Healthy and Ready to Work

1
Growing Up Ready to Enjoy Adulthood Whats
Health Got to Do with It???
Patti Hackett, MEd Co-Director, HRTW
Center Bangor, ME Ceci Shapland, RN, MSN HRTW
Family/ Youth Consultant St. Paul, MN Partners
in Policymaking Harrisburg, PA March 30, 2007
2
www.hrtw.org
3

• What Does Health Got to Do with Transition to
  Adulthood?

• Everything!

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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.

5
Health Affects Everything!!

• Employment
• Housing
• School
• Community Living
• Recreation

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Growing Up Ready to LIVE!
Health Wellness Humor
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(No Transcript)
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The Ultimate Outcome Transition to Adulthood
Health Care Transition Requires Time Skills
for children, youth, families and their Doctors
too!

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Who are CYSHCN??

• Children and youth with special health care
  needs are those who have or are at increased risk
  for a chronic physical, developmental,
  behavioral, or emotional condition and who also
  require health and related services of a type or
  amount beyond that required by children
  generally.

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Disabled? Special Health Care Needs?

• HEALTH SERVICES
• Children Youth with Special Health Care Needs
  (CYSHCN)
• - Genetic
• - Chronic Health Issues
• - Acquired
• EDUCATION SERVICES
• - Youth with Disability that impacts learning
  (IEP)
• - Youth with Health Impairment that needs
  support (504 Plan)
• FEDERAL LAWS ADA Section 504
• - Disability and/or Health Impairment

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• Nationwide 9.4 million (13) lt18
• 
  
• Title V CYSHCN 963,634 (0-18) PA? 26,389
• SSI Recipients 1,036,990 ( 0-17) PA? 57,809
• 386,360 (13-17) PA? 22,758
  
• Special Education ( 3-21)PA?270,075
• 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
• EDUCATION PA http//penndata.hbg.psu.edu/BSERepo
  rts/SD_Reports/2005_2006/PDF_Documents/Speced_Data
  _Report_State_Final.pdf

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Goal of Transition

• Improve the health-related quality of life of
  all young people with chronic illness or
  disability and enable them to reach their true
  potential.
• Which means. . . .

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Goal of Transition

• To grow up healthy and able to fully
  participate and enjoy life!

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Bad News! Areas to Improve

• 45 Lack access to physicians familiar with
  their health condition
• 40 Lack a payment source for needed health care
• SOURCE 1997 survey of young adults served
  by the CHOICES Project of Shriners Hospital

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Bad News! Areas to Improve

• Survey results continued
• 80 Lack referrals to adult health
  
  care providers
• 40 Use emergency care in 1 yr compared to 25 in
  typical young adults

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Youth are Talking Health Concerns

• Survey of 1300 YOUTH with SHCN and disabilities
• Main concerns for health
• what to do in an emergency,
• how to get health insurance,
• what could happen if condition gets worse.
• SOURCE Joint survey - Minnesota Title V CSHCN
  Program
• and the PACER Center, 1995

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Be a Self Advocate Building Skills

• Knowing your health needs
• Asking for what you need
• Talking with the doctor
• - choosing a doctor
• - preparing for visits
• Knowing the law
• Problem solving skills

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Take Home Points

• New World New Lingo
• 2. Finding the Allies
• 3. Essential Skills
• 4. Whose Life is it?
• 5. Survive Thrive!

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New World New Lingo
1. Moving Up from Powerless 2. Transferring
Skills Doc/RN?parent ?family friends
Family ? child/youth Youth ?
friends 3. Becoming informed consumer
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New World New Lingo
1. Co-Dependence to Interdependent - At
diagnosis start teaching/learning - How the
system works (DOs, DONTs, and BEST
TIMES) In-patient Shift Change/30 min
windows Outpatient Office Practice hours
Routine Urgent
Rx refills (Tues-Thurs)
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New World New Lingo

• ESSENTIAL SKILLS
• Words Lingo
• Acknowledge Today (Reality)
• Eye on the Future (Hope)

Live your life the way you would have, just know
you will have more equipment
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• Preparing for the 15 minute Doctor Visit
• Know Your Health Wellness Baseline
• How does your body feel on a good day?
• What is your typical body temperature,
• respiration count, plus and elimination
• habits?

