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June 2005. Adolescent to Adult. Health and Other Transition Issues for Children and Youth with Special Health Care Needs. Adolescent Health Transition Project (AHTP). Sponsored by Washington State CSHCN Program E-mail: Address: Box 357920 University of Washington

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June 2005

Adolescent to Adult

Health and Other Transition Issues for Children and Youth with Special Health Care Needs

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Adolescent Health Transition Project (AHTP)

Sponsored by Washington State CSHCN Program


Address: Box 357920

University of Washington

Seattle, WA 98195-7920

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What you will learn today

  • Who are adolescents (youth) with special health care needs (YSHCN)?

  • What is health care -and other-transition?

  • What are the barriers to transition?

  • How can we support transition?

  • What do YSHCN and their families want?

  • What are some “transition tools”? (Adolescent Transition Resource Notebook?)

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Youth with Special Health Care Needs(YSHCN)

  • > 15% of adolescents 12-17 have a special health care need.

  • Boys are twice as likely as girls to receive special education services.

  • ~ 8% of adolescents 10 to 17 have some type of activity limitation.

    What’s Up? Special Needs and Disabilities: Information for Adults Who Care for Teens, 2003

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YSHCN: Washington State

  • ~ 22% of 8th and 12th graders and nearly 25% of 10th graders report: they have a physical, emotional or learning disability or long-term health problem

2002 Washington State Healthy Youth Survey

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Youth with Special Health Care Needs(YSHCN)

  • 90% of YSHCN reach their 21st birthday

  • 45% of YSHCN lack access to a physician familiar with their health condition

  • 30% of all youth 18-24 years of age lack a payment source for health care

  • 40% YSHCN demonstrate ER use annually (vs 25% of ‘typical’ youth)

  • YSCHN experience increased school interruptions

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Life Expectancy: Sickle Cell Disease

Life expectancy

Courtesy of John Reiss

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Life Expectancy - Cystic Fibrosis

Life expectancy

Today, more than one-half of all persons with cystic fibrosis are over the age of 21.

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500,000 Children with Special Health Care Needs turn 18 every year

  • Newacheck & Taylor (1994)

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Developmental Tasks of Adolescence and Young Adulthood every year

  • Separate from parents

  • Develop a healthy self-image

  • Set & achieve education & vocational goals

  • Financial independence

  • Independent living

  • Marriage – Partnership

  • Participate in community life

  • Be happy – intact mental health

John G. Reiss, PhD

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Transition Areas every year

  • Health Care

    • Health promotion and preventive care

    • Specialized care

    • Prevention of secondary disability

  • School to Work

    • Education

    • Vocational readiness

    • Career choice

  • Dependency to Independence

    • Housing

    • Adaptive living skills

      • Dressing/grooming

      • Food purchasing and preparation

      • Budgeting

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National CSHCN Goal #6 every year

All YSHCN will receive the services necessary to make appropriate transitions to all aspects of adult life, including adult health care, work and independence.

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Health Care Transition (HCT) every year

“The purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care system.”

Transition from child-centered to adult health-care systems for adolescent with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993; 14:570-576

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Health Care Transition (HCT) Consensus Statement every year

Goal of HCT:

Maximize lifelong functioning and potential through the provision of high quality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood.


Consensus statement on health care transition for young adults with special health care needs. Pediatrics 2002;110:1304-6

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Culture of Care: Pediatric Provider every year

  • Family-centered

  • Developmentally oriented (School and life progress)

  • Nurturing, high level psychosocial support

  • Interdisciplinary

  • Involve parent direction and consent

  • Flexible

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Culture of Care: Adult Provider every year

  • Individual-based care (not family)

  • Disease focused (not developmentally)

  • Cognitive approach (rather than nurturing)

  • Multidisciplinary (rather than interdisciplinary)

  • Requires patient to be autonomous and function independently

    • From ‘Coming of Age with Diabetes – Patients’ views of a clinic for under 25 year olds’

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Culture Shock every year!

  • Anxiety produced when a person moves to a completely new environment.

