Healthy and Ready to Work

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Pearls for Transitioning Youth with Special
Needs from Pediatrics to Adult
Richard Antonelli, MD, MS, FAAP HRTW Medical
Advisor Associate Professor of
Pediatrics University of Connecticut School of
Medicine Patience H. White, MD, MA, FAAP HRTW
Medical Advisor Chief Public Health Officer,
Arthritis Foundation Washington, DC Public
Health Training Information Network Thursday,
April 19, 2007
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Learning Objectives

• Review the national academies (AMA, AAFP, ABIM)
  perspective on adolescence and transition to
  adult healthcare
• Define the role of physicians and other care
  providers/coordinators in the transition of youth
  from pediatric to adult medical care.
• Access transition tools from the HRTW website and
  other national resources.
• Discuss research and lessons learned from a
  transition program provider perspective

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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.

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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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www.hrtw.org
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Disabled?? Special Health Care Needs?

• HEALTH SERVICES CYSHCN
• - Children Youth with Special Health Care
  Needs
• - Genetic
• - Chronic Health Issues
• - Acquired
• EDUCATION SERVICE
• - Youth with Disability
• - Youth with Health Impairment
• ADA 504
• - Disability and/or Health Impairment

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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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CYSHCN
9.4 million (13) lt18 www.cshcndata.org Title
V CYSHCN 963,634 (0-18) NC-CYSHCN
59,422 SOURCE Title V Block
Grant FY 2006 Application Most
State Title V CSHCN Programs end at age 18

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SSI Recipients
1,036,990 ages 0-17 NC - 36,739
386,360 ages 13-17 NC 13,875
SOURCE SSA, Children Receiving SSI, December
2005

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What Is Transition?
Transition is the deliberate, coordinated
provision of developmentally appropriate and
culturally competent health assessments,
counseling, and referrals.

• To ensure successful transition
• to
• Adult health care system
• Work
• Independence
• Inclusion in community life
• Start Early

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Consensus Statement Health Care Transition

• Critical First Steps
• to Ensuring Successful Transitioning
• To Adult-Oriented Health Care
• 1. Identify primary care provider
• 2. Identify core knowledge and skills
• 3. Maintain an up-to-date medical summary that is
  portable and accessible
• Pediatrics 2002110 (suppl) 1304-1306

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Consensus Statement Health Care Transition

• Critical First Steps
• to 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
• 5. Apply preventive screening guidelines
• 6. Ensure affordable, continuous health insurance
  coverage
• Pediatrics 2002110 (suppl) 1304-1306

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IOM QUALITY MEASURES

• The Health care system should be
• Safe
• Effective
• Patient centered
• Timely
• Efficient
• Equitable
• SOURCE Crossing the Quality Chasm 2001

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Health Care Processes Should Have

• Care based on continuing healing relationships
• Customization based on patient needs and values
• Patient as source of control
• Shared knowledge and free flow of information
• Safety
• Transparency
• Anticipation of needs
• SOURCE Crossing the Quality Chasm 2001

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What is Medical Home Really? -01

• A Medical Home is a community-based, primary care
  setting that integrates high quality,
  evidence-based standards in providing and
  coordinating family-centered health promotion as
  well as acute and chronic condition management.

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What is Medical Home Really? -02

• A subspecialist can provide a Medical Home as
  long as all elements of the care needs of the
  patient are addressed.

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Definition of Medical Home

• Care that is
• Accessible
• Family-centered
• Comprehensive
• Continuous
• Coordinated
• Compassionate
• Culturally-effective

and for which the primary care provider shares
responsibility with the family.
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Functional Definition of Medical Home

• Partnership between family and providers
• Commitment to continuous quality assessment and
  improvement
• Single point of entry to a system of care that
  facilitates access to medical and non-medical
  resources

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Family Definition of Medical Home

• It is an Attitude.
• Care Coordination addressing medical as well as
  non-medical issues.
• Referrals to specialists who embrace similar
  philosophies.
• Parent- Professional Partnership.
• Parent Advisory Group, Nashaway Pediatrics

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Care Model for Child Health in a Medical
Home Adapted from Wagner, et al
Supportive, Integrated Community
Informed, Activated Patient/Family
Prepared, Proactive Practice Team
Prepared, Proactive Practice Team

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Outcome Realities

• Nearly 40 cannot identify a primary care
  physician
• 20 consider their pediatric specialist to be
  their regular physician
• Primary health concerns that are not being met
• Fewer work opportunities, lower high school grad
  rates and high drop out from college
• YSHCN are 3 X more likely to live on income lt
  15,000

CHOICES Survey, 1997 NOD/Harris Poll, 2000 KY
TEACH, 2002
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• Questions?

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June 29 to July 1, 2007Orlando, FL
www.medicalhomeinfo.org www.medicalhomeinfo.org/FO
P20Brochure_1.pdf
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The Ultimate Outcome Transition to Adulthood
Richard C. Antonelli, MD, MS, FAAP Medical
Home Transition HRTW Medical Advisor Chief,
Division of Primary Care Dept of General
Pediatrics Connecticut Children's Medical Center
Co-Head, Academic Division of General
Pediatrics Univ of Conn, School of Medicine
richantonelli_at_hrtw.org
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Health Wellness for CYSHCN Being 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.
• SOURCE Ansell BM Chamberlain MA. Clinical
  Rheum. 1998 12363-374

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Know the OUTCOMES of your services

• Increase Quality of Life
• Prevent Secondary Conditions
• Access to Health care
• Maintain Health insurance
• Informed decision making by youth

Education Recreation Work Independent living
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Transition Tools Follow an informed decision
making road

• Shared management
• Look to the future for needed skills
• Structured observation
• 9 easy questions to plan for a successful
  transition process
• Guide for accommodations

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Shared Management as the Goal

• Consciously not using more common term
  self-management
• View the highest level of
• achievement is not independence
• but effective interdependence
• 
  Kieckhefer 2000

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Medical Context

• The youth and family find themselves between two
  medical worlds
• that often do not communicate..

