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  • Implications to leaving home/school trips/etc
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    1. 1. Health Care Transition Transitions in Care for Adolescents with Special Health Care Needs Preparing for the Difference between pediatric and adult health care Patience H. White, MD, MA, FAAP
    2. 2. Disclosure <ul><li>Dr. White does not have a financial relationship or interest with any proprietary entity producing health care goods or services related to the content of this CME activity. </li></ul><ul><li>The content will not include discussion/ reference of any commercial products or services. </li></ul><ul><li>Dr. White does not intend to discuss an unapproved/ investigative use of commercial products/devices. </li></ul>
    3. 3. www.hrtw.org
    4. 4. <ul><li>What age would people say </li></ul><ul><li>would be the best years </li></ul><ul><li>of their lives </li></ul><ul><li>beginning at age 10 </li></ul><ul><li>in 5 year blocks? </li></ul>
    5. 5. Don’t Want to Grow Up: age adults say they want to remain (USA Today Poll 2000) Age (yrs) Men (%) Women (%) 5-10 8 8 11-14 4 6 15-20 34 20 21-25 29 28 26-30 8 10 31-35 7 10 36-40 3 7 41 and up 7 9
    6. 6. Health Is A Resource For Life <ul><li>Success in the classroom, within the community, and on the job requires that young people are healthy . </li></ul><ul><li>To stay healthy, young people need an understanding of their health and to participate in their health care decisions . </li></ul>
    7. 7. Objectives <ul><li>List the key elements of the national academies’ (AAP, AAFP, ACP, IOM) young people’s and HCPs’ perspective on transition to adult healthcare </li></ul><ul><li>Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care. </li></ul><ul><li>Discuss use of transition tools from the Healthy and Ready To Work (HRTW) website and other national resources. </li></ul>
    8. 8. Think about <ul><li>What do you think youth with SHCN say about successful transitions to adulthood? </li></ul><ul><li>At what age should children/youth start asking their own questions to their Doctor? </li></ul><ul><li>At what age does your practice encourage assent signatures? </li></ul>
    9. 9. Not everything that can be counted counts, and not everything that counts can be counted. Albert Einstein What does the Data tell us?
    10. 10. Outcome Realities <ul><li>Nearly 40% of youth with SHCN cannot identify a primary care physician </li></ul><ul><li>20% consider their specialist to be their ‘regular’ physician </li></ul><ul><li>Primary health concerns are not being met </li></ul><ul><li>Fewer work opportunities, lower high school grad rates and increased drop out from college </li></ul><ul><li>YSHCN are 3 X more likely to live on income < $15,000 </li></ul>CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002
    11. 11. Youth With Disabilities Stated Needs for Success in Adulthood <ul><li>PRIORITIES: </li></ul><ul><li>Career development (develop skills for a job and how to find out about jobs they would enjoy) </li></ul><ul><li>Independent living skills </li></ul><ul><li>Finding quality medical care (paying for it; USA) </li></ul><ul><li>Legal rights </li></ul><ul><li>Protect themselves from crime (USA) </li></ul><ul><li>Obtain financing for school (USA) </li></ul>SOURCE: Point of Departure, a PACER Center publication Fall, 1996
    12. 12. <ul><li>Survey - 1300 YOUTH with SHCN / disabilities </li></ul><ul><li>Main concerns for health: </li></ul><ul><li>What to do in an emergency, </li></ul><ul><li>Learning to stay healthy* </li></ul><ul><li>How to get health insurance*, </li></ul><ul><li>What could happen if condition </li></ul><ul><li>gets worse. </li></ul><ul><ul><li>SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995 </li></ul></ul><ul><ul><li>*SOURCE: National Youth Leadership Network Survey-2001 </li></ul></ul><ul><li>300 youth leaders disabilities </li></ul>Youth are Talking: Are we listening?
