Healthy and Ready to Work

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Whats HEALTH Got to Do with Transition?
EVERYTHING!
Patti Hackett, MEd Co-Director, HRTW
Center Bangor, ME Family Voices-Massachusetts Jo
ining Voices Conference Framingham, MA Nov. 29,
2006
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www.hrtw.org
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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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Growing Up Ready to LIVE!
Health Wellness Humor
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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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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. Strengthening Families -
Support (Family to Family) - Mentor (Life
Coach) - Counseling (Getting thru the
hard patch) - Financial Planning
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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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Transition Family Youth
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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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Transition .Medical Home

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Medical Home includes.

• A partnership - family and primary care doctor.
• A relationship - mutual trust and respect.
• Connections - supports - services for child /
  family.
• Respect for the familys cultural and religious
  beliefs.
• After hours weekend access to medical
  consultation
• Families feel supported in caring for their child
  
• Primary doctor works with team/other care
  providers

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Central MassachusettsMedical Home Network
Initiative

• UMass Memorial Pediatric Primary Care - Worcester
• Nashaway Pediatric - Sterling/Clinton
  
• South County Pediatrics - Webster
• Quality Kids Kare - Worcester
• Lincoln St. Pediatrics - Worcester
• Medical Associates Pediatrics Leominster
• Tri River Family Health Center - Uxbridge

• Barbara.Donati_at_umassmed.edu
• Beth.Pond_at_umassmed.edu

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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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(No Transcript)
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Transition to Adulthood
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• Celebrate the Paperwork!
• It Means You are Alive!
• Reduce stress (one thing different)
• Better at adapting
• Increase problem solving skills
• Learn how to negotiate

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• It Means You are Alive!
• Create routine make it a habit
• LIVE Brush teeth, bathroom, wellness
• PLAN Emergency/ practice
• INFO In the car, purse, trusted others
• Supplies 2 /Keep in car, other house
• Basket by the door important papers
• (better-scan)

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• Celebrate the Paperwork!
• It Means You are Alive!
• Partners in Paying
• INSURANCE CARD Carry Present
• Fill in insurance forms ahead of visit
• Learn about coverage and coding
• Child/Youth give the co-pay
• Age 10 call for appt Rx refills

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Societal Context for Youth without Diagnoses in
Transition

• Parents are more involved - dependency
• Helicopter Parents
• Twixters 18-19
• - live with their parents / not independent
• - cultural shift in Western households - when
  
• members of the nuclear family become adults,
  
• are expected to become independent
• How they describe themselves (ages 18-29)
• 61 an adult
• 29 entering adulthood
• 10 not there yet
• (Time Poll, 2004)

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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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PRIVATE Adult Disabled Dependent

• lt 18 - Check Policy -- Family Plan
• 40 states have insurance law
• Requires documentation
• GENERAL LAWS OF MASSACHUSETTS - PART I
• ADMINISTRATION OF THE GOVERNMENT - TITLE XXII.
  CORPORATIONS
• CHAPTER 175. INSURANCE
• ACCIDENT AND HEALTH INSURANCE
• Chapter 175 Section 108 Accident and health
  insurance
• policies commissioner's approval contents
•  
• Massachusetts Ann. Laws ch. 175, Section 108
  2(a)(3).
• http//www.state.ma.us/legis/laws/mgl/1752D108.ht
  m
• mentally or physically incapable of earning
  his own living on the typical termination date of
  the ins plan

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Growing Up Ready to LIVE!

• Have a Dream then a Plan
• Child/Youth is part of the community recreation,
  education and a buying consumer
• Own identity
• Skills communication, negotiation, resilience
  EQ
• Health Wellness for ALL family members

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• It Means You are Alive!
• Survive Thrive
• Responsible Role in the family
• Responsible Medications
• Responsible Equipment

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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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Whats Health Got to Do with Transition?
EVERYTHING!

• Quality of Life Living
• Relationships
• School / Employment
• Housing
• Community Living
• Recreation

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

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www.hrtw.org
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Glen, age 30 - professional turf writer and
thoroughbred racing analyst. One of only 6 people
who provided Beyer Speed Figures for the Daily
Racing Form. Doctors predicted that he wouldnt
live to see his 2nd birthday due to SMA. He
outlived his Doctor. He used a motorized
wheelchair to move, a portable ventilator to
breathe and voice activated software to work at a
computer, and acted as if these were minor
inconveniences. Im just a person who needs
more equipment. Insurance Court ordered
Private through Father Step-mother
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Patti Hackett, MEd Co-Director, HRTW
Center Bangor, ME pattihackett_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