Archive for June, 2010

Support AB 2072 Letter to CA Senate Health Committee

June 10, 2010

To:

Senator Elaine Alquist,  California Senate Health Committee Chair; Senator Tony Strickland, Senator Samuel Aanestad, Senator Gilbert Cedillo, Senator David Cox, Senator Mark Leno, Senator Gloria Negrete McLeod, Senator Fran Pavley, Senator Gloria Romero, and Mia Orr, Health Committee Consultant

cc:   Assembly Member Tony Mendoza, Rene Bayardo

June 7, 2010

RE:  Please support AB 2072

To the Honorable Members of the Senate Health Committee,

I urge that the members of the Health Committee please support AB 2072.  This bill was initially formed because some California parents of deaf children complained about not being told of all communication options after their deaf child was diagnosed with hearing loss.

About 95% of deaf babies are born to hearing parents.  Hearing parents are often clueless as to what communication modes are available for a deaf child, so information that explains all those modalities and lists resources is a first step in educating the parents.  This bill is about this first step.

This bill, if enacted into law, will require that the first contact who discusses the results of the hearing tests with the parents of a newborn just diagnosed with hearing loss and the local provider of the Early Start program provide the parents with written and electronic information on four specified communication options:  ASL, Total Communication, Cued Speech, and listening and speaking.  AB 2072 would prevent that first contact and the local Early Start provider from presenting only one option, or his personal favorite, or only the option that the professional/provider believes will benefit the newborn.  AB 2072 places the decision-making process squarely back on the parents, with whom the decision should rest in the first place.  The state nor the hearing loss /Deaf professional should NOT be making this decision by informing parents of only one option, which is really no choice.

The bill will create accountability not just for hearing loss professionals, such as audiologists, for example, who may manipulate or withhold information about options other than cochlear implants/AVT but also for Deaf professionals who may manipulate or withhold information about options other than ASL from parents.

There are several recognized communication modes for the deaf child, not just one.  Not just ASL, not just cochlear implants/hearing aids and speech therapy, and so on.  No one deaf child is the same and one cookie-cutter solution will not work for every deaf child.  One deaf child will be happy with the bilingualism of ASL and written English.  Another deaf child will thrive in a Total Communication environment which utilizes a combination of sign either in ASL, SEE or PSE along with speech.  Yet another deaf child will like speaking with the aid of mouth pronunciation cues, as in cued speech.  And another will have either hearing aids or cochlear implants and learn to speak through Audio-Verbal Therapy (AVT) or speech therapy.  Hearing aids and cochlear implants are assistive tools that can be used with any of those options.  I was an oral deaf child who wore hearing aids and learned to speak and who loved the sound of her father’s voice.  I was born with severe-to-profound hearing loss to a hearing family, live primarily in the hearing world and have a hearing husband.  I’m also a registered voter and long-time resident of California.

I quote Section 124119.5 of the Health and Safety Code:

“Parents of all newborns and infants diagnosed with a hearing loss shall be provided written information on the availability of community resources and services for children with hearing loss…”

This section mentions “written information on the availability of community resources and services” but it specifies nothing about communication modes, nothing.  “Resources and services” before any explanation of communication modes is like the placing the cart before the horse.  Also, where is transparency on the part of the State?  How will anyone know for certain that the Department of Health Care Services, under which the NHSP is administered, and the Department of Education, under which the Early Start program for infants from 3 months to 3 years is administered, are upfront with presenting the information about ALL these communication modes when hearing loss professionals and/or Early Start providers discuss the communication factor with the parents?  AB 2072 will ensure that hearing loss professionals and local providers of the Early Start program provide information on all these communication modes, so then parents can understand about the different communication modes available and look up the listed resources to do their research.  That is putting the horse in front of the cart, so to speak.

