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: healthtr@u.washington.edu Address: Box 357920 University of Washington Seattle, WA 98195-7920

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?)

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.

Whats Up? Special Needs and Disabilities: Information for Adults Who Care for Teens, 2003

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

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

Life Expectancy: Sickle Cell Disease

60 50 40 30 20 10 0 1950 1970 1980 1990 2000
Courtesy of John Reiss
Life Expectancy Lifeexpectancy

Life Expectancy - Cystic Fibrosis

45 40 35 30 25 20 15 10 5 0 1950 1965 1980 1995 x 2000

Life Expectancy Lifeexpectancy

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

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

Newacheck & Taylor (1994)

Developmental Tasks of Adolescence and Young Adulthood

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

Transition Areas
Health Care

School to Work

Health promotion and preventive care Specialized care Prevention of secondary disability
Education Vocational readiness Career choice Housing Adaptive living skills

Dependency to Independence

Dressing/grooming Food purchasing and preparation Budgeting

National CSHCN Goal #6

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

Health Care Transition (HCT)

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

Health Care Transition (HCT) Consensus Statement

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. AAP, AAFP, ACP-ASIM

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

Culture of Care: Pediatric Provider

Family-centered
Developmentally oriented (School and

life progress) Nurturing, high level psychosocial support Interdisciplinary Involve parent direction and consent Flexible

Culture of Care: Adult Provider

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

Culture Shock!
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

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

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)

Barriers to Successful HCT: Challenges for Adult Providers

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.

Barriers to Successful HCT: 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

Barriers to Successful Health Care Transition (WA State)

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 of Teens and Young Adult with Special Health Care Needs. Fam Community Health 1999; 22(2) 43-58

Barriers to Successful Health Care Transition (WA State)

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

Barriers to Successful HCT A 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

Why move to adult health care?

Psychosocial Benefits for 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

Health Benefits for Youth

Receipt of adult-oriented primary and preventive care
Screening for and treatment of adult health problems Sexuality, fertility, and reproductive health

Medical Issues in Adults

PAP smears Mammograms Colon cancer screening Menopause Pulmonary embolism Hypertension Type II Diabetes Osteoporosis Stress incontinence Glaucoma Mitral regurgitation Menorrhagia Smoking cessation Anorexia Thyroid disorders Deafness Obesity Anemia Sleep disturbance Decubitus ulcers GERD

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

Health Benefits for Youth

Adult-oriented specialty care
Direct experience with exacerbations of the chronic condition in adults Access to adult inpatient services and subspecialists

Benefits to Pediatricians & Pediatric Facilities

Practice within area of training and interest Consistent with organizations mission & focus Make room for new patients

Benefits to Internists & Adult Facilities

Practice in a new area Responsive to a significant need Consistent with facility mission & focus Expanded patient base Clinical research opportunities

Supporting Health Care Transition . . .

Goals of Individual Health Transition

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

Transition Begins in Childhood

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

Prepare for Letting Go

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

Prepare for Letting Go

Health Care Provider:
Facilitating the process by setting the example at different developmental stages

Family:

Changing care decision-making role to promote independence and selfdetermination as developmentally appropriate

Child/Youth:

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

AAP Every Child Deserves A Medical Home

Prepare for Letting Go

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 decisionmaking (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

Address What Youth Need to Know for Successful Transition

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

Need to Know (cont.)

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

Provide Support During Adolescence by Addressing:

Wellness, fitness, leisure activities Minor first aid Risk taking Mental health Preventing secondary disabilities Sexuality

Preventing abuse
Community participation

recreation, religious participation

Specific steps for the Pediatrician during the teen years

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 adults 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 selfdestruction

Specific steps for the Pediatrician 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

Steps for the Pediatric Provider during the youths 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

Transition Care Plan

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

Transition Tools for Youth and Families

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) Dont Forget About

folder Brochures

Health Transition info

Transition Tools for Youth and Family

Transition Worksheet

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

Youth: http://internet.dscc.uic.edu/forms/psu/0596A.pdf Parent: http://internet.dscc.uic.edu/forms/psu/0596B.pdf

