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) Children’s Legal Advocacy Program (CLA)

9

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

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) 202-337-5220

www.agbell.org