HRTW TEAM Readfiled, ME Bangor, ME Minneapolis, MN Lexington, KY CEC CONFERENCE Louisville, KY April 20, 2007

1. What’sHEALTHGot to Do with Transition? EVERYTHING! HRTW TEAM Readfiled, ME Bangor, ME Minneapolis, MN Lexington, KY CEC CONFERENCE Louisville, KY April 20, 2007

2. Health Impacts Performance & Productivity Success in the classroom, within the community, and on the job requires that young people are healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisions.

3. Speakers Young Adult Katherine Lewis Health Policy Ceci Shapland Kathy Blomquist Patti Hackett EducationTherese Bernier Burns

4. Today’s Outcomes By the end of 1 hour success will look, sound and feel like: • New knowledge of promising practices for Youth with Special Health Care Needs • Ways to increase youth involvement in their own care • Energized by working in a brain compatible learning environment that you can model in your work

5. Today’s Outcomes By the end of 1 hour success will look, sound and feel like: • Introduction to a variety of tools to help youth become more proactive in: - health care management/shared decision making, - informed decision making/assent to consent - medical status reports - balancing health and wellness - improving Emotional Quotient/Emotional Intelligence

6. Ways to embed Health & Wellness into your curriculum • Use structures A. footprints B. outcomes C. parking lot • Teach skills using health content • Prepare students for P.E.T.’s • Model health and wellness

7. www.hrtw.org

8. - Teacher made bathroom time at the same time as my speech class so the other kids wouldn’t see me leave - Teacher always made sure I had a seat in the front due to severe hearing loss- Teacher included my disability specifically so the other kids could learn about it Teachers’ Attitudes Made a Difference

9. What teachers should know…………supporting students who are disabled and who have special health care needs • Know student’s past medical/surgical history • Be inclusive in classroom activities • Understand learning/developmental needs • Be aware and respond to special needs • in the classroom: seating, access, ease in • moving around, etc.

10. Staying HealthyHow teachers can help students • Incorporate healthy snacks • Encourage physical activities • Show proper techniques to keep teeth and gums cleaned • Hand-washing • Encourage parents to have their children have annual checkups, eye exams and hearing tests as well as dental checkups

11. Involving Youth in the Classroom • Include students with disabilities in all classroom activities • Make all children feel included • Don’t make a big deal over a student’s disability or certain health care need(s)

12. 7 Things a Teacher Can Do • Welcome ALL children, disability and all • Praise / congratulate when there is progress • Keep parents/guardians updated on child’s progress • Have parents keep you updated on child’s medical, surgical, and health needs • Encourage students to do their very best • Don’t make a big deal of a child’s disability • Teach other kids how to love all children, even those who are different

13. Health is NOT Separate from Education • Health affects performance • Energy level • Concentration • Attendance

14. What is health and wellness for a youth with special health care needs? Balancing Health and Education

15. Health Affects Everything!! • Employment • Housing • School • Community Living • Recreation

17. The Ultimate Outcome: Transition to Adulthood Health Care Transition Requires Time & Skills for children, youth, families and their Doctors too!

18. Partner with Youth and Families • Talk about health in relation to learning • Promote participation in health care and decisions • Include the school nurse more actively in the IEP

19. Partner with Health Professionals • Everyone has the same goal: promoting optimal potential • Think health! • Transition is about community partners: Partner with primary physician, school nurse, etc

20. Goal of Transition Improve the health-related quality of life of all young people with chronic illness or disability and enable them to reach their true potential.

21. Goal of Transition To grow up healthy and able to fully participate and enjoy life!

22. Youth are Talking: Are We Listening? Experiences that were most important: • learning to stay healthy • getting health insurance SOURCE: National Youth Leadership Network Survey-2001, 300 youth leaders disabilities

23. Youth are Talking: Health Concerns Survey - 1300 YOUTH with SHCN / disabilities Main concerns for health: • what to do in an emergency, • 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

24. Be an Advocate for Yourself • Learn about your health • Keep your portable medical summary up to date • Prepare for appointments • Make your own appointment • Understand your medications • Get your own refills

25. Be an Advocate for Yourself • Know how to negotiate • Know the law • Know how to ask for what you want and need • Learn good problem-solving skills • Understand health insurance and how to pay for your health care

26. Be an Advocate for Yourself • Find a health advocate • Carry health information: insurance card, health summary • Know community resources • Make informed health care decisions • Identify an adult doctor

27. Health & …. Life-Span Secondary Disabilities - Prevention/Monitor - Mental Health, High Risk Behaviors Aging & Deterioration • Info long-term effects (wear & tear; Rx, health cx) - New disability issues & adjustments

28. Screen for Life Areas How does health affect: • Employment • Leisure, Recreation • Community: transportation, housing, activities • Higher Education or Training

29. Screen for All Health Needs • Hygiene • Nutrition (Stamina) • Exercise • Sexuality Issues • Mental Health • Routine (Immunizations, Blood-work, Vision, etc.)

