How Parent Advocacy Groups Can Support EHDI Programs Barbara Raimondo, J.D. American Society for Deaf Children Camp Hill, Pennsylvania

Faculty Disclosure Information In 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 Parents Educators Deaf community

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 Offer The Endeavor ASDC Biennial 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 Act No Child Left Behind Act Captioning Telephone Relay Systems Emergency Preparedness Everything else

Coalitions and Activities Consortium for Citizens with Disabilities Council on Education of the Deaf Deaf and Hard of Hearing Consumer Advocacy Network IDEA Partnership National Agenda National Association of State Directors of Special Education - Deaf and Hard of Hearing Students’ Educational Guidelines National Deaf Education Project Sensory 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 Money Join parent organizations Compensate parents Cover parents’ expenses

What You Can Do (con’t) Pay Attention Parents 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-off A more integrated system A system that is more responsive to families’ needs A more effective system A system that results in age appropriate language and academic growth for all deaf & hard of hearing children