    13. 13. <ul><li>What would you think </li></ul><ul><li>a group of “successful” </li></ul><ul><li>adults with disabilities </li></ul><ul><li>would say is the most </li></ul><ul><li>important factor </li></ul><ul><li>that assisted them </li></ul><ul><li>in being successful? </li></ul>
    14. 14. FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important? <ul><li>Self-perception as not “handicapped” </li></ul><ul><li>Involvement with household chores </li></ul><ul><li>Having a network of friends </li></ul><ul><li>Having non-disabled and disabled friends </li></ul><ul><li>Family and peer support </li></ul><ul><li>Parental support w/out over protectiveness </li></ul><ul><li>Source: Weiner, 1992 </li></ul>
    15. 15. <ul><li>2005 British Study of 77 17 year old youth with JIA: </li></ul><ul><li>20% NOT taking their own meds </li></ul><ul><li>Significant association with independent visits (p=0.002) </li></ul><ul><li>55.8% see Rheum with parents, 26% see GP independently </li></ul><ul><li>79% household chores; only 1 work exp (none for 12-14 yr olds) </li></ul><ul><li>14% had had no Career counselling (CC) </li></ul><ul><li>Median no. of CC sessions 1 (0 to 6) </li></ul><ul><li>Adolescent Rheumatology Transition Knowledge Questionnaire ART – KQ Sub-optimal- Median score = 9 (1 to 15) </li></ul><ul><li>HRQol (JAQQ) - Median 2.9 (1 to 6.8) </li></ul><ul><li>Biggest problems: Depression 63.6% </li></ul><ul><li> Fatigue 49.4% </li></ul><ul><li> Frustration 39% </li></ul>Are 17 year olds Involved in their Disease Self Management? Shaw KL, Southwood TR, McDonagh JE 2005
    16. 16. AERC Outcome Research <ul><li>200 youth (ages 12-20)with SHCN & parents completed the following instruments: </li></ul><ul><li>CMI, work experience, demographics, parents perception of work readiness </li></ul><ul><li>Results: </li></ul><ul><li>- Majority of youth with SHCN feel future certain (attitude similar to age mates without disabilities), delayed in all other CMI categories, esp. knowledge of workplace </li></ul><ul><li>- Parents think first job experience should be at age 16 or older </li></ul><ul><li>- parental SES not correlated with CMI </li></ul>
    17. 17. Internal Medicine Nephrologists (n=35) Maria Ferris, MD, PhD, MPH, UNC Kidney Center Survey Components Percentages 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%
    18. 18. <ul><li>A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs </li></ul><ul><ul><li>American Academy of Pediatrics </li></ul></ul><ul><ul><li>American Academy of Family Physicians </li></ul></ul><ul><ul><li>American College of Physicians - </li></ul></ul><ul><ul><li>American Society of Internal Medicine </li></ul></ul><ul><ul><li>Pediatrics 2002:110 (suppl) 1304-1306 </li></ul></ul>
    19. 19. <ul><li>Identify primary care provider </li></ul><ul><li>2. Identify core knowledge and skills </li></ul><ul><li>Knowledge of condition, prioritize health issues </li></ul><ul><li>Maintain an up-to-date medical summary that is portable and accessible </li></ul><ul><li>Apply preventive screening guidelines </li></ul><ul><li>6. Ensure affordable, continuous health insurance coverage </li></ul><ul><li>Pediatrics 2002:110 (suppl) 1304-1306 </li></ul>6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care
    20. 20. IOM QUALITY MEASURES Health Care Processes Should Have: <ul><li>Care based on continuing healing relationships </li></ul><ul><li>Customization based on patient needs and values </li></ul><ul><li>Patient as source of control </li></ul><ul><li>Shared knowledge and free flow of information </li></ul><ul><li>Safety </li></ul><ul><li>Transparency </li></ul><ul><li>Anticipation of needs </li></ul><ul><li>SOURCE: Crossing the Quality Chasm 2001 </li></ul>
    21. 21. Objectives <ul><li>List the key elements of the national academies’ (AAP, AAFP, ACP, IOM) young people’s and HCPs’ perspective on transition to adult healthcare </li></ul><ul><li>Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care. </li></ul><ul><li>Discuss use of transition tools from the Healthy and Ready To Work (HRTW) website and other national resources. </li></ul>
    22. 22. Think About <ul><li>What is transition for youth with SHCN? </li></ul><ul><li>When did you transition to adult care? How about your children? </li></ul><ul><li>What skills do youth need before transitioning to adult HC providers? </li></ul><ul><li>How do you support families in their transitioning roles? </li></ul>
    23. 23. What is Transition? <ul><li>Components of successful transition </li></ul><ul><li>Self-Determination </li></ul><ul><li>Person Centered Planning </li></ul><ul><li>Prep for Adult health care </li></ul><ul><li>Work /Independence </li></ul><ul><li>Inclusion in community life </li></ul><ul><li>Start Early </li></ul>Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals.