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• Create Portable Medical Summary
• Use as a reference tool
• - Accurate medical history contact s
• - Carry in your wallet.
• Use for disability documentation

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• Survive Thrive!
• Encourage questions at each visit.
• TOOL 5 Q
• - 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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Living Well with a Disability
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Shared Decision Making

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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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New Brain Research

• Use it or lose it!
• Practice, practice, practice

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Transition .Medical Home

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YOUTH are Informed

• The physicians prime responsibility is the
  medical management of the young persons disease,
  but the outcome of this medical intervention is
  irrelevant unless the young person acquires the
  required skills to manage the disease and
  his/her life.
• Ansell BM Chamberlain MA. Clinical Rheum.
  1998 12363-374

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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.
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Collaborative Partnership

• Goals
• Youth defines his/her concerns
• Youth and doctor agree on health goals
• Health care skills and understanding are taught
  and supported
• A follow-up plan for staying healthy is
  identified.

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TRANSITION TEAM The Players
Youth
Family
Community Resources
Health Professionals
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Transition Screening
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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

37
Screen for All Health Needs

• Hygiene
• Nutrition (Stamina)
• Exercise
• Sexuality Issues
• Mental Health
• Routine (Immunizations, Blood-work, Vision, etc.)

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Transition . Health Care

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Transition Insurance

• NO HEALTH INSURANCE
• 40 college graduates (first year after grad)
• 1/2 of HS grads who dont go to college
• 40 age 1929, uninsured during the year
• 2x rate for adults ages 30-64
• SOURCE Commonwealth Fund 2003

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PUBLIC Medicaid SSI Connection

• lt18 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/0500
  501020

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Be a Leader and an Advocate for Others

• Understand the system
• Talk with policymakers about your experience
• Share your ideas for a better system
• Understand the law

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Federal Mandates

• The Presidents New Freedom Initiative (2001)
• Responsibility given to HRSA for developing
  and implementing a community-based service system

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Federal Mandates Health Connection

• The Presidents New Freedom Initiative
• HRSA/MCHB develop and implement a
  community-based service system
• 1. Comprehensive, family-centered care
• 2. Affordable insurance
• 3. Early and continuous screening for SHCN
• 4. Transition services to adulthood (Health)

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State Title V CSHCN Block Grant

• National Performance Measures
• To help states develop effective mechanisms to
  achieve a system of care for all children with
  special health needs and their families by 2010,
  six national performance measures (NPM) will
  serve as a guide to states in meeting this goal.
• SOURCE BLOCK GRANT GUIDANCE
• New Performance Measures
  See p.43 ftp//ftp.hrsa.gov/mchb/
  blockgrant/bgguideforms.pdf

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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
• ftp//ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pd
  f

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HRSA/MCHB Block Grant NPM 6

• Transition to Adulthood
• Youth with special health care needs
• will receive the services necessary to make
  transitions to all aspects of adult life,
  including adult health care, work, and
  independence. (2002)
• SOURCE BLOCK GRANT GUIDANCE
• New Performance Measures
  See p.43 ftp//ftp.hrsa.gov/mchb/
  blockgrant/bgguideforms.pdf

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Surgeon Generals Call for Action Improve the
Health and Wellness of Persons with Disabilities
2005

• 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 Generals 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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Transition to Adulthood
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• What would you do,
• if you thought you could not fail?

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What is a successful transition?

• Youth are able to
• Access health services independently
• Discuss their health condition
• Communicate their health care needs
• Self-manage their care
• or support is available

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What is a successful transition?

