Transitions: Growing Up Ready to Live! The Ultimate Outcome: Transition to Adulthood

1. Transitions: Growing Up Ready to Live!The Ultimate Outcome: Transition to Adulthood Transition Overview: Policy, Data, Practice & Trends Patti Hackett, MEd Co-Director HRTW National Resource Center Face to Face Meeting Burns, TN July 17, 2008

2. Today Part 01 – Overview National Data, Federal Policy Part 02 – Preparing for the Difference: Roles & Tools for Providers, Family and Children/Youth Part 03 – Discussion: Putting Ideas Into Practice: Your Strategies – Making it Work

3. Learning Objectives • Define transition and its components  2. Discuss Data, Policy & Trends. 

4. What does it take to become independent? Join a lively • discussion of the information and skills youth need to be on their own and how to prepare youth for this important step. • Lively Discussion: • What is On Your Mind? • Burning Questions: • Need answers & Resources • Experts in the Room • Resources post conf • Solution Network About YOU

5. During the next 90 min. 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

7. www.hrtw.org

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

9. 1. What do you remember about your adolescent years and health care-when did you leave your pediatrician and move to an internist?

10. 2. Have you had experience in assisting a youth with a disability moving to adult systems?

11. 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

12. 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

13. 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

14. “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?

15. 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

16. 3. What is transition?   4. Who needs transition planning?

17. 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

18. What is Early? • Data from studies in Europe and the US suggest ages 11-13 • Youth most interested in involvement with future career like their peer group without disabilities • If intervene with transition planning, able to keep them on developmental milestones compared to those starting later • Have least differences in standardized QoL and life skills measures • Youth > 14 years had bigger differences than peers w/o disabilities and interventions show less improvement

19. The WHEN does it begin? Health Care Transition  Skills: Wellness: Chronic Health Care Management  Access to services: prep for transfer Life Skills take life span timeline

21. IOM QUALITY MEASURESHealth Care Processes Should Have: • Care based on continuing healing relationships • Customization based on patient needs and values • Patient as source of control • Shared knowledge and free flow of information • Safety • Transparency • Anticipation of needs SOURCE: Crossing the Quality Chasm 2001

22. 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.

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

24. 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

25. 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

26. What does the Data tell us? Title V, SSI Natl CSHCN 2005-06 HRTW 2004-06 NC Neph 2005 Youth – MN 1997 Youth – NYLN 2003

27. 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

28. SSI 953,295ages 0-17 TN – 23,665 ages 13-17 TN – 8,544 SOURCE: SSA, Children Receiving SSI, December 2007

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

31. RI Data…

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

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

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

35. A Consensus Statement 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 • Identify primary care provider • Identify core knowledge and skills • Knowledge of condition, prioritize health issues • Maintain an up-to-date medical summary that is portable and accessible • Apply preventive screening guidelines • Ensure affordable, continuous health insurance coverage Pediatrics 2002:110 (suppl) 1304-1306

36. HRTW Surveys: Results 2007 About Those Who Responded 52 physicians / 26 states Most involved with Medical Home projects 47 pediatricians, 4 Med-Peds, 1 Family Consensus Statement- Knowledge 50% were familiar 6 % unsure 42% not

39. Results: Core Knowledge & Skills 36%have forms to support transition (82% want help) 39%provide educational materials regarding transition (48% want help)

40. Results: Core Knowledge & Skills 58%help youth/families plan for emergencies (31 % want help) 68%assist with accommodations school/studying or work (21% want help) 35% Make transportable medical record for some patients (43% want help)

41. Results: Core Knowledge & Skills 63%promote independence in health condition management (25% want help) When youth tern 18-writen policy to discuss? 77% no Do you seek verbal assent? 81% Written 23% 50%refer to skill-building experiences (35% want help)

42. Results 33%Create individualized health transition plan for at least some patients (39% want help) 65%Screen to identify YSHCN who need transition services (29% want help)

43. Results: Overall practice assessment Rate your practice with regards to transition processes in general: - not interested 2% - not have, interested 29% - beginning stages 25% - working on policy/processes 19% - have policy and processes integrated 13%

44. Conclusions * Respondents are reluctant to transition their youth with SHCN to adult practices * Respondents are well versed in coordinated care but are reluctant to adopt processes to give youth with SHCN the tools/skills to negotiate adult health care practices

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

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

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

48. 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

49. 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

50. A partnership - family and primary care doctor. A relationship - mutual trust and respect. Connections- supports - services for child / family. Respect for the family’s cultural and religious beliefs. After hours & weekend access to medical consultation Families feel supported in caring for their child Primary doctor workswith team/other care providers Medical Home includes….