How Parent Advocacy Groups Can Support EHDI Programs
K. Todd Houston, Ph.D.Executive Director/CEO
Alexander Graham Bell Association for the Deaf & Hard of Hearing
Washington, DC
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Faculty Disclosure Information
In the past 12 months, I have not had a significant financial interest or other relationship with the manufacture(s) of the product(s) or provider(s) of the service(s) that will be discussed in my 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.
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Parent Outreach
Information Connection Skills Guidance & Support
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Parent Outreach
Information Causes of deafness Available services Communication methodologies Hearing technology Associations/Organizations/Support Outcomes – what to expect for the future
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Parent Outreach
Connection A need to know others going through the
same experiences Eliminate a sense of isolation
Parent to parent Local/Regional National Mentoring/coaching relationships can form
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Parent Outreach
Skills General parenting Primary language facilitators/communication
development Realistic expectations
Management of hearing technology (hearing aids, cochlear implants, assistive listening devices)
“Case manager” (IFSP,IEP) – coordination of intervention, services & education
Behavior management
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Parent Outreach
Guidance & Support Access to current information re: best
practices, standards Training and education Support networks in the good times and the
bad, especially transition periods Consistent information sources Involvement in advocacy – state & federal
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AG Bell: A System of Support
Parent Section Parent-Connect – linking experienced parents with
parents of newly identified children Family-Link – Convention Listserv, discussion groups
Chapters 30 state chapters
Programs Parent Advocacy Training (PAT) Program Assistance Project (PAP) Children’s Legal Advocacy Program (CLA)
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AG Bell: A System of Resources
Resources www.agbell.org Bookstore – numerous books for parents Volta Voices & The Volta Review Advocacy efforts on behalf of parents Financial Aid & Scholarships State & regional workshops Biennial Convention
2006 Convention – June 23-26, Pittsburgh, PA Cross-sectional collaboration & interaction
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Serving EHDI through AG Bell
AG Bell augments the range of services & information being offered in most EHDI & state early intervention program
Offers connection to experienced families on a local and state levels
Chapters provide advocacy on behalf of EHDI & state early intervention programs (state & national levels)
Through state conferences, opportunities to receive training and/or CEUs on relevant topics related to parent issues and intervention/education
Ongoing source of support & information
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Thank you for listening!
For more information, please contact:
Alexander Graham Bell Association for the Deaf & Hard of Hearing
(866) 202-337-5220
www.agbell.org
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