Transitions: Growing Up Ready to Live! The Ultimate Outcome: Transition to Adulthood

1. Transitions: Growing Up Ready to Live!The Ultimate Outcome: Transition to Adulthood Josie Badger, BS Vice President, NYLN Wampum, PA Nicholas C. Wilkie, MA Transition Specialist MCIL, St. Paul, MN Patti Hackett, MEd Co-Director HRTW National Center Medical Home Promising Practices Forum Bethesda, MD June 24-25, 2008

3. Sometimes Independence Takes a Team

4. Future Quality of Life Planning Ahead Skills

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

6. The Ropes • Healthcare is like a rope sometimes you need a few knots in the rope before it frays apart • The pediatric and adult healthcare systems have two separate and not equal ropes

7. The Pediatric Rope • The rope has different strands in the braid • Doctors • Hospitals • Supports • Services • Each strand contributes to the strength • Need all to work together for a complete environment of support

8. The Fray in the Rope • The ends sometimes come apart • New health concerns • Change of doctors • Loss or change in health insurance • The other strands must carry the weight • Are the other strands well informed? • Do you know your child’s needs? • Do you know where to find the information and supports?

9. 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….

10. 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?

11. 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

12. Living Your Life • Begins by Making Choices • Being Assertive • Use these skills when or at: - IEP meetings - talking with family and friends - Doctor, Dental appts • CILs teach skills in Leadership, Self-Advocacy & Independent Living Skills

13. CORE National Performance Measures Transition & ……… 1. Family 2. Screening 3. Medical Home 4. Health Insurance 5. Community 6. Transition • Youth Involvement • Secondary Disabilities • Peds to Adult • Extend Dependent Coverage • Entitlement to Eligibility • 6. Inclusion in Community

14. 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

15. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care • Identify primary care provider • Peds to adult • Specialty providers • Other providers SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

16. NICK’s Situation: Thought I was done… experiences told me that Searching still… • Numerous questions and concerns • Cerebral Palsy and Aging needs to be tracked • Condition is static, but my age is not • Preventative care is a priority!

17. Josie’s Status • As established as possible • Still trying to find doctors/specialists that are willing to “play well together” • Still juggling how to manage “minor problems” with university physicians • Continuous changing health status • Chronic • Pulmonary • Dx

18. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care 2. Identify core knowledge and skills • Encounter checklists • Outcome lists • Teaching tools

19. HRTW TOOLs Checklist for Transition: • CoreKnowledge & Skills for Pediatric Practices • Changing Roles for Youth • Changing Roles for Families

20. 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 SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

21. 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

23. CIL Role in Applications: CILs • have staff trained members to assist with application processes • assist with organization and planning practices to make connections for eligibility purposes • provide Information and Referral Services

24. 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 and community resources SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

25. The Path of Least Resistance is Not always The Path of Most Benefit • Learn advocacy early • Create mutual relationships in the health field • Transfer responsibility • Support in medical decision making

26. 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)

27. 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 SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

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

29. 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.)

30. 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 SOURCE: Pediatrics 2002:110 (suppl) 1304-1306

31. 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.

32. 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. • coordinator on SSA work incentives:Ticket to Work, linkages to SSA field offices, SSA Benefits Planning, Assistance and Outreach (BPAO) counselors, and Employment Networks. • Assist beneficiaries in understanding the effects of earnings on SSA and other program benefits.

33. 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

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

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

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

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

41. Evaluation

42. 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

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

44. Consensus Statement: Health Care TransitionCritical First Steps to Ensuring Successful Transitioning To Adult-Oriented Health Care 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

45. NCQA -Physician Practice Connections 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. • Office Practice Workflow (MCHB) • Patient Access (MCHB, HRTW) • Patient Education (MCHB, HRTW) • Office Electronic Data/systems • Office HER • Office E-Registry • Office E-Prescribing

46. National Quality Forum Transitions Measurement and Evaluationhospital transitions 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

47. NOF Transitions Measurement and Evaluation 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)

48. NOF Transitions Measurement and Evaluation Process of Care • Technical (IT-electronic med records, etc) • Care coordIdentify 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

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

50. Final Thoughts