Health Care Transition

1. Health Care Transition HRTW Patti Hackett, MEd Natick, MA Mallory Cyr, BFA Sabattus, ME CeciShapland, RN, MSN Vadnais Heights, MN FV & HRTW Trish Thomas Laguna, NM 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 HRTW Topical Call – April 29, 2009

2. 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. 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.

5. 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. 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)

7. www.hrtw.org

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. Growing Up: Part of a Loving Family

11. Growing Up Ready to Have Fun! Community Inclusion Manager of the Team Buddy with Capt of the Team

12. Growing Up Ready to try new things!

13. Growing Up: Completing college

14. Growing Up Ready for LOVE

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

16. Growing up : Cultural Broker to the community Travis Solomon Indigenous: Southwest Pueblo: Laguna/Zuni Laguna, NM 29 years old Central NM Community College Major: Sociology GOAL: MPA, University of New Mexico.

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

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

20. Part 01 Perspective

21. 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.

24. 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. Part 02 Changing Roles

26. 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?

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

30. Candid Conversation Trish Thomas It was hard to give up control-that was two fold. • Traditional cultural side I was expected to do this, I did not want interference or reprimand in front of my children to letting them take the lead in decisions that impacted their lives.  2)  My son was not ready to take on this responsibility,  I thought he was to shy and not pushy enough to get done what needed to get done or to follow through, with what was expected of him…but I had never given him the chance and when I did was I surprised!

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

34. 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

35. 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)

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

38. 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/

39. 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

40. 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...

42. Candid Conversation Ceci Shapland • The smile is the reward what I learned when I let go little by little 2. What if you never got to make a mistake and start again? 3. You never really lose all the anxiety, but it gets a little easier each time. (Disneyland trip) Advice to providers: Do not say it cannot be done. That is not an option-creative problem solving works!!!

44. Imagine the Possibilities….

45. 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.

46. Candid Conversation Trish Thomas 1. Every family has a culture and beliefs. 2. We respect each other by honoring these. 3. Having the opportunity to try – your child will surprise you. It takes practice and skills.

48. Patti Hackett pattihackett@yahoo.com Mallory H. Cyr mallorycyr@hrtw.org mallorycyr@yahoo.com Ceci Shapland cecishapland@hrtw.org Trish Thomas tthomas@familyvoices.org Julie Sullivan fvtn@tndisability.org Q & A

49. www.familyvillage.wisc.edu www.familyvillage.wisc.edu/

50. www.fvkasa.org