1. Health Care Transition "Preparing for the Difference: Are You Ready to Change Roles? Transition to Adulthood is the Ultimate Outcome" 1 Yeah that’s the title – but what are YOU really thinking?

2. Health Care Transition Taking the “F” (fear) out of Health Care Transition for CYSHCN The KSAs of Essential Health Care Transition Skills FV National Conference HRTW Patti Hackett, MEd Natick, MA Mallory Cyr, BFA Sabattus, ME FV -ME Anna H. Cyr Sabattus, ME FV-TN Julie Sullivan Rock Island, TN 2

3. Objectives in Operational/ Behavioral Terms PART 01: The learner will state the rationale behind the importance of addressing and acknowledging anxieties and fears of families before teaching transition skills that are transferable to youth. PART 02: The learners will be able to identify differences between KSAs - Knowledge, Skills and Abilities as they relate to preparing for practice and mastery of essential skills for Health Care Transition to Adulthood for CYSHCN 3

4. Objectives in Operational/ Behavioral Terms PART 03: The learner will identify lessons learned, apply it to their personal journey with their child and family and incorporate changes in work activities and functions that support other families and CYSHCN. 4

5. Julie Sullivan TN Candid conversation Mallory Cyr ME Anna Cyr ME Patti Hackett MA Advice with Hindsight 5

6. Health is Critical to School Success & Sustaining Employment Success in the classroom, in the community, and on the job requires that young people are healthy. (performance and productivity) Young people with life-long health issues need to learn early how to maintain and sustain health and wellness -- and to participate in their health care decisions. 6

7. Outcome #6: Youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work and independence -- CSHCN ages 12-17 only (derived) Outcome not achieved Outcome successfully achieved - 58.8+ 41.2 7

8. www.hrtw.org 8

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10. What is Health Care 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. 10

11. Growing Up: Part of a Loving Family 11

12. 12 Growing Up: Supportive Family (2 philosophies)

13. Growing Up: Ready to Have Fun! Putting LIFE on the front burner & the Dx on the back burner Not …… “can we” but …….“how do we”

14. Growing Up: As individuals Different personalities Different Dreams Same Dx but different 14

15. Growing Up Ready to try new things! 15

16. Growing Up: Completing college 16

17. Growing Up Ready for LOVE 17

18. Growing up ready for work ……….. & vacation 18

19. Growing Up and are Adults Health & Wellness …. + Humor 19

20. Growing Up: Planning for What’s Next! 20

21. What are we What are we saying NO to? The opportunity to TRY To fail, learn and to try again 21 You can’t do it as well as I can I don’t want you to get hurt.

22. 1. CHANGING PERSPECTIVES: What are your first thoughts about transition for your child/youth? Thinking again from another point of view, how else can you describe this emotion, the fears, the anxieties, where are you confident or not? What are the fear and anxieties that delay the start of transition. How does looking at a different perspective promote movement forward. 22

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24. Anna Cyr Take small steps, practice letting go Two daughters – different individuals Julie Sullivan Parents need parents who have been there and need their guidance on where to start. Due to day to day struggles we (parents) won’t begin unless forced to~ either by their youth’s age, service requirements or other parents bringing us along. 24

25. Candid Conversation Julie Sullivan Some questions that HRTW professionals asked would have been ignored or I would have been insulted for being asked if asked to me by teachers, MD’s or other providers. Parents and speaking from personal experience, I felt it carried weight and was real. I took notice and considered how I can apply this to my daughter’s life. (myself & our staff) We not only needed parents to ask those hard questions but we need to be held accountable and asked “did you?” We did this on follow up conf. calls. We couldn’t ask other parents to do things if we weren’t doing it ourselves. In the process our parents leaders made copies of insurance cards, chore charts, and let their children order at McDonalds. 25

26. Part 02 Changing Roles 26

27. Question: (C6Q08) How often do [CHILD'S NAME]'s doctors or other health care providers encourage [him/her] to take responsibility for [his/her] health care needs? NeverSometimesUsuallyAlways 11.916.32348.7 27

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29. Handout: Portable Medical Summary Carry in your wallet Good Days - Cheat Sheet: Use as a reference tool - Accurate medical history - Correct contact #s - Document disability Health Crisis - Expedite EMS transport & ER/ED care - Paper talks when you can not 29

