1. Transition to Adulthood: Improving Outcomes Advice with Hindsight & Wisdom National Policy, Progress and Trends HRTW National Center Mallory Cyr Youth Coordinator Patti Hackett, MEd Co-Director & Team Lead Reno, NV Feb. 12, 2010

2. About Me….and …. YOU Ideas Speak too fast – tell me Have a question, ask it Promise : Agree / Disagree Ah ha! Squirm About YOU: Experts in the Room Specialist Youth/Young Adults Dentist Teachers OT/PT Voc Rehab Counselors Mental Health School Nurses Social Workers

3. www.hrtw.org

5. Do you have “ICE” in your cell phone contact list? www.icesticker.com 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. 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…… 6

7. “You cannot educate a child who is not healthy, and you cannot keep a child healthy who is not educated.” Jocelyn Elders “You cannot work if you are not healthy, and you cannot be ……...” Patti Hackett

8. Outcome #6: Youth with special health care needs who receive the services necessary to make appropriate transitions to adult health care, work and independence -- CYSHCN ages 12-17 only (derived) NO: 54.0% YES: 46.0%

9. 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. 9

10. Objectives in Operational/ Behavioral Terms PART 02: The learners will be able to identify what the data says AND 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 10

11. Success at the End of the Day: Skill-building, Coaching, Processing & Accelerated Learning What to expect from us. What we expect from you! Meeting your needs today. Getting to your most important issues. What questions did you come with today? (write it down / share it!) OBJ: State the role of youth in planning their future.

12. FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important?  Self-perception as not “handicapped”  Involvement with household chores  Having a network of friends  Having non-disabled and disabled friends  Family and peer support  Parental support w/out over protectiveness Source: Weiner, 1992

13. FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important?  Self-perception as not “handicapped”  Involvement with household chores  Having a network of friends  Having non-disabled and disabled friends  Family and peer support  Parental support w/out over protectiveness Source: Weiner, 1992

14. Hmmmm……. Reactions? Discussion First thoughts?

15. Qs, As, Sharing?

16. Time Jan 2004

17. Societal Context for Transition for Youth without Medical Conditions Parents are more involved - dependency “Helicopter Parents” …Blackhawk types …(CBS 2007) 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)

18. Jedi Master, Yoda What are we saying NO to? 18 DO or NOT DO, there is no “try”.

19. Qs, As, Sharing?

22. Automatic Knowledge Price of Gasoline? Who are the World Series Champs? Time of favorite TV show? First thing you do in the morning? Bank PIN #

23. Mastery, Automatic Response, Routine Yup, It’s About YOU! Health & Wellness Baseline – Know Yours? How does your body feel on a good day? What is your typical - body temperature - respiration count - elimination habits? - quality of skin (front and back, ck butt 2x a yr)

24. 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 ? Never: 10.9% Sometimes/Usually 39.4% Always: 49.7%

25. 3 Qs Checking YOUR comfort zone Can Do Wants to Needs to Learn Someone else will have to do this for my child 1. My child carries their own health insurance card 2. Before a doctor’s appointment my child prepares written questions to ask. 3. My child co-signs the “permission for medical treatment form” (with or without signature stamp, or can direct others to do so)

26. What are we What are we saying NO to? The opportunity to TRY To fail, learn and to try again 26 You can’t do it as well as I can I don’t want you to get hurt.

27. What are we What are we saying NO to? The more YOU do the more invisible your child/youth is. 27 Safe Trials Why Not?

28. Jedi Master, Yoda What are we saying NO to? 28 DO or NOT DO, there is no “try”.

29. Qs, As, Sharing?

30. Outcomes & Skills Needed 30

31. 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”

32. Growing Up: As individuals Different personalities Different Dreams Same Dx but different 32

33. Growing Up: Completing college 33

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

35. Growing Up Ready for LOVE 35

36. Growing up ready for work ……….. & vacation 36

37. Growing Up Ready to try new things! 37

38. Growing Up Ready to Make $ - and Pay Taxes

40. Question C6Q0A : Have [CHILD'S NAME]'s doctors or other health care providers talked with you or [CHILD'S NAME] about [his/her] health care needs as [he/she] becomes an adult? 40 NO: 58.9% YES: 41.1%

41. Screening SECONDARY DISABILITIES - Prevention/Monitor - Mental Health - High Risk Behaviors AGING & DETERIORATION - Info long-term effects (wear & tear; Rx, health cx) - New disability issues & adjustments

42. 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.)

