Health Care—The Essential and Inevitable Transition

1. Health Care—The Essential and Inevitable Transition Texas Transition Conference Kathy Griffis-Bailey, MS February 9, 2011

2. Guess What? ADULTHOOD applies to health care, too! Transition planning also should include health care. It’s best done in the context of comprehensive transition planning, ALONG WITH educational and vocational transition planning. Why? When physical and mental health and wellness are not well-understood and well-managed, young adults with disabilities cannot learn, work, or play.

3. 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.

4. 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, such as guardianship, 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.

5. Objectives • (1) Recognize the value of teaching health and wellness and health care transition. • (2) Summarize the knowledge, skills and abilities related to learning health and wellness and health care transition. • (3) Realize where and how health and wellness and health care transition may be incorporated into IEPs. • (4) Identify health and wellness issues that relate to post-secondary education and/or higher education.

6. TOPICS FOR DISCUSSION • What is Health Care Transition? • Privacy, Self-Determination, and Disability Disclosure • Teaching and Learning Health Care Self-Care Skills • Health Care Transition Education Research • How Health Care Relates to Employment and/or Post-Secondary Education • Last Lessons

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 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 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? Not having routine access to health care and medical home in adulthood may mean: • 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? Not having routine access to health care and medical home in adulthood may mean: • 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. Issues of Privacy, Self-Determinationand Disability Disclosure Some of the most important things parents and educators can teach children include self-awareness, self-confidence, and self-determination. Issues of privacy and disability disclosure are closely tied to these principles.

14. Issues of Privacy, Self-Determination,and Disability Disclosure There is no requirement to disclose a disability to anyone at any time. BUT . . .

15. Issues of Privacy, Self-Determination,and Disability Disclosure • Disclosing one’s disability ~ • Is essential to communicating with health care professionals • Is necessary to receive accommodations at work or in school • Is often needed to gain access to public programs or services and even some public places

16. Challenges ConcerningDisability Disclosure • Disability disclosure challenges are real for many young adults • They STILL don’t want to be different from their peers (“Everybody/no one else does it!”) • They are reluctant to accept responsibility and accountability for disclosure decision making (“It’s easier to let Mom and/or Dad do it!”) • Away from home for the first time, everybody KNOWS young adults are bulletproof! (“It won’t / doesn’t / can’t happen to me!”)

17. What Would You Want to Teach about Disability Disclosure? • Disclosure Decisions ~ • Are necessary (sometimes) • Are personal (always) • Affect many aspects of educational, employment, and social lives • Require thought, preparation, and practice • Can be empowering and lead to greater self-confidence and self-esteem • Involve SELF-DETERMINATION

18. Issues of Privacy, Self-Determination,and Disability Disclosure • Disclosure questions to consider ~ • Do I know enough about my condition and my circumstances? Am I prepared to make an informed choice? • Should I disclose? • If I decide to disclose, who are appropriate people to tell? • When should I disclose? • What should I disclose? • How much should I disclose?

19. Issues of Privacy and Disability Disclosure RESOURCE The 411 on Disability Disclosure: A Workbook for Youth with Disabilities http://www.ncwd-youth.info/resources_&_Publications/411.html

20. Seven Self-Care Skills(a.k.a. “academic or functional needs”) 1. Basic knowledge and management of health condition and/or disability. 2. Health care, personal hygiene practices, wellness and healthy choices in diet, exercise, risk-taking behaviors, etc. 3. Participation in health care transition planning and goal setting. 4. Doctor visits and interactions with health care professionals; issues related to privacy and confidentiality.

21. Seven Self-Care Skills(a.k.a. “academic or functional needs”) 5. Obtaining and monitoring medications, tests, equipment, and supplies. 6. Managing health needs and routines in and away from home, including emergencies. 7. Health care system organization, records, insurance, payment, and legal issues.

