Health Care Transition

Health Care Transition (HCT) is defined as "the purposeful planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems" (Blum, Garell, Hodgman, Jorissen, Okinow, Orr, et al cited in Repetto, Gibson, Lubbers, Gritz, & Reiss, 2008, p. 6). However, Repetto et al. (2008) point out that HCT is important for all youth, especially those with disabilities, and should be addressed as part of the Individual Educational Plan (IEP) process. They also note that research and systems change are needed to raise awareness and knowledge of HCT and create a smooth transition between child and adult systems.

Hess, Aman-Brousseau, Pollard & Sansosti (2009b) identified several areas about which youth with (and without) disabilities must be informed in order to successfully transition to adult health services:

  • Self-advocacy and effective decision-making
  • The age of majority and adult rights and responsibilities
  • The difference between pediatric and adult doctors
  • Guardianships and other supports
  • Finances
  • Finding doctors and other healthcare providers
  • Making appointments with doctors
  • How to speak to doctors and what to expect at appointments
  • Health Insurance and Medicaid
  • Prescription and over-the-counter medications
  • Maintaining sexual health
  • Staying safe physically and emotionally
  • What to do in a medical emergency
  • Community health resources

One approach for self-managing a youth’s health care is to maintain a health care journal that contains information such as a log of medical appointments, a medical history, information on insurance and medications, emergency contacts, and health care provider information (Hess, Aman-Brousseau et al, 2009a). The Florida Developmental Disabilities Council has developed a detailed curriculum and teacher’s guide (Hess, 2015) that address the topics listed above as well as providing forms to create the health care journal. The teacher’s guide also contains information on parental permissions and confidentiality to ensure that (a) parents may choose to exclude their child from the unit on sexual health and (b) confidentiality of student health information will be protected in classroom discussions and activities. The Florida Department of Education also has a Comprehensive Health Education Toolkit for both Elementary and Secondary students.

Young people and their guardians should also be familiar with two laws that protect the privacy of health information and educational records that may contain information on disabilities, illnesses, and/or health conditions: the Privacy Rule of the Health Insurance Portability and Accountability Act (HIPAA) and the Family Educational Rights and Privacy Act (FERPA).

Recognizing that "health care transition is a critical aspect of successful entry to adulthood; indeed, that it supports economic self-sufficiency, independence, and prevents school dropout and delinquency" (Hess, Wood, Sloyer & Reiss, 2009, p. 4), the Florida legislature mandated a statewide task force to assess youth health care transition needs, develop strategies to address them, and identify potential funding sources. The final task force report noted that

  • There are approximately 500,000 youth with disabilities or special health care needs between the ages of 12 and 24 living in Florida
  • Only 34% receive the services they need to transition to adult health care, employment, and independence
  • Only 16% of those living in rural areas receive the services they need (Hess, Wood et al, 2009, p. 4)

The Task Force report also identified a number of strategies for implementing a comprehensive action plan.

Resources

Centers for Medicare and Medicaid Services (CMS)
This page from the U.S. Department of Health and Human Services provides information on Medicaid enrollment, services, and programs. It also has links to Medicare, the Children’s Health Insurance Program, resources and more.

Comprehensive Health Education
This FDOE web page contains information and resources related to comprehensive health education, including toolkits for Elementary and Secondary. on "lessons that instill healthy behaviors" and health education topics such as physical education, mental and emotional health, and prevention of disease, pregnancy, injury, tobacco and substance use. The intent of a comprehensive health education program is to motivate students to maintain and improve their health, prevent disease and avoid or reduce health-related risk behaviors. Comprehensive health education addresses 12 component areas under Florida State Statute 1003.42 (2)(n) - Required instruction topics include the following:

  • Community health
  • Consumer health
  • Environmental health
  • Family life
  • Injury prevention and safety
  • Internet safety
  • Mental and emotional health
  • Nutrition
  • Personal health
  • Prevention and control of disease
  • Substance use and abuse
  • Teen dating violence

Embedding Health Care Outcomes in the IEP
Waisman Center, University of Wisconsin-Madison, University Center for Excellence in Developmental Disabilities (UCEDD)
This website has a variety of resources to assist IEP teams in looking at how health care transition can be integrated into Individual Education Plan development.

