CAD responds to Thomas Bone's letter-- NOTHING ABOUT US WITHOUT US-
Dear Mr. Bone:
Thank you for the response to the August 25, 2014 email from California Association of the Deaf. We would like to meet with you and discuss your response to our concerns about your new Parent’s Guide to Hearing Loss.
CAD launched an awareness campaign about the epidemic of language-deprived Deaf children in California a couple of weeks ago. We do not understand why you would not want to work with us who are more knowledgeable about our own issues.
While we understand that your program is mainly focused on 0-5 Deaf children and catered toward their families, we are looking at your program and policies as one of the causes of language-deprived Deaf children (0-5) and students K-12. We are working hard to change this nationwide crisis by making research information & resources and evidence-based principles about ASL and English to the parents of Deaf babies. Your office as a state government entity for providing information and services to Deaf babies and families should be concerned about this crisis.
Because of our shared concerns, the California Department of Education in 2010 funded an all-inclusive parental effort to develop the Parent Resource Guide (PRG). The PRG guide is the most balanced one you can find anywhere in the nation, and it includes a comprehensive section on Hearing Loss. Furthermore, your department added the Parent’s Guide to Hearing Loss to Systems of Care Division/DHCS website yet I cannot find the Parent Resource Guide (PRG) anywhere on your website.
May we remind you of the letter you wrote to Sheri Farinha, CEO of NorCal Services for Deaf and Hard of Hearing back in September 2013 where you wrote:
“…Once we have a comprehensive compilation, clinical staff here, including physicians and audiologists, will review the materials for medical, programmatic and ethical appropriateness, and we will then disseminate these materials to HCCs…Further, we believe that an all-inclusive collection of materials will allow parents to make the most informed decision. (words bolded for emphasis).
In CDE’s letter to you on July 28, 2014, they told you two things:
“…(your HCC) packet was not reviewed by important stakeholders;” and
“…the information is not consistent with information distributed by CDE.”
CAD supports CDE’s position that the information in both CDE’s and DHCS’s guides are conflicting and will only add to the confusion of new parents. And, more importantly, the information on American Sign Language (ASL) is grossly inaccurate, inappropriate, and incomprehensive.
California’s Early Identification Program is to work with specific entities and stakeholders. Therefore the information should be streamlined, and the goal for all services should be language acquisition. In the case of Deaf babies and their families in California, this means both ASL & English.
Let us outline our issues once again:
1. The MAJOR issue of Deaf babies is not the lack of their hearing but the LACK of a visual language. This issue is already addressed in the Parent Resource Guide (PRG).
2. Thus, as the families’ first contact, the hearing professionals have an ethical responsibility to discuss with the families the importance of both languages, ASL & English.
3. The audiologists are focused only on the speech mechanics of the English language rather than on the acquisition of the English language.
4. The audiologists are NOT qualified to discuss language development with families of Deaf babies.
5. The audiologists are not trained on language development of Deaf babies.
6. Parents are NOT getting unbiased, appropriate, and accurate information about American Sign Language and English.
You as the Chief of California Statewide Programs Section have a greater responsibility to respond to a stakeholder group who has been directly and deeply affected by the hearing and speech policies of the California Audiology Association. The group that worked with you to develop the Parent’s Guide to Hearing Loss has a myopic agenda than the Deaf Stakeholders.
We need to expand the usual and myopic concerns of “hearing loss” to include the fact that most of our DHH children arrive at kindergarten without adequate language and social development, which are symptoms of language deprivation. This is a historical issue because of the viewpoints toward speech development when we must focus on language development instead.
Because we believe you want to be more knowledgeable about the issues facing Deaf babies, let's meet to discuss this further. Working together, we can create systemic change to raise the level of accomplishment for all Deaf and Hard of Hearing babies.
Julie Rems Smario, President
Marla Hatrak, Vice President
California Association for the Deaf
Assembly Member Ken Cooley
Assembly Member Roger Dickenson
Assembly Member Jose Medina
Senator Jim Beall
Senator Ed Hernandez
Senator Carol Liu
Senator Bill Monning.
Senator Mike Morrell
Toby Douglas, Director, DHCS,
Dr. Hallie Morrow EHDI Director, DHCS
Tom Torkalson, California Superintendent of Public Instruction
Dr. William Ellerbee, Deputy Director of Public Instruction
Scott Kerby, Director, State Special Schools Division, CDE
Nancy Sager, Consultant, Office of Education of the Deaf
Sheri A. Farinha, acting Chair, California Coalition of Agencies Serving the Deaf and Hard of Hearing
Tony Ronco, President, Hands and Voices, CA Chapter