30. Health & Transitions: YOU & Your Child HANDOUT: Changing Roles Fears & Anxiety 1 new step at a time strategies Carry & Present Health Insurance Card 12345 YOU YOUR CHILD YOUR STUDENT 30

31. Mallory Cyr Mallory Cyr Balance between childhood- being a child and when the need to know and do/take action. Julie Sullivan One parent who attended our transition training said she never thought of the insurance card and he will be going to college next year. Within a week of the training she gave him a card and this opened a discussion up of what a co-pay is and what your insurance card is for and how important it is to have with you. She shared that her son was very happy to have the card and proudly put it with his learners permit in his wallet. 31

32. FAMILIES: Prepare for Changing Roles Temporary spokesperson on behalf of minor child (until age 18, or declared by the court) - 2 voices to be heard: families and CY - Circle of Support - Assent to Consent handout: Changing Roles 32

33. 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) 33

34. Julie Sullivan TN Candid conversation Mallory Cyr ME Anna Cyr ME Patti Hackett MA Advice with Hindsight 34

35. Part 03 Transition Skills in our life and in our work 35

36. FAMILIES: Prepare for Changing Roles Self-Differentiation is a progressive, internal interplay between autonomy (separation) and connection (togetherness) while progressing toward developing and known goals. SOURCE: http://rodesmith.com/2006/03/25/bowen-differentiation/http://rodesmith.com/2006/03/25/bowen-differentiation/ 36

37. TOOL: Promote Individual Families - protective Children / Youth - being visible - community aware *** be in charge of something Simple Acts …..BIG Returns Role in the family - Grocery Store - Nightly Charge Wheelchair - Get Family Mail /sorting - Medications – pill box - 3 indicators on Rx bottle 37

38. Candid Conversation Mallory Cyr 1. Know when to ask for help My parents always supported me to try things on my own but they also helped me to learn to recognize when I had reached my breaking point and needed additional support and how to identify those key players. Over time I got better at this skill and could ask for help BEFORE I reached my breaking point. 2. Shoot for the stars/find a way. Growing up, I was never taught to consider my physical challenges to be a limiting factor in anything I wanted to do. I always thought with unlimited dreaming and what I WANTED to do. If it did end up being challenging we looked at ways to adapt or modify it or how I could do it, not what I should do instead. I think because of that I continue to aspire to higher goals and have become more resourceful in finding solutions when I do meet a challenge... 38

39. Skills Before 10 Before 18 Carry and present insurance card X Know wellness baseline, Dx, Meds XX Make own Doctor appts X Call in Rx refills X Learning Choice X Decision making (assent to consent) X Prepare for Doc visit: 5 Qs XX Present Co-pay XX Assess: Insurance, SSI, VR X Gather disability documentation X 39

40. Imagine the Possibilities…. 40

41. Julie Sullivan TN Candid conversation Mallory Cyr ME Anna Cyr ME Patti Hackett MA Advice with Hindsight 41

42. Candid Conversation Julie Sullivan We need to find one thing we can do fairly immediate to feel as if we are working and making progress toward this goal. We need to find one thing that our youth can implement fairly immediate so they too can have satisfaction in progressing toward independence. 42

43. Action Plan I Did It! 7 days - Step 1: In one week I will commit to do…… 30 days - Step 2: By next month I will commit to do…… 90 days - Step 3: In three months I will commit to do…… 43

44. What are we saying NO to? 44 DO or NOT DO, there is no “try”. Jedi Master Yoda

45. Patti Hackett pattihackett@yahoo.com Mallory H. Cyr mallorycyr@hrtw.org mallorycyr@yahoo.com Anna H. Cyr annahcyr@yahoo.com Julie Sullivan fvtn@tndisability.org 45 Q & A

46. www.familyvillage.wisc.edu/ www.familyvillage.wisc.edu 46

47. www.fvkasa.org 47

48. ??? NYLN www.nyln.org/ 48

49. www.ncwd-youth.info/index.html 49

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51. www.familyvoices.org 51

52. www11.georgetown.edu/research/gucchd/nccc 52

53. infanthearing.org 53

54. Medicalhomeinfo.org 54

55. www.hdwg.org/catalyst State-at-a-Glance Chartbook on Coverage and Financing of Care for Children and Youth with Special Needs 55

56. http://www.championsinc.org 56

57. www.hrtw.org 57