Transcript Slide 1

Healthy & Ready to Work,
to Live and to Participate!
Richard Antonelli, MD
Medical Consultant
Ceci Shapland, RN, MSN
HRTW Family/Youth Consultant
Mallory Cyr
HRTW Youth Coordinator
7th Annual Forum for Improving Children’s
Healthcare
March 20, 2008
HRTW TEAM
Title V Leadership
Toni Wall, MPA
Kathy Blomquist, RN, PhD
Theresa Glore, MS
Family, Youth &
Cultural Competence
Mallory Cyr
Medical Home & Transition
Richard Antonelli, MD, MS, FAAP
Patience H. White, MD, MA, FAAP
Betty Presler, ARNP, PhD
Federal Policy
Patti Hackett, MEd
Tom Gloss
Ceci Shapland, MSN
Trish Thomas
Interagency Partnerships
Debbie Gilmer, MEd
HRSA/MCHB Project Officer
Elizabeth McGuire
www.hrtw.org
Disclosure
• Neither Dr. Antonelli, Ms. Cyr, nor Ms. Shapland,
nor any members of our immediate families have a
financial relationship or interest with any proprietary
entity producing health care goods or services
related to the content of this CME activity.
• Our content will not include discussion/
reference of any commercial products or services.
• We do not intend to discuss an unapproved/
investigative use of commercial products/devices.
Objectives
• List the key elements of the national academies’
(AMA, AAFP, ABIM) perspective on
adolescence and transition to adult healthcare
• Define the role of physicians, families, youth and
other care providers/coordinators in the
transition of youth from pediatric to adult medical
care.
• Define appropriate use of transition tools from
the HRTW website and other national resources.
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.
What is Health Care Transition?
Transition is the deliberate, coordinated
provision of developmentally appropriate
and culturally competent health assessments,
counseling, and referrals.
Components of successful transition
• Self-Determination
• Person Centered Planning
• Prep for Adult health care
• Work /Independence
• Inclusion in community life
• Start Early
Objectives
• List the key elements of the national academies’
(AMA, AAFP, ABIM) perspective on
adolescence and transition to adult healthcare
• Define the role of physicians, families, youth and
other care providers/coordinators in the
transition of youth from pediatric to adult medical
care.
• Define appropriate use of transition tools from
the HRTW website and other national resources.
Think About
• Who is caring for youth with SHCN between
ages 15-25?
• What do you think YOUTH want to know about their
health care/status?
• At what age should children/youth start asking their
own questions to their Doctor?
• At what age does your practice encourage assent
signatures?
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
graduation rates and high drop out from college
• YSHCN are 3 X more likely to live on
income < $15,000
CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002
Internal Medicine Nephrologists (n=35)
Survey Components
Percent of transitioned patients
Percentages
< 2% in 95% of practices
Transitioned pats. came with an introduction
75%
Transitioned patients know their meds
45%
Transitioned patients know their disease
30%
Transitioned patients ask questions
20%
Parents of transitioned patients ask questions
69%
Transitioned Adults believed they had a difficult
transition
40%
Maria Ferris, MD, PhD, MPH, UNC Kidney Center
IOM Quality Measures
The Health care system should be:
• Safe
• Effective
• Patient centered
• Timely
• Efficient
• Equitable
SOURCE: Crossing the Quality Chasm 2001
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
How Do We Achieve
That Type of System?
National Center of
Medical Home Initiatives
Elements 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.
What is Medical Home Really?
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.
What is Medical Home Really?
A sub-specialist can provide a Medical Home as long
as all elements of the care needs of the patient are
addressed.