    • Not knowing what to do or how to do things

    • Not knowing what is appropriate or inappropriate

    • Feeling old behaviors are not accepted as or considered as normal in the new situation

    • Feeling of a lack of direction

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Barriers to Successful Health Care Transition – (Pediatricians)

  • Difficulty identifying adult primary care providers

  • Adolescent resistance

  • Family resistance

  • Lack of institutional support

    • Time for planning

    • Resources

    • Personnel

      Survey of Pediatric Primary CareProviders

      Peter Scal, MD Pediatrics 2002; 110:1315-1321

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Barriers to Successful Health Care Transition – Youth/Family

  • Little family awareness & knowledge of HCT

  • Lack of preparation of youth for HCT

  • Adult oriented medical providers lack of knowledge of childhood onset chronic conditions

  • Transition often prompted by age or behavior rather than readiness

  • Differences in Child and Adult Medicine

    Health Care Transition Study: 34 focus groups and interviews with youth/young adults, family health care providers (Institute for Child Health Policy)

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Barriers to Successful HCT: Challenges for Adult Providers Youth/Family

  • Provider perception that some preventive services may be unnecessary (e.g. ‘not sexually active’)

  • Complete exams are time consuming for this population (special equipment? sedation?)

  • What to do with abnormal results – will the patient tolerate more invasive testing

  • Who advocates for the patient, esp. if parent/guardian not available

Transitioning Issues for Patients with MR/DD, Shari Robins MD May 2004 Presentation.

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Barriers to Successful HCT: Youth/Family

Challenges for Adult Providers

  • Requires adult providers to acquire new knowledge and skills to care for medically complex young adults with “childhood onset” conditions

  • Patients and families may be challenging both clinically & interpersonally

  • Need to appreciate social & psychological aspects of illness

  • Expectations of patient self-management skills

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Barriers to Successful Health Care Transition (WA State) Youth/Family

  • Lack of medical summary*

  • Medical jargon***

  • As a child, not being involved in decisions related to his or her own health care**

  • Burned out on health care in pediatric

  • setting**

  • Not planning for transition**

    *teens, **young adults, ***teens and young adults

    Adolescent Health Transitions: Focus Group Study ofTeens and YoungAdult with Special Health Care Needs. Fam CommunityHealth 1999;22(2) 43-58

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Barriers to Successful Health Care Transition (WA State) Youth/Family

  • Pediatric caregivers more caring than adult caregivers*

  • Difficult finding an adult provider**

  • Not beginning early***

  • Developmentally, teens are focused on here and now*

  • Parents not wanting to let go*

  • continued…

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Barriers to Successful HCT Youth/FamilyA Surprise Factor

  • Learn how to terminate long-term, emotionally laden relationships – a framework in which to say ‘goodbye’. Pediatricians make it more difficult for the family/youth to move into adult system by continuing to nurture and be available.

  • Graduation certificates; Transition awards

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Psychosocial Benefits Youth/Familyfor Youth

  • Promotes normal social & emotional development

  • Promotes positive self-concept and sense of competence

  • Supports positive self-image and self-reliance

  • Promotes independent living

  • Supports long term planning and life goals

  • Broadens system of interpersonal and social supports

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Health Benefits for Youth Youth/Family

  • Receipt of adult-oriented primary and preventive care –

    • Screening for and treatment of adult health problems

    • Sexuality, fertility, and reproductive health

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PAP smears Youth/Family


Colon cancer screening


Pulmonary embolism


Type II Diabetes


Stress incontinence


Mitral regurgitation


Smoking cessation


Thyroid disorders




Sleep disturbance

Decubitus ulcers


Medical Issues in Adults

Survey of Clients in Adult Training Centers (MR Diagnosis) – Case Western Reserve; Shari Robins MD

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Health Benefits Youth/Family

for Youth

  • Adult-oriented specialty care –

    • Direct experience with exacerbations of the chronic condition in adults

    • Access to adult inpatient services and subspecialists

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Benefits to Pediatricians & Pediatric Facilities Youth/Family

  • Practice within area of training and interest

  • Consistent with organization’s mission & focus

  • Make room for new patients

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Benefits to Youth/FamilyInternists & Adult Facilities

