Future Of Pediatrics Conference 2009

1. Future Of Pediatrics Conference 2009 Moving on from Pediatric to Adult Health Care for Youth with Special Health Care Needs: What a Health Care Professional Can do Patience H. White, MD, MA, FAAP Health and Ready to Work National Center, Washington, DC March 1, 2009

2. Faculty Disclosure InformationIn 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.I do not intend to discuss an unapproved/investigative use of a commercial product/device in this presentation.

3. Opening Questions About your Transition • Are you seeing an adult physician? • If yes, what do you remember about your adolescent/young adult years and health care-when did you leave your pediatrician and move to an adult health care provider? • Was your health care continuous or was there a gap? • Did you leave actively or passively?

4. Learning Objectives List the key elements of the national academies’ YSHCN and HCPs’ perspective on transition to adult healthcare Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care.  Discuss use of transition tools from the Healthy and Ready To Work (HRTW) website and other national resources.

5. DEFINITIONS

6. “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?

7. Nationwide 10,221,439 (13.9%) <18 Title V CYSHCN 1,839,883 ( 0-18*) SSI Recipients953,295( 0-16) Sources: www.cshcndata.org 2005-2006 Title V Block Grant FY 2007, www.mchb.hrsa.gov * Most State Title V CSHCN Programs end at age 18 SSA, Children Receiving SSI, December 2007, www.ssa.gov How many CYSHCN need transition planning?

8. 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.

10. 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

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

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

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

14. 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 Anticipationof needs SOURCE: Crossing the Quality Chasm 2001

15. 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

16. Identify primary care provider Identify core knowledge and skills Maintain an up-to-date medical summary that is portable and accessible Develop an individualized transition plan Apply preventive screening guidelines 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 NeedsAmerican Academy of Pediatrics , American Academy of Family Physicians, American College of Physicians - American Society of Internal Medicine

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

18. 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

19. 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?

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

21. 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

22. 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

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

24. Outcome Realities: Before the Recession 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 During and after the recession?????? CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

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

26. Internal Medicine Nephrologists (N=35) Maria Ferris, MD, PhD, MPH, UNC Kidney Center 2006

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

28. 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 Transfer: 78% between 18-21 years

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

30. 2005-6 National Health Survey* • National telephone Survey of 40,804 families with youth with SHCN under the age of 18 found the following results: • 48.8% of families with youth with SHCN ages 12-17 years stated their youth received the services necessary to make appropriate transitions to adult health care, work and independence. • For those who answered yes, their HCP: • 50.7 % talked about having their child eventually see health care providers who treat adults • 46.2% talked with them about the health care needs as their child becomes an adult • 21.3% discussed with them how to obtain or keep some type of health insurance coverage as their child becomes an adult • 48.7% always encouraged their youth to learn about their health and medications. *www.cshcndata.com

31. What does the Data tell us? PED PROVIDERS 2008 AAP Periodic Survey #71

32. 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 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

33. AAP Periodic Survey #71 2008* Results • 47% assisted with a referral to family or internal medicine • 45% Refer to adult specialists • 33% discussed consent and confidentially issues prior to age 18 • 32% Assist with finding a medical doctor • 27% Create a portable medical record summary • 23% offered education and consultative support to families or adult providers • 19% assisted in identifying insurance options after age 18 • 12% create an individualized health care transition plan * For all or most of their adolescents

34. Barriers to transition care for Pediatricians (both major and minor barriers combined): • 88% lack of their knowledge of community resources • 85% fragmentation of adult health care • 84% lack of adolescent knowledge about their health condition and skills to self advocate during health care visits • 80% lack of adult primary care and specialty providers, • 80% difficulty breaking bond with adolescents and parents • 79% lack of office staff skills in transition • 76 % lack of reimbursement for transition activities 2008 AAP Periodic Survey# 71

35. What to do? Where should I start?

36. “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 General Assumption #1

37. General Assumption #2 Every youth deserves a continuous medical home as they grow into adulthood utilizing a transition plan that matches: the youth’s capacity for independent decision making the complexity of the medical condition(s) and capacity of family and a circle of support

38. FIRST STEP • Do you have a transition Policy for your practice? • If yes, do you post it for parents and youth to see? • Why Have a transition policy?

39. How do we create a 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 • Ensures consensus • Ensures mutual understanding of the processes involved • Provides structure for evaluation and audit

40. Transition Policy Template • Definition-what is it? See transition definition of Soc Adolescent Med/BMCH • Outcome- when the youth has left my practice, he/she should know/have….. • Timeline- age of initiation and explanation of exceptions • Components- see AAP consensusstatement • Practice Processes • Evaluation- PDSA cycle

41. Time Jan 2004

42. Societal Context for Youth without Chronic Medical Condition 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)

43. Transition Template for all Youth* • Allergies • Immunization history • Episodic events-eg. Injury history • Build Health Family Tree https://familyhistory.hhs.gov/ • Prevention Actions • General: nutrition, physical activity guidelines, routine screenings, tests according to age • Specific actions/screenings required due to the family health tree eg heart disease • How to handle medical emergencies, ICE • Medical Providers with telephone # *Should be portable and electronic

44. 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)

45. Identify primary care provider Identify core knowledge and skills Maintain an up-to-date medical summary that is portable and accessible Develop an individualized transition plan Apply preventive screening guidelines 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 NeedsAmerican Academy of Pediatrics , American Academy of Family Physicians, American College of Physicians - American Society of Internal Medicine

46. Prepare for the Realities of Health Care Services Difference in System Practices Pediatric Services: Family Driven Adult Services: Consumer Driven The youth and family finds themselves between two medical worlds …….that often do not communicate….

48. Identify primary care provider Identify core knowledge and skills Maintain an up-to-date medical summary that is portable and accessible Develop an individualized transition plan Apply preventive screening guidelines 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 NeedsAmerican Academy of Pediatrics , American Academy of Family Physicians, American College of Physicians - American Society of Internal Medicine

49. HRTW TOOLsLOOK AT HANDOUTS Checklist for Transition: CoreKnowledge & Skills for Pediatric Practices Changing Roles for Youth Changing Roles for Families