Patti Hackett, MEd Co-Director, HRTW National Resource Center Bangor, ME

1. Transition to Adulthood: Preparing for the Difference for CYSHCN Patti Hackett, MEd Co-Director, HRTW National Resource Center Bangor, ME PEDIATRICS FOR THE PRACTITIONER UPDATE 2007 Johns Hopkins University School of Medicine September 27, 2007

2. Disclosure • Neither I nor any member of my immediate family has a financial relationship or interest with any proprietary entity producing health care goods or services related to the content of this CME activity. • My content will not include discussion/reference of any commercial products or services. • I do not intend to discuss an unapproved/investigative use of commercial products/devices.

3. www.hrtw.org

4. Health Impacts All Aspects of Life Success in the classroom, within the community, and on the job requires that young people are healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisions.

5. HRTW TEAM Medical Home & Transition Richard Antonelli, MD, MS, FAAP Patience H. White, MD, MA, FAAP Betty Presler, ARNP, PhD Title V Leadership Toni Wall, MPA Kathy Blomquist, RN, PhD Theresa Glore, MS Family, Youth & Cultural Competence Mallory Cyr Ceci Shapland, MSN Trish Thomas Federal Policy Patti Hackett, MEd Tom Gloss Interagency Partnerships Debbie Gilmer, MEd HRSA/MCHB Project Officer Elizabeth McGuire

6. Got Data? Data Resource Center National Survey for CSHCN www.cshcndata.org

7. Supporting Success: It Take ALL of US!

8. Do you have “ICE” in your cell phone contact list? To Program………. • Create new contact • Space or Underscore ____ • (this bumps listing to the top) • Type “ICE – 01” • – ADD Name of Person • - include all ph #s • - Note your allergies • You can have up to 3 ICE contacts (per EMS)

9. Discuss what is most important to young people with SHCN for their transition to adulthood and the current realities for YSHCN Review the medical perspective and differences between pediatric and adult health care systems Learn what a health care professional can do to assist youth with transition Objectives

10. What do you think YOUTH want to know about their health care/status? At what age should children start asking their own questions to their Doctor? At what age does your practice encourage assent signatures? Discussion

11. What does the Data tell us? Not everything that can be counted counts, and not everything that counts can be counted. Albert Einstein

12. Youth With Disabilities Stated Needs for Success in Adulthood PRIORITIES: • Career development(develop skills for a job and how to find out about jobs they would enjoy) • Independent living skills • Finding quality medical care(paying for it; USA) • Legal rights • Protect themselves from crime(USA) • Obtain financing for school(USA) SOURCE: Point of Departure, a PACER Center publication Fall, 1996

13. Youth are Talking: Health Concerns Survey - 1300 YOUTH with SHCN / disabilities Main concerns for health: • what to do in an emergency, • how to get health insurance, • what could happen if condition gets worse. SOURCE: Joint survey • Minnesota Title V CSHCN Program • and the PACER Center, 1995

14. Youth are Talking: Are We Listening? Experiences that were most important: • learning to stay healthy • getting health insurance SOURCE: National Youth Leadership Network Survey-2001, 300 youth leaders disabilities

15. Outcome Realities • Nearly 40% cannot identify a primary care physician • 20% consider their pediatric specialist to be their ‘regular’ physician • Primary health concerns are not being met • Fewer work opportunities, lower high school grad rates and high drop out from college • YSHCN are 3 X more likely to live on income < $15,000 CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

16. Internal Medicine Nephrologists (n=35) Maria Ferris, MD, PhD, MPH, UNC Kidney Center

17. Time Jan 2004

18. Societal Context for Youth without Diagnoses in Transition • Parents are more involved - dependency “Helicopter Parents” • Twixters = 18-29 - live with their parents / not independent - cultural shift in Western households - when members of the nuclear family become adults, are expected to become independent • How they describe themselves (ages 18-29) 61% an adult 29% entering adulthood 10% not there yet (Time Poll, 2004)

19. Discuss what is most important to young people with SHCN for their transition to adulthood and the current realities for YSHCN Review the medical perspective and differences between pediatric and adult health care systems Learn what a health care professional can do to assist youth with transition Objectives

20. When did you transition to adult care? How about your children? Briefly share your experience transitioning a patient to adult care? What skills do youth need before transitioning ? How do you support families in their transitioning roles? Discussion

21. The Ultimate Outcome: Transition to Adulthood Health Care Transition Requires Time & Skills for children, youth, families and their Doctors too!

22. What is Transition? Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals. Components of successful transition • Self-Determination • Person Centered Planning • Prep for Adult health care • Work /Independence • Inclusion in community life • Start Early

24. “The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.” Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374 Health & Wellness: Being Informed

25. Shared Decision Making

26. Levels of Support

27. Informed Decision Makers FERPA Family Education Rights & Privacy Act HIPAA Health Insurance Portability and Accountability Act 1. Privacy  Records 2. Consent  Signature (signature stamp) - Assent to Consent - Varying levels of support - Stand-by (health surrogate) - Guardianship (limited to full)

28. Prepare for the Realities of Health Care Services Difference in System Practices • Pediatric Services: Family Driven • Adult Services: Consumer Driven The youth and family finds themselves between two medical worlds …….that often do not communicate….

