2. www.hrtw.org You & Me Affirm Ah ha! Squirm Disagree Who You Are? Experts in the Room About me!

3. www.hrtw.org Transition to Adulthood

4. www.hrtw.org Growing Up Ready to LIVE! Health & Wellness + Humor

5. www.hrtw.org

6. Health Impacts All Aspects of Life 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.

7. www.hrtw.org What would you think a group of “successful” adults with disabilities would say is the most important factor that assisted them in being successful? 6 Choices

8. www.hrtw.org 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

9. www.hrtw.org 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

10. www.hrtw.org Family Aspirations & Expectations Aspirations  Youth (Opportunity to Try) Expectations  Adults (Raising the bar) HEALTHY - How to stay well for longer periods

11. www.hrtw.org Youth With Disabilities Stated Needs for Success in Adulthood PRIORITIES: 1Career development (develop skills for a job and how to find out about jobs they would enjoy) 2Independent living skills 3Finding quality medical care (paying for it; USA) 4Legal rights 5Protect themselves from crime (USA) 6Obtain financing for school (USA) SOURCE: Point of Departure, a PACER Center publication Fall, 1996

12. www.hrtw.org 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 Youth are Talking: Are we listening?

13. www.hrtw.org Why Do People Work? Money Self-Esteem Friends Why do people with disabilities work?

14. www.hrtw.org Outcome Realities Nearly 40% of youth with SHCN cannot identify a primary care physician 20% consider their specialist to be their ‘regular’ physician Primary health concerns are not being met Fewer work opportunities, lower high school grad rates and increased drop out from college YSHCN are 3 X more likely to live on income < $15,000 CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

15. www.hrtw.org Hmmmm……. Reactions? Discussion First thoughts?

16. www.hrtw.org Health & Transition

17. www.hrtw.org Disability is …… a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society.

18. www.hrtw.org CORE National Performance Measures Transition & ……… 1. Family 2. Screening 3. Medical Home 4. Health Insurance 5. Community 6. Transition 1.Youth Involvement 2.Secondary Disabilities 3.Peds to Adult 4.Extend Dependent Coverage 5.Entitlement to Eligibility 6. Inclusion in Community

19. www.hrtw.org 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

20. www.hrtw.org Screen for Life Areas How does health affect: Employment Leisure, Recreation Community: transportation, housing, activities Higher Education or Training

21. www.hrtw.org 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, GLBT) OB-GYN (Routine care, Birth Control, Rape) Mental Health (genetic, situational) Routine (Immunizations, Blood-work, Vision, etc.)

22. www.hrtw.org Health Insurance

23. www.hrtw.org Transition & ……Insurance NO HEALTH INSURANCE 40% college graduates (first year after grad) 50% HS grads who don’t go to college 40% age 19–29, uninsured during the year 2x rate for adults ages 30-64 Source: Commonwealth, 2003, 2005

24. www.hrtw.org Extended Coverage – Family Plan 1. Adult Disabled Dependent Care (40 states) Incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child's physician on a form provided by the insurer, hospital or medical service corporation or health care center 2. Adult, childless continued on Family Plan Increasing age limit to 25-30 CO, CT, DE, ID, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV

25. www.hrtw.org TICKET TO WORK http://www.socialsecurity.gov/work/aboutticket.html  Employment Network (EN) of their choice to obtain employment services, vocational rehabilitation services, or other support services to help the beneficiary find and maintain employment MEDICARE (SSDI)  Premium-free coverage for 4.5 years beyond the current limit for disability beneficiaries who work. Medicaid (SSI)  Most States have the option of providing Medicaid coverage to more people between the ages of 16-64 with disabilities who work.

26. www.hrtw.org This bottle of Natural Spring Water is provided as a service for our guest. If consumed, $5.25 will be billed to your room.

27. www.hrtw.org Case Study

28. www.hrtw.org Health Affects Everything! Joe’s Story Great job Excellent training Own apartment Good social life Then what…………………….???

29. www.hrtw.org 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?

30. www.hrtw.org 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?

31. www.hrtw.org 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?

32. www.hrtw.org 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?

33. www.hrtw.org 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?

34. www.hrtw.org 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

35. www.hrtw.org 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, 2008.

36. www.hrtw.org Tools

37. www.hrtw.org

38. 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

39. www.hrtw.org Know Your Health & Wellness Baseline 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)

40. www.hrtw.org 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 Present Co-pay XX Assess: Insurance, SSI, VR X Gather disability documentation X

41. www.hrtw.org Little Miss-Matched  5M

42. www.hrtw.org What would you do, if you thought you could not fail?

43. www.hrtw.org Patti Hackett, MEd Co-Director, HRTW Center pattihackett@hrtw.org pattihackett@yahoo.com