Transcript Slide 1

Creating Partnerships from
Apples and Oranges
2006 National Early Hearing Detection and
Intervention Conference, Washington, DC
Beth S. Benedict, Ph.D., Gallaudet University
Barbara Raimondo, J.D.,Parent/Child Advocate
Marilyn Sass-Lehrer, Ph.D. Gallaudet University
Washington, DC
Faculty Disclosure Information
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In the past 12 months, we have not had a
significant financial interest or other
relationship with the manufacturer(s) of
the product(s) or provider(s) of the
service(s) that will be discussed in our
presentation.
This presentation will (not) include
discussion of pharmaceuticals or devices
that have not been approved by the FDA
or if you will be discussing unapproved or
“off-label” uses of pharmaceuticals or
devices.
Learner Outcomes
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Understand EHDI Goals for Collaboration
Appreciate Expertise of Hard of Hearing
and Deaf Adults
Be Aware of Potential Barriers to Full
Participation
Identify Strategies to Support
Partnerships
About Us and Why We Think This is
Important
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Introductions
Barbara’s experience
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Marilyn’s experience
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Parent/Parent Advocate
Teacher Educator/Researcher/ Advocate
Beth’s experience
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Consumer/Collaborator/Researcher/
Advocate
Barbara’s Perspective
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Adaptation to child who is different than
expected
Sense of diversity of people with hearing
loss - Seeing child as an individual
Knowing life experiences of deaf
individuals – How that helps parents
Learning to communicate
Deaf/HH individuals are part of the
“village”
Enrichment of own lives
Marilyn’s Experiences
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As a teacher educator
As a researcher
As a professional participating in
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Professional Organizations
Conferences
Meetings and other Activities
As a collaborator
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Teaching, Research, Professional
Activities
Beth’s View: Still a Long Way to Go
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Role Model
Collaboration with hearing parents
of a deaf child
Misconceptions about deaf people
Deaf people as human beings
Experiences, Rights, Survival,
Struggles and Successes
Basic Human Rights
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States should involve organizations of persons with
disabilities in all decision-making relating to plans and
programmes concerning persons with disabilities or
affecting their economic and social status .
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United Nations Standard Rules on the Equalization
of Opportunities for Persons with Disabilities, Rule
14
States should recognize the right of the organizations
of persons with disabilities to represent persons with
disabilities at national, regional and local levels. States
should also recognize the advisory role of organizations
of persons with disabilities in decision-making on
disability matters . . .
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United Nations Standard Rules on the Equalization
of Opportunities for Persons with Disabilities, Rule
18
Rationale for Deaf/HH Involvement
Children's Health Act of 2000
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. . . Early intervention includes referral to . . .
community, consumer, and parent-based agencies and
organization. . . .
In carrying out programs under this section, the
Administrator of the Health Resources and Services
Administration, the Director of the Centers for Disease
Control and Prevention, and the Director of the
National Institutes of Health shall collaborate and
consult with . . . consumer groups of and that serve
individuals who are deaf and hard-of-hearing and their
families . . . persons who are deaf and hard-of-hearing
and their families . . . other qualified professional
personnel who are proficient in deaf or hard-of-hearing
children's language and who possess the specialized
knowledge, skills, and attributes needed to serve deaf
and hard-of-hearing newborns, infants, toddlers,
children, and their families . . .
Children’s Health Act (cont.)
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. . . The Administrator of the Health The
Administrator of the Health Resources and
Services Administration, the Director of the
Centers for Disease Control and Prevention, and
the Director of the National Institutes of Health
shall coordinate and collaborate on
recommendations for policy development at the
Federal and State levels and with the private
sector, including consumer . . . and education
professional-based organizations . . .
. . . Referral options should include linkage to . . .
national and local consumer, self-help, parent,
and education organizations . . .
Joint Committee on Infant Hearing
(2000)
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. . . To achieve informed decision-making, families
should have access to professional, educational,
and consumer organizations; and they should
have opportunities to interact with adults and
children who are hard of hearing and deaf . . .
