2. Transitions: Growing Up Ready to Live! The Ultimate Outcome: Transition to Adulthood Patti Hackett, MEd Co-Director HRTW National Resource Center Heartland Regional Genetics and Newborn Screening Collaborative Annual Conference September 10-11, 2008

4. Growing Up Ready to LIVE! Health & Wellness …. + Humor

5. 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….

6. Big Questions Your life to look in a year, or five years? Actions to make this come true? What school do you want to go to What job do you want to have? What do you want to do for fun Who do you want along with you?

7. Youth are Talking: Are we listening? Main concerns for health they need to address: What to do in an emergency, Learning to stay healthy* How to get health insurance* What if condition gets worse. SOURCES: Joint survey – Minnesota Title V CSHCN Program and the PACER Center, 1995 1300 YSHCN *National Youth Leadership Network Survey-2001 300 youth leaders disabilities

8. 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

9. 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

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

11. 2. Identify core knowledge and skills  Encounter checklists  Outcome lists  Teaching tools 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care

12. HRTW TOOLs Checklist for Transition: Core Knowledge & Skills for Pediatric Practices Changing Roles for Youth Changing Roles for Families

13. 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 SOURCE: Pediatrics 2002:110 (suppl) 1304-1306 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care

14. Handout: Portable Medical Summary Carry in your wallet Good Days - Cheat Sheet: Use as a reference tool - Accurate medical history - Correct contact #s - Document disability Health Crisis - Expedite EMS transport & ER/ED care - Paper talks when you can not

16. 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 and community resources SOURCE: Pediatrics 2002:110 (suppl) 1304-1306 6 Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care

17. Health Care Transition Plan YOUTH INVOLVEMENT (Skills, practice & time) - How to involve the young person in introducing, creating and participating in that plan UPDATE PERIODICALLY - Partnership – youth, family and provider Plan is assessed periodically and changes are made when needed (interests, medical, etc)

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

19. Screening SECONDARY DISABILITIES - Prevention/Monitor - Mental Health - High Risk Behaviors AGING & DETERIORATION - Info long-term effects (wear & tear; Rx, health cx) - New disability issues & adjustments

20. Screen for All Health Needs Hygiene (look good, feel good, smell good) Nutrition (Stamina, Bowel Management, obesity, etc.) Exercise (fitness and stamina) Sexuality Issues (masturbation, STIs, GLBT) OB-GYN (Routine care, Birth Control, Rape) Mental Health (genetic, situational) Routine (Immunizations, Blood-work, Vision, etc.)

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

22. TICKET TO WORK http://www.socialsecurity.gov/work/aboutticket.html Employment Network (EN) of their choice to obtain employment services, vocational rehabilitation services, or other support services to help the beneficiary find and maintain employment MEDICARE (SSDI) Premium-free coverage for 4.5 years beyond the current limit for disability beneficiaries who work. Medicaid (SSI) Most States have the option of providing Medicaid coverage to more people between the ages of 16-64 with disabilities who work.

23. Disability Program Navigator Functions - One-Stop Career Centers outreach and provide direct services to people with disabilities (PWD) prepare for, find, or retain employment by collaborating with mandated and non-mandated WIA partners and agencies.WIA coordinator on SSA work incentives:Ticket to Work, linkages to SSA field offices, SSA Benefits Planning, Assistance and Outreach (BPAO) counselors, and Employment Networks.Benefits Planning, Assistance and Outreach (BPAO) Employment Networks Assist beneficiaries in understanding the effects of earnings on SSA and other program benefits.

24. Extended Coverage – Family Plan 1. 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 2. All Youngs Adults, 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

25. What does the Data tell us? Natl CSHCN 2005-06 HRTW 2004-07 Youth – MN 1997 Youth – NYLN 2003

27. 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?

28. 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?

29. What does the Data tell us? Natl CSHCN 2005-06 HRTW 2004-07 Youth – MN 1997 Youth – NYLN 2003

30. 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%

31. 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%

32. Evaluation

33. Moving to Community-Based Systems of Care: Issues for States Planning for cohorts of YSHCN becoming adults: Sending System: Preparing families, youth and professionals - envisioning adulthood Receiving System: Different expectations, programs, rules and regulations ONE Plan for Collaboration across systems in the community: health, education, work, housing, transportation, technology, play

34. Measures Medical Home with Transitions & … - Screening Prevention Secondary Disabilities - Family/Youth Activated Patient - Health Insurance Maintaining Coverage - Community Services Capacity

35. 1. Identify primary care provider 2. Identify core knowledge and skills 3. Maintain an up-to-date medical summary that is portable and accessible 4. Create a written health care transition plan by age 14: what services, who provides, how financed 5. Apply preventive screening guidelines 6. Ensure affordable, continuous health insurance coverage SOURCE: Pediatrics 2002:110 (suppl) 1304-1306 Ped Consensus Statement: Health Care Transition Critical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care

36. practical tool that assesses an ambulatory practice's use of the Chronic Care Model, and work with GE in the early stages of the Bridges to Excellence incentive program using the Six Sigma approach to identify errors in office practice. Chronic Care Model, Bridges to Excellence Office Practice Workflow (MCHB) Patient Access (MCHB, HRTW) Patient Education (MCHB, HRTW) Office Electronic Data/systems Office HER Office E-Registry Office E-Prescribing NCQA -Physician Practice Connections

37. Q> Could this work for primary care/ sub specialist and ped to adult transitions? - Patient level - Process of Care - Cost and resource use across episode Next slides red = fit with HRTW and Consensus Statement National Quality Forum Transitions Measurement and Evaluation hospital transitions

38. Patient Level Morbidity and mortality (consensus statement: use of GAPs, etc) Functional status Health related quality of life Patient experience in care (HRTW screening tools help youth/parents know what to expect) NOF Transitions Measurement and Evaluation

39. Process of Care Technical (IT-electronic med records, etc) Care coord Identify care coord Decision support medical record, skill set, transition plan Additional Professional level eval from HRTW: Processes needed to make the transition process successful in practice -HRTW forms and screening tools NOF Transitions Measurement and Evaluation

40. Cost and resource use across episode: Total cost of care Opportunity costs to patients continuous source of health insurance NOF Transitions Measurement and Evaluation

41. Final Thoughts

42. Skills Before 10 Before 18 Carry and present insurance card X Know wellness baseline, Dx, Meds XX Make own Doctor appts X Call in Rx X Learning Choice X Decision making (assent to consent) X Prepare for Doc visit: 5 Qs XX Present Co-pay XX Assess: Insurance, SSI, VR X Gather disability documentation X

43. How do we tie a knot of transition between pediatric and adult healthcare? Start early Teach advocacy to youth Tell people where to find the other rope Teach the strands to work together

44. Patti Hackett pattihackett@hrtw.org pattihackett@yahoo.com

45. www.hrtw.org

50. http://www.championsinc.org