Patience H. White, MD, MA, FAAP Washington DC

1. The Road to Quality Care for Youth, and their Families:partnerships for a better transition to adulthood for youth with SHCN Patience H. White, MD, MA, FAAP Washington DC

2. Guiding Observations: new directions Sign Posts:A New community of youth with SHCN has new expectations for their future. New Destinations:New health challenges call for 1.new relationships with their partners in the Health care system 2. Quality care as outlined by the IOM Road Construction:New routes need to be developed for this new relationship among youth with SHCN, health care providers, and the health care system

3. What age would people say would be the best years of their lives beginning at age 10 in 5 year blocks?

4. Don’t Want to Grow Up: age adults say they want to remain(USA Today Poll 2000)

5. Learning Objectives: • Outcome realities for youth • List what youth want • Discuss outcome research • List ways a health care professional can foster a successful transition for a youth with chronic illness

6. Outcome Realities • 90% of YSHCN reach their 21st birthday • Nearly 40% can’t identify a primary care physician • 20% consider ped specialist - ‘regular’ physician • Significant numbers have extensive primary health concerns that are not being met • Fewer work opportunities, lower high school grad rates and high drop out from college • YSHCN are 3 x likely to live on income < $15,000 • A National Survey of CSHCN - 6.3% of YSHCN received preparation for transition to adulthood. • 35% of 18 – 24 yr-olds lack a source for health care CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

7. % Uninsured by Age:Center for Cost and Financing Studies, AHRQ, Medical Expenditure Panel survey (2002)

8. Employment Rates of Civilians Aged 25-61 and Disability Status Source: March Current Population Survey, 1999-2001

9. Access to Employer-Based Coverage for Low and High Wage Families, 1998KFF Medicaid and the Uninsured January 2004

10. Are 17 year olds Ready for Disease self management? SOURCE: 2005 British Study of 77 17 year old youth with JIA: • 20% NOT self medicating • 55.8% see Rheumatologist with parents • 26% see GP independently • Significant association with independent visits (p=0.002) • Adolescent Rheumatology Transition Knowledge Questionnaire ART – KQ Sub-optimal! Median score = 9 (1 to 15) Shaw KL, Southwood TR, McDonagh JE 2005

11. AERC Outcome Research(1999) 200 youth (ages 12-20) with SHCN & parents completed: CMI, work experience, demographics, parents perception of work readiness Results: - Most youth with SHCN feel future certain, delayed in all other CMI categories, esp. knowledge of workplace - Parents think first job experience should be at age 16 or older - parental SES not correlated with CMI

12. Learning Objectives: • Outcome realities for youth • List what youth want • Discuss outcome research • List ways a health care professional can foster a successful transition for a youth with chronic illness

13. “The media present adolescence as hell on earth, chock full of evil cliques, domineering parents and wrenching decisions that will determine the rest of your life. Nah. Adolescence is a time to sit back, make some friends and maybe discover what you are good at. Don’t believe the hype.” Advice to 13 year olds from a 17 year old NYT, 1998

14. Youth With Disabilities Stated Needs for 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 • Legal rights • Protect themselves from crime • Obtain financing for school -Point of Departure, a PACER Center publication Fall, 1996

15. What would you think a group of “successful” adults with disabilities would say is the most important factor that assisted them in being successful?

16. FACTORS ASSOCIATED WITH RESILIENCE for youth: which is MOST important? • Self-perception as not disabled • Involvement with household chores • Having a network of friends • Having non-disabled and disabled friends • Family and peer support • Parental support without over protectiveness Weiner, 1992

17. FACTORS ASSOCIATED WITH RESILIENCE for youth: which is MOST important? • Self-perception as not disabled • Involvement with household chores • Having a network of friends • Having non-disabled and disabled friends • Family and peer support • Parental support without over protectiveness Weiner, 1992

18. Health & Wellness: Youth Viewpoint • Preoccupation with: body & physical changes • Strong need to "belong" • Primacy of the peer group • Experimentation and risk-taking • More like those without a diagnosis than different

19. Health & Wellness:Transitions • Adult body • Mature (abstract) cognitive style • Separate from family/leave family home • Sustained peer relationships • Intimate relationships • Increasing autonomy….Interdependence • Define a productive adult role

20. Medical Context The youth and family find themselves between two medical worlds…… that often do not communicate…..

22. Learning Objectives: • Outcome realities for youth • List what youth want • Discuss outcome research • List ways a health care professional can foster a successful transition for a youth with chronic illness

23. Adolescent Employment Readiness Center (AERC) Research:Youth are less interested in any transition organized around medical issues andmore interested in a transitionto financial and social independence.

24. AERC Context: Data on Youth Work in the USA • Employers rank prior work experience, attitude and communication skills most important in hiring decisions(NYT, 1998) • Work patterns of teenagers during the school year: - 40% 7th and 8th graders (JAMA 1998) - 80% high school students (IOM 1998) • Educational level attained relates to survival, future income level and probability of labor force participation(Yeltin 1996)

25. AERC Context: Data on Youth Work in the USA • Teens take health risks less if work under 20 hrs/week(JAMA, 1998) • Part-time work data: - essential to future work success(Skurikor 1993) - most jobs low skill, low pay(US Dept. of Labor) - debate focus on hours worked, not skills attained (Mortimer 1994) - lack of connection to vocational development (Skorikov 1997) • Minority, poor and disabled youth have less work experience but when work, same hours and wages attained

26. 2002 AERC/SSA Grant: cohort selection • 1510 fliers mailed by health insurance to social security income recipients 12 -18 years in DC Diagnosis: Qualify 80% MR,LR, CP 40% co morbidity with CI • 178 completed the baseline instruments Mean age-14.8 yrs • Race: AA 96% Latino 4% • 46 dropped out / lost to follow up after 1 year • 132 completing research data at year 2 45 inactive / 87 active

