Health Care Transition Education Introduction to a Promising Practice

1. Health Care Transition EducationIntroduction to a Promising Practice Texas Transition Conference Kathy Griffis-Bailey, MS February 21, 2012

2. Guess What? ADULTHOOD applies to health care, too! Transition should also include health care, in the context of comprehensive transition, ALONG WITH education and vocation transition. Why?

3. When physical and mental health andwellness are not well-understood andwell-managed, young adults withdisabilities cannot learn, work, or play. Cuando no se entiendan ni se controlen bien la salud y el bienestar físico y mental, los jóvenes con discapacidades no pueden aprender, trabajar ni jugar.

4. Guess What? • Making personal decisions and choices (including those about health care) are legal RIGHTS of adulthood. • PEDIATRICS MEANS KIDS! Sometime around 18-21, a child may not be ALLOWED to continue seeing many of the same (pediatric) doctors and other health care providers. • PS – At some point, a child may not WANT to continue going to a “children’s” doctor. • Preparation CANNOT begin at the end of childhood.

5. Guess What? • Self-advocacy IS NOT OPTIONAL – By law, young adults may and often must speak for themselves beginning at age 18. Without the child’s permission or a legal arrangement, health care providers may not be able to talk with parents about a child’s care. • Self-advocacy IS DESIRABLE – Even young adults with limited capability for decision making should be ASKED how they feel and what they think. ALL who can should be encouraged (and taught) to make their own decisions.

6. Objectives • Recognize the value of teaching health and wellness and health care transition • To share data concerning health care transition • To share findings of a Florida study which demonstrated the value of a health care transition curriculum • To introduce that curriculum for students with special needs

7. What is Health Care Transition? Health care transition is ~ ~ the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems. Society for Adolescent Medicine J Adolesc Health 1993:14:570-576.

8. Why is it important? Survival rates for Children and Youth with Special Health Care Needs (CYSHCN) are increasing, and many more children are living into adulthood. • 90% of children and youth with special health care needs (CYSHCN) are living into adulthood. • At least 45% lack access to a physician familiar with their care. • At least 30% lack a payment source for health care. • 90% of CYSHCN say they want to live and work independently. Supplement to Pediatrics, December 2002, 110:6, 1301-1335.

9. Why is it important? To address societal needs of people with disabilities in adulthood–It’s more than just getting health care. • Access to facilities and services. • Making and maintaining adult relationships. • Life-long responsibility for decision making. • Advocacy for better systems. • Independence and quality of life.

10. Why is it important to the person? • It’s the healthy thing to do! Transition from pediatric to adult health care is a change that other young adults make. • Making a successful health care transition impacts personal aspects of adulthood and independence. Post-secondary education, employment, a place to live, recreation, and transportation all are dependent upon a person’s being knowledgeable about and able to manage one’s own health care.

11. What may happen if a young person doesn’t transition in health care? • Greater emphasis on crisis care, less on typical activities of daily living. • More time spent ill as a patient, instead of living well as a young adult. • More days of missed school, work, or recreation, with resulting interruptions in learning, income, and friendships.

12. What may happen if a young person doesn’t transition in health care? • Isolation and possible risk for depression, mental illness, and/or risk-taking behaviors. • Missed health care issues such as routine adult primary and preventive care, reproductive health, and the effects of aging. • Adult onset medical problems may complicate chronic diseases or disabilities sooner or more severely than expected.

13. Video Health Care Transition Institute for Child Health Policy University of South Florida 2008

14. About Health Care Transition Education Research/Data There isn’t much! There’s even less that examines issues relevant for educators, BUT . . .

15. Findings from CDC National Surveys National Surveys of Children’s Health (NSCH) National Surveys of Children with Special Health Care Needs (NS-CSHCN) Child Health Measure Missed 11 or more days of school due to illness, ages 6-17 ALL CHILDREN Texas Nation 2003 NSCH 4.6% 5.2% 2007 NSCH 5.5% 5.8% CSHCN 2003 NSCH for CSHCN 13.2% 13.5% 2007 NSCH for CSHCN 11.2% 13.5% 2001 NS-CSHCN 13.9% 15.8% 2005-2006 NS-CSHCN 12.9% 14.3% 2009-2010 NS-CSHCN 15.5% 15.5% www.childhealthdata.org