Transition Tools for Youth and Family

Transition Information Sheet for Families

UI at Chicago
http://internet.dscc.uic.edu/forms/psu/0592.pdf
Speak Up for Health materials

http://www.pacer.org/publications/transition.htm
How Well Do You Know Yourself

AZ Racing to the Future Teaching Exam

http://www.hrtw.org/tools/check_assessment

Transition Tools for Youth and Families

Get Ready to Manage Your Health Care
http://www.fpg.unc.edu/~ncodh/Data/Articles/ManageHealthCare.h tml

Autonomy Checklist

http://www.spannj.org/Family2Family/adolescent_autonomy_checkli st.htm

Health Care Skills Autonomy Checklist

http://www.minnesotaschoolnurses.org/Health_Care_Skills.pdf

Transition Tools for Youth and Families

Adolescent Health Transition Website http://www.depts.washington.edu/healthtr
Internet Resource for Special Children http://www.irsc.org Healthy and Ready to Work http://www.hrtw.org

(great list of tools/checklists) Disability http://www.disabilityinfo.org

Transition Tools for Youth and Families

Family Voices http://www.familyvoices.org
Assistive Technology http://www.abledata.org

Life Maps - 0-12 months; 13-35 months; 6-10

yrs; 11-13 yrs; 14-16 yrs; 17-21; short form
http://www.chs.ky.gov/commissionkids/transition.htm

Transition Tools for Providers: Care Plans

Transition Summary

Clinical Treatment Summary

http://depts.washington.edu/transmet/The%20process/summary.htm

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
http://www.hrtw.org/tools/check_care.html

Medical Home Learning Collaborative & NICHQ

http://www.medicalhomeimprovement.org/assets/pdf/Compre.pdf

Medical Summary Emergency Treatment Plan Working Care Plan

Transition Tools - Provider

Emergency

information -

Preparedness for CSHCN

http://www.aap.org/advocacy/emergprep.htm
Emergency Form http://www.aap.org/advocacy/blankform.pdf Child

Health Note on Transition

http://www.medicalhome.org/leadership/chn_topics_sa.cfm

Transition Tools - Provider

AHTP website http://www.depts.washington.edu/healthtr

Transition Resource Notebook Transition Timelines Health History Summary Adolescent Autonomy Checklist Resources Section

Other Transition Areas: Work 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.

Other Transition Areas: Work 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.

Post 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

Other Transition Areas:

Work and Independence

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

Work and Independence

Division of Developmental Disabilities (DDD)
Assists in obtaining services and supports

which promote everyday activities, routines and relationships

Resources are limited and needed services

Based on individual preference, capabilities and needs Examples case management, personal care, employment, community access, etc.

may not always be available.

Work and Independence

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 Selfadvocacy Endowment Trust Fund for individuals with developmental disabilities

Work and Independence

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 parents 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)

Work and Independence

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

Work and Independence

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): http://www.wata.org

Work and Independence

Individual Disability Organizations

E.g. Prader-Willi Association

Generic Disability Organizations

E.g. Family Voices

Social Work Professionals

Clinic Hospital Other

Adolescent Transition Resource Notebook

History of the Notebook

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

History (continued)
Adolescent Health Transition Project recruited to produce a statewide notebook based on Lance Morehouses 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

Format of the Notebook

Sections:
Transition overview Student School Post-secondary education Work, volunteering, community participation Division of Vocational Rehabilitation (DVR) Community resources..

Format of the Notebook

Sections (cont.):
Recreation Legal matters Division of Developmental Disabilities (DDD) Supplemental Security Income (SSI) Health Transition Stories Appendix

How to Use the Notebook

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

How to Use the Notebook

Documents are generic, fit the state of

Washington

Communities should add and revise for local information - E.g. Recreation section Additional documents

Add to it!
Transition stories from local youth Additional sections

How to Get the Notebook

Download it!
http://depts.washington.edu/healthtr Entire notebook, section at a time or a single document

Hard copy or CD ROM available

The Future of the Notebook

A resource, not a final statement!

Help us! Send new materials and

suggestions for inclusion in future revisions (on the web)

What Adults with Disabilities Wish All Parents Knew

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

 Never let any professional tell you what your

goals or your childs 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

 Remember the normal things give me chores,

assign me a role in the family, dont exaggerate my differences. tools and support (and kick in the pants) to do it.

Expect your child to do his own work and give the

Reflections from a Different Journey

Five Rules for Parents:

1. Trust your perceptions and observations of your 2.

3.
4. 5.

childs 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