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Health Care Transition

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Head and Spinal Cord Injuries
 

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 in 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 health care 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, 2009b). The Florida Developmental Disabilities Council has developed a detailed curriculum (Hess, Aman-Brousseau et al, 2009b) and teacher’s guide (Hess, Aman-Brousseau et al, 2009a) 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 (Hess, Aman-Brousseau et al, 2009a).

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.    

A white paper from the Coalition for Young Adults Living with Chronic Medical Conditions and Disabilities (CMCD) and Physician Parent Caregivers, Inc.

"sets out to establish why it is so important to address the evolving needs of youth and young adults living with CMCD, ages 12 to 30 years, as they transition into adulthood, especially as the nation discusses health care reform more broadly.

Addressing health care transition, coordination, continuity and access needs of the 15 million young Americans living with CMCD could not only slow the growth of health care costs, quality health care supports could also assure these young adults are healthy enough to make active contributions to society. Transition and related health care supports are important components of overall health care reform.

Several possible strategies might be considered. Youth health care transitions to adult health care could be improved by changes to insurance rules, reimbursement policies and the medical workforce" (Gleason, Palmer, Bhagat, & Reiss, 2009, Executive Summary).

Youth with and without disabilities and their families will need to monitor the implementation of Public Law 111-148, The Patient Protection and Affordable Care Act of 2010. The law's many provisions will go into effect in 2010 and subsequent years.  Provisions affecting youth include prohibiting the exclusion of children with pre-existing conditions from insurance coverage, allowing parents to keep children on their insurance plans until the age of 26; prohibiting insurance companies from cancelling coverage for people who get sick, and developing annual out-of-pocket spending limits to ensure that families do not go bankrupt paying for health care.


Resources

My Health Care
http://www.fddc.org/sites/default/files/New%20Web-Health%20Care.2_1.pdf
"My Health Care" is a training program designed to educate individuals with developmental disabilities on how to communicate with health care professionals and to identify and advocate for their own health care 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 health care 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).

Access to Health Care 2010
http://www.pacer.org/tatra/pdf/healthcareact2010.pdf
This list of provisions from the new Patient Protection and Affordable Care Act of 2010 that are of special interest to youth and people with disabilities was compiled by the Technical Assistance on Transition and the Rehabilitation Act (TATRA) Project at the PACER Center. Online resources are also provided.

Just the Facts: The 411 on Health Insurance for Young Adults Ages 18-30 in Florida
http://www.floridahats.org/wp-content/uploads/2010/03/JUST-THE-FACTS_Final-Low-Res.pdf
This guide from FloridaHATS (Health And Transition Services), part of Children’s Medical Services in the Florida Department of Health, was funded by the Florida Developmental Disabilities Council. Public and private insurance options are discussed, including preliminary information on changes resulting from the Patient Protection and Affordable Care Act of 2010.

Florida KidCare
http://www.floridakidcare.org
Florida's health 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. Apply on-line or print an application and instructions.  

Florida HATS (Health And Transition Services)
http://www.floridahats.org/
A collaboration of the Florida Department of Health, Children’s Medical Services Network, Florida Developmental Disabilities Council, and other partners that works to ensure 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.

Health Care Transitions
http://hctransitions.ichp.edu/hct-promo
This Web site contains links to a number of resources including the Health Care Transition Training Program for Families and Youth, brochures:

  • Since You’re Not a Kid Anymore, It’s Time to be More in Charge of Your Health Care
  • Now that You’re in High School, It’s Time to be More in Charge of Your Health Care
  • When You’re 18 You Are in Charge of Your Health
  • Envisioning My Future: A Young Person’s Guide to Health Care Transition

and streaming videos and DVDs:

  • Talking with Your Doctor
  • This is Health Care Transition
  • Health Care Transition: College and Beyond
  • Health Care Transition: Jim’s Story

Embedding Health Care Outcomes in the IEP
http://dpimedia.wi.gov/main/Viewer/?peid=f44dfa70439241dd85e99cce0cb70e26
This presentation from the Wisconsin Department of Public Instruction discusses how health care transition can be integrated into Individual Education Plan development and includes specific examples for five students. It does not reflect how IEPs addressing secondary transition components are developed in Florida.  

Transition Digest (e-newsletter)
http://hctransitions.ichp.ufl.edu/digest.php  
Transition Digest is a free monthly e-newsletter for anyone interested in the health and well being of young adults with chronic medical conditions and disabilities. It contains information about emerging trends, promising health care transition practices, lessons learned, materials for youth and parents, transition related publications, Web sites, meetings, and questions from subscribers. Its focus is issues such as improving systems of care, promoting teen’s autonomy and medical decision making skills, assessing transition readiness, and facilitating the transfer between pediatric and adult providers. To subscribe to the free Digest, e-mail a request to jgr@ichp.ufl.edu.

Physicians-Parents Caregivers, Inc.
http://physicianparent.org/
This Web 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.  

Comprehensive Health Education
https://www.fldoe.org/BII/CSHP/Education/default.asp
This Web page from the FDOE Bureau of Curriculum and Instruction contains information 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.

Family Educational Rights and Privacy Act (FERPA)
http://www.ed.gov/policy/gen/guid/fpco/ferpa/index.html
This U.S. Department of Education Web 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.

Health Insurance Portability and Accountability Act Privacy Rule (HIPAA)
http://www.hhs.gov/ocr/privacy/
This web 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 the Patient Safety and Quality Improvement Act of 2005 (PSQIA) Patient Safety Rule.

Health Resources & Education, University of South Florida, College of Medicine
http://health.usf.edu/medicine/pediatrics/ad_med/resources.htm
This Web page contains links to the Connect to Protect program for combating increasing HIV rates among youth, health care transition information and resource guide, tips for a healthier life and diet, and more.

Healthy and Ready to Work National Resource Center
http://web.syntiro.org/hrtw//
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. 

Centers for Medicare and Medicaid Services (CMS)
http://www.cms.hhs.gov/home/medicaid.asp  
This Web 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.

Talking with Your Doctor and Other Heath Care Professionals
http://hctransitions.ichp.edu/gladd/
This new Web site teaches young people to talk to health care professionals using the GLADD approach (Give, Listen, Ask, Decide, Do) via text and information videos.

The Youthhood
http://www.youthhood.org  
This Web site for youth helps them think about life after high school via Web pages such as "The Hangout," "The Job Center," and "The Apartment." "The Health Clinic" Web page discusses three topics: Understanding Health, Being Your Own Advocate, and Understanding Insurance.

A Guide to the Florida Juvenile Justice System for Parents of Youth with Disabilities or Chronic Health Conditions
http://www.floridahats.org/?page_id=2338
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 FAQ format.

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://physicianparent.org/siteimages/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. Available at 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. Available at 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. Available at 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. 

 

 

 

The development of this website was funded by the University of South Florida St. Petersburg
through a grant by the Bureau of Exceptional Education and Student Services,
Florida Department of Education (2010 - 2011, 291-2621A-1C008).

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