16. 2011 CDC School Health Guidelines 1. Use a coordinated approach to develop, implement, and evaluate healthy eating and physical activity policies and practices. 2. Establish school environments that support healthy eating and physical activity. 3. Provide a quality school meal program and ensure that students have healthy food and beverage choices outside the school meal program. 4. Implement a comprehensive physical activity program with quality physical education as the cornerstone. 5. Implement health education that provides students with the knowledge, attitudes, skills, and experiences needed for healthy eating and physical activity. http://www.cdc.gov/healthyyouth/npao/strategies.htm

17. 2011 CDC School Health Guidelines 6. Provide students with health, mental health, and social services to address healthy eating, physical activity, and related chronic disease prevention. 7. Partner with families and community members in the development and implementation of healthy eating and physical activity policies, practices, and programs. 8. Provide a school employee wellness program that includes healthy eating and physical activity services for all school staff members. 9. Employ qualified persons, and provide professional development opportunities for physical education, health education, nutrition services, and health, mental health, and social services staff members, as well as staff members who supervise recess, cafeteria time, and out-of-school-time programs. http://www.cdc.gov/healthyyouth/npao/strategies.htm

18. Health Care Transition Research Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease (CHD): The Transition Process and Medical and Psychosocial Issues: A Scientific Statement from the American Heart Association (AHA), Sable and Foster, Co-Chairs, 2011 • A systematic review of transition-related literature for children and youth with CHD to identify and make recommendations applying the AHA classification of recommendations and levels of evidence. Addressed many issues and topics. • For the Education and Career Choices Topic: Four studies demonstrated that adolescents and young adults have a poor understanding of their cardiac disease. http://circ.ahajournals.org/content/early/2001/02/28/CIR.0b013e3182107c56.citation

19. Health Care Transition Research Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease (CHD): The Transition Process and Medical and Psychosocial Issues: A Scientific Statement from the American Heart Association (AHA), Sable and Foster, Co-Chairs, 2011 • One study interviewed young adults (mean age 28) about their experiences in learning about their heart disease. • “The majority of subjects wished that they had received developmentally appropriate education sessions beginning in early childhood, with added information and continuing reinforcement through adolescence.” (Rönning, H. et al. Educational Needs in adults with congenitally malformed hearts. Cardiol Young. 2008;18:473-479.) http://circ.ahajournals.org/content/early/2001/02/28/CIR.0b013e3182107c56.citation

20. Health Care Transition Research Best Practices in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease (CHD): The Transition Process and Medical and Psychosocial Issues: A Scientific Statement from the American Heart Association (AHA), Sable and Foster, Co-Chairs, 2011 • Recommendation having a high level of benefit, but low level of evidence: Develop a structured educational/teaching plan based on the adolescent’s individual academic abilities, educational level, and developmental maturity. http://circ.ahajournals.org/content/early/2001/02/28/CIR.0b013e3182107c56.citation

21. Health Care Transition Education Research Evidence-Based Secondary Transition Predictors For Improving Postschool Outcomes for Students With Disabilities, David W. Test et al, 2009 • A systematic review of secondary transition correlation literature to identify in-school predictors of improved postschool outcomes in education, employment and/or independent living for students with disabilities. • Identified 16 predictor categories. http://cde.sagepub.com/cgi/content/abstract/32/3/160

22. Health Care Transition Education Research Evidence-Based Secondary Transition Predictors For Improving Postschool Outcomes for Students With Disabilities, David W. Test et al, 2009 • Inclusion in general education, paid employment or work experience, self-care or independent living skills, and student support predicted improved outcomes in all three postschool outcome areas. • Career awareness, interagency collaboration, occupational courses, self-advocacy awareness or self-determination, social skills, transition program, and vocational education predicted improved outcomes for postschool education and employment. http://cde.sagepub.com/cgi/content/abstract/32/3/160

23. Health Care Transition Education Research Factors Affecting Health Care Transition Straub, D., Hess, J., et al. Journal of Adolescent Health 36(2) 2005 • Used the PRECEDE-PROCEED health planning model to examine factors influencing the development of an effective health care transition intervention. • Seventeen focus groups of youth/young adults, families, pediatric and adult health care providers, nurses, education professionals, and social service providers. • Families said they need to be better informed. • Many families and providers do not anticipate the importance and complexity of teaching youth and young adults health care management skills, and may not consider the impact of those skills on a young person’s potential to live and work independently.

24. Health Care Transition Education Research Factors Affecting Health Care Transition Straub, D., Hess, J., et al. Journal of Adolescent Health 36(2) 2005 • Findings suggested more attention should be paid to preparing for an increased level of responsibility in managing health care. • Special education teachers in the focus groups were very responsive to the concept of using the classroom to prepare students for health care transition. • Concluded that the education system might provide an effective alternative or complementary venue to the health care system in reaching and teach youth/young adults about health care transition.