Care Model for Child Health in a Medical Home
Adapted from Wagner, et al
Health System
Community
Resources
and
Policies
Health Care Organization (Medical Home)
Care
Partnership
Support
Supportive,
Integrated
Community
Family centered
Delivery
System
Design
Decision
Support
Informed,
Activated
Patient/Family
Timely &
efficient
Evidence-based &
safe
Clinical
Information
Systems
Prepared,
Prepared,
Proactive
Proactive
Practice
PracticeTeam
Team
Coordinated and Equitable
Functional and Clinical Outcomes
Shared Decision Making
Provider
Parent
Young Person
Major responsibility
Provides care
Receives care
Support to parent and
child
Manages
Participates
Consultant
Supervisor
Manager
Resource
Consultant
Supervisor
Prepare for the Realities
of Health Care Services
Difference in System Practices
• Pediatric Services: Family Driven
• Adult Services: Consumer Driven
The youth and family finds themselves
between two medical world
…..that often do not communicate….
Pediatric
Adult
Age-related
Growth&
development,
future focussed
Maintenance/decline:
Optimize the present
Focus
Family
Individual
Approach
Paternalistic
Proactive
Collaborative,
Reactive
Shared decision-making
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 Greater interface with
with education
employment
Care provision
Interdisciplinary
Multidisciplinary
# of patients
Fewer
Greater
Think About
• Are you familiar with the ACP?AAP/AAFP/Consensus
Statement?
• How do you teach children and youth about their wellness
baseline?
• What 3 essential skills you can teach in the office
encounter?
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
Survey of Pediatric Practices on
Transition Policies for YSHCN
• A pilot survey based on the policy recommendations
of the consensus statement transition statement
was completed in 2005 by 100% of 21 practices
(146 physicians and 36 nurse practitioners) in
Central Pennsylvania.
• The practices had volunteered to participate in
developing a comprehensive family centered
model of care.
Results of Pediatric Practice Survey
• 38% had a stated policy in their practice for when a
YSHCN should transfer to an adult physician
• 0% had policy posted for families to see
• 66% had identified adult practices for referral.
• 19% had a policy to discuss legal issues for
adulthood before age 18.
• 33% had identified a transition coordinator in the office
• 29% had care plans for YSHCN supporting
transition process
Source: White PAS 2006
Results of Pediatric Practice Survey
• 4% (one practice) used an individualized medical
transition plan
• 29% had a plan - transportable medical record
• 62% rated their practice as not having a transition
process but were interested in developing one
• 52% wanted assistance in developing
forms/procedures
• 71% wanted assistance in coding for transition.
Source: White PAS 2006
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
1. 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 Care
2. Identify core knowledge and skills
• Encounter checklists
• Outcome lists
• Teaching tools
Core Knowledge & Skills: POLICY
•
Identified staff person coordinates transition activities
•
Office forms are developed to support transition
processes
CPT coding is used to maximize reimbursement for
transition services
•
•
•
•
Legal health care decision making is discussed prior to
youth turning 18
Prior to age 18, youth sign assent forms for treatments,
whenever possible
Written transition policy states expected age youth
should no longer see a pediatric HCP and /or
when youth expected to see HCP alone
Core Knowledge & Skills:
MEDICAL HOME
•
Practice provides care coordination for youth with
complex conditions
•
Practice creates an individualized health transition plan
before age 14
•
Practice refers youth to specific primary care
physicians
•
Practice provides support and confers with adult
providers post transfer
•
Practice actively recruits adult primary care /specialty
providers for referral
Core Knowledge & Skills:
FAMILY & YOUTH
•
Practice discusses transition after diagnosis, and
planning with families/youth begins early (ped practice)
or when youth are transferred to the practice
(adult practice)
•
Practice provides educational packet or handouts on
expectations and information about transition
•
Youth participate in shared care management and self
care (call for appt/ Rx refills)
•
Practice assists families/youth to develop an
emergency plan (health crisis and weather or
other environmental disasters)
Core Knowledge & Skills:
FAMILY & YOUTH
•
Practice assists with planning for school and/or work
accommodations
•
Practice assists with medical documentation for
program eligibility (SSI, VR, College)
•
Practice refers family/youth to resources that support
skill-building: mentoring, camps, recreation, activities of
daily living, volunteer/ paid work experiences
•
Practice invites youth to be QI partner
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
6 Critical First Steps
to 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 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
• Expecting, anticipating and planning
• Experiences and exposures
• Skills: practice, practice, practice
• Collaboration with schools (add health skills to IEP)
and community resources
Pediatrics 2002:110 (suppl) 1304-1306
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
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
5. Apply preventive screening guidelines
• Stay healthy
• Prevent secondary disabilities
• Catch problems early
Pediatrics 2002:110 (suppl) 1304-1306
Core Knowledge & Skills: SCREENING
•
Exams include routine screening for risk taking and
prevention of secondary disabilities
•
Practice teaches youth lifelong preventive care, how to
identify health baseline and report problems early;
youth know wellness routines, diet/exercise, etc.