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(No Transcript)
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Getting Ready Shared Decision Making
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Structured Observation Experience an Adult Med
Visit

• Pre-appt
• - Essential Qs to be asked
• - Essential Qs YOU will ask
• Appt
• - Observe (attitudes approach)
• - Create/Offer questionnaire
• Post-appt
• - Lessons Learned
• - Skills to learn (adult feedback)

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9 Easy steps to Plan a Successful Transition

• EXPECTATIONS Talk with child/youth/ family about
  expectations for the future. Think about the
  future in 1-2 year segments.
• TEACH re-teach about the health condition and
  needed services based on changing cognitive
  development provide prognosis/ natural history
  data
• OPINION Ask the opinion of your young
  patientsget their ideas respect
  confidentialitybe open and honest.. listen and
  be askable involve in decision making (assent
  to consent, give them a sense of competence)

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9 Easy steps to plan a Successful Transition

• CHORES Are they doing chores? Independence
  skills start with having responsibilities in the
  family
• ATTENDANCE consistent attendance at school leads
  to a pattern of consistent attendance on the job
  and likely hood of attendance to post secondary
  school.
• PLANNING Transition planning is key - more than
  a referral-clarify roles for all
  involved/understand health insurance

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9 Easy steps to plan a Successful Transition

• PARTICIPATION Ask about social/ leisure
  activities and strategize how they can
  participate more fully acknowledge teen
  lifestyle
• CAREER Ask about volunteer opportunities in the
  community (keep on work developmental
  milestones), paid work lt 20 hours/week
• STAY WELL key to being part of the action for
  all players (eg HEADS)

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Post-secondary Medical Issues

• Selection of school Career training with support
  services and scholarships.
• Medical supports needed at school, nearby campus,
  and plans for emergency and inpatient events.
• Insurance Coverage (is it adequate and is it one
  plan or a patch of plans)
• Modifications Work Load, Medical Care, and
  Proactive Wellness
• Visit the DSS at the start of school

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What to Do Now for Providers

• Establish Post Transition Policy
• Plan for Parent/Family to leave the examination
  room
• Start Transition plan (tools and templates
  available)
• Teach Health Wellness Baseline

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Screen for All Health Needs

• Hygiene
• Nutrition (Stamina)
• Exercise
• Sexuality Issues
• Mental Health
• Routine (Immunizations, Blood-work, Vision, etc.)
• Secondary Conditions/Disabilities
• Accelerated Aging issues

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What to Do Now for Providers

• Youth appointments after school
• Identify point person in practice
• Preparing the medical record for transfer
• Review Health Insurance Options gt18

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What to Do Now for Children/Youth

• Time for CY to see Doctor alone
• Make a list of questions/concerns you have about
  your health that you can give to your doctor
• Call your doctor to make your own appointment
• Call in your refill prescriptions
• Draft your portable medical summary

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• Bottom line with or without us- youth and
  families get older and will move onThink what
  can make it easier do whats in your control and
  support youth to tackle whats their control.

• Start early
• Ask and reinforce life span skills prepare for
  the marathon
• Assist youth to learn how to extend wellness
• Reality check Have all of us done the prep work
  for the send off before the hand off?

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The Ultimate Outcome Transition to Adulthood
Patience H. White, MD, MA, FAAP Medical Home
Transition HRTW Medical Advisor Chief Public
Health Officer Arthritis Foundation Washington,
DC pwhite_at_arthritis.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 - 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

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Useful Websites for Medical Home

• http//www.medicalhomeinfo.org American Academy
  of Pediatrics hosted site that provides many
  useful tools and resources for families and
  providers 
• http//www.medicalhomeimprovement.org tools for
  assessing and improving quality of care delivery,
  including the Medical Home Index, and Medical
  Home Family Index

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References for MH and CC

• McPherson, M., Arango, P., Fox, H., et al.
  (1998). A new definition of children with special
  health care needs. Pediatrics, 102,137140
• U.S. Department of HHS, New Freedom Initiative.
  www.hhs.gov/newfreedom
• Committee on Children with Disabilities, American
  Academy of Pediatrics. Care coordination policy
  statement. Pediatrics, 2005
• Committee on Quality of Health Care in America,
  Institute of Medicine. (2001). Crossing the
  quality chasm A new health system for the 21st
  century

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References for MH and CC

• Committee on Identifying Priority Areas for
  Quality Improvement, Institute of Medicine.
  (2003). Priority areas for national action
  Transforming health care quality. Adams, K. and
  Corrigan, J. Editors. 
• Antonelli, R. and Antonelli, D., Providing a
  Medical HomeThe Cost of Care Coordination
  Services in a Community-Based, General Pediatric
  Practice, Pediatrics, Supplement, May, 2004.
• Antonelli, R., Stille, C. and Freeman, L.,
  Enhancing Collaboration Between Primary and
  Subspecialty Care Providers for CYSHCN,
  Georgetown Univ. Center for Child and Human
  Development, 2005