Transcript The Shaping of Systems: It Takes A Village

The Shaping of
Systems: It Takes A
Village
Janet DesGeorges
Vickie Thomson
We are…
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Janet DesGeorges
Executive Director, Colorado Families
for Hands & Voices; Outreach Director,
Hands & Voices, Inc.
Vickie Thomson
Hands & Voices Board Member
(Colorado)
All Things Guam….Saipan…Hawaii
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Our Trip -
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The training model of parent and professional
perspective on any topic (from genetics to potty training to funding)
Challenges: Rural (bodies of water); Parents need
for training and support (start up committee/dirt
roads); ‘systems’ in place – and yet…
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Our counterparts in Hawaii….
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What we didn’t know we were
getting into….
“There are many people who think they
want to be matadors, only to find
themselves in the ring with 2000
pounds of bull bearing down on them,
and then discover that what they
really wanted was to wear tight pants
and hear the crowd roar.” – T. Pearce
What to do when Resources are
limited… (is this what your ‘island’ looks like?)
Lack of
specialized
service
providers
No
Phones/computers
in many homes
Rural
access
Limited
Funds
Low Incidence
Population
(hearing loss)
EHDI Program Goals
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1: Screen > 95% of the birth population by
one month of age
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Refer < than 4% at hospital discharge
2: Diagnose by 3 months of age
3: Enroll in early intervention by 6 months of
age
4: States will have coordinated systems of
care
Role of Public Health in EHDI Programs
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Using science as a basis for decisionmaking and action;
Expanding the quest for social equity;
Performing effectively as a service
agency;
Making efforts outcome-oriented; and
Being accountable
* CDC Operating Principles for Program Evaluation
1-1-3-6 Rule (changing the
game)
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Screening by one month
Identification by three months
Entrance to Early Intervention by 6 months
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SYSTEMETIZING Parent support:
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EHDI Programs will initiate ‘parent support’ systems by one/three
months of age
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Examples: Colorado CO-Hear System, H&V GBYS Programs;
Parent Support Orgs (AG Bell, H&V, ASDC); CO EHDI
Guidelines;
Your Job 
Creating a sustainable, consistent system
that also allows for the unique considerations
for each family
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Does your system work for every family in your state
regardless of their location, birth site, income,
hierarchy of need?
Does your system ‘flex’ so that each family can flow
through your system and feel like it worked for them?
Will this system have worked for families when they
reflect back in ten years?
The Importance of
Parent Involvement
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Research indicates that the single-most important
factor in predicting successful outcomes of newly
identified deaf/hh babies in early intervention is the
active participation of their parents. (Yoshinaga-Itano,
Coulter & Thomson, 2000)
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Benefits of Parent involvement include higher reading
scores, higher grades on homework, improved
attitudes towards school, improved relationships
between parents and teachers. (Donahoo, 2001)
Copyright © 2010 Hands & Voices
How do trained, motivated
parents get involved?
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Parent led, centered, involved, directed…
For their own child
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Parent-to-Parent…
For each other
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Parent participation through advocacy…
In the System
Copyright © 2008 Hands & Voices
The Shaping of a System
through Parent Involvement
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Representation: parent perspectives in the system on
advisory boards, committees, forums, taskforces,
projects, etc…
Collaboration: partnering with professionals in medical,
educational, and government agencies
Advocacy: quality improvement initiatives; doing what
those inside the system can’t
Legislative: giving “voice” to constituency of minors;
putting a “face” on the issues
Accountability: Investing the ‘end-user’ in the
development of the product & on-going evaluation
Copyright © 2008 Hands & Voices
Debunking the Myths
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Parents from Hell: The “angry” parent
Relegated roles i.e., “the cookie mom”
Parents can only represent their own
experience
Parents don’t understand ‘systems’
Parents won’t be able to step out of their
own ‘bias’
If parents are paid by the ‘system’,
they can’t represent true parent
perspective
copyright (c) Hands & Voices 2010
The History of Hands & Voices
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Tired of the war…
A group of parents/professional in CO in 1992
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We are a parent-driven, parent/professional collaborative group
 We get meaningfully involved in early hearing detection and
intervention programs, educational advocacy, and other
systems to improve them from an end-user perspective. –
through highly trained, knowledgeable parents
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Gradually growing into a national presence… 37 state chapters/start
ups
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Autonomy at each state level while maintaining a vision for a shared
enterprise
copyright (c) Hands & Voices 2010
Who can H&V parent
Leaders represent?
