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HRTW TEAM Readfiled, ME Bangor, ME Minneapolis, MN Lexington, KY CEC CONFERENCE Louisville, KY April 20, 2007 PowerPoint Presentation
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What’s HEALTH Got to Do with Transition? EVERYTHING! HRTW TEAM Readfiled, ME Bangor, ME Minneapolis, MN Lexington, KY CEC CONFERENCE Louisville, KY April 20, 2007 Health Impacts Performance & Productivity

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What’sHEALTHGot to Do

with Transition?



Readfiled, ME

Bangor, ME

Minneapolis, MN

Lexington, KY


Louisville, KY

April 20, 2007

health impacts performance productivity
Health Impacts Performance & Productivity

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.


Young Adult Katherine Lewis

Health Policy Ceci Shapland

Kathy Blomquist

Patti Hackett

EducationTherese Bernier Burns

today s outcomes
Today’s Outcomes

By the end of 1 hour success

will look, sound and feel like:

  • New knowledge of promising practices for Youth with Special Health Care Needs
  • Ways to increase youth involvement in their own care
  • Energized by working in a brain compatible learning environment that you can model in your work
today s outcomes5
Today’s Outcomes

By the end of 1 hour success

will look, sound and feel like:

  • Introduction to a variety of tools to help youth become more proactive in:

- health care management/shared decision making,

- informed decision making/assent to consent

- medical status reports

- balancing health and wellness

- improving Emotional Quotient/Emotional Intelligence

ways to embed health wellness into your curriculum
Ways to embed Health & Wellness into your curriculum
  • Use structures

A. footprints

B. outcomes

C. parking lot

  • Teach skills using health content
  • Prepare students for P.E.T.’s
  • Model health and wellness

- Teacher made bathroom time at the same time as my speech class so the other kids wouldn’t see me leave - Teacher always made sure I had a seat in the front due to severe hearing loss- Teacher included my disability specifically so the other kids could learn about it

Teachers’ Attitudes Made a Difference

What teachers should know…………supporting students who are disabled and who have special health care needs
  • Know student’s past medical/surgical history
  • Be inclusive in classroom activities
  • Understand learning/developmental needs
  • Be aware and respond to special needs
  • in the classroom: seating, access, ease in
  • moving around, etc.
staying healthy how teachers can help students
Staying HealthyHow teachers can help students
  • Incorporate healthy snacks
  • Encourage physical activities
  • Show proper techniques to keep teeth and gums cleaned
  • Hand-washing
  • Encourage parents to have their children have annual checkups, eye exams and hearing tests as well as dental checkups
involving youth in the classroom
Involving Youth in the Classroom
  • Include students with disabilities in all classroom activities
  • Make all children feel included
  • Don’t make a big deal over a student’s disability or certain health care need(s)
7 things a teacher can do
7 Things a Teacher Can Do
  • Welcome ALL children, disability and all
  • Praise / congratulate when there is progress
  • Keep parents/guardians updated on child’s progress
  • Have parents keep you updated on child’s medical, surgical, and health needs
  • Encourage students to do their very best
  • Don’t make a big deal of a child’s disability
  • Teach other kids how to love all children, even those who are different
health is not separate from education
Health is NOT Separate from Education
  • Health affects performance
  • Energy level
  • Concentration
  • Attendance
health affects everything
Health Affects Everything!!
  • Employment
  • Housing
  • School
  • Community Living
  • Recreation

The Ultimate Outcome: Transition to Adulthood

Health Care Transition Requires

Time & Skills

for children, youth, families and

their Doctors too!

partner with youth and families
Partner with Youth and Families
  • Talk about health in relation to learning
  • Promote participation in health care and decisions
  • Include the school nurse more actively in the IEP
partner with health professionals
Partner with Health Professionals
  • Everyone has the same goal: promoting optimal potential
  • Think health!
  • Transition is about community partners: Partner with primary physician, school nurse, etc
goal of transition
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.

goal of transition21
Goal of Transition

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

youth are talking are we listening
Youth are Talking: Are We Listening?

Experiences that were most important:

  • learning to stay healthy
  • getting health insurance

SOURCE: National Youth Leadership Network


300 youth leaders disabilities

youth are talking health concerns
Youth are Talking: Health Concerns

Survey - 1300 YOUTH with SHCN / 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
be an advocate for yourself
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
be an advocate for yourself25
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
be an advocate for yourself26
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
health life span
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
Screen for Life Areas

How does health affect:

  • Employment
  • Leisure, Recreation
  • Community: transportation, housing, activities
  • Higher Education or Training
screen for all health needs
Screen for All Health Needs
  • Hygiene
  • Nutrition (Stamina)
  • Exercise
  • Sexuality Issues
  • Mental Health
  • Routine

(Immunizations, Blood-work, Vision, etc.)

health affects everything30
Health Affects Everything!

Joe’s Story

  • Great job
  • Excellent training
  • Own apartment
  • Good social life

Then what…………………….???

assessing health in transition employment
Assessing Health in Transition:Employment
  • Does Joe’s health condition dictate certain work conditions?
  • Will Joe’s medication affect his job duties?
  • Should he disclose his health condition to the employer?
  • Does his health dictate hours of work?
post secondary education
Post Secondary Education
  • Does Joe need to take his medication while in class or at work?
  • How will it affect his performance?
  • Will Joe need accommodations in his schedule for medical treatments and/or appointments?
home living
Home Living

Does Joe …….

