Transitions: Growing Up Ready to Live!

1. 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

3. 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

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

5. Transition & ……Family

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

7. 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

8. 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

9. 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?

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

12. 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.

13. 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?

14. 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?

15. 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.

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

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

18. Q & As

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

20. “Childrenand 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?

21. 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

22. 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

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

24. Consensus Statement: Health Care TransitionCritical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 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

25. 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

26. 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

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. Time Jan 2004

29. 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)

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

31. 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

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

34. NS-CSHCN 2005 Section 6: Family Centered Care - Transition Qs

35. NS-CSHCN 2005 Section 6: Family Centered Care - Transition Qs

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

39. 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

40. Internal Medicine Nephrologists (N=35) Maria Ferris, MD, PhD, MPH, UNC Kidney Center

41. 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.

42. Maintaining Health Care Insurance

43. 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

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.

45. 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

46. 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!

47. Q & As

48. Case Study

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

50. 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?