How Parent Advocacy Groups Can Support EHDI Programs

Barbara Raimondo, J.D.American Society for Deaf Children

Camp Hill, Pennsylvania

Faculty Disclosure InformationIn the past 12 months, I 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 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.

American Society for Deaf Children

Founded in 1967 by ParentsEducatorsDeaf community

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Mission Statement

The American Society for Deaf Children supports and educates families of deaf and hard of hearing children and advocates for high quality programs and services.

What We OfferThe Endeavor800 942 ASDCBiennial conventions

Florida School for the Deaf and the Blind June 28 – July 2, 2007

Parent training and information

Federal advocacy

Areas of Interest

Newborn hearing screening and intervention

Individuals with Disabilities Education ActNo Child Left Behind ActCaptioningTelephone Relay Systems Emergency PreparednessEverything else

Coalitions and ActivitiesConsortium for Citizens with DisabilitiesCouncil on Education of the DeafDeaf and Hard of Hearing Consumer Advocacy

NetworkIDEA PartnershipNational AgendaNational Association of State Directors of Special

Education - Deaf and Hard of Hearing Students’ Educational Guidelines

National Deaf Education ProjectSensory Disabilities Roundtable

What We Can Do

Participate in conferences and meetings

Write and/or review material you publish

Share information about EHDI activities with our members

Promote member involvement in EHDI activities

What You Can Do

Pay MoneyJoin parent organizations Compensate parents Cover parents’ expenses

What You Can Do (con’t)

Pay AttentionParents have specific issues that they are concerned about, including: – ensuring that parents receive full information– linking parents with parent to parent support– linking identification with intervention– ensuring that quality intervention exists– paying for hearing aids

(Go for the) Pay-offA more integrated systemA system that is more

responsive to families’ needsA more effective system

A system that results in A system that results in age appropriate age appropriate language and language and academic growth for academic growth for all deaf & hard of all deaf & hard of hearing childrenhearing children