2. Transitions: Growing Up Ready to Live! Transition Journey: Personal and Work Ceci Shapland, RN, MSN Consultant, Family & Youth Involvement Patti Hackett, MEd Co-Director HRTW National Resource Center F2F-NV, Family Ties Monday, December 22,2008

4. Part 01 The Journey: Starting from where you are now to where you want to go (personal) Celebrate: Past/Progress Future/Renewed energy Q & As Part 02 Just the Facts: Health & Transition Celebrate: Policy knowledge to put into practice! Q & As Part 03 Tools You can use Celebrate: new dialogue leads to action & change Q & As

5. 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) Do you have “ICE” in your cell phone contact list? To Program……….

6. Transition & ……Family

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

8. During the next two days we will..... Affirm your beliefs Ah Ha Moments! Make You Squirm Tools to Use Choose to Disagree You are advocates with skills Your skills are for certain time frames Now is the time to learn the next set of skills

9. Putting Policy Into Practice Action  Policy = Change over time Reduction of Barriers, Increase ease of access Action  Practice = NOW KSAs Knowledge, Skills & Abilities - Tools to increase quality - Tools to Reduce stress - Tools to Expedite determination for services Keep in Mind: Two Different Issues

10. 1. What do you remember about your teen years and health care 2. When did you leave your pediatrician and move to an internist? Your own child? 3. Have you had experience in assisting a youth with a disability moving to adult systems?

11. What is Health Care Transition? Components of successful transition Self-Determination Person Centered Planning Prep for Adult health care Work /Independence Inclusion in community life Start Early Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals.

12. PediatricAdult Age-relatedGrowth& development, future focussed Maintenance/decline: Optimize the present FocusFamilyIndividual ApproachPaternalistic Proactive Collaborative, Reactive Shared decision- making With parentWith patient ServicesEntitlementQualify/eligibility Non-adherence>Assistance> tolerance Procedural PainLower threshold of active input Higher threshold for active input Tolerance of immaturity HigherLower Coordination with federal systems Greater interface with education Greater interface with employment Care provisionInterdisciplinaryMultidisciplinary # of patientsFewerGreater

13. 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.

14. Transition to Adulthood : Your Personal Journey Role of Health & Wellness Fears that slow down personal progress Past YOU – Recognize how far you have come YOUR CHILD – Recall what they could not do Current YOU – Now? 5 years? 10 years? YOUR CHILD – Are skills on target or behind? both?

15. Future Exercise: Perspective-providing an opportunity for shifting viewpoint YOU : skills, knowledge, abilities to strengthen or acquire YOUR CHILD: what skills can be transferred, learned, practiced or may need additional supports? YOUR WORK: thinking ahead, what needs to change to assure health and transition activities are included in daily functions, intake, forms, workshops, and/or conference presentations?

16. Changing Roles: Preparing for the Difference Goal: Interactive discussion of the 17 essential skills to prepare for health care transition YOU – skills, knowledge, abilities to strengthen or acquire YOUR CHILD – What to learn, to practice or may need additional supports? YOUR WORK – consensus as an agency to include health & wellness in all phases of work.

17. HANDOUT: KSAs Life Span Skills for Health: Transition Basics Knowledge, Skills and Abilities for Changing Roles

18. Summary & Charge HOMEWORK: 1.Work Tasks Injecting health, wellness and transition into work functions 2.Changing Roles: KSAs

19. Q & As

20. Transitions: Growing Up Ready to Live! Transition Overview: Policy, Data, Practice & Trends

21. “Children and youth with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” Source: McPherson, M., et al. (1998). A New Definition of Children with Special Health Care Needs. Pediatrics. 102(1);137-139. http://www.pediatrics.org/search.dtl Who Are CYSHCN?

22. Disabled?? Special Health Care Needs? <18 -- HEALTH SERVICES CYSHCN - Children & Youth with Special Health Care Needs - Genetic - Chronic Health Issues - Acquired >18 -- Adult - Person with Disability - Person with Health Impairment ADA - Civil Rights

23. HRSA/MCHB Block Grant: NPM #6 Transition to Adulthood Youth with special health care needs will receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. (2002) SOURCE: BLOCK GRANT GUIDANCE New Performance Measures See p.43 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

24. 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

25. 1. Identify primary care provider 2. Identify core knowledge and skills 3. Maintain an up-to-date medical summary that is portable and accessible 4. Create a written health care transition plan by age 14: what services, who provides, how financed 5. Apply preventive screening guidelines 6. Ensure affordable, continuous health insurance coverage SOURCE: Pediatrics 2002:110 (suppl) 1304-1306 Ped Consensus Statement: Health Care Transition Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care

26. 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

27. 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

28. 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

29. Time Jan 2004

30. Societal Context for Youth without Medical Conditions in Transition 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)

31. Transition and the Youth with Development Disabilities Level of participation Supports Health advocate

32. Transition is complete when: Youth has health care that is paid for Care that is developmentally appropriate Able to self manage or support is identified Able to make health care decisions or support is in place Youth Leaders are partners in policy review and development

33. What does the Data tell us? Natl CSHCN 2005-06 HRTW 2004-06 NC Neph 2005 Youth – MN 1997 Youth – NYLN 2003

35. NS-CSHCN 2005 Section 6: Family Centered Care - Transition Qs 49.3% NO If YES, have they talked with you about having [CHILD’S NAME] eventually see doctors or other health care providers who treat adults? 53.8% NO 46.2% YES 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?