    24. 25. Health & Wellness: Being Informed <ul><li>“ 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 .” </li></ul><ul><li>Ansell BM & Chamberlain MA . Clinical Rheum. 1998; 12:363-374 </li></ul>
    25. 26. Time Jan 2004
    26. 27. Societal Context for Youth without Medical Conditions in Transition <ul><li>Parents are more involved - dependency </li></ul><ul><li>“ Helicopter Parents” …Blackhawk types…( CBS 2007) </li></ul><ul><li>Twixters = 18-29 </li></ul><ul><li>- live with their parents / not independent </li></ul><ul><li>- cultural shift in Western households - when </li></ul><ul><li>members of the nuclear family become adults, </li></ul><ul><li>are expected to become independent </li></ul><ul><li>How they describe themselves (ages 18-29) </li></ul><ul><li>61% an adult </li></ul><ul><li>29% entering adulthood </li></ul><ul><li>10% not there yet </li></ul><ul><li>(Time Poll, 2004) </li></ul>
    27. 28. Prepare for the Realities of Health Care Services <ul><li>Difference in System Practices </li></ul><ul><li>Pediatric Services: Family Driven </li></ul><ul><li>Adult Services: Consumer Driven </li></ul>The youth and family finds themselves between two medical worlds …… .that often do not communicate….
    28. 29. Pediatric Adult Age-related Growth& development, future focussed Maintenance/decline: Optimize the present Focus Family Individual Approach Paternalistic Proactive Collaborative, Reactive Shared decision-making With parent With patient Services Entitlement Qualify/eligibility Non-adherence >Assistance > tolerance Procedural Pain Lower threshold of active input Higher threshold for active input Tolerance of immaturity Higher Lower Coordination with federal systems Greater interface with education Greater interface with employment Care provision Interdisciplinary Multidisciplinary # of patients Fewer Greater
    29. 30. Think About <ul><li>Are you/primary care providers using the ACP/AAP/AAFP/Consensus Statement as a guide to accomplish transition for youth with SHCN? </li></ul><ul><li>Have Transition programs been shown to work? </li></ul><ul><li>What age does the literature show is the most effective time to start discussing with the youth about the transition process? </li></ul><ul><li>How do you teach children and youth with SHCN about their wellness and disease baseline? </li></ul>
    30. 31. HRTW Surveys: Results <ul><li>About Those Who Responded </li></ul><ul><li>52 physicians / 26 states </li></ul><ul><li>Most involved with Medical Home projects </li></ul><ul><li>47 pediatricians, 4 Med-Peds, 1 Family </li></ul><ul><li>Consensus Statement- Knowledge </li></ul><ul><li>50% were familiar </li></ul><ul><li>6 % unsure </li></ul><ul><li>42% not </li></ul>
    31. 32. <ul><li>87% Fragmentation of care among </li></ul><ul><li>systems </li></ul><ul><li>56% Lack of services for YSHCN who </li></ul><ul><li>require supported living </li></ul><ul><li>43% Unwilling to transition youth SHCN </li></ul><ul><li>82% Lack of knowledge or linkages to </li></ul><ul><li>community resources </li></ul><ul><li>85% Lack of staff time </li></ul>Results: Barriers to Transition E xtremely Important/Important
    32. 33. <ul><li>83% Lack of capacity of adult providers </li></ul><ul><li>for care of YSHCN </li></ul><ul><li>73% Inability to access adult specialty </li></ul><ul><li>care </li></ul><ul><li>75% Limited coverage for services by </li></ul><ul><li>public/private insurance </li></ul><ul><li>61% Low reimbursement levels for </li></ul><ul><li>transition services </li></ul>Results: Barriers to Transition Extremely Important/Important
