1. www.hrtw.org Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME Patience H. White, MD, FAAP, MA Medical Advisor- HRTW Center Washington, DC Sacheen Smith Albuquerque, NM Transition to Adulthood: Preparing for the Difference for Children and Youth with Special Health Care Needs Family Voices Conference Moving Forward: The Future of Health Care for Children and Youth Washington, DC May 26, 2007

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

4. www.hrtw.org 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. www.hrtw.org Do you have “ICE” in your cell phone contact list? 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) To Program……….

6. www.hrtw.org Supporting Success: It Take ALL of US!

7. www.hrtw.org Objectives 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

8. www.hrtw.org Discussion 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?

9. www.hrtw.org Sacheen Smith Albuquerque, NM sheenie1814@aol.com

10. www.hrtw.org Moving Forward Internship: Washington, DC Small Business Administration, Office of Native American Affairs Environmental Protection Agency, Office of Congressional Relations Health & Wellness Johns Hopkins, was the best Opportunity to get the great health care

11. www.hrtw.org Life Transitions Diagnosed with Keratoconus Health Care: - Colorado Eye Associates - Moved back to NM to be near family - Began care with Indian Health Services - Surgeries: Corneal Transplants - Contract Health Declined Services - Sought other resource Progressive Eye Disease Diagnosed with Optic Atrophy

12. www.hrtw.org Another Obstacle, Healing & Responsibilities Diagnosed with a Brain Tumor Maintain Cultural Balance - Friends in CT had healing ceremonies for me - In the middle of radiation and chemotherapy, I would travel to CT and participate to gain more spiritual strength Responsibilities to uphold: - Take charge of my Health Care - Committed to set up my appointments - Arrangements with school and the internship - Make arrangements to /from Johns Hopkins

13. www.hrtw.org Recommendations Full Coverage: Native Americans to have healthcare coverage, including prescriptions, on and off the reservation Create a Policy: where we can train people interested in Health Care, to educate youth with disabilities to self- determine their own Health Care Sustaining Culture: Annie Wauneka Philosophy to educate the medicine men and Health Care Professionals to maintain balance

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

15. www.hrtw.org Youth With Disabilities Stated Needs for Success in Adulthood PRIORITIES: 1Career development (develop skills for a job and how to find out about jobs they would enjoy) 2Independent living skills 3Finding quality medical care (paying for it; USA) 4Legal rights 5Protect themselves from crime (USA) 6Obtain financing for school (USA) SOURCE: Point of Departure, a PACER Center publication Fall, 1996

16. www.hrtw.org 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 Youth are Talking: Health Concerns

17. www.hrtw.org 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

18. www.hrtw.org Outcome Realities Nearly 40% cannot identify a primary care physician 20% consider their pediatric specialist to be their ‘regular’ physician Primary health concerns that 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

19. www.hrtw.org Internal Medicine Nephrologists (n=35) Survey ComponentsPercentages Percent of transitioned patients< 2% in 95% of practices Transitioned pats. came with an introduction 75% Transitioned patients know their meds 45% Transitioned patients know their disease 30% Transitioned patients ask questions 20% Parents of transitioned patients ask questions 69% Transitioned Adults believed they had a difficult transition 40% Maria Ferris, MD, PhD, MPH, UNC Kidney Center

20. www.hrtw.org Objectives 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

21. www.hrtw.org Discussion 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?

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

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

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25. Health & Wellness: Being Informed “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

26. www.hrtw.org Shared Decision Making ProviderParentYoung Person Major responsibility Provides careReceives care Support to parent and child managesparticipates consultantsupervisormanager resourceconsultantsupervisor

27. www.hrtw.org Levels of Support Shared Decision Making Levels of SupportFamily RoleYoung Person IndependentCoach Can do or can direct others Interdependent Consultant Coordinates Can do or can direct others May need support in some areas DependentManages Coordinates (expand circle of support) Needs support full-time in all areas

28. www.hrtw.org 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)

29. www.hrtw.org 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. www.hrtw.org PediatricAdult Age-relatedGrowth& development, future focussed Maintenance/decline: Optimize the present FocusFamilyIndividual ApproachPaternalistic Proactive Collaborative, Reactive Shared decision- making With parentWith patient ServicesEntitlementQualify/eligibility Non-adherence>Assistance> tolerance Procedural PainLower threshold of active input Higher threshold for active input Tolerance of immaturity HigherLower Coordination with federal systems Greater interface with education Greater interface with employment Care provisionInterdisciplinaryMultidisciplinary # of patientsFewerGreater

31. www.hrtw.org Transition to Adulthood

32. www.hrtw.org Objectives 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

33. www.hrtw.org Discussion 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?

34. www.hrtw.org 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

35. www.hrtw.org 1.Identify primary care provider  Peds to adult  Specialty providers  Other providers Pediatrics 2002:110 (suppl) 1304-1306 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care

36. www.hrtw.org 2. Identify core knowledge and skills  Encounter checklists  Outcome lists  Teaching tools 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care

37. www.hrtw.org Core Knowledge & Skills: POLICY 1.Dedicated staff position coordinates transition activities 2.Office forms are developed to support transition processes 3.CPT coding is used to maximize reimbursement for transition services 4.Legal health care decision making is discussed prior to youth turning 18 5.Prior to age 18, youth sign assent forms for treatments, whenever possible 6.Written transition policy states age youth should no longer see a pediatrician

38. www.hrtw.org Core Knowledge & Skills: MEDICAL HOME 1.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

39. www.hrtw.org 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)

40. www.hrtw.org 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

41. www.hrtw.org Core Knowledge & Skills: HEALTH CARE INSURANCE 1.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

42. www.hrtw.org 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.