36. NS-CSHCN 2005 Section 6: Family Centered Care - Transition Qs 78.7% NO Eligibility for health insurance often changes as children reach adulthood. Has anyone discussed with you how to obtain or keep some type of health insurance coverage as [CHILD’S NAME] becomes an adult? Never 11.9% Sometimes 16.3% Usually 23.0% Always 48.7% 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, such as: IF 5-11 Years: learning about (his/her) health or helping with treatments and medications? IF 12+ Years: taking medication, understanding (his/her) health, or following medical advice?

37. Barriers to Transition * rated extremely important or very important (combined) HRTW Questionnaire 2006-2007 Medical Homes N=52 in 26 states NACHRI Hospitals N=19 in 18 states States N=42 of 59 States/ Territories Lack of capacity of adult providers to care for youth/adults with SHCN 83%85%95% Lack of understanding of reimbursement eligibility differences between adults and children with special health care needs 65%63%Not Asked Fragmentation of care among systems providers 87%73%89% Lack of knowledge about or linkages to community resources that support youth in transition 85%58%50%

38. Health Care Transition Activities Medical Homes N=52 26 states NACHRI Hospitals N=19 18 states (12%) Shriners Hospitals N=20 15 states & Canada (91%) State Title V Agencies N=42 of 59 States/ Territories (71%) Create an individualized health transition plan 34%43%25%50% Promote health management, self care, and prevention of secondary disab. 63%79%95%72% Discuss legal responsibility for medical decisions and health records <18. 21% Written 81% assent 58%100%62% Recruit adult primary /specialty providers to assume care of youth with special needs 56%58%35%53%

39. 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

40. 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?

41. 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

42. ASSENT to CONSENT Eastern Maine Medical Center A parent or guardian is generally required to sign for a patient under the age of 18. Patients aged 14-17 should also sign. See IDD 20.041. If an adult is unable to make or communicate medical decisions, then the following may sign in the priority given: agent under healthcare power of attorney, guardian, spouse, domestic partner, next-of-kin. See IDD 20.060 Indicate capacity of representative.

43. Maintaining Health Care Insurance

44. Transition & ……Insurance NO HEALTH INSURANCE 40% college graduates (first year after grad) 1/2 of 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

45. 44 Percentage of adults ages 19–29 reporting going without various services because of cost, by health insurance status: 2005 Source: Collins, et al., 2007.

46. Extended Coverage – Family Plan Adult Disabled Dependent Care 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 Adult, childless continued on Family Plan Increasing age limit to 25-30 CO, CT, DE, FL, ID, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV

47. Handouts: Private Health Insurance Requires An insurer may require, as a condition of eligibility for continued coverage in accordance with this section, that a covered person seeking continued coverage for a dependent child provide written documentation on an annual basis that the dependent child meets or continues to meet the requirements Celebrate Annual Documentation!

48. Q & As

49. Case Study

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

51. 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?

52. 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?

53. 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?

54. 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?

55. 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?

56. 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

57. 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.

58. Q & As

59. HANDOUTS: Portable Medical Summary Tracking Poly Pharm Prep for Office Visit: 5 Qs

60. Skills Before 10Before 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

62. 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

63. 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)

66. HANDOUT: Prep for Office Visit: 5 Qs

67. How do we tie a knot of transition between pediatric and adult healthcare? Start early Teach advocacy to youth Tell people where to find the other rope Teach the strands to work together Reality check: Have all of us done the prep work for the send off before the hand off?

68. Tie a knot to create a continuous rope The pediatric rope should transition into the adult rope

69. Patti Hackett, MEd Co-Director, HRTW Center pattihackett@hrtw.org Ceci Shapland, RN, MSN Consultant-Family Involvement Vadnais Heights, MN cecishapland@hrtw.org Mallory Cyr Youth Coordinator, HRTW Center Sabattus, ME mallorycyr@htrw.org

70. Q & As

71. www.ncwd-youth.info/index.html

74. www.fvkasa.org

75. ??? NYLN www.nyln.org/

78. http://www.championsinc.org

79. What would you do, if you thought you could not fail?