. . . Early interventionists should ensure access to
peer and language models. Peer models might
include families with normal hearing children as
well as children or adults who are hard of hearing
and deaf as appropriate to the needs of the infant
with hearing loss . . .
. . . [Professional education programs in]
universities should also introduce training in . . .
deaf culture.
National Consensus Conference
(2005)
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Parents must have opportunities to meet and
interact with children and adults
who are
deaf or hard of hearing . . .
There should be support services to assist families
. . . includ[ing] . . . deaf/hard of hearing
community participation.
State Advisory Boards should include
representatives from the deaf and hard of hearing
communities as well as professionals who are
deaf and hard of hearing.
The advocate/coordinator for the family . . .
should provide . . . contact with adults who are
deaf and hard of hearing . . .
What About the Research?
Families who have
regular contact with
deaf adults obtain
significant benefits
including:
– Social Support
– Improved
Communication
– Acceptance and
Understanding
Meadow-Orlans, Mertens &
Sass-Lehrer, 2003;
Watkins, Pittman,& Walden,
1998; Hintermair, 2000
What About the Research?
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English language performance
better with experiences with
Deaf Mentors
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Social-emotional
development supported by
opportunities for interactions
with Deaf adults/children
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Watkins, Pittman, Walden, 1998;
See Calderon & Greenberg, 2003
Children/families in “Shared
Reading Program” more
frequent book sharing
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Delk & Weidekamp, 2001
Yes, but……
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Will deaf children
today be different
from the deaf children
in the past?
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Early identification
and technology has
changed the
outcomes for deaf
children
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Many programs are
unable to demonstrate
outcomes that
indicate that children
are performing
similarly to children
without hearing loss
Programs that have
excellent outcomes
still show gaps in
language (Stredler
Brown, 2005)
Yes, but….
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Are Deaf adults today
different from today’s
deaf children?
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Lack of early
identification and
intervention
Lack of access
today’s technology
(visual/auditory)
Lack of opportunities
to participate in all
aspects of life (ADA)
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Diversity among deaf
people
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Common pursuit of
full access to
communication
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Experiences, levels of
hearing loss, outlooks
on life, etc.
Audition, vision
Difference – how this
feels
Strategies to obtain
information
Yes, but….
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Will deaf children be
more like hearing
children than “deaf”
children?
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Deaf children may
actually be more like
today’s “hard of
hearing” children
Hard of Hearing
children and/or those
with unilateral hearing
loss are not
performing as well as
hearing children
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Bess, 2004; Stredler
Brown, 2005
Experiences and Lessons Learned
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Participation in Professional Activities
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Attendance vs Participation and Involvement
Access to Communication
- Requesting Interpreters – Who are they for?
- FM System – Working? Everyone Uses?
- Conversation Control – Use of Visuals
Burden of representing all Deaf/HH people
- One versus Several
Strategies for Involvement and
Leadership
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Finding skilled/experienced Deaf/HH
people
Ensuring Communication Access
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Representing the Diversity of the
Community
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No interpreters? What to Do?
Hearing level, communication approaches,
race, ethnicity, etc.
Encouraging/supporting Deaf/HH
Leadership
Examples of How to Involve Deaf/HH
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State Advisory Boards and Councils
Professional Committees and Policy
Boards
Conference Planning and Plenary
Presenters
Early Intervention Professionals
Parent to Parent Programs
Pay Deaf/HH Mentors
Professional Development and Training for
Deaf and Hearing
Other
Checking In….Monitoring the
Effectiveness
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How did the meeting go?
What can we do to ensure full and
meaningful participation by everyone?
What can we do to ensure that everyone
has full access to all the information?
How do we demonstrate our value for
Deaf/HH and Hearing partnerships?
How can we ensure the continued
involvement of the Deaf/HH communities?
Other?
Tell Us Your Stories