Personal Experience Fuels the Passion for Youth Involvement in Creating Systems Change in Health Policy & Practi

1. Personal Experience Fuels thePassion for Youth Involvement in Creating Systems Change in Health Policy & Practices Ginger Payant Champions for Inclusive Communities Mallory Cyr & Patti Hackett Healthy & Ready to Work

2. Learning Objectives (1) • Define a Community-Based System of Services • Introduce the 6 National Performance Outcomes for Children and Youth with Special Health Care Needs

3. Learning Objectives (2) • Understand the value of youth participation • Demonstrate how the outcomes can be integrated at the community level

4. Purpose • Interactive discussion that shares ideas and strategies to support an environment to engage youth and young adult involvement in creating systems change at the individual and community level.

5. Interactive Time Qs, As, Sharing?

6. Champions for Inclusive Communities Who We Are….. • National Center funded By Maternal and Child Health Bureau • Support CYSHCN outcome #5 • “Services are organized so families can use them easily and are satisfied with the services they receive.”

7. http://www.championsinc.org

8. Mallory H. Cyr Youth Coordinator HRTW Natl Resource Center Gray, Maine VIRTUAL: Traditional Conf Call

10. www.hrtw.org

11. Healthy & Ready to Work National Resource Center The Ultimate Outcome: Transition to Adulthood Health Impacts All Aspects of Life • All youth with special health care needs (YSHCN) receive the services necessary to transition to all aspects of adulthood, including adult health care, employment and independence.

12. Health Care Transition Takes Time & Skills • Increasing Youth Involvement • Health & Wellness Baseline • Maintaining Health Insurance • Documenting Disability

13. Who is Here? Meeting Your Needs Today

14. Sharing (experts in the room) • Success for YOU will look like? Taking ACTION post cards • 1 step change  1wk, 30 days, 3 months

15. Mallory H. Cyr Youth Coordinator HRTW Natl Resource Center Gray, Maine VIRTUAL: Traditional Conf Call

16. Increasing Opportunities for Youth Involvement Changing Attitudes • ADMINISTRATION – Policies & Practices • STAFF – Automatic Inclusion • FAMILY – Changing Roles (Passing the Torch) • NATIONAL – Policy & Practices

17. 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”

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

19. Growing Up: Completing college

20. Growing Up Ready for LOVE

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

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

23. Qs, As, Sharing?

24. Whatis Transition All About? Universal rite of passage in becoming more independent and self reliant: Puberty Self reliance-health, social, employment

25. What is Transition All About? Autonomy Different circles of friends and contacts Finding new sources of social and instrumental support

26. What is a system of Services? • A family-centered network of community-based services designed to promote the health and well-being of CYSHCN and their families. • Bringing these services to families helps ensure that no child is left behind and that mandates of the President's New Freedom Initiative are met. • Community-based services may look different from state to state and community to community, but they should all meet the following six performance outcomes:

27. It’s All About The System!

28. Roles of Youth and Families in Supporting Community-Based Systems Roles for Youth Family Level • Serve as care coordinators • Cultural brokers • Connect families to resources • Become involved

29. Roles for Youth Community Level • Bring private/public partners to table • Conduct outreach/marketing • Mentor/educate future leaders • Members of decision-making councils

30. Roles for Youth • Hired as Title V staff • Decision-making councils • Legislative lobbying • Measurement: family/youth needs, outcomes State Level

31. Comments From Young Adults • Youth Voice: Youth voice is valuable and needs to be heard. • Dignity & Respect: Understand that people with disabilities have a lot to contribute in the work environment.

32. Eliminate discrimination: Make the community disability friendly • Knowledge: Help us to know what is available, make sure youth/young adults know how to advocate for themselves. When parents have done all for them, they don’t know what to do.

34. Qs, As, Sharing?

35. 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: 62.9% YES: 37.1%

36. 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? Not necessary??? 35.6% NO: 45% YES: 19.3%

37. Maintaining Private Health Insurance

38. Michelle’s Law (October 9, 2009) Students on Family Health Plan House Bill 2851 • Federal law 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.

39. House Bill 2851 (HR 2851) Con’t. • 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.

40. Maintaining Private Health Insurance

41. Maintaining Private Health Insurance

42. Maintaining Public Health Insurance

43. Mallory H. Cyr Youth Coordinator HRTW Natl Resource Center Gray, Maine VIRTUAL: Traditional Conf Call

44. 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: 49.3% Never: 11.8% Sometimes/Usually 38.9%

45. Qs, As, Sharing?

46. Mallory H. Cyr Youth Coordinator HRTW Natl Resource Center Gray, Maine VIRTUAL: Traditional Conf Call

47. CHANGING PERSPECTIVES - 01 • What are your first thoughts about transition for the child/youth in your practice or community? • Thinking again from another point of view, how else can you describe this emotion, the fears, the anxieties, where do you believe there are gaps? Where are the strengths?

48. 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?

49. Transition Incentive Awards Findings 11 statewide projects - Champions for Progress, precursor to ChampionsInC : AZ, AL, CO, DE, FL, MI, NM, NV, OH, WI, WY • Findings: • 1. Transition is a process, not an event • 2.CYSHCN have little or no experience managing their own health care,

50. Findings: 3. Disconnect between Youth and adult expectations of education and employment opportunities; 4. Youth with SHCN want to be considered like any young adult without special health care needs; 5. Families tend to be unaware of programs and resources that could help;