Transcript Healthy and Ready to Work - Syntiro

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
www.hrtw.org
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
www.hrtw.org
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.
www.hrtw.org
The Ultimate Outcome:
Transition to Adulthood
Health Care Transition
Requires Time & Skills
for children, youth, families
and their Doctors too!
www.hrtw.org
www.hrtw.org
www.hrtw.org
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
www.hrtw.org
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.”
www.hrtw.org
CYSHCN
9.4 million (13%) <18
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
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
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 2002:110 (suppl) 1304-1306
www.hrtw.org
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 2002:110 (suppl) 1304-1306
www.hrtw.org
IOM QUALITY MEASURES
The Health care system should be:
• Safe
• Effective
• Patient centered
• Timely
• Efficient
• Equitable
SOURCE: Crossing the Quality Chasm 2001
www.hrtw.org
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
www.hrtw.org
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.
www.hrtw.org
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.
www.hrtw.org
Definition of Medical Home
Care that is:
•
•
•
•
•
•
•
Accessible
Family-centered
Comprehensive
Continuous
Coordinated
Compassionate
Culturally-effective
www.hrtw.org
and for which
the primary care
provider shares
responsibility
with the family.
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
www.hrtw.org
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.
www.hrtw.org
Parent Advisory Group, Nashaway Pediatrics
Care Model for Child Health in a Medical Home
Adapted from Wagner, et al
Community
Resources
and
Policies
Health System
Health Care Organization (Medical Home)
Care
Partnership
Support
System
Design
Decision
Support
Informed,
Activated
Patient/Family
Supportive,
Integrated
Community
Family centered
Delivery
Timely &
efficient
Evidence-based & safe
Clinical
Information
Systems
Prepared,
Prepared,
Proactive
Proactive
Practice
PracticeTeam
Team
Coordinated and Equitable
Functional and Clinical Outcomes
www.hrtw.org
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 < $15,000
www.hrtw.org
CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002
Questions?
www.hrtw.org
June 29 to July 1, 2007
Orlando, FL
www.medicalhomeinfo.org
www.medicalhomeinfo.org/FOP%20Brochure_1.pdf
www.hrtw.org
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
[email protected]
www.hrtw.org
Health & Wellness for CYSHCN:
Being Informed
“The physician’s prime responsibility is the
medical management of the young person’s
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; 12:363-374
www.hrtw.org
Know the OUTCOMES of your services
• Increase Quality of Life
• Prevent Secondary
Conditions
Education
• Access to Health care
Recreation
• Maintain Health
insurance
Work
• Informed decision
making by youth
www.hrtw.org
Independent
living
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
www.hrtw.org
“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
www.hrtw.org
Medical Context
The youth and family find
themselves between two medical
worlds……
that often do not communicate…..
www.hrtw.org
Pediatric
Adult
Age-related
Growth&
development, future
focussed
Maintenance/decline:
Optimize the present
Focus
Family
Individual
Approach
Paternalistic
Proactive
Collaborative,
Reactive
Shared decisionmaking
With parent
With patient
Services
Entitlement
Qualify/eligibility
Non-adherence
>Assistance
> tolerance
Procedural Pain
Lower threshold of
active input
Higher threshold for
active input
Tolerance of
immaturity
Higher
Lower
Coordination with
federal systems
Greater interface
with education
Greater interface with
employment
Care provision
Interdisciplinary
Multidisciplinary
www.hrtw.org
# of patients
Fewer
Greater
Getting Ready: Shared Decision Making
Provider
Major
responsibility
Parent
Provides care
Young Person
Receives care
Support to
manages
parent and child
participates
consultant
supervisor
manager
resource
consultant
supervisor
www.hrtw.org
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)
www.hrtw.org
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
patients…get their ideas… respect
confidentiality…be open and honest.. listen and
be “askable”… involve in decision making (assent
to consent, give them a sense of competence)
www.hrtw.org
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
www.hrtw.org
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 < 20 hours/week
STAY WELL: key to being part of the action for all
players (eg HEADS)
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
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 >18
www.hrtw.org
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
www.hrtw.org
Bottom line: with or without us- youth and families
get older and will move on…Think what can make it
easier; do what’s in your control and support youth to
tackle what’s their control.
1. Start early
2. Ask and reinforce life span skills
prepare for the marathon
3. Assist youth to learn how to extend
wellness
4. Reality check: Have all of us done the
prep work for the send off before the
hand off?
www.hrtw.org
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
[email protected]
www.hrtw.org
Resources-01
HRSA/MCHB funded National Centers (6)
1. 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
www.hrtw.org
Center on Family and Professional Partnerships
Resources-02
HRSA/MCHB funded National Centers (6)
4. CULTURAL COMPETENCE
http://www11.georgetown.edu/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
www.hrtw.org
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
www.hrtw.org
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
www.hrtw.org
Resources - 06
HEALTH AND HEALTHCARE IN SCHOOLS
http://www.healthinschools.org/ejournal/2003/privacy.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/list/ocr/504faq.html
www.hrtw.org
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
www.hrtw.org
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, 102,137–140
• 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
www.hrtw.org
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
Home:The 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
www.hrtw.org