Richard Antonelli, MD Medical Consultant Ceci Shapland, RN, MSN HRTW Family/Youth Consultant Mallory Cyr HRTW Youth Coor

1. Healthy & Ready to Work, to Live and to Participate! Richard Antonelli, MD Medical Consultant Ceci Shapland, RN, MSN HRTW Family/Youth Consultant Mallory Cyr HRTW Youth Coordinator 7th Annual Forum for Improving Children’s Healthcare March 20, 2008

3. HRTW TEAM Title V Leadership Toni Wall, MPA Kathy Blomquist, RN, PhD Theresa Glore, MS Medical Home & Transition Richard Antonelli, MD, MS, FAAP Patience H. White, MD, MA, FAAP Betty Presler, ARNP, PhD Family, Youth & Cultural Competence Mallory Cyr Ceci Shapland, MSN Trish Thomas Federal Policy Patti Hackett, MEd Tom Gloss HRSA/MCHB Project Officer Elizabeth McGuire Interagency Partnerships Debbie Gilmer, MEd

4. www.hrtw.org

5. Disclosure • Neither Dr. Antonelli, Ms. Cyr, nor Ms. Shapland, nor any members of our immediate families have a financial relationship or interest with any proprietary entity producing health care goods or services related to the content of this CME activity. • Our content will not include discussion/reference of any commercial products or services. • We do not intend to discuss an unapproved/ investigative use of commercial products/devices.

6. Objectives • List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare • Define the role of physicians, families, youth and other care providers/coordinators in the transition of youth from pediatric to adult medical care. • Define appropriate use of transition tools from the HRTW website and other national resources.

7. 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.

8. 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

9. Objectives • List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare • Define the role of physicians, families, youth and other care providers/coordinators in the transition of youth from pediatric to adult medical care. • Define appropriate use of transition tools from the HRTW website and other national resources.

10. Think About • Who is caring for youth with SHCN between ages 15-25? • What do you think YOUTH want to know about their health care/status? • At what age should children/youth start asking their own questions to their Doctor? • At what age does your practice encourage assent signatures?

11. Outcome Realities • Nearly 40% cannot identify a primary care physician • 20% consider their pediatric specialist to be their ‘regular’ physician • Primary health concerns that are not being met • Fewer work opportunities, lower high school graduation rates and high 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

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

13. IOM Quality Measures The Health care system should be: • Safe • Effective • Patient centered • Timely • Efficient • Equitable SOURCE: Crossing the Quality Chasm 2001

14. 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

15. How Do We Achieve That Type of System?

16. National Center of Medical Home Initiatives Elements of Medical Home Care that is: • Accessible • Family-centered • Comprehensive • Continuous • Coordinated • Compassionate • Culturally-effective and for which the primary care provider shares responsibility with the family.

17. What is Medical Home Really? A Medical Home is a community-based, primary care setting that integrates high quality, evidence-based standards in providing and coordinating family-centered health promotion as well as acute and chronic condition management.

18. What is Medical Home Really? A sub-specialist can provide a Medical Home as long as all elements of the care needs of the patient are addressed.

19. Health System Community Health Care Organization (Medical Home) Resources and Policies ClinicalInformationSystems Care Partnership Support DeliverySystem Design Decision Support Timely & efficient Family -centered Evidence-based & safe Coordinated and Equitable Functional and Clinical Outcomes Care Model for Child Health in a Medical Home Adapted from Wagner, et al Supportive, Integrated Community Informed, Activated Patient/Family Prepared, Proactive Practice Team Prepared, Proactive Practice Team

20. Shared Decision Making

21. 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 world …..that often do not communicate….

23. Think About • Are you familiar with the ACP?AAP/AAFP/Consensus Statement? • How do you teach children and youth about their wellness baseline? • What 3 essential skills you can teach in the office encounter?

24. A consensus statement on 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 Pediatrics 2002:110 (suppl) 1304-1306

25. Survey of Pediatric Practices on Transition Policies for YSHCN • A pilot survey based on the policy recommendations of the consensus statement 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 a comprehensive family centered model of care.

