Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move”

1. What’s Health Got to Do With Transition? EVERYTHING! Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME “Real Options Making the Move” Statewide Conference on Transition October 16 – 17, 2006

2. Sweetest Day! 3rd Saturday in the month of October, Sweetest Day observance originated in Cleveland in 1922. Herbert Birch Kingston, a philanthropist and candy company employee wanted to bring happiness into the lives those who were forgotten. Thank-YOU

3. 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.

4. HRTW website: www.hrtw.org

5. Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME pattihackett@hrtw.org

6. HRSA/MCHB State Title V CSHCN Programs • 1935 - Congress passed the Social Security • Act, a law designed to bring some financial • and health security into the lives of America's • most vulnerable citizens. • Title V creates Children with Special Health • Care Needs (CSHCN) in every state, the • District and territory • Healthy People 2010 Objective 16-23 “Increase the proportion of States and territories that have service systems for CSHCN.”

7. Arc of Illinois Family to Family Health Information and Education Center www.thearcofil.org/familytofamily/index.asp • Info and referral services • Health-related training opportunities • Specialized training for leaders • Links - local, regional, statewide and national • Faye Manaster • 708-560-6703 / Toll Free: 866-931-1110 • Illinois Relay: Dial 711 • E-mail: familytofamily@thearcofil.org

8. http://www.uic.edu/hsc/dscc/ Darcy Contri dacontri@UIC.EDU http://internet.dscc.uic.edu/dsccroot/parents/transition.asp • Transition Information Sheet for Families • Transition Worksheet for Parents, Youth • Transition Timeline • Health Care Checklist • School to Work Checklist • Preparing for the Future: Transition to Adulthood • Questions to Ask Potential Adult Care Physicians • Bridging the Gap Between Pediatric and Adult Services

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

10. Take Home Points 1. Know the resources. 2. Make the personal connections. 3. Why not TRY….Be open to new ideas. (have the old ways really worked?) 4. Transition Plan starts in utero. Changes at Dx and Cx in health status. 5.Health & Wellness make the difference!

11. Little Miss-Matched • 5M

12. Disabled?? Special Health Care Needs? HEALTH SERVICES CYSHCN - Children & Youth with Special Health Care Needs - Genetic - Chronic Health Issues - Acquired EDUCATION SERVICE - Youth with Disability - Youth with Health Impairment ADA & 504 - Disability and/or Health Impairment

13. NFI: Delivering on the Promisep. III-39 HRSA's MCHB will take the lead in developing and implementing a plan to achieve appropriate community-based services systems for CYSHCN and their families. Barrier Addressed by Solution / Access to: 1. Comprehensive, family-centered care 2. Affordable insurance 3. Early and continuous screening for SHCN and 4. Transition services to adulthood

14. Surgeon General’s Call for ActionImprove the Health and Wellness of Persons with Disabilities2005 • People nationwide understand that persons with disabilities can lead long, healthy, productive lives, • 2. Health care providers have the knowledge and tools to screen, diagnose and treat the whole person with a disability with dignity

15. Surgeon General’s Call for ActionImprove the Health and Wellness of Persons with Disabilities2005 3. Persons with disabilities can promote their own good health by developing and maintaining healthy lifestyles 4. Accessible health care and support services promote independence for persons with disabilities.

16. Nationwide 9.4 million (13%) <18 Title V CYSHCN963,634 0-18* SSI Recipients1,036,990 0-17 386,360 13-17 Sources: www.cshcndata.org Title V Block Grant FY 2006, www.mchb.hrsa.gov * Most State Title V CSHCN Programs end at age 18 SSA, Children Receiving SSI, December 2005, www.ssa.gov DATA: Nationwide

17. Title V CYSHCN 22,359 0-18* SSI Recipients 44,387 0-17 17,45513-17 Special Education 283,742 6-21 Graduation 78.5% Sources: Illinois State Board of Education Annual Report, 2004 http://www.isbe.state.il.us/spec-ed/pdfs/Annual_Report_2004.pdf DATA: Illinois

18. SSI Recipients Who Work: 18-29

19. CORE National Performance Measures 1.Screening 2. Family 3. Medical Home 4. Health Insurance 5. Community Services 6. Transition SOURCE: BLOCK GRANT GUIDANCE New Performance Measures See p.43 ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf

20. Transition & ……Screening

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

22. Screen for Life Areas How does health affect: • Employment • Leisure, Recreation • Community: transportation, housing, activities • Higher Education or Training

23. Screen for ALL Health Needs • Hygiene • Nutrition (Stamina) • Oral Health • Sexuality Issues (“Doing IT,” GLBTQ) • Mental Health • Routine (Immunizations, Blood-work, Vision, etc.)

24. Transition & ……Family & Youth

25. Informed Decision Makers FERPA Family Education Rights & Privacy Act HIPAA Health Insurance Portability and Accountability Act 1. Privacy  Records 2. Consent  Signature (signature stamp) - Assent to Consent - Varying levels of support - Stand-by (health surrogate) - Guardianship (limited to full)

26. F1 = HELP button • Life-Long Learning • Lessons from Marketing, Business • Email - Group Think Tank • Create-Wisdom Council, Solutions Bank

27. 1. Know Your Health & Wellness Baseline • - How does your body feel on a good day? • - What is your typical body temperature, respiration • count, pulse and elimination habits? • 2. Create 1 page Portable Medical Summary • Use as a reference tool • - accurate medical history and contact numbers. • - Carry in your wallet. • Use for disability documentation

28. 3. Teach Skills EARLY! • Survive & Thrive! • - Encourage questions at each visit. • - Assent: co-sign treatment plans. • - Youth calls for appointments and Rx refills • Concise Medical Reporting • Give brief health status and overview of needs. • Know the emergency plan when health changes.