27. AERC/SSA Grant: Outcome • Process (Formative) Outcome: -Improvement in measures evidence for improved functioning for those too young for summative outcome measures (employment, off SSI) • Measures used with age matched norms available: -Ansell-Casey Life Skills Assessment (ACLSA) both youth and Caregiver -Career Maturity Index (CMI) -Pediatric Quality of Life Scale (PQLS)

28. RESULTS: Summary After 1 yr active* 13 yr olds: • more engaged (three times as many 13 year olds wanted to participate than other ages) • less differences in measurements compared to age mates w/o disabilities; gap between norms and participants increased with age of participants • significant improvement compared to other ages in the intermediate outcome measures: ACLSA Life Skills, CMI, and Pediatric QoL * Receiving AERC services

29. RESULTS: Summary After 3 yrs active* participants: • more education • more paid work experience • more likely to leave SSI ( 3 are off SSI, 3 on their way) • Improved health from youth’s point of view • more likely to have an adult primary care physician ROI of program: 1 youth leaving the SSI rolls pays for 1 Year of the program! * Receiving AERC services

30. Learning Objectives: • Outcome realities for youth • List what youth want • Discuss outcome research • List ways a health care professional can foster a successful transition for a youth with chronic illness

31. What Is Transition? Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals. To ensure successful transition to • Adult health care system • Work • Independence • Inclusion in community life

33. Transition Services: Fundamental Elements • Professional and environmental support for concept- preparation • Professional sensitivity to/ knowledge of psychosocial/ work issues • Recognition, expectation and encouragement of change in decision making-consent to assent • Youth and family support/involvement • Primary and preventive care and specialty care • Coordinated transfer-engaged adult services, written plan, designated coordinator • process/policy on timing of transfer SAM position paper 1993 Viner, 1999

34. Survey of Pediatric Practices on Transition Policies for YSHCN • A pilot survey based on the policy recommendations of the Joint policy transition statement was • Completed in 2005 by 100% of 21 practices (146 physicians and 36 nurse practitioners) in Central Pennsylvania • The practices had volunteered to participate in developing acomprehensive family centered model of care.

35. Results • 4% (one practice) used an individualized medical transition plan • 29% had a plan for a transportable medical record • 62% rated their practice as not having a transition process but were interested in developing one • 52% wanted assistance in developing forms/procedures • 71% wanted assistance in coding for transition.

36. Transition Tools: Follow an informed decision making road • Shared management • Look to the future for needed skills • Structured observation • 9 easy questions to plan for a successful transition process • Guide for accommodations

37. Road Construction: New routes for this new relationship among the youth, their parents, and their health care providers 3 2 1 Increasing Level of Participation in Decision Making 4 5 Inform Consult Empower Involve Collaborate Roger Bernier, PhD MPH

38. “Shared Management” as the Goal • Consciously not using more common term “self-management” • View the highest level of achievement is not independence but effective interdependence Kieckhefer 2000

39. Getting Ready:Shared Decision Making

41. Skills: Before Transfer

42. Structured Observation:Experience an Adult Med Visit • Pre-appt • - Essential Qs to be asked • - Essential Qs YOU will ask • Appt: • - Observe (attitudes & approach) • - Create/Offer questionnaire • Post-appt • - Lessons Learned • - Skills to learn (adult feedback)

43. 9 Easy steps to Plan a Successful Transition • EXPECTATIONS: Talk with child/youth/ family about expectations for the future. Think about the future in 1-2 year segments. • TEACH: re-teach about the health condition and needed services based on changing cognitive development; provide prognosis/ natural history data • OPINION: Ask the opinion of your young patients…get their ideas… respect confidentiality…be open and honest.. listen and be “askable”… involve in decision making (assent to consent, give them a sense of competence)

44. 9Easy steps to plan a Successful Transition • CHORES: Are they doing chores? Independence skills start with having responsibilities in the family • ATTENDANCE: consistent attendance at school leads to a pattern of consistent attendance on the job and likely hood of attendance to post secondary school. • PLANNING: Transition planning is key - more than a referral-clarify roles for all involved/understand health insurance

45. 9 Easy steps to plan a Successful Transition • PARTICIPATION: Ask about social/ leisure activities and strategize how they can participate more fully; acknowledge teen lifestyle • CAREER: Ask about volunteer opportunities in the community (keep on work developmental milestones), paid work < 20 hours/week • STAY WELL: key to being part of the action for all players (eg HEADS)

46. Selection of school: Career training with support services and scholarships. Medical supports needed at school, nearby campus, and plans for emergency and inpatient events. Insurance Coverage (is it adequate and is it one plan or a patch of plans) Modifications: Work Load, Medical Care, and Proactive Wellness (see table 5 for accommodations) Visit the DSS at the start of school Post-secondary: Medical Issues

47. What to Do Now for Providers • Disability-cool posters in the waiting room • Parent to leave the examination room • Transition plan (tools and templates available) • Youth appointments after school • Call a family physician/general internist to consult • Place growth/weight charts in medical record • Improve adherence • 9 easy steps

48. What to Do Now for Children/Youth • Become responsible for a new household chore • Make a list of questions/concerns you have about your health that you can give to your doctor • Call your doctor to make your own appointment • Call in your refill prescriptions • Draft your portable medical summary

49. Bottom line:with or without us- youth and families get older and will move on…Think what can make it easier; do what’s in your control and support youth to tackle what’s their control. Start early Ask and reinforce life span skills prepare for the marathon Assist youth to learn how to extend wellness Reality check: Have all of us done the prep work for the send off before the hand off?