  • Practice in a new area

  • Responsive to a significant need

  • Consistent with facility mission & focus

  • Expanded patient base

  • Clinical research opportunities

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Goals of Individual Health Transition Youth/Family

  • Identified health care provider

  • Written health care transition plan by age 14 years

  • A continuously current medical summary

  • Health care provider who uses comprehensive guidelines for primary care

  • Affordable and continuous health insurance coverage

    • 2002 Consensus Statement – AAP/AAFP/ACP (Am Coll Physicians); Pediatrics

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Transition Begins in Childhood Youth/Family

  • Career planning begins in utero

  • Focus on health promotion and normal growth and development

  • Prevent secondary disabilities

  • Promote self-care and independence

  • Promote socialization and peer activities

  • Encourage early volunteer and later work experiences

  • Refer to developmentally supportive services, early intervention, special education or section 504

    • AAP Every Child Deserves a Medical Home

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Prepare for ‘Letting Go’ Youth/Family

  • Transition is more than a process. It takes all of us to make the journey as smooth as possible …

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Prepare for ‘Letting Go’ Youth/Family

  • Health Care Provider:

  • Facilitating the process by setting the example at different developmental stages

  • Family:

  • Changing care decision-making role to promote independence and self-determination as developmentally appropriate

  • Child/Youth:

  • Assuming roles and responsibilities for preparing for a healthy/productive adulthood.

  • AAP Every Child Deserves A Medical Home

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Prepare for ‘Letting Go’ Youth/Family

  • Think and talk with youth and family in five-year-into-the-future segments

  • Teach/reteach about the health condition at appropriate cognitive level

  • Involve youth (and family) in decision-making (‘assent to consent’)

  • Ask about and support ‘grown-up’ plans

  • Ask youth how to help make their dreams a reality

Adapted from AAP:

Every Child Deserves a Medical Home

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Address What Youth Need to Know for Successful Transition Youth/Family

  • Be able to describe signs and symptoms requiring urgent medical attention

  • Understand the implications of condition and treatments on sexuality and reproductive health

  • Address access to insurance

Peter Scal, Pediatrics 110(6): 2002

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Need to Know (cont.) Youth/Family

  • Know about condition-specific support and information organizations

  • Be able to describe the roles of primary care providers and subspecialists

  • Identify emergency health services

  • Understand health promoting behaviors

  • Monitor treatments and health parameters

Scal, Pediatrics 2002

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Provide Support During Adolescence by Addressing: Youth/Family

  • Wellness, fitness, leisure activities

  • Minor first aid

  • Risk taking

  • Mental health

  • Preventing secondary disabilities

  • Sexuality

  • Preventing abuse

  • Community participation – recreation, religious participation

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Specific steps for the Pediatrician during the teen years Youth/Family

  • Encourage youth to cosign and become involved in the health care process; If guardianship or ‘medical power of attorney’ is an issue, complete before the young adult’s 18th birthday

  • Define physician role and expectations around transition in early teen years

  • Provide a transition plan of care

  • Focus on health promotion, prevention of secondary disabilities and prevention of self-destruction

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Specific steps for the Pediatrician Youth/Family during the teen years

  • Start to address insurance coverage in adulthood

  • Look for sources of adult health care and provide strategies for selecting an adult health care provider

    • Encourage family to visit and ‘interview’ physician and staff

    • Transition primary care before specialty care

    • Provide health record to new provider and give youth a copy (a 1-2 page transition summary)

    • Update portable medical summary and care plans

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Steps for the Pediatric Provider during the youth’s teen years

  • Be aware of other systems/resources for youth and adults with disabilities i.e. “ A Few Good Numbers”

    • Schools

    • Division of Vocational Rehabilitation (DVR)

    • Division of Developmental Disabilities (DDD)

    • SSI for adults/Ticket-to-Work

    • ARC

    • Centers for Independent Living

    • Technology Help

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Transition Care Plan years

  • Create with youth and family at age 14 (or earlier) and update annually

  • Follow all routine guidelines for routine and preventive care

  • Outline major concerns

    • Include data relevant to the concerns

  • Outline a plan of action

    • Indicate the person responsible for each step of the plan

    • Indicate time frame for the steps

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Transition Tools for Youth and Families years