30. Transition to Adulthood

31. Discuss what is most important to young people with SHCN for their transition to adulthood and the current realities for YSHCN Review the medical perspective and differences between pediatric and adult health care systems Learn what a health care professional can do to assist youth with transition Objectives

32. Are you familiar with the Consensus Statement? The new Joint Principles? How do you teach children and youth about their wellness baseline? What 3 essential skills you can teach in the office encounter? Discussion

33. A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs • American Academy of Pediatrics • American Academy of Family Physicians • American College of Physicians - American Society of Internal Medicine Pediatrics 2002:110 (suppl) 1304-1306

34. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care • Identify primary care provider • Peds to adult • Specialty providers • Other providers Pediatrics 2002:110 (suppl) 1304-1306

35. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 2. Identify core knowledge and skills • Encounter checklists • Outcome lists • Teaching tools

36. Core Knowledge & Skills: POLICY • Dedicated staff position coordinates transition activities • Office forms are developed to support transition processes • CPT coding is used to maximize reimbursement for transition services • Legal health care decision making is discussed prior to youth turning 18 • Prior to age 18, youth sign assent forms for treatments, whenever possible • Written transition policy states age youth should no longer see a pediatrician

37. Core Knowledge & Skills: MEDICAL HOME • Practice provides care coordination for youth with complex conditions 2. Practice creates an individualized health transition plan before age 14 3. Practice refers youth to specific family or internal medicine physicians 4. Practice provides support and confers with adult providers post transfer 5. Practice actively recruits adult primary care /specialty providers for referral

38. Core Knowledge & Skills: FAMILY & YOUTH 1. Practice discusses transition after diagnosis, and planning with families/youth begins before age 10 2. Practice provides educational packet or handouts on transition 3. Youth participate in shared care management and self care (call for appt/ Rx refills) 4. Practice assists families/youth to develop an emergency plan (health crisis and weather or other environmental disasters)

39. Core Knowledge & Skills: FAMILY & YOUTH 5. Practice assists youth/family in creating a portable medical summary 6. Practice assists with planning for school and/or work accommodations 7. Practice assists with medical documentation for program eligibility (SSI, VR, College) 8. Practice refers family/youth to resources that support skill-building: mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences

40. Core Knowledge & Skills: HEALTH CARE INSURANCE • Practice is knowledgeable about state mandated and other insurance benefits for youth after age 18 2. Practice provides medical documentation when needed to maintain benefits

41. Core Knowledge & Skills: SCREENING 1. Exams include routine screening for risk taking and prevention of secondary disabilities 2. Practice teaches youth lifelong preventive care, how to identify health baseline and report problems early; youth know wellness routines, diet/exercise, etc.

42. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 3. Maintain an up-to-date medical summary that is portable and accessible • Knowledge of condition, prioritize health issues • Communication / learning / culture • Medications and equipment • Provider contact information • Emergency planning • Insurance information, health surrogate Pediatrics 2002:110 (suppl) 1304-1306

43. Create Portable Medical Summary • Use as a reference tool • - Accurate medical history & contact #s • - Carry in your wallet. • Use for disability documentation

44. Preparing for the 15 minute Doctor Visit • Know Your Health & Wellness Baseline • How does your body feel on a good day? • What is your typical body temperature, • respiration count, plus and elimination • habits?

45. Survive & Thrive! • Encourage questions at each visit. • TOOL: 5 Q • - Assent: co-sign treatment plans. • - Youth calls for appointments and Rx refills • Concise Medical Reporting • Give brief health status and overview of needs. • Know the emergency plan when health changes.

46. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 4. Create a written health care transition plan by age 14: what services, who provides, how financed • Expecting, anticipating and planning • Experiences and exposures • Skills: practice, practice, practice • Collaboration with schools and community resources Pediatrics 2002:110 (suppl) 1304-1306

47. Collaboration with Community Partners • Special Education Co-ops • Higher Education • Vocational Rehabilitation/ • Workforce Development • Centers for Independent Living • Housing, Transportation, Personal Assistance, and Recreation • Mental health • Grant projects in your state

48. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 5. Apply preventive screening guidelines • Stay healthy • Prevent secondary disabilities • Catch problems early Pediatrics 2002:110 (suppl) 1304-1306

49. Health & …. Life-Span Secondary Disabilities - Prevention/Monitor - Mental Health, High Risk Behaviors Aging & Deterioration • Info long-term effects (wear & tear; Rx, health cx) - New disability issues & adjustments

50. Screen for All Health Needs • Hygiene • Nutrition(Stamina) • Exercise • Sexuality Issues • Mental Health • Routine(Immunizations, Blood-work, Vision, etc.) • Secondary Conditions/Disabilities • Accelerated Aging issues