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Ensuring Successful Partnerships
Parent – Child - Youth - Physician
Patti Hackett, MEd
Co-Director, HRTW Center
Bangor, ME
Hawaii
November 14, 2006
www.hrtw.org
www.hrtw.org
www.hrtw.org
HRSA/MCHB Block Grant: NPM #6
Transition to Adulthood
Youth with special health care needs
will receive the services necessary to
make transitions to all aspects of
adult life, including adult health care,
work, and independence. (2002)
SOURCE: BLOCK GRANT GUIDANCE
New Performance Measures See p.43
www.hrtw.org
ftp://ftp.hrsa.gov/mchb/blockgrant/bgguideforms.pdf
Growing Up Ready to LIVE!
Health & Wellness + Humor
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
Take Home Points
1. New World: New Lingo
2. Finding the Allies
3. Essential Skills
4. Whose Life is it?
5. Survive & Thrive!
www.hrtw.org
New World: New Lingo
1. Moving Up from Powerless
2. Transferring Skills
Doc/RNparent family & friends
Family  child/youth
Youth  friends
3. Strengthening Families
- Support (Family to Family)
- Mentor (Life Coach)
- Counseling (Getting thru the hard patch)
- Financial Planning
www.hrtw.org
New World: New Lingo
1. Co-Dependence to Interdependent
- At diagnosis: start teaching/learning
- How the system works
(DOs, DON’Ts, and BEST TIMES)
In-patient: Shift Change/30 min windows
Outpatient: Office Practice hours
Routine & Urgent
Rx refills (Tues-Thurs)
www.hrtw.org
New World: New Lingo
ESSENTIAL SKILLS

Words & Lingo

Acknowledge Today (Reality)