  • AHTP Materials

  • Interactive Health History Summary Form

  • Adolescent Transition Resource Notebook

  • Transition Timelines

  • Adolescent Autonomy Checklist –AHTP(Skills at home, personal skills, health care skills community skills, leisure time skills, skills for the future as education, voc/tech,housing)

  • Don’t Forget About Health Transition info folder

  • Brochures…

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Transition Tools for Youth and Family years

  • Transition Worksheet –

    • Division of Specialized Care for Children, University of Illinois (UI) at Chicago



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Transition Tools for Youth and Family years

  • Transition Information Sheet for Families

    UI at Chicago

  • ‘Speak Up for Health’ materials

  • ‘How Well Do You Know Yourself’

    AZ Racing to the Future Teaching Exam

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Transition Tools for Youth and Families years

  • ‘Get Ready to Manage Your Health Care’

  • Autonomy Checklist

  • Health Care Skills Autonomy Checklist

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Transition Tools for Youth and Families years

  • Adolescent Health Transition Website

  • Internet Resource for Special Children

  • Healthy and Ready to Work (great list of tools/checklists)

  • Disability

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Transition Tools for Youth and Families years

  • Family Voices –

  • Assistive Technology –

  • Life Maps - 0-12 months; 13-35 months; 6-10 yrs; 11-13 yrs; 14-16 yrs; 17-21; short form –

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Transition Tools for Providers: Care Plans years

  • Transition Summary

    • Clinical Treatment Summary

    • Shriners Hospital – Two page summary designed to provide a succinct summary of care, current health status, including listing health care providers, current medications & therapies, equipment and supply needs, functional capabilities, and future

  • Medical Home Learning Collaborative & NICHQ

    • Medical Summary

    • Emergency Treatment Plan

    • Working Care Plan

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Transition Tools - Provider years

  • Emergency Preparedness for CSHCN information -

  • Emergency Form

  • Child Health Note on Transition

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Transition Tools - Provider years

  • AHTP website

    • Transition Resource Notebook

    • Transition Timelines

    • Health History Summary

    • Adolescent Autonomy Checklist

    • Resources Section

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Other Transition Areas: yearsWork and Independence

  • Public School:

  • Special Education (IEPs)

    • Transition Plan in place by age 14

    • Youth must be invited to their IEP planning

    • Services start by age 16.

  • 504 Plans

    • Do not have to have Transition Plans or Services. Their plans address physical access, modification for testing, etc.

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Other Transition Areas: yearsWork and Independence

  • Post – Secondary Education:

  • Office for Civil Rights (OCR)

    • Provides information about the rights of students as well as the obligations of postsecondary schools

  • Community colleges and universities

    • Provide Disability Service Coordinators to assist students

  • In most instances, the student is responsible for accessing resources.

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Other Transition Areas: yearsPost – Secondary Education

  • DO-IT (Disabilities, Opportunities, Internetworking, and Technology)

    • Recruits youth with disabilities into college programs and careers

  • HEATH Resource Center

    • Provides an overview of financial aid for students with disabilities

  • POST-IT (Postsecondary Innovative Transition Technologies)

    • A free web-based resource with comprehensive information and activities for students

    • Starts at 9th grade

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Work and Independence years

  • Division of Vocational Rehabilitation

    • 38 offices statewide

    • Provides a DVR counselor for every public and private HS

    • Provides a variety of services that relate directly to getting and keeping a job

    • Verifies disability through copies of medical records, completion of tests, or evaluations

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Work and Independence years

  • Division of Developmental Disabilities (DDD)

  • Assists in obtaining services and supports which promote everyday activities, routines and relationships

    • Based on individual preference, capabilities and needs

    • Examples – case management, personal care, employment, community access, etc.

  • Resources are limited and needed services may not always be available.