    33. 34. Results: Identify Primary Care <ul><li>46% Have Policy to Transition Youth </li></ul><ul><li>if yes, what age? 18-22 </li></ul><ul><li>1% posted the policy for families/youth to see </li></ul><ul><li>63% Have practice to whom they refer </li></ul><ul><li>if yes, why that practice? 70% personal </li></ul><ul><li>relationship </li></ul><ul><li>56% recruit providers </li></ul><ul><li>adult primary /specialty </li></ul><ul><li>(31% want help) </li></ul><ul><li>64% support adult providers </li></ul><ul><li>assuming care for YSCHN </li></ul><ul><li>(29 % want help) </li></ul>
    34. 35. Results: Identify Primary Care <ul><li>92% provide care coordination to </li></ul><ul><li>youth with complex conditions </li></ul><ul><li>(7% want help) </li></ul><ul><li>50% have dedicated staff member </li></ul><ul><li>who coordinates transition </li></ul><ul><li> care coordinator (overlap)>social worker>nurse </li></ul>
    35. 36. Results: Core Knowledge & Skills <ul><li>36% have forms to support transition </li></ul><ul><ul><li>(82% want help) </li></ul></ul><ul><li>39% provide educational materials </li></ul><ul><li>regarding transition </li></ul><ul><ul><li>(48% want help) </li></ul></ul>
    36. 37. Results: Core Knowledge & Skills <ul><li>58% help youth/families </li></ul><ul><li>plan for emergencies </li></ul><ul><li>(31 % want help) </li></ul><ul><li>68% assist with accommodations </li></ul><ul><li>school/studying or work </li></ul><ul><ul><li>(21% want help) </li></ul></ul>
    37. 38. Results: Core Knowledge & Skills <ul><li>63% promote independence in </li></ul><ul><li>health condition management </li></ul><ul><ul><li>(25% want help) </li></ul></ul><ul><ul><li> When youth tern 18-writen policy to </li></ul></ul><ul><ul><li>discuss? 77% no </li></ul></ul><ul><ul><li>Do you seek verbal assent? 81% Written 23% </li></ul></ul><ul><li>50% refer to skill-building </li></ul><ul><li>experiences </li></ul><ul><ul><li>(35% want help) </li></ul></ul>
    38. 39. Results: Core Knowledge & Skills <ul><li>79% refer to community resources/ </li></ul><ul><li>public benefits (15 % want help) </li></ul><ul><li>Formal referral mechanisms in place: </li></ul><ul><li>39% mental health/counseling </li></ul><ul><li>25% adult subspecialty </li></ul><ul><li>21% adult PCPs </li></ul><ul><li>21% dental </li></ul><ul><li>< 15% make formal referral to adult </li></ul><ul><li>services </li></ul><ul><li>VR, SSI work incentives, school or </li></ul><ul><li>college services, recreation, transportation, </li></ul><ul><li>attendant care, Centers for Independent </li></ul><ul><li>Living, supported living, housing </li></ul><ul><li>(about 20% provide information) </li></ul>
    39. 40. Results: Create Portable Medical Summary <ul><li>35% Make transportable medical </li></ul><ul><li>record for some patients </li></ul><ul><li>(43% want help) </li></ul>
    40. 41. Results: Written Health Transition Plan <ul><li>33% Create individualized </li></ul><ul><li>health transition plan </li></ul><ul><li>for at least some patients </li></ul><ul><li>(39% want help) </li></ul><ul><li>61% Helped write IEP goals: </li></ul><ul><ul><li>29% none </li></ul></ul><ul><ul><li>36% 1-5 x in past year </li></ul></ul><ul><ul><li>35% 6 or more times in past year </li></ul></ul>
    41. 42. Results: Preventive Screening <ul><li>86% Preventive screening – CYSHCN </li></ul><ul><li>32% AAP forms </li></ul><ul><li>21% GAPS </li></ul><ul><li>18% Bright Futures </li></ul><ul><li>18% Guidelines to </li></ul><ul><li>Clinical Preventive Services </li></ul><ul><li>7% State health department forms </li></ul><ul><ul><li>Others – created or adapted forms </li></ul></ul>
    42. 43. Results: Preventive Screening <ul><li>65% Screen to identify </li></ul><ul><li>YSHCN who need transition </li></ul><ul><li>services </li></ul><ul><li>(29% want help) </li></ul>
