How Parent Advocacy Groups Can Support EHDI Programs K. Todd Houston, Ph.D. Executive Director/CEO Alexander Graham Bell Association for the Deaf & Hard.

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DISCLOSURE In the past 12 months, I have not had any significant financial interest or other relationship with the manufacturers of the products or providers.

Presentation transcript:

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

2 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.

3 Parent Outreach Information Connection Skills Guidance & Support

4 Parent Outreach Information Causes of deafness Available services Communication methodologies Hearing technology Associations/Organizations/Support Outcomes – what to expect for the future

5 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

6 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

7 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

8 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) Childrens Legal Advocacy Program (CLA)

9 AG Bell: A System of Resources Resources 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

10 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

11 Thank you for listening! For more information, please contact: Alexander Graham Bell Association for the Deaf & Hard of Hearing (866)