  • understand his seizure disorder?
  • carry his own emergency medical information?
  • understand the side effects of his medication?
  • have an emergency plan?
  • have health insurance?
community life
Community Life

Does Joe ……..

  • have an adult health care practitioner?
  • know how to communicate his health care needs?
  • know when, how and where to fill a prescription?
  • know how to travel to the doctor or drugstore? Does he have transportation?
leisure recreation
  • Does Joe understand the effects of recreational drugs or alcohol on his health and seizure disorder?
  • Will his medication or health condition affect his choice of activities?
using the iep for health transition
Using the IEP for Health Transition


  • I will learn about my seizure disorder and my health needs to live more safely in the community.


  • I will write a report for social studies on seizure disorders.
  • I will learn three side effects of my medication
using the iep for health transition37
Using the IEP for Health Transition


  • I will develop an emergency plan with my physician and present it to my case manager.
  • I will identify and interview two adult physicians and choose a new adult doctor by June, 2007.
what is a successful transition
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

what is a successful transition39
What is a successful transition?

Youth are able to

  • 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
connecting with the community
Connecting with the Community
  • State Transition Interagency Councils
  • Community Partners
  • Title V
  • Medical Community
collaboration with community partners
Collaboration with Community Partners
  • Special Education Co-ops
  • Higher Education
  • Vocational Rehabilitation/
  • Workforce Development
  • Centers for Independent Living
  • Housing, Transportation, Personal Assistance, and Recreation
  • Mental health
  • Grant projects in your state
where to find collaborative groups
Where to find collaborative groups
  • Summary of Services for Youth with Special Health Care Needs in Kentucky

(see handout - examples of resources )

  • MCHB and other grants
  • Other state information sources

(see handout)

title v cyshcn agencies
Title V CYSHCN Agencies

6 National Performance Measures

for Systems for CYSHCN

  • Screening
  • Family and Youth Involvement
  • Medical Home
  • Insurance
  • Coordinated Systems of Care
  • Transition – the Ultimate Outcome

Block Grant reporting

Services of Title V CSHCN agencies

How to find your state agencies

medical homes
Medical Homes

A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs

  • American Academy of Pediatrics
  • American Academy of Family Physicians
  • American College of Physicians -

American Society of Internal Medicine

Pediatrics 2002:110 (suppl) 1304-1306

Teachers and physicians

can work together!

6 critical first steps to ensuring successful transitioning to adult oriented health care
6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care
  • Identify primary care provider
    • Peds to adult
    • Specialty providers
    • Other providers

Pediatrics 2002:110 (suppl) 1304-1306

6 critical first steps to ensuring successful transitioning to adult oriented health care48
6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care

2. Identify core knowledge and skills

  • Encounter checklists
  • Outcome lists
  • Teaching tools
skills for encounters with health care providers
Skills for Encounters with Health Care Providers
  • Makes appointments (balance health, fun & school)
  • Prepares questions to ask / assent to consent
  • Presents health insurance card (pays co-payments)
  • Keeps medical records
  • Takes medications and calls in refills (Tues-Thurs)
  • Schedules therapies and follows regimens
  • Tracks vendors – equipment, supplies
  • Navigates the system

6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care

3. Maintain an up-to-date medical summary that is portable and accessible

  • Knowledge of condition, prioritize health issues
  • Communication / learning / culture
  • Medications and equipment
  • Provider contact information
  • Emergency planning
  • Insurance information, health surrogate

Pediatrics 2002:110 (suppl) 1304-1306


6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care

4.Create a written health care transition plan by age 14: what services, who provides, how financed

  • Expecting, anticipating and planning
  • Experiences and exposures
  • Skills: practice, practice, practice
  • Collaboration with schools and community resources

Pediatrics 2002:110 (suppl) 1304-1306

6 critical first steps to ensuring successful transitioning to adult oriented health care52
6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care

5.Apply preventive screening guidelines

  • Stay healthy
  • Prevent secondary disabilities
  • Catch problems early

6.Ensure affordable, continuous health insurance coverage

  • Payment for services
  • Learn responsible use of resources

Pediatrics 2002:110 (suppl) 1304-1306

medical context in transition
Medical Context in Transition

Adolescents find themselves

between two worlds…..

that often do not communicate

societal context for youth without diagnoses in transition
Societal Context for Youth without Diagnoses in Transition
  • Parents are more involved - dependency

“Helicopter Parents”

  • Twixters = 18-29

- 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)

informed decision makers
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)


Celebrate the Paperwork!

  • It Means You are Alive!
  • Partners in Paying
  • INSURANCE CARD: Carry & Present
  • Fill in insurance forms ahead of visit
  • Child/Youth give the co-pay
  • Age 10 – call for appt & Rx refills

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?

Create Portable Medical Summary

  • Use as a reference tool
  • - Accurate medical history & contact #s
  • - Carry in your wallet.
  • Use for disability documentation

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.
What would you do,

if you thought you could not fail?







Bernier Burns

resources 01
HRSA/MCHB funded National Centers (6)


Healthy & Ready to Work National Resource Center


National Center on Medical Home Initiatives


National Center on Family and Professional Partnerships

resources 02
HRSA/MCHB funded National Centers (6)


National Center for Cultural Competence


Catalyst Center – for Improving Financing of Care for CYSHCN


Data Resource Center National Survey for CSHCN

resources 03

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
resources 04
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
resources 05

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
resources 06

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

Materials for families and providers on: IDEA, Related Services and education issues – in English/Spanish

Section 504

Resources - 06