43. www.hrtw.org 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 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care

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

45. www.hrtw.org 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?

46. www.hrtw.org 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.

47. www.hrtw.org 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 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care

48. www.hrtw.org 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

49. www.hrtw.org 5. Apply preventive screening guidelines  Stay healthy  Prevent secondary disabilities  Catch problems early 6. Ensure affordable, continuous health insurance coverage  Payment for services  Learn responsible use of resources Pediatrics 2002:110 (suppl) 1304-1306 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care

50. www.hrtw.org 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

51. www.hrtw.org 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

52. www.hrtw.org Transition & ……Insurance NO HEALTH INSURANCE 40% college graduates (first year after grad) 1/2 of HS grads who don’t go to college 40% age 19–29, uninsured during the year 2x rate for adults ages 30-64 SOURCE: Commonwealth Fund 2003

53. www.hrtw.org 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)

54. www.hrtw.org Celebrate the Paperwork! It Means You are Alive! Partners in Paying - INSURANCE CARD: Carry & Present - Fill in insurance forms ahead of visit - Learn about coverage and coding - Child/Youth give the co-pay - Age 10 – call for appt & Rx refills

55. www.hrtw.org Having a Voice: Children & Youth - Start early: carry insurance card - Present insurance card - Prepare for Doc visit: 5 Qs - Know wellness baseline - Practice calling for Rx, appts - Assess decision making, provide supports when needed. (ASSENT TO CONSENT)

56. www.hrtw.org Families: Prepare for Changing Roles Temporary spokesperson on behalf of minor child (until age 18, and declared by the court) - Plant the suggestion: Who is your patient, future appt alone with the patient AND offer ideas what do while family waits in the waiting room. - 2 voices to be heard: families and CY - ASSENT TO CONSENT - New time/roles without guilt

57. www.hrtw.org Providers: Prepare for Changing Roles Establish and post transition policy (gets everyone thinking ahead and not feeling ambushed) - Plant the suggestion: Who is your patient, future appt alone with the patient AND offer ideas what do while family waits in the waiting room. - Chronic health issues – CY need to be competent in their information and decision making. Ask before offering the answer.

58. www.hrtw.org Transition & ……Sexuality

59. www.hrtw.org The Concerns -- Teachers  What is my role? (legal too!)  Balance need to know  Balance cultural / religious beliefs  Open dialogue - respect and privacy  What to share or not with parents?  Where are the experts? Role models?

60. www.hrtw.org Who Starts the Discussion? 1.Medical (Doc, Nurse, OT/PT) 2.Family (how early?) 3.Teachers 4.Community resources Everyday messages: TV, videos, Friends, Internet – family, community

61. www.hrtw.org Family Roles  What pediatricians & teachers don’t know - don’t want to know  Discussion with primary care - referral  Medical Home www.medicalhomeinfo.com www.medicalhomeinfo.com (Sexuality as part of REAL comprehensive care plan)  Including in the IEPs, OT/PT plans

62. www.hrtw.org Integrated Sexual Healthcare  Importance of sexuality in healthcare  Psychologist’s responsibility  Rehab team sharing responsibility  Patient’s ranking of sexuality as important

63. www.hrtw.org Treatment Planning  Identifying problem  Sample definition of problem -Integration into social community -Expansion of strategies for sexual expression - Erectile dysfunction - Female arousal disorder - Sexual dysfunction

64. www.hrtw.org Treatment  Rehab Psychologist inquires about sexuality  Patient defines problem  Rehab Psychologist defines treatment problem to team  Team members decide who will be involved (OT, PT, Social Work, Recreation therapy)

65. www.hrtw.org Family Roles  Changing role: Parent  Personal Support  Honesty & Dignity (before puberty)  Pre-plan (smoothing out awkward moments)  When personal values differ  Terminal does not mean asexual

66. www.hrtw.org Youth & Family Roles  Masturbation Time!  Supplies:  Youth (directs)  Parent (gathers)  Role Switch: parent  personal support  Clean-up (no talking)  Role Switch: personal support  parent

67. www.hrtw.org Youth & Family Roles  Assess - The Plan, Supplies & Support  Revise supports - disease progression  Libido change: Rx Traditional - Alternative

68. www.hrtw.org Resources  www.MyPleasure.com www.MyPleasure.com  www.Sexualhealth.com www.Sexualhealth.com  The Ultimate Guide to Sex and Disability (Kaufman, Silverberg, & Odette, 2003)  Quality Mall – Person Centered services supporting people with developmental disabilities http://www.qualitymall.org/directory/dept1.asp?deptid=16

69. www.hrtw.org Bottom line: with or without us- youth and families get older and will move on…Think what can make it easier; do what’s in your control and support youth to tackle what’s their control. 1. Start early 2. Ask and reinforce life span skills prepare for the marathon 3. Assist youth to learn how to extend wellness 4. Reality check: Have all of us done the prep work for the send off before the hand off?

70. www.hrtw.org What would you do, if you thought you could not fail?

71. www.hrtw.org Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME pattihackett@hrtw.org Patience H. White, MD, FAAP, MA Medical Advisor- HRTW Center Washington, DC pwhite@arthritis.org Sacheen Smith Albuquerque, NM sheenie1814@aol.com