    43. 44. Results: Ensure Continuous Health Insurance (6) <ul><li>43% assist with planning for </li></ul><ul><li>continuous health insurance </li></ul><ul><li>during transition </li></ul><ul><li>(32% want help) </li></ul><ul><li>75% assist with SSI medical </li></ul><ul><li>documentation/re-determination </li></ul><ul><ul><li>(25% want help) </li></ul></ul>
    44. 45. Results: Ensure Continuous Health Insurance (6) <ul><li>88% want information on coding </li></ul><ul><li>for reimbursement for </li></ul><ul><li>transition services </li></ul><ul><li>who turn for info? </li></ul><ul><li>Self directed 44% </li></ul><ul><li>Staff based coor 40% </li></ul><ul><li>Family to Family 33% </li></ul><ul><li>Title V 23% </li></ul>
    45. 46. Results: Overall practice assessment <ul><li>Rate your practice with regards to transition processes in general: </li></ul><ul><li> not interested 2% </li></ul><ul><li>not have, interested 29% </li></ul><ul><li>beginning stages 25% </li></ul><ul><li> working on policy/processes 19% </li></ul><ul><li>have policy and processes integrated 13% </li></ul>
    46. 47. Conclusions <ul><li>*Respondents are reluctant to transition their youth with SHCN to adult practices </li></ul><ul><li>*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 </li></ul>
    47. 48. <ul><li>Identify appropriate primary care provider </li></ul><ul><li>2. Identify core knowledge and skills </li></ul><ul><ul><li>Encounter checklists </li></ul></ul><ul><ul><li>Outcome lists </li></ul></ul><ul><ul><li>Teaching tools </li></ul></ul><ul><li>Concensus Statement Pediatrics 2002:110 (suppl) 1304-1306 </li></ul>6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care
    48. 49. Core Knowledge & Skills: Office POLICY <ul><li>Written transition policy and posted </li></ul><ul><li>Legal health care decision making is discussed prior to youth turning 18 </li></ul><ul><li>Prior to age 18, youth sign assent forms for treatments </li></ul><ul><li>Office forms developed to support transition processes </li></ul><ul><li>Identified staff person coordinates transition activities </li></ul><ul><li>CPT coding used to maximize reimbursement for transition services </li></ul>
    49. 50. Core Knowledge & Skills: MEDICAL HOME <ul><li>Practice creates an individualized health transition plan before age 14 </li></ul><ul><li>2. Organizes a structured observation visit to adult office before transfer </li></ul><ul><li>3. Practice refers youth to specific primary care physicians </li></ul><ul><li>4. Practice actively recruits adult primary care /specialty providers for referral </li></ul><ul><li>5. Practice provides support and confers with adult providers pre/post transfer </li></ul><ul><li>6. Practice provides care coordination for youth with CTD </li></ul>
    50. 51. Core Knowledge & Skills: FAMILY & YOUTH <ul><li>1. Practice discusses transition planning and transfers youth when CTD disease is not in a crisis </li></ul><ul><li>Practice provides educational packet or handouts </li></ul><ul><li>Youth participate in shared care management and self care </li></ul><ul><li>4. Practice assists families/youth to develop an emergency plan </li></ul>
    51. 52. Do you have “ICE” in your cell phone contact list? <ul><li>Create new contact </li></ul><ul><li>Space or Underscore ____ </li></ul><ul><li>(this bumps listing to the top) </li></ul><ul><li>Type “ICE – 01” </li></ul><ul><li>– ADD Name of Person </li></ul><ul><li>- include all ph #s </li></ul><ul><li>- Note your allergies </li></ul><ul><li>You can have up to 3 ICE contacts (per EMS) </li></ul>To Program……….