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Their own family experience
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Looks beyond their own personal experiences to
represent other family stories/experiences
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Networks with other families; utilizes surveys of
parent experience; often linked with parent
organizations
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Other families they have met, read about,
understand, know, have gotten input from
copyright (c) Hands & Voices 2010
Creating a SYSTEM of Formalized
Parent Involvement
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Mandating parent involvement through position
papers/state guidelines/policies
and practices
Utilizing organizations
Paid parent positions provide meaningful
contribution
Professional trainings accessible to Parent
Leaders
Parents who train other Parents
 “Not about us without us”
copyright (c) Hands & Voices 2010
Utilizing Parents’
Own Skill Sets
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Leadership or visionary Level:
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Managerial level:
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(vision, risk, influence, value)
(communicate, coordinate, translate)
Task Level:
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(professional, technical, clerical, support)
Citation: 2002 CO nonprofit Leadership and Management Program
copyright (c) Hands & Voices 2010
Using & Abusing Hands &
Voices
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Objective 1.2: Enhance the role of the parent coordinator in the screening,
rescreening, and diagnostic follow-up systems.
ACTIVITY
1. Develop a parent ‘road map’ with local community resources in English and
Spanish.
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Janet DesGeorges,Parent Guides2/09
2. Update the website for CDPHE, Hands & Voices for parents
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Janet DesGeorges, Vickie Thomson
3. Develop parent inserts for the Colorado Infant Hearing Brochure to encourage
parent support at the time of screening
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Janet DesGeorges,Vickie Thomson, Parent Guides4/09
4. Create family stories for training and education about the medical home concepts.
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Janet DesGeorgesParent Guides10/08
More Activities….
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Update the Parent Funding Toolkit
Update the Resource Guide bi-annually
Revise and implement the parent leadership section of the CIHAC Guidelines.
Ensure Parent Guides are participating members of systems building committees at state and local levels.
Publish parent perspective articles in local organization newsletters.
Provide parent perspective trainings.
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And even more….
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GBYS Welcome Letter and gift –Book of Choice
EVENT PLANNING: Regional workshop for Parents:
Denver metro, western Slope, southeast, Northeast,
Unilateral, Spanish, Deaf (Target: at least two per region 09/10) - ONGOING
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Regional meetings themes: (each region: Early ID Picnics; Social Events, educational workshops “Front Range” event Pikes Peak/Denver – full day Saturday event
Picnics for Newly Identified Families – twice a year
Picnic for Spanish Speaking Families
Collaboration With Marion Downs Center Family Picnic Project Summer and Holiday
Social activities for kids/siblings at parent events
DENVER: Picnic/xmas party with MDHC;
Northeast:
Western Slope:
Spanish: JUly, 09 with families via: CHIP ZOO DAY (attended 150 people )DONE, MDHC, Mom’s NighInn/Dad’s Night Out and/or single event for Dads and Mom’s in Spanish NOVEMBER 11 th – Maria has been
requested to speak at an Aurora publich school program.
Pikes Peak:
EARLY YEARS collaboration with CHIP (all coordinators)
And even more… (ok, that’s enough…)
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www.cohandsandvoices.org
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Parent roadmap
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Loss & Found
It Takes a Village…
“I am a part of all that I have met.”
-Alfred Tennyson
We don't accomplish anything in this world alone ...
and whatever happens is the result of the whole
tapestry of one's life and all the weavings of
individual threads from one to another that
creates something.
-Sandra Day O-Connor
…at the end of the day…
…The families of Colorado thank you for your hard work!!