Health Care Transition

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

2. Health Care Transition 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 Taking the “F” (fear) out of Health Care Transition for CYSHCN The KSAs of Essential Health Care Transition Skills FV National Conference

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

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.

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.

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)

8. www.hrtw.org

10. What is Health Care 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

11. Growing Up: Part of a Loving Family

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

15. Growing Up Ready to try new things!

16. Growing Up: Completing college

17. Growing Up Ready for LOVE

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

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

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

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.

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.

26. Part 02 Changing Roles

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?

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

30. Health & Transitions: YOU & Your Child • HANDOUT: Changing Roles • Fears & Anxiety • 1 new step at a time strategies

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

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)

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

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/

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

38. Candid Conversation Mallory Cyr 1.  Know when to ask for helpMy 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...

40. Imagine the Possibilities….

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.

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 Q & A

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

47. www.fvkasa.org

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

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