22. Basic knowledge and management of health condition and/or disability • Is able to relate basic facts about his/her condition and/or carries and can produce this information from wallet or purse, as appropriate. • Can describe how the condition or its treatment affects his/her body and daily life. • Can share with a medical professional important points about his/her medical history and current condition. • Can identify when there are unusual changes to his/her condition. • Asks questions of or expresses concerns to safe resources to learn more about his/her condition. • Keeps a personal health notebook or medical journal to track important changes and list questions. • Can keep, use, update, and tell others about personal medical forms. • Understands and can describe how getting older affects his/her condition.

23. Health care, personal hygiene practices, wellness and healthy choices in diet and exercise • Is able to toilet, dress, feed, bathe, and care for self or is able to direct someone else to do so. • Manages daily oral hygiene and routine medical tasks. • Understands and makes health choices concerning diet, smoking, alcohol or illegal drugs, sun exposure, regular exercise • Understands and can communicate to others about changes that take place to his/her body during puberty. • Understands about healthy preventive health care practices, such as the need for and when to get “well-child” and dental check-ups, immunizations, or other primary care assessments/screenings. • Can obtain or perform routine preventive self-exams. • Recognizes onset of disease or dysfunction, e.g., can take his/her own temperature, do blood glucose testing, report adverse drug reactions, etc.

24. Participation in health care provider transitionplanning and goal setting • Asks about a change or expresses discomfort going to a “kid’s doctor.” • Understands about changing to a doctor who treats mostly adults. • Can communicate what’s important in selecting an adult provider, e.g., size and type of practice, experience of the provider, location, applicable insurance plan or payment issues, accommodations that might be needed, etc. • Talks about or sets personal goals for taking care of his/her own health condition(s). • Acquires skills to assume more responsibility for self care. • Has talked with case manager, social worker, educator, or school counselor and asked for help with health care needs or planning for future changes in health care providers. • Participates in identifying and directing a team to assist in planning for coordinated health care transition.

25. Scheduling and participating in doctor visits and interactions with other health care professionals • Can identify and knows why he/she sees various types of doctors. • Knows which is her/her “main” doctor/dentist, medical home, and dental home. • Understands roles of non-physician providers, such as nurses, therapists, pharmacists, emergency personnel, and others. • Participates in planning for and scheduling visits. • Completes or directs completion of needed forms. • Describes or demonstrates health care problems he/she is having. • Answers and/or asks questions of health care providers. • Spends time without parent or guardian during visits. • Expresses needs or desires concerning medicines or treatments. • Understands and agrees to take medicines, treatments, or therapies. • Monitors need for immunizations or other routine or preventive care.

26. Obtaining and monitoring medications, tests,equipment, and supplies • Can communicate and understands dosing for medications. • Knows why he/she takes each medicine. • Understands possible side effects of medications or treatments. • Can take or administer medication correctly with minimal supervision. • Can monitor medications and supplies and report when to reorder. • Knows about results of laboratory or other tests. • Is capable of self-testing, if appropriate. • Can perform simple maintenance of equipment or assistive devices. • Can instruct others concerning medication, equipment, and use of assistive devices. • Observes his/her environment and reports needed changes or accommodations. • Requests or selects “over-the-counter” medications or supplies.

27. Managing health needs and routines in andaway from home, including emergencies • Can manage needed health care tasks in school or at other (work place) locations. • Communicates with unfamiliar others about condition or needs. • Participates in or directs IEP or Section 504 meetings at school. • Participates in after-school or community activities. • Takes responsibility for some activities without immediate adult supervision. • Uses protective equipment as needed (seat belts, helmets, mouth guards, pads, etc), knows safety rules, and avoids risk-taking behaviors. • Expresses emotions and employs constructive coping strategies during stressful times, e.g., talking about feelings, asking for help, mental-imagery, listening to music, calming techniques, etc. • Accepts responsibility for some routine chores at and away from home. • Obtains and directs transportation. • Develops self-advocacy skills.