    52. 53. How to prepare for the difference in roles: Shared Decision Making Provider Parent Young Person Major responsibility Provides care Receives care Support to parent and child Manages Participates Consultant Supervisor Manager Resource Consultant Supervisor
    53. 54. Core Knowledge & Skills: FAMILY & YOUTH <ul><li>6. Practice assists with planning for school and/or work accommodations (504 Plans in high school; letter for DSS for post secondary school; discuss how/when to disclose illness/disability) </li></ul><ul><li>7. Practice assists with medical documentation for program eligibility if needed (SSI, VR, College) </li></ul><ul><li>8. Practice refers family/youth to resources that support skill-building: transition programs, mentoring, camps, recreation, activities of daily living, volunteer/ paid work experiences </li></ul>
    54. 55. Have Transition Programs been shown to improve transition/health outcomes? <ul><li>YES </li></ul><ul><li>Adolescent Employment Readiness Program (USA): generic pediatric hospital based service offering educational, life skills, career and employment readiness </li></ul>
    55. 56. AERC Research: Youth are less interested in any transition organized around medical issues and more interested in a transition to financial and social independence.
    56. 57. AERC Context: Data on Adolescent Work in the USA <ul><li>Employers rank prior work experience, attitude and communication skills most important in hiring decisions </li></ul><ul><li>Work patterns of teenagers during the school year: </li></ul><ul><li> - 40% 7 th and 8 th graders </li></ul><ul><li> - 80% high school students </li></ul><ul><li>Educational level attained relates to survival, future income level and probability of labor force participation </li></ul><ul><li>(Yeltin 1996) </li></ul>
    57. 58. AERC Context: Data on Adolescent Work in the USA <ul><li>Teens take health risks less if work under 20 hrs/week (JAMA, 1998 ) </li></ul><ul><li>Part-time work data key to employment success : </li></ul><ul><li>- essential to future work success (Skurikor 1993) </li></ul><ul><li>Minority, poor and disabled youth have less work experience but when work, same hours and wages attained </li></ul>
    58. 59. 2002 AERC/SSA Program: cohort selection <ul><li>1510 fliers mailed by health insurance to social security income recipients 12 -18 years in DC </li></ul><ul><li> Diagnosis: SSI Qualify 80% MR,LR, CP </li></ul><ul><li>40% co morbidity with CI (e.g. asthma, </li></ul><ul><li>diabetes, CTD) </li></ul><ul><li>178 completed the baseline instruments </li></ul><ul><li>Mean age-14.8 yrs race: AA 96% Latino 4% </li></ul><ul><li>46 lost to follow up after 1 year </li></ul><ul><li> </li></ul><ul><li>132 completing research data at year 2 </li></ul><ul><li>45 inactive / 87 active </li></ul><ul><li>Program centered on vocational readiness </li></ul><ul><li>not health </li></ul>
    59. 60. AERC/SSA Grant: Instruments Administered <ul><li>Process (Formative) Outcome: </li></ul><ul><li>Improvement in measures evidence for improved functioning for those too young for summative outcome measures (employment, </li></ul><ul><li>off SSI) </li></ul><ul><li>Measures used with age matched norms available: </li></ul><ul><li>Ansell-Casey Life Skills Assessment (ACLSA) both youth and Caregiver </li></ul><ul><li>Career Maturity Index (CMI) </li></ul><ul><li>Pediatric Quality of Life Scale (PQLS) </li></ul><ul><li>Schalock Quality of Life </li></ul>
    60. 61. AERC RESULTS <ul><li>After 1 Yr in the AERC, active* 13 yr olds : </li></ul><ul><li>More engaged (three times as many 13 year olds wanted to join AERC program than other ages) </li></ul><ul><li>had less differences in measurements compared to age mates w/o disabilities; gap between norms and participants increased with age of participants </li></ul><ul><li>made significant improvement compared to other ages in the intermediate outcome measures: ACLSA Life Skills, CMI, and Pediatric QoL </li></ul>
