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
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Creating Partnerships from Apples and Oranges 2006 National Early Hearing Detection and Intervention Conference, Washington, DC Beth S. Benedict, Ph.D.,
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Creating Partnerships from Apples and Oranges
2006 National Early Hearing Detection and Intervention Conference, Washington, DC
Beth S. Benedict, Ph.D., Gallaudet UniversityBarbara Raimondo, J.D.,Parent/Child AdvocateMarilyn Sass-Lehrer, Ph.D. Gallaudet University
Washington, DC
Faculty Disclosure Information
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
1. Understand EHDI Goals for Collaboration2. Appreciate Expertise of Hard of Hearing and Deaf
Adults 3. Be Aware of Potential Barriers to Full Participation4. Identify Strategies to Support Partnerships
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
As a teacher educator As a researcher As a professional participating in
Professional Organizations Conferences Meetings and other Activities
As a collaborator Teaching, Research, Professional
Activities
Beth’s View: Still a Long Way to Go
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
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 .
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 . . .
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 . . . 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.)
. . . 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)
. . . 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)
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: