I discovered this at the CAD (California Association of the Deaf) site. Its interesting that this topic is still alive...considering the discussion on this FB page the last two days. ___________________________________ CAD (California Association of the Deaf) Thomas Bone, Chief of Statewide Programs Section-Systems of Care Division/DHCS, responds to CADs letter of concern about California Academy of Audiologys pamphlet, “A Parent’s Guide to Hearing Loss.” We are working on our response- Keep you all posted-- Julie Rems Smario, President Marla Hatrak, Vice President California Association for the Deaf Dear Ms. Smario and Ms. Hatrak: I appreciate your taking the time to communicate to me regarding our Newborn Hearing Screening Program informational material. I apologize for my somewhat tardy reply which in no way is to be inferred that I do not view this issue with the utmost importance. To the contrary, I have spent considerable effort since receiving your email educating myself on the intricacies of your position. You began your email with “We are mystified at the action taken…” I, too, was mystified by the reaction to our producing information meant to help the parents and guardians of children found to have some degree of hearing loss. First, you were, unfortunately, provided incorrect information. “A Parent’s Guide to Hearing Loss” did not replace the existing Parent Resource Guide. The Newborn Hearing Screening Unit’s (NHSU) informational material was added to the existing materials. Nothing was removed or changed. We want the materials that our Hearing Coordination Centers (HCC) distribute to the parents, guardians and care givers of infants newly diagnosed with some degree of hearing loss be as comprehensive a set of information as possible. The information packet is meant to provide the parent a solid foundation detailing with all of the myriad avenues we are aware of available to that individual(s) facing a potentially unique and new set of decisions to be made on behalf of their infant. NHSU does not have a preference or a bias for any avenue the parent elects to pursue on behalf of their child. However, NHSU does have a defined responsibility to our citizens. One aspect of that responsibly dictates that our HCCs provide the parent with unbiased information regarding their infant’s hearing loss. We believe this information should provide the parent with a basic understanding of what hearing loss can mean for their child as well as a comprehensive list as possible of the resources available to that parent to thereby allow the parents to decide the direction they believe might be best for their child. We believe that with the inclusion of “A Parent’s Guide to Hearing Loss” with the extant informational materials we provide a more comprehensive foundation for parent decision making than was previously the case. We removed nothing. We changed nothing. Moreover, as stated, we in NHSU subscribe to no single approach; we do not support any one option. That is not our role. We do support the right of the parents to have as much information as possible to help them begin their own research and quest for the best possible approach for their child and their family. This, then, is the background for adding our “A Parent’s Guide to hearing Loss” to the materials distributed by our HCC contractors. It is predicated solely on wanting to provide the best and most comprehensive information to our fellow citizens. I hope you see that we share your passion and dedication to this group of fellow Californians. Best regards, Thomas W. Bone, Chief Statewide Programs Section Systems of Care Division/DHCS 1515 K Street, 4th Floor Sacramento, California 95814 August 4, 2014 Mr. Thomas Bone, Chief Statewide Programs Section 1515 K Street, Suite 400, MS 1800 Sacramento, CA 95814 Dear Mr. Bone: We are mystified at the action taken up by your Statewide Program Section to develop and distribute the pamphlet, “A Parent’s Guide to Hearing Loss.” It is rather unfortunate to realize how your tax-funded program has wastefully duplicated and contradicted the effort spearheaded by the California Department of Education who worked with stakeholders to produce a similar resource guide that is unbiased, research-based, and comprehensive for new parents. Additionally, in terms of both content and intent, there are many upsetting issues with this pamphlet that you need to be aware of, and especially because of recent history. The Academy of Audiologists, whom you alluded to in your introductory remarks in the pamphlet, was actually a key lobbying group in 2010 for AB 2072 that was originally about distributing a new brochure called Communicating with Your Child. AB 2072 did not pass due to strong opposition by the ASL Deaf Community and Parents with Deaf and hard of hearing children. They knew the information that was being distributed was biased toward oral option only. After our AB 2072 fight against the Academy of Audiologists and a few other hearing professional groups, the California Stakeholders of ASL/English (CAL-SAE) met with California Departments of Education (CDE) and of Health Services (DHCS) and requested more balanced and accurate information about both American Sign Language and spoken English as part of materials distributed to new parents. The result was CDE’s Parent Resource Guide (PRG) and DHCS’s decision to adopt CDE’s Guide to distribute through HCCs. Imagine our surprise when, once again, the Academy of Audiologists has taken it upon themselves to introduce new materials to the Department of HealthCare Services without checking with us! We are a key group to negotiate such materials. There are too many points to make; we are highlighting just a few of the main points of our concerns: · The non-involvement of ASL Deaf leadership in developing the pamphlet, “A Parent’s Guide to Hearing Loss” (PGHL). There ought to be in these efforts “nothing about us without us.” · Ignoring the issues of the lack of language input, or the lack of access to healthy language, or even the intentional withholding of language – which are not about the hearing level of the child per se. · No discussion about “healthy language development” or how learning language does not require it to be auditory-based. · The inclusion of biased, but cleverly composed “pushing” style questions that promote answers in favor of an auditory-only approach. · Gross misinformation about American Sign Language (ASL) · The pamphlet’s Chicken Little tone incites an “unreasonable fear in those around them” and perpetuates the notion that having a Deaf child requires excessive intervention services. · The lack of qualifications of the audiologists to be providing parents with information about their Deaf children and their language acquisition issues, and the academic & social effects on the longer term issue of the child becoming kindergarten ready when he or she enters elementary school. “Audiologists are professionals trained to measure individuals’ ability to hear and distinguish between sounds.” They are not qualified to discuss spoken and signed language development with parents. · The qualifications of the staff of the HCCs to be consulting about language acquisition and the grave consequences of language deprivation. · The inappropriate usage of unacceptable terminologies referring to hearing status throughout the pamphlet. · Biased and incomplete list of resources. · Listing of oral-only private schools only. · DHSC is not the only state entity required by law to support newborns identified Deaf. Other state entities such as the Department of Developmental Services (lead), the CDE, and the Department of Social Services, Office of Deaf Access Assistance Program, are also supporting CA’s EHDI. DHCS is the only funded entity and thus should not be using its federal funds to support one option only! While we don’t yet know your rationale to distribute and promote the demagoguery of the “A Parent’s Guide to Hearing Loss” pamphlet without involving the ASL Deaf Community as a foremost Stakeholder, we request that you revisit your decision, take down the pamphlet, and employ CDE’s Parent Resource Guide for the HHCs to distribute. Sincerely, Julie Rems Smario Marla Hatrak President Vice President
Posted on: Sat, 20 Sep 2014 01:25:36 +0000
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