    61. 62. AERC RESULTS <ul><li>After 3 years in AERC program, participants receiving AERC services have: </li></ul><ul><li>- more education </li></ul><ul><li>- more paid work experience </li></ul><ul><li>- more likely to leave SSI (6 off SSI at end of study) </li></ul><ul><li>Improved health from youth’s point of view </li></ul><ul><li>More had an adult primary care physician </li></ul><ul><li>ROI of program: 1 youth leaving the SSI rolls pays for 1 Year of the program! </li></ul><ul><li>Wolf-Branigin, Schuyler, White: Research in Social Work, 2007 </li></ul>
    62. 63. <ul><li>3. Maintain an up-to-date medical summary that is portable and accessible </li></ul><ul><ul><li>Knowledge of condition, prioritize health issues </li></ul></ul><ul><ul><li>Communication / learning / culture </li></ul></ul><ul><ul><li>Medications and equipment </li></ul></ul><ul><ul><li>Provider contact information </li></ul></ul><ul><ul><li>Emergency planning </li></ul></ul><ul><ul><li>Insurance information, health surrogate </li></ul></ul><ul><li>Pediatrics 2002:110 (suppl) 1304-1306 </li></ul>6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care
    63. 64. <ul><li>Create Portable Medical Summary </li></ul><ul><li>Create by/with Youth </li></ul><ul><li>Use as a reference tool </li></ul><ul><li>Accurate medical history & contact #s </li></ul><ul><li>Carry in wallet/on computer </li></ul><ul><li>Use for disability documentation, if needed </li></ul>
    64. 65. <ul><li>Preparing for the 15 minute Doctor Visit </li></ul><ul><li>Know Your Health & Wellness Baseline </li></ul><ul><li>How does your body feel on a good day? </li></ul><ul><li>Prepare questions at each visit </li></ul><ul><li>Give brief health status & overview of needs. </li></ul><ul><li>Know emergency plan when health changes. </li></ul><ul><li>What is the youth’s typical body temperature, respiration, heart rate and blood pressure. </li></ul>
    65. 66. <ul><li>4. Create a written health care transition plan by age 14: what services, who provides, how financed (see handout for example of transition plan steps, check lists) </li></ul><ul><ul><li>Expecting, anticipating and planning </li></ul></ul><ul><ul><li>Experiences and exposures </li></ul></ul><ul><ul><li>Skills: check lists for skills and practice, practice, practice </li></ul></ul><ul><ul><li>Collaboration with schools (add health skills to IEP) and community resources </li></ul></ul><ul><li>Pediatrics 2002:110 (suppl) 1304-1306 </li></ul>6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care
    66. 67. <ul><li>5 . Check that preventive screening guidelines are being completed for youth and young adults </li></ul><ul><ul><li>Stay healthy </li></ul></ul><ul><ul><li>Prevent secondary disabilities </li></ul></ul><ul><ul><li>Catch problems early </li></ul></ul><ul><li>Source: Pediatrics 2002:110 (suppl) 1304-1306 </li></ul>6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care
    67. 68. <ul><li>6. Ensure affordable, continuous health insurance coverage </li></ul><ul><ul><li>Payment for services </li></ul></ul><ul><ul><li>Learn responsible use of resources </li></ul></ul><ul><li>Pediatrics 2002:110 (suppl) 1304-1306 </li></ul>6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care
    68. 69. Core Knowledge & Skills: HEALTH CARE INSURANCE <ul><li>Practice is knowledgeable about state mandated and other insurance benefits for youth after age 18 </li></ul><ul><li>2. Practice provides medical documentation when needed to maintain benefits </li></ul>
    69. 70. Transition & ……Insurance <ul><li>NO HEALTH INSURANCE </li></ul><ul><li>40% college graduates (first year after grad) </li></ul><ul><li>1/2 of HS grads who don’t go to college </li></ul><ul><li>40% age 19–29, uninsured during the year </li></ul><ul><li>2x rate for adults ages 30-64 </li></ul><ul><li>SOURCE: Commonwealth Fund 2003 </li></ul>
    70. 71. Access to Employer-Based Coverage for Low and High Wage Families, 1998 KFF Medicaid and the Uninsured January 2004
    71. 72. Health Care Coverage <ul><li>Look with the parents at their health insurance policy small print </li></ul><ul><li>Check state policies to see if youth can stay on their parents health insurance longer </li></ul><ul><li>Review the College health care coverage if applicable </li></ul><ul><li>Reinforce the need for Education to improve employment outcome/wage levels </li></ul>
