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www.hrtw.org
Patti Hackett, MEdCo-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!
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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
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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.
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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.”
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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
708-560-6703 / Toll Free: 866-931-1110
Illinois Relay: Dial 711
E-mail: [email protected]
www.thearcofil.org/familytofamily/index.asp
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http://www.uic.edu/hsc/dscc/
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
Darcy Contri
www.hrtw.org
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
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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
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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 adulthood4. Transition services to adulthood
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Surgeon General’s Call for Action Improve the Health and Wellness of Persons with Disabilities 2005
1. 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
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Surgeon General’s Call for Action Improve the Health and Wellness of Persons with Disabilities 2005
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.
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DATA: Nationwide
Nationwide 9.4 million (13%) <18 Title V CYSHCN 963,634 0-18*
SSI Recipients 1,036,990 0-17
386,360 13-17 Sources:1. www.cshcndata.org2. Title V Block Grant FY 2006, www.mchb.hrsa.gov * Most State Title V CSHCN Programs end at age 183. SSA, Children Receiving SSI, December 2005, www.ssa.gov
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DATA: Illinois
Title V CYSHCN 22,359 0-18*
SSI Recipients 44,387 0-17
17,455 13-17
Special Education 283,742 6-21Graduation 78.5%
Sources:Illinois State Board of Education Annual Report, 2004
http://www.isbe.state.il.us/spec-ed/pdfs/Annual_Report_2004.pdf
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SSI Recipients Who Work: 18-29
IL <18 18-21 22-29
13,534Nationally
3,314
1.0%
32,658
9.7%
79,819
23.7%
IL: # 34Incentives
Gross earnings above SGA $860
75 1619 a Work + SSI Benefits
135 2,139 4,752
3,044 1619 b no SSI + Medicaid
185 3,176 19,252
31 PASSSSI+ Dedicated Savings
3 65 321
210 IRWE 5 312 2.042
255 BWE 4 111 619
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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
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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
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Screen for Life Areas
How does health affect:
• Employment
• Leisure, Recreation
• Community: transportation, housing, activities
• Higher Education or Training
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Screen for ALL Health Needs
• Hygiene
• Nutrition (Stamina)
• Oral Health
• Sexuality Issues (“Doing IT,” GLBTQ)
• Mental Health
• Routine (Immunizations, Blood-work, Vision, etc.)
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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)
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F1 = HELP button
•Life-Long Learning
•Lessons from Marketing, Business
•Email - Group Think Tank
•Create-Wisdom Council, Solutions Bank
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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
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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.
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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.
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Shared Decision Making
Provider Parent/Family Young Person
Major responsibility
Provides care Receives care
Support to parent/family and child/youth
Manages Participates
Consultant Supervisor Manager
Resource Consultant Supervisor
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Issue Pediatric Adult
Age-related
Growth & development, future focussed
Maintenance/decline:Optimize the present
Focus Family Individual
ApproachPaternalisticProactive
Collaborative Reactive
Shared decision-making
With parent With patient
Management Prescriptive Collaborative
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
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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)
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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
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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
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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
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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
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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
TRANSITION POLICY
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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
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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
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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
www.hrtw.org
Resources-02
HRSA/MCHB funded National Centers (6)
4. CULTURAL COMPETENCE
http://www11.georgetown.edu/research/gucchd/ncc
c/
National Center for Cultural Competence
5. HEALTH INSURANCE http://www.hdwg.org/cc/
Catalyst Center – for Improving Financing of
Care for CYSHCN
6. DATA www.cshcndata.org
Data Resource Center National Survey for CSHCN
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Resources - 03
HEALTHY & READY TO WORK www.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.
www.hrtw.org
Resources - 04
HRTW Portal - Laws that Affect CYSHCNhttp://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
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Resources - 05
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
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Resources - 06
HEALTH AND HEALTHCARE IN SCHOOLS http://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 Disabilities www.nichcy.org
Materials for families and providers on: IDEA, Related
Services and education issues – in English/Spanish
Section 504 http://www.ed.gov/about/offices/list/ocr/504faq.html