25. Health Care Transition Education Research Demonstration Model for School-Based Health Care Transition Education – Intervention Approach Leverage public education infrastructure and capacity to equip youth and young adults, including those with developmental disabilities, with critical health literacy, self-advocacy, and self-determination skills adults need in order to become successful health care consumers. Hess, Janet S. and Diane M. Straub. Brief Report: Preliminary Findings from a Pilot Health Care Transition Education Intervention for Adolescents and Young Adults with Special Health Care Needs. Journal of Pediatric Psychology, pp. 1-7. doi:10.1093/jpepsy/js1091. http://jpepsy.oxfordjournals.org/content/36/2/172.abstract

26. Health Care Transition Education Research Demonstration Model for School-Based Health Care Transition Education – Objective To assess acceptability and feasibility of a school-based health care transition education intervention designed to equip adolescents and young adults (A/YA) who have special health care needs with important health literacy, self-advocacy, and self-determination skills.

27. Health Care Transition Education Research Demonstration Model for School-Based Health Care Transition Education – Organization • Partners: local school district and the University of South Florida College of Medicine (USF COM). • Seven-member interdisciplinary advisory committee, including special educators, social workers, and health care providers developed the curriculum. • Curriculum reviewed for content validity by: USF COM physician faculty members, adolescent medicine physician, school district nurse/prevention specialist, and advisor from the University of Florida Transition Center.

28. Health Care Transition Education Research Demonstration Model for School-Based Health Care Transition Education – Curriculum Topics • Importance of self-advocacy • Rights and responsibilities at age 18 • Finding and communicating with adult providers • Understanding health insurance • Reading prescription labels, managing medication needs • Reproductive system, sexually transmitted diseases • Basic safety, bullying, abuse • Constructing a health journal and medical summary to keep and use after completing the class

29. Health Care Transition Education Research Demonstration Model for School-Based Health Care Transition Education – Sample and Methods • 40-hour, 8-unit module of instruction. • 1 to 1.5 hours per day, five days per week. • 8 weeks in a spring semester. • Thirteen special education classes. 6-20 students/class, in 9th through 12th grades, ages 14 to 22. 137 students, most high functioning, but all with some degree of cognitive limitation. Parents or students could decline participation. • Curriculum written at 7th grade reading level. • 12 teachers and 8 support staff attended a 6-hour training that included how to identify health-related factors to be addressed in students’ IEPs.

30. Health Care Transition Education Research Demonstration Model for School-Based Health Care Transition Education – Sample and Methods • 3 moderator-led focus groups following completion of the curriculum: two student groups, one educator group, and a questionnaire for educators not in focus group. • Assessed value, relevance, likes and dislikes, interest, readability, and completeness. • Analysis used a priori coding and content analysis framework. • Common themes were identified and descriptive summaries developed for each theme. • Study approved by USF Institutional Review Board.

31. Health Care Transition Education Research Demonstration Model for School-Based Health Care Transition Education -- Observations • Curriculum helped young adults with critical health literacy, self-advocacy, and self-determination skills. • Successfully integrated health care transition into school-based transition practice. • Curriculum perceived to be highly relevant and valuable by both students and educators. • Subject matter easily integrated into required health, science and life management courses. • School nurses and social workers can provide a critical link to health care transition information and resources. • Pilot showed promise for empowering students to become more independent in managing their health care.

32. Health Care Transition Education Research “While it is important to teach young people about the benefits of good nutrition and physical activity, health education programs arguably could be designed to better prepare all adolescents/young adults to be informed health care consumers.” Hess, Janet S. Brief Report: Preliminary Findings from a Pilot Health Care Transition Education Intervention for Adolescents and Young Adults with Special Health Care Needs. Journal of Pediatric Psychology, pp. 1-7, 2010.doi:10.1093/jpepsy/jsqo91 http://health.usf.edu/medicine/pediatrics/ad_med/resources.htm

33. REMEMBER!When physical and mental health andwellness are not well-understood andwell-managed, young adults withdisabilities cannot learn, work, or play. Cuando no se entiendan ni se controlen bien la salud y el bienestar físico y mental, los jóvenes con discapacidades no pueden aprender, trabajar ni jugar.

34. Thank You! Kathy Griffis-Bailey, MS Children with Special Health Care Needs (CSHCN) Services Program Department of State Health Services Kathy.griffisbailey@dshs.state.tx.us 5125-458-7111, Extension 3069