitioning from pediatric to adult health care is a relatively new phenomenon. Due to advances in medical science and technology, we are witnessing dramatic increases in survival rates among children with serious health conditions and diseases. For example, in the 1970’s, less than 30% of children born with spina bifida reached age 20. Today, more than 80% reach adulthood.

Today, more adults than children are alive with diagnoses such as congenital heart disease and cerebral palsy. Despite our understanding about the importance of a smooth, uninterrupted “hand-off” from pediatric to adult care, research suggests there has been little investment in service systems that meet the needs of these emerging adults. According to the 2005/2006 National Survey of Children with Special Health Care Needs, only 41% of youth with special health care needs in the U.S. received the services they need for transition to adult health care, work, and independence. In Florida, the news is even worse: less than 34% received needed services statewide, and only 16% of those in rural areas received services.

In response to this emerging need, Florida advocates initiated a call to action during the 2008 legislative session. Introduced by Senator Stephen Wise of Jacksonville, Senate Bill 988 established a statewide Task Force to assess the need for health care transition services, develop strategies to ensure successful transition from pediatric to adult health care, and identify existing and potential funding sources. Under the guidance of the Florida Department of Health, Children’s Medical Services (CMS), and with support from the Florida Developmental Disabilities Council (FDDC), our 35-member Task Force met from August to December 2008 via teleconference and face-to-face meetings to develop and submit a report to Governor Crist and the Legislature.

Key recommendations from the Task Force are to establish a State Office of Health Care Transition within CMS that guides and supports regional public/private coalitions; develop educational programs and materials for youth and their families to help them prepare for health care transition; provide training for health care and education professionals; and advocate for adequate financing of health care services. As the Task Force continues to refine strategies and develop action plans to implement their recommendations, we invite new members to join the initiative - particularly interested youth and young adults!

If you would like more information about the program, please contact Janet Hess at 813-259-8713 or jhess@health.usf.edu. The legislative report, strategic plan, meeting schedule, and other program documents are at www.healthcaretransition.org.