Transcript Healthy and Ready to Work - Syntiro

Health Care Transition
What’s Health Got to Do with
Transition?
EVERYTHING!
Trish Thomas
Patti Hackett
Tribal Summit for Young American Indian
and Alaska Native Adults
with Disabilities: Owning Your Future
June 1, 2007
www.hrtw.org
Addressing Federal Goals
Amended Legislation for Title V of the
Social Security Act (OBRA 1989):
“Facilitate the development of community-based
systems of services”
Healthy People 2010 Objective 16.23
“Increase the proportion of States and territories that
have service systems for children and youth with
special health care needs (CYSHCN)”
President’s New Freedom Initiative (NFI)
Responsibility given to HRSA for developing and
implementing a plan to reduce barriers to community
services and independent living for CYSHCN and their
familieswww.hrtw.org
The MCHB Mission
The mission of the Maternal and Child Health Bureau
(MCHB) is to provide national leadership, in
partnership with key stakeholders, to
improve the physical and mental health, safety
and well-being of the maternal and child health
(MCH) population which includes all of the
nation’s women, infants, children, adolescents,
and their families, including fathers and children
with special health care needs.
www.hrtw.org
The MCHB Vision/Principles (excerpts)
There is equal access for all to
comprehensive, quality health care provided in
a supportive, culturally competent
environment, which is family-centered and
community-based.
All women and children, especially children with
special health care needs, are linked to a
comprehensive, community-based service
system
through a medical home.
www.hrtw.org
The MCHB Vision/Principles (excerpts)
Family and community participation
and engagement are key to the
development of effective, quality
health systems and services.
www.hrtw.org
Building A Community System:
A Community System?
6What
CoreIsOutcomes
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Graphic: Champions For Progress National Center/EIRI
Strategies for Success: Grants
State Level
- State Implementation D-70/NFI (AZ-Navajo)
- F2F HIC’s (30 states)
- TBI, etc.
National
• National Centers & Cooperative Agreements
• Monitoring and Measuring
- National Surveys for CSHCN
- Performance Measures
• Partnerships
www.hrtw.org
www.familyvoices.org
www.hrtw.org
National Center for
Family & Professional Partnerships
Who We Are ………..
• National Network of Family Leaders
- Expertise in health care policy & practices
- Family Leaders in every state
- Funded family-run F2F HICs, plus volunteers
• Families as Partners
- Promoting partnerships at all levels of care
to ensure family centered care
(individual child to the program and policy level)
www.hrtw.org
National Center for
Family & Professional Partnerships
How We Can Help YOU ………..
•
Information & Resources:
Info for families to help other families
Materials: Website, hard copy materials
• Technical Assistance
- Topical Calls
- eNews
- Onsite Training (state, regional, national)
•
Legislative Action Center
- learn about current issues, updates
and how to participate in policy issues
www.hrtw.org
www11.georgetown.edu/research/gucchd/nccc
www.hrtw.org
National Center
for Cultural Competence (NCCC)
Who We Are ………..
Special emphasis is placed on helping
polices, services and supports to meet the
unique needs of families from diverse
cultural, linguistic, geographic, gender,
religious, and racial backgrounds.
www.hrtw.org
National Center
for Cultural Competence
How we can help You ………..
• Resources, Guides & Tools
- Guide for Advancing Family-Centered and
Culturally and Linguistically Competent Care
- Cultural and Linguistic Competence Policy
Assessment (CLCPA)
• Topical Conference Calls
• Consultant Pool
www.hrtw.org
www.hrtw.org
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
• My son, Glen
• White Privilege
• Prejudice/Discrimination
• Teacher
• Advocate
• Making the system work
•Working around the system
• Urgency
• Welcome feedback
www.hrtw.org
What does
the Data
tell us?
Not everything that can
be counted counts,
and not everything that
counts can be counted.
Albert Einstein
Youth are Talking: Are we listening?
Health Concerns
Survey - 1300 YOUTH with SHCN / disabilities
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
www.hrtw.org
*SOURCE: National Youth Leadership Network
Survey-2001,
300 youth leaders disabilities
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 canwww.hrtw.org
have up to 3 ICE contacts (per EMS)
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.”
Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374
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
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
Preparing for the 15 minute Doctor Visit
Know Your Health & Wellness Baseline
•What is your typical body temperature,
respiration, heart rate and blood
pressure?
• How does your body feel on a good day?
• Prepare 5 questions at each visit
• Brief health status/overview of needs.
• Emergency plan when health changes.
www.hrtw.org
Health & …. Life-Span
Secondary Disabilities
- Prevention/Monitor
- Mental Health, High Risk Behaviors
Aging & Deterioration
- Info long-term effects
(wear & tear; Rx, health cx)
- New disability issues & adjustments
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
Celebrate the Paperwork!
It Means You are Alive!
Partners in Getting Services
- INSURANCE CARD: Carry & Present
- Age 10 – call for appt & Rx refills
- Update medical summary
- Keep records (medical and phone log)
- Get to know the rules
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
(post your practice
transition policies, help families to understand their
changing role)
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
www.hrtw.org
hand
off?
Trish Thomas
Partnership Coordinator
Center for Parent/Professional Partnerships for CYSCHN
Family Voices
[email protected]
HRTW Consultant- Cultural Competency
Albuquerque, NM
[email protected]
Patti Hackett, MEd
Co-Director, HRTW Center
Bangor, ME
[email protected]
www.hrtw.org
What
would
you do,
if you
thought
you could
not fail?
www.hrtw.org
Got Data?
HRSA/MCHB
Title V Information Systems (TVIS)
www.mchb.hrsa.gov/data/
www.hrtw.org
Got Data?
Data Resource Center National Survey for CSHCN
www.cshcndata.org
www.hrtw.org
www11.georgetown.edu/research/gucchd/nccc
www.hrtw.org
www.familyvoices.org
www.hrtw.org
www.hrtw.org
www.hrtw.org
www.hdwg.org/catalyst/index.php
State-at-a-Glance
Chartbook on
Coverage and Financing
of Care for Children and
Youth with Special Needs
www.hrtw.org
Medicalhomeinfo.org
www.hrtw.org