28. Health care system organization, records,insurance, payment, and legal issues • Understands about privacy and confidentiality. • Completes or seeks assistance in completing needed forms/documents. • Keeps a diary or record of important information, goals, and questions. • Keeps record of insurance coverage, requirements, and payments. • Can identify available governmental or other resources for health-related advice and assistance. • Identifies and practices “what if” situations to avoid or handle emergencies and navigate in the health care system. • Understands basics about transfer of health care information among health care providers. • Incorporates health care planning into post-school goals for education, work, recreations, social and family relationships. • Learns about and plans alternatives for health insurance coverage as an adult. • Plans ahead for impact of maturation on disability or condition.

29. Teaching and LearningHealth Care Self-Care Skills RESOURCES American Academy of Pediatrics Transition Tools http://www.medicalhomeinfo.org/tools/trans.html University of Florida Institute for Child Health Policy Health Care Transition Resources http://hctransitions.ichp.ufl.edu/resources.html

30. Health Care Transition Education Research A Demonstration Model for School-Based Health Care Transition Education -- Observations: • Curriculum helped young adults with critical health literacy, self-advocacy, and self-determination skills • Integrated health care transition into school-based transition practice • Curriculum was perceived by both students and educators as highly relevant and valuable • 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

31. 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

32. How Health Care Relates to ~Employment and/or Post-Secondary Education • Acute care, routine exams, and preventive care through medical and dental homes are integral to obtaining and retaining education, employment, and community participation. • How, when, and how much of one’s medical condition(s) to share with co-workers, supervisors, other students, faculty. • The meanings and applications of terms like “privacy,” “confidentiality,” “informed consent,” “age of majority,” “transfer of rights,” etc. • What are the work place or campus benefits and expectations related to potential health care needs, i.e., sick leave, absenteeism, etc.

33. How Health Care Relates to ~Employment and/or Post-Secondary Education • Comprehending responsibilities and how to obtain and maintain health insurance/HMO benefits. • How to plan and prepare for health-related urgent or emergent needs in the work place or on campus. • Where/What are the sources/resources for information about and access to adult primary and specialty, physical and mental health care, wellness programs, etc.? • Understanding basic principles related to determining, selecting, and applying for health care benefits, choosing providers, deductibles and/or co-payments, prior authorization requirements, etc.

34. How Health Care Relates to ~Employment and/or Post-Secondary Education • Understanding civil rights and the ADA as it relates to one’s health- and disability-related needs. • Understanding and accessing health-related programs and services provided through state, federal, or community-based agencies and knowing how these programs impact or are impacted by employment or the educational environment. • How to partner with medical/dental homes in all aspects of health care decision-making and learning effective ways to establish and maintain such partnerships.

35. Important Last Thoughtsand Things to Learn/Teach

36. What Jan Brunstrom, MD, says to her patients • Value yourself – You were born for a purpose • Never give up – Be strong and courageous • Guard your heart – Hold on tight to your dreams • Embrace your journey – Don’t travel alone and learn from your trials • Be a friend – Other people matter, too, and they need you for who you are • Challenge the impossible – Change others’ perceptions • Work hard and take risks, but be patient – Progress and real success often take time • Practice, practice, practice

37. LAST LESSONS • Additional important things to remember about transition to adulthood~ • Start planning early!! • Involve the young person in planning and decision making as soon and as much as possible • Set reasonable priorities and timelines • EXPECT COMPLICATIONS • When you encounter a complex situation, ask and teach the young person how to ask for help. • Keep advocating for and empowering young adults to help them achieve their best possible adulthoods. • For Teachers: THINK ABOUT THE PROFESSIONALS WHO FIRST INFLUENCED YOU – THEY WERE TEACHERS! • For Parents and Families: YOU ARE YOUR CHILD’S FIRST TEACHERS AND LONGEST LASTING RESOURCE!

38. 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