Eye on the Future (Hope)
Live your life the way you would have,
just know you will have more equipment
www.hrtw.org
Preparing for the 15 minute Doctor Visit
Know Your Health & Wellness Baseline
• How does your body feel on a good day?
• What is your typical body temperature,
respiration count, plus and elimination
habits?
www.hrtw.org
Create Portable Medical Summary
- Use as a reference tool
- Accurate medical history & contact #s
- Carry in your wallet.
- Use for disability documentation
www.hrtw.org
Survive & Thrive!
- Encourage questions at each visit.
- TOOL: 5 Q
- Assent: co-sign treatment plans.
- Youth calls for appointments and Rx refills
Concise Medical Reporting
- Give brief health status and overview of needs.
- Know the emergency plan when health changes.
www.hrtw.org
Transition & ……Family & Youth
www.hrtw.org
Living Well with a Disability
Youth
Family
Friends
Community
Participation
Personal & Civic
Responsibility
Self
Sufficiency
Employment
www.hrtw.org
Peers
School
Attendance
Self
Advocacy
Independent
Living
Mentors/
Role Models
Other
“Encouragers”
Career
Development
Self-Care
Access to Appropriate use
of Health Care
Wellness:
Physical, Social,
Emotional
Shared Decision Making
Provider
Parent/Family
Young Person
Major
responsibility
Provides care
Receives care
Support
to parent
family
child/youth
Manages
Participates
Consultant
Supervisor
Manager
Resource
Consultant
Supervisor
www.hrtw.org
Informed Decision Makers
FERPA
Family Education Rights & Privacy Act
HIPAA
Health Insurance Portability and
Accountability Act
1. Privacy  Records
2. Consent  Signature (signature stamp)
- Assent to Consent
- Varying levels of support
- Stand-by (health surrogate)
- Guardianship (limited to full)
www.hrtw.org
Transition &….Medical Home
www.hrtw.org
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 worlds
www.hrtw.org
…….that often do not communicate….
Issue
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
Management
Prescriptive
Collaborative
Non-adherence
> Assistance
< Tolerance
Procedural Pain
Lower threshold
of active input
Higher threshold
for active input
Tolerance of immaturity
Higher
Lower
Coordination with federal Greater interface
with education
systems
Greater interface with
employment
Care provision
Interdisciplinary
Multidisciplinary
www.hrtw.org
# of patients
Fewer
Greater
Transition to Adulthood
www.hrtw.org
Celebrate the Paperwork!
It Means You are Alive!
- Reduce stress (one thing different)
- Better at adapting
- Increase problem solving skills
- Learn how to negotiate
www.hrtw.org
It Means You are Alive!
Create routine – make it a habit
-LIVE: Brush teeth, bathroom, wellness
-PLAN: Emergency/ practice
-INFO: In the car, purse, trusted others
Supplies: 2 /Keep in car, other house
Basket by the door: important papers
www.hrtw.org
Celebrate the Paperwork!
It Means You are Alive!
Partners in Paying
- INSURANCE CARD: Carry & Present
- Fill in insurance forms ahead of visit
- Learn about coverage and coding
- Child/Youth give the co-pay
- Age 10 – call for appt & Rx refills
www.hrtw.org
Transition & ……Insurance
NO HEALTH INSURANCE
40% college graduates
1/2
(first year after grad)
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
www.hrtw.org
PUBLIC: Medicaid & SSI Connection
<18
Gather medical & other evidence
18 Redetermination
18-22
(based on adult standards)
Adult Student
Section 432 of the Social Security Protection Act
extended the student earned income exclusion
(SEIE) to any individual under the age of 22
regularly attending school, college, or training
designed to prepare him/her for a paying job, this
includes students who have IEPs.
https://s044a90.ssa.gov/apps10/poms.nsf/lnx/0500501020
www.hrtw.org
PRIVATE: Adult Disabled Dependent
< 18
- Check Policy -- Family Plan
40+ states have insurance law
Requires documentation
HAWAII §431:10D-212 Spouses and
dependents of insured individuals
•
Under twenty-three years of age who is attending an
educational institution and relying upon the insured
individual for financial support; or
•
(iii) Regardless of age who is incapable of self-sustaining
employment by reason of mental retardation or physical
handicap and is chiefly dependent upon the insured
individual for support and maintenance.
www.hrtw.org
It Means You are Alive!
Survive & Thrive
- Responsible: Role in the family
- Responsible: Medications
- Responsible: Equipment
www.hrtw.org
Celebrate the Paperwork!
It Means You are Alive!
- Reduce stress (one thing different)
- Better at adapting
- Increase problem solving skills
- Learn how to negotiate
www.hrtw.org
It Means You are Alive!
Create routine – make it a habit
-LIVE: Brush teeth, bathroom, wellness
-PLAN: Emergency/ practice
-INFO: In the car, purse, trusted others
Supplies: 2 /Keep in car, other house
Basket by the door: important papers
www.hrtw.org
Celebrate the Paperwork!
It Means You are Alive!
Partners in Paying
- INSURANCE CARD: Carry & Present
- Fill in insurance forms ahead of visit
- Learn about coverage and coding
- Child/Youth give the co-pay
- Age 10 – call for appt & Rx refills
www.hrtw.org
Transition & ……Insurance
NO HEALTH INSURANCE
40% college graduates
1/2
(first year after grad)
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
www.hrtw.org
PUBLIC: Medicaid & SSI Connection
<18
Gather medical & other evidence
18 Redetermination
18-22
(based on adult standards)
Adult Student
Section 432 of the Social Security Protection Act
extended the student earned income exclusion
(SEIE) to any individual under the age of 22
regularly attending school, college, or training
designed to prepare him/her for a paying job, this
includes students who have IEPs.
https://s044a90.ssa.gov/apps10/poms.nsf/lnx/0500501020
www.hrtw.org
PRIVATE: Adult Disabled Dependent
< 18
- Check Policy -- Family Plan
40+ states have insurance law
Requires documentation
HAWAII §431:10D-212 Spouses and
dependents of insured individuals
•
Under twenty-three years of age who is attending an
educational institution and relying upon the insured
individual for financial support; or
•
(iii) Regardless of age who is incapable of self-sustaining
employment by reason of mental retardation or physical
handicap and is chiefly dependent upon the insured
individual for support and maintenance.
www.hrtw.org
It Means You are Alive!
Survive & Thrive
- Responsible: Role in the family
- Responsible: Medications
- Responsible: Equipment
www.hrtw.org
What is a successful transition?
Youth are able to
• Access health services independently
• Discuss their health condition
• Communicate their health care needs
• Self-manage their care
or support is available
www.hrtw.org
What is a successful transition?
Youth are able to
(con’t.)
• Feel comfortable seeing
the doctor alone
• Make health care decisions
or support is in place
Young adults
• Have insurance
• Have health care that is developmentally
appropriate – primary, specialty, therapies, AT
www.hrtw.org
What’s Health Got to Do with
Transition? EVERYTHING!
• Quality of Life & Living
• Relationships
• School / Employment
• Housing
• Community Living
• Recreation
www.hrtw.org
What
would
you do,
if you
thought
you could
not fail?
www.hrtw.org
www.hrtw.org
www.hrtw.org
Patti Hackett, MEd
Co-Director, HRTW Center
Bangor, ME
[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 Center on Family and Professional
Partnerships
www.hrtw.org
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 - 03
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.
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