Recently, Thomas Bone, Chief of Statewide Programs Section-Systems of Care Division/DHCS, responded to CAD’s letter of concern about California Academy of Audiology’s 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.
Thomas W. Bone, Chief
Statewide Programs Section
Systems of Care Division/DHCS
1515 K Street, 4th Floor
Sacramento, California 95814