Family Educational Rights and Privacy Act (FERPA)
This U.S. Department of Education page summarizes the rights of parents and children regarding educational records and provides contact information for questions about the law as well as links to FERPA regulations.

Florida HATS (Health And Transition Services)
FloridaHATS is a program of Florida Department of Health, Children’s Medical Services. They collaborate with other partners to promote successful transition from pediatric to adult health care for all youth and young adults in Florida, including those with disabilities, chronic health conditions, or other special health care needs. Web resources include a toolbox that contains information and links on care plans and checklists, clinical guidelines, guardianship, education and training, insurance and finance, service delivery systems, and more. Regional Coalitions are also featured on the website, many have developed resources which are accessible online. The website has information and resources for healthcare practitioners, youth and families, educators and other community stakeholders.

FloridaHATS, Information Related to the Juvenile Justice System
This site includes information and resources related to health care transition and students with the Juvenile Justice System. One of the resources is A Guide to the Florida Juvenile Justice System for Parents of Youth with Disabilities or Chronic Health Conditions. This guide is for families of youth, including those with special health care needs, who have been referred to Florida Department of Juvenile Justice, in an easy-to-read format.

Florida KidCare
Florida's health and dental insurance program for children, including those of working parents, provides high-quality, low-cost health insurance for uninsured children under age 19, including doctor visits, check-ups, shots, prescriptions, vision and hearing screenings and more.

Got Transition? | Six Core Elements of Health Care Transition
Got Transition/Center for Health Care Transition Improvement is a cooperative agreement between the Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health. Their aim is to improve the transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families. Along with community partners, they are working to:

  • Expand the use of the Six Core Elements of Health Care Transition in pediatric, family medicine and internal medicine practices
  • Partner with health professional training programs to improve knowledge and competencies in providing effective healthcare transition supports to youth, young adults and families
  • Develop youth and parent leadership in advocating for needed transition supports and participating in transition quality improvement efforts
  • Promote health system measurement, performance and payment policies aligned with the Six Core Elements of Health Care Transition
  • Serve as a clearinghouse for current transition information, tools, and resources.

Health Information Center
PACER’s Health Information Center (HIC) provides a central source for families of children and young adults with special health care needs and disabilities to obtain support, advocacy, and information about the health care system. Children and youth with special health care needs (CYSHCN) are those who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions that require health and related services of a type or amount beyond that required by children generally.

Health Insurance Portability and Accountability Act Privacy Rule (HIPAA)
This page from the U.S. Department of Health and Human Services provided information and resource links for HIPAA privacy and security rules as well as for the Patient Safety and Quality Improvement Act of 2005 (PSQIA) Patient Safety Rule.

Healthy and Ready to Work National Resource Center
Young people with special health care needs must have an understanding of their health and participate in their health care decisions. Although the HRTW resource center is no longer funded, its resources are available on this site.

Just the Facts: The 411 on Health Insurance for Young Adults Ages 18-30 in Florida (2015) (pdf)
This guide was originally developed in 2010 and updated in 2015 by FloridaHATS (Health And Transition Services), part of Children’s Medical Services in the Florida Department of Health. The guide's introduction explains that it "is designed to give you basic information, action steps and deadlines to help you stay focused and on track. Links to web-based resources are included if you want to find out more about specific items. If you don’t know what some terms mean, there’s a glossary in the last section." A wide variety of insurance options are discussed, including both public and private.