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Work and Independence years

  • The Arc of Washington - 11 chapters

  • Promotes education, health, self-advocacy, inclusion, and choices of individuals with developmental disabilities and their families

  • Information on Guardianship and Self-advocacy

  • Endowment Trust Fund for individuals with developmental disabilities

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Work and Independence years

  • Supplemental Security Income (SSI)

  • Monthly cash benefit for adults who are 65 or older, blind, or disabled without a lot of income.

  • Can apply the day a youth turns 18 – not dependent on parent’s income

  • Provides Medicaid, Work Incentives

  • Ticket-to-Work

  • Provides employment options for PWD/SSI eligible

  • Helps participants keep medical benefits and still work: Healthcare for Workers with Disabilities (HWD)

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Work and Independence years

  • Independent Living Centers - 9 local centers

    • Dedicated to helping people with disabilities to live to maximum level of independence

    • Core Services:

      • Information and Referral

      • Peer Support

      • Advocacy

      • Skills Training

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Work and Independence years

  • Technology Help

  • 1/3 of disabled individuals indicate loss of access to technology would lead to loss of independence

  • 2004 Natl Org on Disability/Harris Survey

  • Washington Assistive Technology Alliance (WATA):


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Work and Independence years

  • Individual Disability Organizations

    • E.g. Prader-Willi Association

  • Generic Disability Organizations

    • E.g. Family Voices

  • Social Work Professionals

    • Clinic

    • Hospital

    • Other

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History of the Notebook years

  • Lance Morehouse – “Amazing Transition Decisions” for the Spokane Public Schools

  • Family Educator Partnership Project (FEPP) adapted the notebook and distributed to FEPP coordinators

  • March 2002 – ‘Successful Transition to Adult Life Forum’

    • Youth/young adults, family members, family support and advocacy groups, school providers, health care providers, and others

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History (continued) years

  • Adolescent Health Transition Project recruited to produce a statewide notebook based on Lance Morehouse’s original

    • Added new sections

    • Formatted according to Washington State Department of Health guidelines

    • Added art and writings of transition age youth

    • Piloted and revised

    • September 2003 – First Edition

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Format of the Notebook years

  • Sections:

    • Transition overview

    • Student

    • School

    • Post-secondary education

    • Work, volunteering, community participation

    • Division of Vocational Rehabilitation (DVR)

    • Community resources…..

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Format of the Notebook years

Sections (cont.):

  • Recreation

  • Legal matters

  • Division of Developmental Disabilities (DDD)

  • Supplemental Security Income (SSI)

  • Health

  • Transition Stories

  • Appendix

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How to Use the Notebook years

  • Individual documents in each section are titled and numbered so they can be removed and copied and easily returned to the notebook

  • Most materials in the notebook were created for families with a variation in literacy required and recommended uses

    • Individualize document usage

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How to Use the Notebook years

  • Documents are generic, fit the state of Washington

    • Communities should add and revise for local information - E.g. Recreation sectionAdditional documents

  • Add to it!

    • Transition stories from local youth

    • Additional sections

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How to Get the Notebook years

  • Download it!


    • Entire notebook, section at a time or a single document

  • Hard copy or CD ROM available

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The Future of the Notebook years

  • A resource, not a final statement!

  • Help us! Send new materials and suggestions for inclusion in future revisions (on the web)

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What Adults with Disabilities Wish All Parents Knew years

  • ‘Disability gives a child great potential for growing to be a resilient, independent, creative person.’

  • Your child needs disability specific information and needs to learn to balance disability-related and general youth needs

Reflections from a Different Journey

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  • ‘Never let any professional tell you what your goals or your child’s goals should be.’

  • Help professionals to help you. Have input into any decision-making for your child, make suggestions for improvements, and say ‘thank you’ for a job well done.

    Reflections From a Different Journey

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Five Rules for Parents: role in the family, don’t exaggerate my differences.

  • Trust your perceptions and observations of your child’s abilities and disabilities.

  • Talk to your children about their life experiences. Draw out and affirm their feelings.

  • Advocate!

  • Feel your losses fully and process them on an ongoing basis.

  • Acceptance is a requirement for happiness.

Jeff Moyer, Disability rights advocate, NPR commentator, songwriter and author; Reflections from a Different Journey