30. Health Affects Everything! Joe’s Story • Great job • Excellent training • Own apartment • Good social life Then what…………………….???

31. Assessing Health in Transition:Employment • Does Joe’s health condition dictate certain work conditions? • Will Joe’s medication affect his job duties? • Should he disclose his health condition to the employer? • Does his health dictate hours of work?

32. Post Secondary Education • Does Joe need to take his medication while in class or at work? • How will it affect his performance? • Will Joe need accommodations in his schedule for medical treatments and/or appointments?

33. Home Living Does Joe ……. • understand his seizure disorder? • carry his own emergency medical information? • understand the side effects of his medication? • have an emergency plan? • have health insurance?

34. Community Life Does Joe …….. • have an adult health care practitioner? • know how to communicate his health care needs? • know when, how and where to fill a prescription? • know how to travel to the doctor or drugstore? Does he have transportation?

35. Leisure-Recreation • Does Joe understand the effects of recreational drugs or alcohol on his health and seizure disorder? • Will his medication or health condition affect his choice of activities?

36. Using the IEP for Health Transition Goal: • I will learn about my seizure disorder and my health needs to live more safely in the community. Objective: • I will write a report for social studies on seizure disorders. • I will learn three side effects of my medication

37. Using the IEP for Health Transition Objective: • I will develop an emergency plan with my physician and present it to my case manager. • I will identify and interview two adult physicians and choose a new adult doctor by June, 2007.

38. What is a successful transition? Youth are able to • Access health services independently • Discuss their health condition • Communicate their health care needs • Self-manage their care or support is available

39. What is a successful transition? Youth are able to • Feel comfortable seeing the doctor alone • Make health care decisions or support is in place Young adults • Have insurance • Have health care that is developmentally appropriate – primary, specialty, therapies, AT

40. Connecting with the Community • State Transition Interagency Councils • Community Partners • Title V • Medical Community

41. Living Well with a Disability

43. Collaboration with Community Partners • Special Education Co-ops • Higher Education • Vocational Rehabilitation/ • Workforce Development • Centers for Independent Living • Housing, Transportation, Personal Assistance, and Recreation • Mental health • Grant projects in your state

44. Where to find collaborative groups • Summary of Services for Youth with Special Health Care Needs in Kentucky (see handout - examples of resources ) • MCHB and other grants • Other state information sources (see handout)

45. Title V CYSHCN Agencies 6 National Performance Measures for Systems for CYSHCN • Screening • Family and Youth Involvement • Medical Home • Insurance • Coordinated Systems of Care • Transition – the Ultimate Outcome Block Grant reporting Services of Title V CSHCN agencies How to find your state agencies www.championsinc.org

46. Medical Homes A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs • American Academy of Pediatrics • American Academy of Family Physicians • American College of Physicians - American Society of Internal Medicine Pediatrics 2002:110 (suppl) 1304-1306 Teachers and physicians can work together!

47. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care • Identify primary care provider • Peds to adult • Specialty providers • Other providers Pediatrics 2002:110 (suppl) 1304-1306

48. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 2. Identify core knowledge and skills • Encounter checklists • Outcome lists • Teaching tools

49. Skills for Encounters with Health Care Providers • Makes appointments (balance health, fun & school) • Prepares questions to ask / assent to consent • Presents health insurance card (pays co-payments) • Keeps medical records • Takes medications and calls in refills (Tues-Thurs) • Schedules therapies and follows regimens • Tracks vendors – equipment, supplies • Navigates the system

50. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 3. Maintain an up-to-date medical summary that is portable and accessible • Knowledge of condition, prioritize health issues • Communication / learning / culture • Medications and equipment • Provider contact information • Emergency planning • Insurance information, health surrogate Pediatrics 2002:110 (suppl) 1304-1306