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

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

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.

HRTW website:

Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME

HRSA/MCHB State Title V CSHCN Programs 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 “Increase the proportion of States and territories that have service systems for CSHCN.”

Arc of Illinois Family to Family Health Information and Education Center Info and referral services Health-related training opportunities Specialized training for leaders Links - local, regional, statewide and national Faye Manaster / Toll Free: Illinois Relay: Dial

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 Darcy Contri

Growing Up Ready to LIVE! Health & Wellness + Humor

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! Take Home Points

Little Miss-Matched  5M

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 & Disability and/or Health Impairment

NFI: Delivering on the Promise p. 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

Surgeon General’s Call for Action Improve the Health and Wellness of Persons with Disabilities 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

Surgeon General’s Call for Action Improve the Health and Wellness of Persons with Disabilities 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.

DATA: Nationwide Nationwide 9.4 million (13%) <18 Title V CYSHCN 963, * SSI Recipients 1,036, , Sources: Title V Block Grant FY 2006, * Most State Title V CSHCN Programs end at age SSA, Children Receiving SSI, December 2005,

DATA: Illinois Title V CYSHCN 22, * SSI Recipients 44, , Special Education 283, Graduation 78.5% Sources: Illinois State Board of Education Annual Report, ed/pdfs/Annual_Report_2004.pdf

SSI Recipients Who Work: IL< ,534 Nationally  3, % 32, % 79, % IL: # 34 Incentives Gross earnings above SGA $ a Work + SSI Benefits 1352,1394,752 3, b no SSI + Medicaid 1853,17619,252 31PASS SSI+ Dedicated Savings IRWE BWE

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

Transition & ……Screening

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

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

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

Transition & ……Family & Youth

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)

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

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

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.

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.

Transition &….Medical Home

Shared Decision Making ProviderParent/FamilyYoung Person Major responsibility Provides careReceives care Support to parent/family and child/youth ManagesParticipates ConsultantSupervisorManager ResourceConsultantSupervisor

IssuePediatricAdult Age-related Growth & development, future focussed Maintenance/decline: Optimize the present FocusFamilyIndividual Approach Paternalistic Proactive Collaborative Reactive Shared decision- making With parentWith patient Management PrescriptiveCollaborative Non-adherence> Assistance< Tolerance Procedural Pain Lower threshold of active input Higher threshold for active input Tolerance of immaturity HigherLower Coordination with federal systems Greater interface with education Greater interface with employment Care provision InterdisciplinaryMultidisciplinary # of patientsFewerGreater

Transition & …. Health Care

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)

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 SOURCE: Commonwealth Fund 2003

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

PUBLIC: Medicaid & SSI Connection <18 Gather medical & other evidence 18 Redetermination (based on adult standards) 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.

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

Transition to Adulthood

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

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 % 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

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

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

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! Take Home Points

Patti Hackett, MEd Co-Director, HRTW Center Bangor, ME

Resources-02 HRSA/MCHB funded National Centers (6) 4. CULTURAL COMPETENCE National Center for Cultural Competence 5. HEALTH INSURANCE Catalyst Center – for Improving Financing of Care for CYSHCN 6. DATA Data Resource Center National Survey for CSHCN

Resources - 03 HEALTHY & READY TO WORK 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 - 04 HRTW Portal - Laws that Affect CYSHCN  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

Resources - 05  ADOLESCENT HEALTH TRANSITION PROJECT Washington 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 - 06  HEALTH AND HEALTHCARE IN SCHOOLS 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 Disabilities Materials for families and providers on: IDEA, Related Services and education issues – in English/Spanish  Section 504