    72. 73. Extended Coverage – Family Plan Adult, childless continued on Family Plan Increasing age limit, unmarried, childless, most depend on student status (18 states) Up to age 24 - DE, IN, SD* age 25 - CO, ID, ME, MD, MT, NM, RI, TX, VA , WA, WV age 26 - CT, MA, NH, UT age 30 - NJ, SD*employer option BILL INTRODUCED IN 2007 NOT PASSED YET (10 states) AK, CA, FL, MN, MO, NV, NY, PA, OH, TN
    73. 74. Coverage – Family Plan COVERAGE FOR GRANDCHIDLREN (4 states) with/without disabilities MD, MN, NY, TX
    74. 75. Extended Coverage – Family Plan Adult Disabled Dependent Care (40 states) 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 AZ, AR, CA, CT, FT, GA, HI, ID, IL , IN, LA, ME, MD, MA, MI, MN, MS, MO, MT, NE, NV, NH, NJ, NM, NY, NC, ND, OH, OR, RI, SC, SD, TN, TX, UT, VA, VT, WA, WI and WY
    75. 76. <ul><li>Having a Voice: Children and Youth </li></ul><ul><li>Partners in Paying </li></ul><ul><li>Insurance Card: Carry & Present </li></ul><ul><li>Youth pay co pay </li></ul><ul><li>Fill in insurance forms ahead of visit </li></ul><ul><li>Learn about coverage and coding </li></ul>
    76. 77. 9 Easy steps to Plan a Successful Transition EXPECTATIONS: Engage them in their vision of their future-What do you want to do when you are older? Next year? Five years? TEACH : What can you tell me about your medical issues? Do they affect you from doing what you want in the day? OPINION : What do you think of the…? Be open and honest.. listen and be “askable”… Involve in decision making (assent to consent, give them a feeling of competence)
    77. 78. 9 Easy steps to Plan a Successful Transition (2) <ul><li>CHORES: </li></ul><ul><li>Are you doing chores? </li></ul><ul><li>ATTENDANCE: </li></ul><ul><li>How are you doing in school? </li></ul><ul><li>PLANNING: </li></ul><ul><li>How are you doing with your transition plan? </li></ul>
    78. 79. 9 Easy steps to Plan a Successful Transition (3) <ul><li>PARTICIPATION : </li></ul><ul><li>What do you do when not in school? </li></ul><ul><li>CAREER/WORK: </li></ul><ul><li>What kind of work/career do you want to do? </li></ul><ul><li>STAY WELL: </li></ul><ul><li>Are you taking care of your health? </li></ul>
    79. 80. Post-secondary: Medical Issues <ul><li>Selection of school : Career training with support services and scholarships . </li></ul><ul><li>Medical supports needed at school, nearby campus, and plans for emergency and inpatient events. </li></ul><ul><li>Insurance Coverage - is it adequate and is it one plan or a patch of plans? </li></ul><ul><li>Modifications: Work Load, Medical Care, and Proactive Wellness </li></ul><ul><li>DSS visit at the start of school </li></ul>
    80. 81. <ul><li>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. </li></ul><ul><li>Start early </li></ul><ul><li>Ask and reinforce life span skills prepare for the marathon (post your practice transition policies, help families to understand their changing role) </li></ul><ul><li>Assist youth to learn how to extend wellness </li></ul><ul><li>Reality check : Have all of us done the prep work for the send off before the hand off? </li></ul>
    81. 82. Objectives <ul><li>List the key elements of the national academies’ (ACR, AAP, AAFP, ACP, IOM) young people’s and HCPs’ perspective on transition to adult healthcare </li></ul><ul><li>Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care. </li></ul><ul><li>Discuss use of transition tools from the Healthy and Ready To Work (HRTW) website and other national resources . </li></ul>
    82. 83. ANY QUESTIONS?
    83. 84. Patience H. White, MD, MA, FAAP Medical Advisor- HRTW Center Chief Pubic Health Officer Arthritis Foundation Washington, DC [email_address] Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME [email_address]
    84. 85. www.hrtw.org
    85. 86.     Title V Leadership Toni Wall, MPA Kathy Blomquist, RN, PhD Theresa Glore, MS Federal Policy Patti Hackett, MEd Tom Gloss Interagency Partnerships Debbie Gilmer, MEd 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 HRSA/MCHB Project Officer Elizabeth McGuire HRTW TEAM
    86. 87. www.hdwg.org/catalyst/index.php State-at-a-Glance Chartbook on Coverage and Financing of Care for Children and Youth with Special Needs
    87. 88. Medicalhomeinfo.org
    88. 89. www11.georgetown.edu/research/gucchd/nccc
    89. 90. www.familyvoices.org

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