29. Getting Ready to Move On The Difference - the difference between pediatricians and adult providers. Finding a Doctor – ask around - who may match styles in co-managing health care. Finding a Match - Encourage youth to interview the physician and check out the practice and hospital before the official transfer. Keeping Insurance - Check health care insurance plan. Do this before age 18.

30. Transition &….Medical Home

31. Shared Decision Making

33. Transition & …. Health Care

34. Health?? Services - Payor(more than Medicaid) HEALTH • Wellness HEALTH CARE SERVICES • Medical Home • Primary Care • Care Coordination HEALTH INSURANCE • Public (Medicaid to Medicare) • Private (Family Plan/Self)

35. 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

36. PUBLIC: Medicaid & SSI Connection Medicaid is automatic in all but 11 states known as “209B States” CT, HI, IN, IL, MN, MO, ND, NH, OK, OH, and VA - State requires separate application to Medicaid - State has at least 1 more stringent requirement than the SSI rules for Medicaid eligibility

37. PUBLIC: Medicaid & SSI Connection <18 Gather medical & other evidence 18 Redetermination (based on adult standards) 18-22 Adult Student Section 432 of the Social Security Protection Act extended the student earned income exclusion (SEIE) to any individual under the age of 22 regularly attending school, college, or training designed to prepare him/her for a paying job, this includes students who have IEPs.https://s044a90.ssa.gov/apps10/poms.nsf/lnx/0500501020

38. PRIVATE: Adult Disabled Dependent < 18 - Check Policy -- Family Plan 40+ states have insurance law Requires documentation IL Code Sections 5/356b, 5/367b - from Ch. 73, par. 968b • Incapable of self-sustaining employment • dependent- lifetime care /supervision

39. Transition to Adulthood

40. TRANSITION POLICY 50% policy to transition youth ages 16-25 ASSENT & CONSENT 18% written policy legal responsibility medical decisions & health records > 18 Of these practices - 71% seek verbal assent ·- 25% seek written assent

41. 28 from 17 states 25 pediatricians; 2 Med-Peds, 1 Family Physician AAP-CATCH grants, MCHB Integrated Services Grants, Medical Home Learning collaboratives, Medical Home projects, AAP listserve, LEAHs – most are physicians participating in medical home projects. TRANSITION POLICY 50% have a policy to transition youth ages 16-25 54% coordinating transition activities ASSENT & CONSENT 18% written policy - legal responsibility for medical decisions and health records prior to age 18.Of these practices - 71% seek verbal assent ·   - 25% seek written assent

42. FINDING INFORMATION Practices get transition information from: 54%self-directed research 57%staff-based care coordinator 46%family to family support groups Referral to Other Transition Supports Practices seldom refer to other transition supports

43. What would you do, if you thought you could not fail?

44. Take Home Points 1. Know the resources. 2. Make the personal connections. 3. Why not TRY….Be open to new ideas. (have the old ways really worked? 4. Transition Plan starts in utero. Changes at Dx and Cx in health status. 5.Health & Wellness make the difference!

45. Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME pattihackett@hrtw.org

46. HRSA/MCHB funded National Centers (6) 4. CULTURAL COMPETENCEhttp://www11.georgetown.edu/research/gucchd/nccc/ National Center for Cultural Competence 5. HEALTH INSURANCE http://www.hdwg.org/cc/ Catalyst Center – for Improving Financing of Care for CYSHCN 6. DATAwww.cshcndata.org Data Resource Center National Survey for CSHCN Resources-02

47. HEALTHY & READY TO WORKwww.hrtw.org HRTW Portable Medical Summary - One page summary of health needs that youth or others can carry. Information contains medical history, current medication, name of health surrogate, health insurance numbers, contact information for treating doctors, pharmacy, home health and other vendors. Understanding Health Insurance- Web links to Choosing a Plan, Paying for Care, Public Insurance, Private Insurance, Policy / Advocacy Centers and Insurance Regulations, Laws and Statutes. Decisions & Making Choices- Web section contains information of Informed Decision Making, Assent-Consent, Guardianship, Living Wills and Advance Directives. Resources - 03

48. Resources - 04 HRTW Portal - Laws that Affect CYSHCN http://www.hrtw.org/tools/laws_leg.html • The Term Special Health Care Needs or Disability • Disability Rights Portals • Education Issues • Employment & Disability • Equal Opportunity Access (504, 508 & ADA) • Family Medical Leave Act • HRSA/MCHB – Title V Legislation • Health Insurance Benefits • SSI/SSDI

49. ADOLESCENT HEALTH TRANSITION PROJECT Washington http://depts.washington.edu/healthtr/index.html Transition Timeline for Children and Adolescents with Special Health Care Needs. Transitions involve changes: adding new expectations, responsibilities, or resources, and letting go of others. The Timeline for Children may help you think about the future. Working Together for Successful Transition: Washington State Adolescent Transition Resource Notebook - Great example to replicate. Adolescent Autonomy Checklists Resources - 05

50. HEALTH AND HEALTHCARE IN SCHOOLShttp://www.healthinschools.org/ejournal/2003/privacy.htm The Impact of FERPA and HIPAA on Privacy Protections for Health Information at School. Sampling of the questions from school nurses and teachers. NICHCY - National Dissemination Center for Children with Disabilitieswww.nichcy.org Materials for families and providers on: IDEA, Related Services and education issues – in English/Spanish Section 504http://www.ed.gov/about/offices/list/ocr/504faq.html Resources - 06