26. Results of Pediatric Practice Survey • 38% had a stated policy in their practice for when a YSHCN should transfer to an adult physician • 0% had policy posted for families to see • 66% had identified adult practices for referral. • 19% had a policy to discuss legal issues for adulthood before age 18. • 33% had identified a transition coordinator in the office • 29% had care plans for YSHCN supporting transition process Source: White PAS 2006

27. Results of Pediatric Practice Survey • 4% (one practice) used an individualized medical transition plan • 29% had a plan - 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. Source: White PAS 2006

28. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care • Identify primary care provider • Peds to adult • Specialty providers • Other providers Pediatrics 2002:110 (suppl) 1304-1306

29. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 2.Identify core knowledge and skills • Encounter checklists • Outcome lists • Teaching tools

30. Core Knowledge & Skills: POLICY • Identified staff person coordinates transition activities • Office forms are developed to support transition processes • CPT coding is used to maximize reimbursement for transition services • Legal health care decision making is discussed prior to youth turning 18 • Prior to age 18, youth sign assent forms for treatments, whenever possible • Written transition policy states expected age youth should no longer see a pediatric HCP and /or when youth expected to see HCP alone

31. Core Knowledge & Skills: MEDICAL HOME • Practice provides care coordination for youth with complex conditions • Practice creates an individualized health transition plan before age 14 • Practice refers youth to specific primary care physicians • Practice provides support and confers with adult providers post transfer • Practice actively recruits adult primary care /specialty providers for referral

32. Core Knowledge & Skills: FAMILY & YOUTH • Practice discusses transition after diagnosis, and planning with families/youth begins early (ped practice) or when youth are transferred to the practice (adult practice) • Practice provides educational packet or handouts on expectations and information about transition • Youth participate in shared care management and self care (call for appt/ Rx refills) • Practice assists families/youth to develop an emergency plan (health crisis and weather or other environmental disasters)

33. Core Knowledge & Skills: FAMILY & YOUTH • Practice assists with planning for school and/or work accommodations • Practice assists with medical documentation for program eligibility (SSI, VR, College) • Practice refers family/youth to resources that support skill-building: mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences • Practice invites youth to be QI partner

34. Post-secondary: Medical Issues • 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 • Visit the DSS at the start of school

35. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 3.Maintain an up-to-date medical summary that is portable and accessible • Knowledge of condition, prioritize health issues • Communication / learning / culture • Medications and equipment • Provider contact information • Emergency planning • Insurance information, health surrogate Pediatrics 2002:110 (suppl) 1304-1306

36. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 4. Create a written health care transition plan by age 14: what services, who provides, how financed • Expecting, anticipating and planning • Experiences and exposures • Skills: practice, practice, practice • Collaboration with schools (add health skills to IEP) and community resources Pediatrics 2002:110 (suppl) 1304-1306

37. Collaboration with Community Partners • Special Education Co-ops • Higher Education • Vocational Rehabilitation/ • Workforce Development • Centers for Independent Living • Housing, Transportation, Personal Assistance, and Recreation • Mental health • Grant projects in your state

38. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 5.Apply preventive screening guidelines • Stay healthy • Prevent secondary disabilities • Catch problems early Pediatrics 2002:110 (suppl) 1304-1306

39. Core Knowledge & Skills: SCREENING • Exams include routine screening for risk taking and prevention of secondary disabilities • Practice teaches youth lifelong preventive care, how to identify health baseline and report problems early; youth know wellness routines, diet/exercise, etc.

40. Screen for All Health Needs • Nutrition (Stamina) • Exercise • Sexuality Issues • Mental Health • Routine (Immunizations, Blood-work, Vision, etc.) • Secondary Conditions/Disabilities • Accelerated Aging issues

41. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 6. Ensure affordable, continuous health insurance coverage • Payment for services • Learn responsible use of resources Pediatrics 2002:110 (suppl) 1304-1306

42. Core Knowledge & Skills: HEALTH CARE INSURANCE • Practice is knowledgeable about state mandated and other insurance benefits for youth after age 18 • Practice provides medical documentation when needed to maintain benefits

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 Fund 2003

44. 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, ID, IN, IL, ME, MD, MA, MI, MT, NH, NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV

45. Transition to Adulthood

46. Objectives • List the key elements of the national academies’ (AMA, AAFP, ABIM) perspective on adolescence and transition to adult healthcare • Define the role of physicians, families, youth and other care providers/coordinators in the transition of youth from pediatric to adult medical care. • Define appropriate use of transition tools from the HRTW website and other national resources.

47. 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

48. Youth With Disabilities: Stated Needs for Success in Adulthood 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

49. 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

50. 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.” SOURCE: Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374