Screen for All Health Needs
•
•
•
•
•
•
•
Nutrition (Stamina)
Exercise
Sexuality Issues
Mental Health
Routine (Immunizations, Blood-work, Vision, etc.)
Secondary Conditions/Disabilities
Accelerated Aging issues
6 Critical First Steps
to Ensuring Successful Transitioning
To Adult-Oriented Health Care
6. Ensure affordable, continuous health insurance
coverage
• Payment for services
• Learn responsible use of resources
Pediatrics 2002:110 (suppl) 1304-1306
Core Knowledge & Skills:
HEALTH CARE INSURANCE
•
Practice is knowledgeable about state mandated and
other insurance benefits for youth after age 18
•
Practice provides medical documentation when needed
to maintain benefits
Transition & ……Insurance
NO HEALTH INSURANCE
• 40% college graduates (first year after grad)
• 1/2
of HS grads who don’t go to college
• 40% age 19–29, uninsured during the year
•
2x
rate for adults ages 30-64
SOURCE: Commonwealth Fund 2003
Extended Coverage
– Family Plan
• Adult Disabled Dependent Care
Incapable of self-sustaining employment by reason
of mental or physical handicap, as certified by
the child's physician on a form provided by
the insurer, hospital or medical service corporation
or health care center
• Adult, childless continued on Family Plan
Increasing age limit to 25-30
CO, CT, DE, ID, IN, IL, ME, MD, MA, MI, MT, NH,
NJ, NM, OR, PA, RI, SD, TX, VT, VA, WA, WV
Transition to Adulthood
Objectives
• List the key elements of the national academies’
(AMA, AAFP, ABIM) perspective on
adolescence and transition to adult healthcare
• Define the role of physicians, families, youth and
other care providers/coordinators in the
transition of youth from pediatric to adult medical
care.
• Define appropriate use of transition tools from
the HRTW website and other national resources.
Youth With Disabilities:
Stated Needs for Success in Adulthood
PRIORITIES:
• Career development (develop skills for a job and
how to find out about jobs they would enjoy)
• Independent living skills
• Finding quality medical care (paying for it; USA)
• Legal rights
• Protect themselves from crime (USA)
• Obtain financing for school (USA)
SOURCE: Point of Departure, a PACER Center publication Fall, 1996
Youth With Disabilities:
Stated Needs for Success in Adulthood
Main concerns for health:
• What to do in an emergency,
• Learning to stay healthy*
• 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
*SOURCE: National Youth Leadership Network Survey-2001
Factors Associated With Resilience
for Youth With Disabilities:
Which is most important?
• Self-perception as not “handicapped”
• Involvement with household chores
• Having a network of friends
• Having non-disabled and disabled friends
• Family and peer support
• Parental support w/out over protectiveness
Source: Weiner, 1992
Health & Wellness:
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
EXPECTATIONS:
• What do you want to do when you are older?
• Next year?
• Five years?
TEACH:
• What can you tell me about your medical issues?
• Do they affect you from doing what you want?
OPINION:
• What do you think of the…?