In addition, parents need information on all these options right after a newborn’s diagnosis so that if the first chosen mode doesn’t work with their deaf infant, they will already know of other options and resources to utilize during the child’s infancy, during which one mode or more may work for their infant, as time is of the essence. Language acquisition is the fastest between 0 to three years of a child’s early life, after which time language delays are inevitable.  AB 2072 will ensure that parents learn of other options and develop a Plan B while the child is still an infant, and not later after age 3.

This bill covers only the newborn phase from birth to 29 days, for the State defines the age of a newborn as such.  As AB 2072 is framed to become a new Section 124121 in the Health and Safety Code, this bill leaves older Section 124119 intact.  The opposition to AB 2072 has misconstrued this bill to be anything but a new Section.  The bill itself is:

  • not about which communication modes work or don’t work
  • not about deaf consumer groups being excluded (they are still mentioned in the older 124119 Section)
  • not about the definition of the audiologist’s role
  • not about moneyed special interests
  • not about the definition of deafness on the medical model or the linguistic model
  • not about the brochure (the language of the bill says nothing about NCHAM’s “Communicating with Your Child” brochure yet the opposition has assumed this to be the case, or any other brochure, for that matter.) *see postscript
  • not about Deaf education based on ASL and written English (we’re talking about newborns here)
  • not about Early Start, which begins after the newborn becomes an infant, after 29 days

It is about ensuring that the parents of newborns diagnosed with hearing loss are provided with written/electronic information on four specified communication modes and a list of resources.

The California Deaf Newborn Identification and Advocacy Stakeholders (CDNIAS) have claimed to be in dialogue with Senator Darrell Steinberg for the last three years on a proposal to reform the state’s NHSP with a linguistic, and not a medical, model based on ASL-first-then-other-options-later.  It is unrealistic to not take into account that nearly 40% of deaf babies born are fitted with cochlear implants and learn speech via audio verbal therapy (AVT).  Such a model is not taking into account the advances now being made in hearing technology that a baby with a cochlear implant at age 6 months today will probably grow up into a six-year old child who can speak and understand language on par with his hearing counterparts.  Such a model does not take into account that not all deaf children will thrive in an ASL environment.  Some deaf babies with mild to moderate hearing loss are fitted with hearing aids and can acquire speech as infants/toddlers, then lose more hearing in childhood but still prefer the speech they acquired earlier, for example.  Such a model does not take into account that future treatments such as stem cell treatment may cure some forms of infant deafness and render sign language moot in such cases.

It is the CDNIAS’ intent to introduce legislation that proposes their NHSP reform model of mandatory ASL-first to be developed, overseen, and disseminated by the State’s Department of Education.  In other words, CDNIAS wants the State to dictate to parents on how to communicate with and raise their deaf child and that is ASL first, before other modalities.  Such a myopic proposal if enacted into law would criminalize any other option chosen before ASL-first.  One only has to look at how many State and Federal programs have led to disastrous results and legal challenges.

CDNIAS and other opponents want AB 2072 killed because they had a plan to reform the state’s NHSP in the works for three years.  Legislation similar to AB 2072 was introduced and withdrawn two times in the state legislature and both times the opponents claimed they were not included as stakeholders and said ‘no’ to both pieces of legislation.  The fact is, this opposition coalition has made unreasonable demands and untrue claims of not being included.  There were a number of meetings between supporters and opponents of the bill, made difficult by the coalition’s no-negotiation stance.  ASL is included as an option in AB 2072, an option that has never before been included in California legal code, and the opposition coalition distrusts what will become law, if AB 2072 is enacted? Why? They want only bilingual ASL and written English for deaf babies to acquire before all else.

Please support AB 2072 to help parents make an informed communication choice for their deaf newborns and eliminate presentation bias on communication options.  Thank you for your time and consideration of this letter.

Sincerely,

Ann_C

___________________________________________________________

*Postscript:  AB 2072 was recently amended on June 9th.  The changes involve written/electronic information to be from the National Institute on Deafness and Other Communication Disorders and “or other related professional” was struck through, meaning deleted.

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