1. Transitions: Growing Up Ready to Live! S2040-S2129: Helping Adolescents with Special Health Care Needs Grow up and Move On Transition Overview: Policy, Data, Practice & Trends Nancy Murphy, MD, FAAP, FAAPMR University of Utah, Salt Lake City Patience White, MD, MA, FAAP Health and Ready to Work National Center, Washington, DC AAP NCE October 2008

2. Faculty Disclosure Information In the past 12 months, we have no relevant financial relationships with the manufacturer(s) of any commercial product(s) and/or provider(s) of commercial services discussed in this CME activity. We do not intend to discuss an unapproved/investigative use of a commercial product/device in this presentation.

3. Seminar Agenda Discuss opening questions (10-15 min) Review data on transition from multiple points of view 15 minutes) Small group discussions(20 minutes) Report out from small groups (20 minutes) Review Tools (10 minutes) Wrap up (10 minutes)

4. Opening Questions What do you remember about your adolescent years and health care-when did you leave your pediatrician and move to an internist? Did you leave actively or passively? Why did you choose to come to this seminar?

5. Learning Objectives 1. Define transition and its components 2. Discuss Data, Policy & Trends 3. Share transition approaches in your practices

6. 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.

8. What does the Data tell us? What do national associations say about transition?

9. IOM QUALITY MEASURES Health 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

10. MCHB 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

11. 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

12. 1.Identify primary care provider 2.Identify core knowledge and skills 3.Knowledge of condition, prioritize health issues 4.Maintain an up-to-date medical summary that is portable and accessible 5.Apply preventive screening guidelines 6.Ensure affordable, continuous health insurance coverage Pediatrics 2002:110 (suppl) 1304-1306 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

13. What does the Data tell us? What do youth say they want in transition?

14. 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

15. 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?

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

17. 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

18. 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

19. What does the Data tell us? How are youth with SHCN doing in adulthood?

20. 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

21. What does the Data tell us? How prepared are youth for managing their care in the adult health care system?

22. 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

23. What does the Data tell us? What do Adult providers say they want to assist them in receiving youth w SHCN?

24. Survey of Adult Health Care Providers in NH 2008: Results Who-180 responses: 81% Fam, 9% internist, 8% NP, 2% Med-peds Communication-57-46% rarely/never received trans summary or call. 48% young adult experienced care gap Barriers- time, staffing, reimbursement issues inadequate support from specialists Comfort Level- – More- asthma, inc BP, Mental health, DM – Less- CF, Chromosome/met disorders, autism, technology dep What would Help- 95% written summary and support from specialists, 91% want to speak w prior provider, 84% written educational info about condition When-78% between 18-21 years

25. What does the Data tell us? FAMILIES Natl CSHCN Survey 2005-06 of families with CYSHCN

27. RI Data… NATL CSHCN13.9 0-58.8 6-1116.0 12-1716.8 Transition services received 41.2

28. 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?

29. 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?

30. What does the Data tell us? PED PROVIDERS AAP/HRTW surveys of providers using AAP consensus statement

31. 1.Identify primary care provider 2.Identify core knowledge and skills 3.Knowledge of condition, prioritize health issues 4.Maintain an up-to-date medical summary that is portable and accessible 5.Apply preventive screening guidelines 6.Ensure affordable, continuous health insurance coverage Pediatrics 2002:110 (suppl) 1304-1306 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

32. Two HRTW Surveys: Results 2007-8 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

33. 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%

34. 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%

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

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

37. 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%

38. THANK YOU ANY QUESTIONS?

39. Health & Wellness: Being Informed “The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.” Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374

40. How do have systems change so that the rookie learns the rules of the game and we leave no knot untied between pediatric and adult healthcare? Research states policies and procedures among stakeholders are essential so that – Ensures consensus – Ensures mutual understanding of the processes involved – Provides structure for evaluation and audit

41. Next Steps Form groups of 8-10 Identify recorder and reporter Discuss 1. How many of you have a policy in your practice about when youth will be transferred to adult practices? 2. If yes, what does it say? Is it posted for families and youth to see? 3. Craft examples of such a policy and how you will/did develop such a policy 4. What are the top 3 practice processes that would help you the most? Report out

42. Transition Policy Template Definition-what is it? See transition definition of Soc Adolescent Med/BMCH Outcome Timeline- age of initiation and explanation of exceptions Components- see AAP consensus statement Practice Processes Evaluation- PDSA cycle

43. Nancy Murphy, MD, FAAP, FAAPMR nancy.murphy@hsc.utah.edu Patience White, MD, MA pwhite@arthritis.org

48. http://www.championsinc.org