• Be open and honest.. listen and be “askable”…
• Involve in decision making (assent to consent,
give them a sense of competence)
Levels of Support
Levels of Support
Family Role
Young Person
Independent
Coach
Can do or
can direct others
Interdependent
Consultant
Coordinates
Dependent
Can do or
can direct others
May need support
in some areas
Manages
Coordinates
Needs support
full-time -all areas
expand
circle of support
expand circle of support
ASSENT to CONSENT
Eastern Maine Medical Center
• A parent or guardian is generally required to sign for
a patient under the age of 18. Patients aged 14-17
should also sign. See IDD 20.041.
• If an adult is unable to make or communicate
medical decisions, then the following may sign in
the priority given: agent under healthcare power of
attorney, guardian, spouse, domestic partner,
next-of-kin. See IDD 20.060 Indicate capacity of
representative.
Handout: Portable Medical Summary
Carry in your wallet
Good Days
• Cheat Sheet: Use as a reference tool
• Accurate medical history
• Correct contact #s
• Document disability
Health Crisis
• Expedite EMS transport & ER/ED care
• Paper talks when you can not
Preparing for the
15 minute Doctor Visit
Know Your Health & Wellness Baseline
• How does your body feel on a good day?
• Prepare questions at each visit
• Give brief health status & overview of needs.
• Know emergency plan when health changes.
• What is your typical body temperature?
• Respiration, heart rate and blood pressure.
Do you have “ICE” in your
cell phone contact list?
To Program:
• Create new contact
• Space or Underscore __
• (this bumps listing to the top)
• Type “ICE – 01”
• ADD Name of Person
• include all ph #s
• Note your allergies
• You can have up to 3 ICE contacts (per EMS)
Skills
for
Children & Youth
What to do
By Age 10
Before Age 18
• CHORES: Are you doing chores?
• ATTENDANCE: How are you doing in school?
• PLANNING: How are you doing with your plan?
• PARTICIPATION: What do you do when you
are not in school?
• CAREER: What kind of work do you want?
• STAY WELL: Are you taking care of your health?
Skills
Before 10
• Carry and present insurance card
X
• Know wellness baseline, Dx, Meds
X
• Make own Doctor appts
X
• Call in Rx refills
• Learning Choice
Before 18
X
X
X
• Decision making (assent to consent)
X
• Prepare for Doc visit: 5 Qs
X
X
• Present Co-pay
X
X
• Assess: Insurance, SSI, VR
X
• Gather disability documentation
X
Transition & ……Family
Prepare for Changing Roles:
Families & Youth
• Temporary spokesperson on behalf of minor child
• Until age 18, or declared by the court
• 2 voices to be heard: families and CY
• Opportunities: TRY, fail, relearn, try again
• Attain Skills = Practice
Survey of Family to Family
Health Information Centers
• Key Points
• Identified fragmentation of system-100%
• Biggest need: linkages to community
resources
• Resource for healthcare facilities and
providers
Changing Roles
• Checklist-tool
• Assess skills
• Identify supports
• Guardianship/Conservatorship
Transition and the Youth with
Development Disabilities
• Level of participation
• Supports
• Health advocate
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.
• Start early!!!!!
• Reinforce life span skills - Prepare for the marathon
• Assist youth to learn how to extend wellness, practice
skills and learn
• Reality check: Have all of us done the prep work for the
send off before the hand off?
Transition is complete when:
• Youth has health care that is paid for
• Care that is developmentally appropriate
• Able to self manage or support is identified
• Able to make health care decisions or support is in place
• Youth Leaders are partners in policy review and
development
Effects of a well planned transition:
• Improved disease control
• Vocational readiness
• Quality life
What would
you do,
if you
thought
you could
not fail?
Resources
HEALTHY & READY TO WORK www.hrtw.org
• 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
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
Resources
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
Resources
• 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
GOT DATA!
www.cshcndata.org
www.familyvoices.org
www11.georgetown.edu/research/gucchd/nccc
www.hdwg.org/catalyst/index.php
State-at-a-Glance
Chartbook on
Coverage and Financing
of Care for Children and
Youth with Special Needs
Medicalhomeinfo.org
http://www.championsinc.org