My Health Care (pdf)
A Health Literacy and Communications Training Program, Florida Developmental Disabilities Council and University of South Florida
"My Health Care" is a training program designed to educate individuals with developmental disabilities on how to communicate with healthcare professionals and to identify and advocate for their own healthcare needs. The goal of this program is to support, through skill building and the use of adaptive tools, individuals with developmental disabilities as primary participants in all matters related to their health care and healthy living. In this training program, adults with developmental disabilities have a role as primary participants in learning and in mentoring peers about healthy living and managing acute or chronic illness. Using the GLADD model (Give Listen Ask Decide Do) developed at University of Florida’s Institute for Child Health Policy, the curriculum encompasses the following components in an interactive, multi-media format:

  • Being prepared with questions and issues to discuss at office visits
  • Providing a health summary to the physician
  • Being assertive when communicating
  • Paying attention to body language
  • Using rating scales and visual aids to communicate health issues
  • Learning negotiating skills; providing feedback to the physician
  • Utilizing caregivers to assist with communication
  • Recording communication with physician to enhance information recall and comprehension
  • Utilizing technology to improve healthcare communication and self-management

The curriculum employs multiple teaching methods to accommodate diverse learner needs, incorporating modeling, games, and role-play activities throughout the course. It includes PowerPoint slides, videos for learners, web-based resources and print materials. The Instructor’s Guide provides a detailed course outline and resources needed for implementation. Technology requirements include internet access and audio-video equipment for classroom presentations (i.e., computer. LCD projector, screen).

Physicians-Parents Caregivers
This site focuses on policy and solutions for ensuring quality health care for children and young adults who live with a chronic medical condition or disability.

University of Florida Certificate in Education and Health Care Transition
This 12 credit graduate program is designed for graduate students and professionals in education, medicine, nursing, social work, law, public health, public policy, and other education and health areas. Participants will learn new skills for integrating education and health care transition and will build expertise in this emerging discipline. The online course provides a flexible schedule, participation in a community of practice and the opportunity to complete the program in one year. Questions? Contact jgonzalez@coe.ufl.edu.

University of South Florida (USF) Health, Adolescent Medicine
This page contains links to various resources related to adolescent health, including health care transition information and resource guides, and tips for a healthier life and diet, and more.

The Youthhood
This site for youth helps prepare students for life after high school. The Health Clinic page discusses three topics: Understanding Health, Being Your Own Advocate, and Understanding Insurance.

References

Gleason, B., Palmer, J., Bhagat, S., & Reiss, J. (2009, October). Enhancing health care transition for youth and young adults living with chronic medical conditions and disabilities: Suggestions for reform. Rockville, MD: Coalition for Young Adults Living with Chronic Medical Conditions and Disabilities and Physician Parent Caregivers, Inc. Available at http://m2hcc.com/wp-content/uploads/ 2016/04/PPCpaper_web.pdf.

Hess, J., Aman-Brousseau, R., Pollard, D., & Sansosti, J. (2009a, August). What’s health got to do with transition? Curriculum. Teacher’s guide. Tallahassee, FL: Florida Developmental Disabilities Council, Inc. Retrieved from http://www.project10.info/files/ Curriculum_Teacher_Guide_8.23.09_1_.pdf

Hess, J., Aman-Brousseau, R., Pollard, D., & Sansosti, J. (2009b, August). What’s health got to do with transition? Curriculum. Tallahassee, FL: Florida Developmental Disabilities Council, Inc. Retrieved from http://www.project10.info/files/ Curriculum_Students_8.23.09_1_.pdf

Hess, J., Wood, D., Sloyer, P., & Reiss, D. (2009, January 1). Ensuring successful transition from pediatric to adult health care: Florida Health Care Transition Services Task Force for Youth and Young Adults report and recommendations. Tallahassee, FL: Florida Health Care Transition Services Task Force for Youth and youth Adults. Retrieved from http://www.floir.com/siteDocuments/2009_fl_hct_task_force_report-cms.pdf

Repetto, J.B., Gibson, R.W., Lubbers, J., Gritz, S., & Reiss, J. (2008). A statewide study of knowledge and attitudes regarding health care transition. Career Development for Exceptional Individuals, 31, 1, 5-13. Retrieved from http://journals.sagepub.com/doi/abs/10.1177/0885728807312920