43. Transition Post-School Outcomes Employment and job training  Health Post-secondary education  Health Independent/home living  Health Community Life  Health Leisure and recreation  Health What is Wellness? "You cannot educate a child who is not healthy, and you cannot keep a child healthy who is not educated." JOCEYLN ELDERS

44. Question: (C6Q0A_B) Have they (child's doctors and other health care providers) talked with you about having [CHILD'S NAME] eventually see doctors or other health care providers who treat adults? NO 50.6% Family Docs 39.2% YES 10.2%

45. 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

46. Question: (C6Q0A_E) Has anyone discussed with you how to obtain or keep some type of health insurance coverage as [CHILD'S NAME] becomes an adult? YES: 19.5% NO: 85%

47. Maintaining Private Health Insurance - Extended the age of dependent coverage POST age 18 with/without disabilities. Unmarried, childless young adult, most require student status (20 states) NV - NO age 24 — DE, IN, SD* age 25 — CO, ID, ME, MD, MT, NM, RI, TX, VA, WA, WV age 26 — CT, MA, NH, UT age 30 — FL, NJ, SD* employer option

48. 48 Michelle’s Law (October 9, 2009) – Medical Leave  House Bill 2851 (HR 2851), otherwise known as Michelle’s Law, is a federal law that requires health plans and issuers of health insurance coverage to continue coverage for college students who are forced to take a leave of absence or change their enrollment status due to a serious illness or injury.  This law applies to fully insured and self-funded (ERISA and non-ERISA) Group and Individual medical, pharmacy, behavioral health and, when part of the health plan, dental and vision coverage.

49. Maintaining Private Health Insurance - Adult disabled dependent coverage NV NO (unable to work, often DD, physical disabled (38 states) NV NO TX AZ, AR, CA, CT, FL, GA, HI, ID, IL, IN, LA, ME, MD, MA, MI, MN, MS, MT, NE, NH, NJ, NM, NY, NC, ND, OH, OR, RI, SC, SD, TN, TX, UT, VT, VA, WA, WI, WY

50. Maintaining Private Health Insurance NV YES! - Qualified Medical Child Support Order (QMCSO) ERISA-covered health plan to provide health benefits coverage to children by issuing a medical child support order NV YES! - Divorce Decree, Support - Adult Disabled Children: NV YES! NV YES! DO NOT 17 states DO NOT have mandate: AL, CT, DC, KS, ME, MI, MA, MI, MT, NE, NJ, RI, SD, TN, VT, WV, WI

51. Maintaining Public Health Insurance NV YES! Medicaid automatic with SSI: NV YES! 209 B states (11) NOT automatic : CT, HI, IN, IL, MN, MO, ND, NH, OK, OH, and VA Medicaid WAIVERS, Work Incentives Buy-in Ticket to Work 43% who enrolled in the Buy- in left for at least a year at some point; 22 % of individuals who left the program had no immediate access to Medicaid or Medicare.

52. Youth are Talking: Are we listening? Survey - 1300 YOUTH with SHCN / disabilities Main concerns for health: What to do in an emergency, Learning to stay healthy* 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 *SOURCE: National Youth Leadership Network Survey-2001 300 youth leaders disabilities

53. 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

54. 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/

55. 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 55

56. 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 56

57. Skills Before 10 Before 18 Carry and present hand held Portable medical summary X Prepare for Doc visit: 5 Qs XX Present Co-pay XX Assess: Insurance, SSI, VR X Gather disability documentation X 57

58. 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

60. Growing Up Ready to LIVE! Health & Wellness …. + Humor

61. Jedi Master, Yoda What are we saying NO to? 61 DO or NOT DO, there is no “try”.

62. 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…… 62

63. Thanks! Mallory Cyr mallorycyr@yahoo.com Patti Hackett pattihackett@yahoo.com