FAMILIES & YOUTH Preparing for the Difference: Essential Skills

1. FAMILIES & YOUTH Preparing for the Difference: Essential Skills Mallory Cyr, BFA HRTW- Youth Coordinator Anna Cyr Family Consultant, CYSHCN Partners in Care Coordination Maine Parent Federation Patti Hackett, MEd HRTW- Co-Director & Team Lead Reno, NV Feb. 12, 2010

2. Health Care Transition Yeah that’s the title – but what are YOU really thinking? "Taking the “F” (fear) out of Health Care Transition for CYSHCN The KSAs of Essential Health Care Transition Skills Transition to Adulthood is the Ultimate Outcome

4. 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”

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

6. Growing Up: Completing college

7. CHANGING PERSPECTIVES

8. Personal Journey – Growing Up Ready To Live • Dream, Dx, New Dream • Hope vs Reality • Seeing & Modeling Success • Launch the “Why not” “let’s do” spirit • OBJ: State the importance of self differentiation, how to facilitate self-determination, and promote/practice life span skills that impact sustaining employment

9. 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

10. Health Care Transition Yeah that’s the title – but what are YOU really thinking? "Taking the “F” (fear) out of Health Care Transition for CYSHCN The KSAs of Essential Health Care Transition Skills Transition to Adulthood is the Ultimate Outcome

11. CHANGING PERSPECTIVES - 01 • 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?

12. CHANGING PERSPECTIVES - 02 • What are the fear and anxieties that delay the start of transition? • How does looking at a different perspective promote movement forward?

13. 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….

15. Screen for All Health Needs • Hygiene (look good, feel good, smell good) • Nutrition(Stamina, Bowel Management, obesity, etc.) • Exercise(fitness and stamina) • Sexuality Issues(masturbation, STIs, GLBTQ/Twin Spirits) • OB-GYN(Routine care, Birth Control, Rape) • Mental Health(genetic, situational) • Routine(Immunizations, Blood-work, Vision, Dentist, etc.)

16. Qs, As, Sharing?

17. DO or NOT DO, there is no “try”.

18. 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? Always: 45.2% Sometimes 16.3.% Never: 11.9% Usually 23.4%

20. HANDOUT Health & Wellness 101 The Basics Transitions – Changing Roles For Families Transitions – Changing Roles For Youth Q> How could YOU use this tool?

22. Shared Decision MakingShared Decision Making

23. Levels of SupportShared Decision Making

24. CHANGING PERSPECTIVES • Interdependent • Limited Support - coaching • Standby Support • Circle of Support – on-going • Legal: Health Surrogate, Power of Attorney

25. You can’t do it as well as I can I don’t want you to get hurt.

26. Safe Trials Why Not?

27. Qs, As, Sharing?

28. Handout Template: Activities of Daily Living Task Time Allowances Integrated Health Transition Planning

29. Personal Journey – Growing Up Ready To Live – U2! • Dream, Dx, New Dream  What about YOURS? • Hope vs Reality  Put YOURSELF in the plan • Seeing & Modeling Success  1 hr a wk • Launch the “Why not” “let’s do” spirit • OBJ: State the importance of self differentiation, how to facilitate self-determination, and promote/practice life span skills that impact sustaining employment

31. 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. 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. Qs, As, Sharing?

34. 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/

35. Qs, As, Sharing?

38. Where The Rubber Meets The RoadSo What Are You Going To Do DifferentlyChanging Practices First Begins with You…..Moving Beyond The ………..“yes but”

39. DO or NOT DO, there is no “try”.

40. T h a n k s ! Mallory Cyr mallorycyr@yahoo.com Anna Cyr annahcyr@yahoo.com Patti Hackett pattihackett@yahoo.com