• Youth are able to (cont.)
• Feel comfortable seeing
• the doctor alone
• Make health care decisions
• or support is in place
• Young adults
• Have insurance
• Have health care that is developmentally
  appropriate primary, specialty, therapies, AT

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Skills Info YOU need to Survive Thrive! so
you feel like a
1. Insurance Card - Where is it

• My mother or father has it
• I lost it
• C. I carry it.
• D. My dog ate it

•  

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2. Doctor office What happens?
A. I go by myself in the exam room. B. I never go
to the doctors office. C. I bring a list of
questions to ask. D. My mother or father is
always with me.

•  

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3. Health Wellness What it Yours?

• I brush my teeth everyday and go to the
• dentist at least twice a year.
• B. I know my pulse and temperature.
• C. My Doctor knows this stuff, I dont need to
• know that stuff.
• D. I do a well-check everyday.

•  

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4. Health Information What do you know?

• I carry information about my health
• issues in my wallet.
• B. Kids dont need to know this.
• C. My Doctor knows this, I dont need to
• know that stuff.
• D. I look it up on the computer.

•  

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5. Medications When and How?

• A. My family gives them to me.
• . B. I dont need to know the names of them.
• C. I call the Pharmacy for refills.
• D. I take my pills when I am supposed to.

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6. Not feeling well What to do?

• I go to school anyways.
• I know symptoms that need quick attention.
• C. I know who to call when I am sick.
• D. I call my mother.

•  

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7. Meal Planning-What to eat?

• My mother always plans and cooks for me.
• B. I help plan and shop for food.
• C. Eating three or more fruits a day is important
  
• to my health.
• D. I eat McDonalds twice a week!

•  

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8. Making the doctor appointment - calling
ahead!
A. I call for my own appointments B. do not
know my doctors number. C. My mother or
father make my appointments. D. I keep a
calendar of appointments important
dates.

•  

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9. Preventative care-looking ahead!
A. Routine check-ups for women should include
pap smears and breast exams. B. I have talked to
the doctor about my sexuality. C. Routine
check-up for men includes a testicular exam. D.
I talked with my doctor about preventative
care.

•  

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10. Emergency Care-making a plan!
A. I have emergency numbers in my wallet. B. I
have an emergency care plan that I made with my
doctor. C. I do not know what to do in case of
emergency. DD. I just call my mother or father
and let them handle it.

•  

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11. Building the health care team.

• A. My doctor is the leader of the team.
• B. My mother or father make the health care
  decisions.
• C. I make the decisions on my health issues.
• D. I can co-sign for surgery and medical
  treatment.

•  

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www.hrtw.org
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Be an Advocate for Yourself

• Learn about your health
• Keep your portable medical summary up to date
• Prepare for appointments
• Make your own appointment
• Understand your medications
• Get your own refills

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Be an Advocate for Yourself

• Know how to negotiate
• Know the law
• Know how to ask for what you want and need
• Learn good problem-solving skills
• Understand health insurance and how to pay for
  your health care.

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Be an Advocate for Yourself

• Find a health advocate
• Carry health information insurance card, health
  summary
• Know community resources
• Make informed health care decisions
• Identify an adult doctor

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Patti Hackett, MEd Co-Director, HRTW
Center Bangor, ME pattihackett_at_hrtw.org Ceci
Shapland, RN,MSN HRTW Family/ Youth
Consultant St. Paul, MN cecishapland_at_hrtw.org

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Resources-01

• HRSA/MCHB funded National Centers (6)
• HEALTH TRANSITION www.hrtw.org
• Healthy Ready to Work National Resource
  Center
• 2. MEDICAL HOME www.medicalhomeinfo.org
• National Center on Medical Home Initiatives
• 3. FAMILY PARTNERSHIP www.familyvoices.org
• National Center on Family and Professional
  Partnerships

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Resources-02

• HRSA/MCHB funded National Centers (6)
• 4. CULTURAL COMPETENCEhttp//www11.georgetown.ed
  u/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. 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.

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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

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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/priva
  cy.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/li
  st/ocr/504faq.html