Support AB 2072 Letter to CA Senate Health Committee

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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14 Responses to “Support AB 2072 Letter to CA Senate Health Committee”

  1. Nesmuth Says:

    Thats a great letter 🙂 Lacks the ‘wow’ factor tho.

  2. ireflections09 Says:

    RR,

    Well, AB 2072 has raised enough sensationalism all by itself, with emotions running high on both sides. I think that the politicians sitting on this committee will appreciate some level-headed sanity for a change.

    I’ll reserve the wow factor when and if the bill goes to the Senate floor, how’s that? 🙂

  3. Candy Says:

    We only need facts to support the bill. Simple as American Pie. 😉

    Great letter, Ann_C!

  4. theHolism Says:

    Excellent points. Could not have said it better myself. Thanks for taking the time to write this one.

  5. tina jo Says:

    This disturbs me when I see people like you who do not get it and keep twisting what we opponents try to stress…Mendoza hurried through legislation allowing such biased special interest groups to manipulate parental choice by controlling the information entrusted to parents. With a clear indication it did not receive the attention it truly deserves! A simple gesture was to have the sponsors check with the end users BEFORE this bill ever took place. To avoid deficit thinking from the start, we emphasize the importance of language acquisition and development before babies/children get into Early Start activities. This bill will decrease the much needed support for parents when their babies are detected and be treated in time that will indicate a significant impact on their language development not to mention the quality of life issues these children and their families face daily. This bill does not align the overall NHSP system to a more friendly approach. The bill indicates information is provided after diagnosis, but biased opinions from the “personnel” are given before that. It was not clear how or who will develop and fund the written handouts. This bill does not change the approach of service delivery from viewing Deaf as something to fix to an approach that focuses on the whole child. Such changes need to start from the beginning about language acquisition and language development as it is tied to cognitive development. Parents do NOT know the importance of this. Parental choice has everything to do with Deaf stakeholders. They are the very people who end up being the most affected by parental choice. This bill does not go far enough to give parents the information they deserve! Assimilation into society has nothing to do with cochlear implantation and being able to speak, as Mendoza would like many to believe. Parents have the right to know by a refocus from “fix the problem” to a broader consideration of the “nurturing of the child” as a whole individual and the importance of the child’s mind, instead of being narrowly focused on the child’s “ear.” Don’t you get it?

  6. deafmommy Says:

    Hi, I want to let you know that I completely agree with Tina Jo and people who oppose this bill. Please come and take a look at deaf education programs at various schools (e.g. mainstreaming and deaf institution), you will see that a lot of deaf children are struggling with language development and that they cannot communicate at home. They are usually isolated and do not socialize with anyone else when they are at home. I know of one parent who is constantly praying to G-d that her son will eventually become hearing one day and that his CI will help him and he has all kinds of behavior problems, he is very intelligent but is having a very difficult time at school simply because he has very poor language development. Many of these deaf children are out there. What you are saying that there are only VERY few deaf children who are successful in oralism or hearing setting. You are speaking for yourself because your parents worked hard with you and made sure that you were able to do it, well a lot of hearing parents out there do not do it, only VERY few of them do it. Please try to open your eyes, make an appointment to visit deaf schools, talk to other deaf educators and all that, you will get the whole picture of why we oppose this bill. We need people like you and others to unify and support this all together instead of being divisive and thinking that we all are wrong in thinking this way. We think this way because we see it with our own eyes and we have to constantly deal with it everyday…. thank you for reading this and I hope you will have a change of heart afterwards..

  7. Anti-AB2072 Says:

    A hearing family who oppposes AB 2072 http://www.youtube.com/watch?v=Hv8cnaoH4IY

  8. White Ghost Says:

    Anti-AB2072

    It does not mean anything. There was no law during the time. It was before AB 2072 came into the light.

    When the AB 2072 becomes the legal signed by Governor, all audiologists must show the brochure that includes the options. It will become effective as soon as the bill passes and sign by Governor.

    Sorry it does not help anything…..

  9. Li-Li's Mom Says:

    Nicely put, as usual, Ann_C. It’s often said that where California heads, so goes the nation, so I’m watching the outcome of this with interest, despite living now in a place where the full range of options is — fortunately — made available by the state concurrently with early intervention programs, right after either diagnosis or in some cases earlier, when hearing issues are first detected or suspected.

    I think it’s wonderful that this bill standardizes information that has previously been dispensed randomly and with whatever bias or imperfect / incomplete knowledge was available to the individual making “first contact” — often the medical professional providing the results of a test — with parents of a newly diagnosed deaf or HOH child.

    And I’m so very glad to see ASL ‘legitimized’ in this way — it is an important part of the approach we’ve taken with our profoundly deaf daughter, introduced to us in a very similar info packet by our State (and by the AG Bell web site, which listed ASL among its communication options).

    I disagree with Tina Jo in her assertion that “Parental choice has everything to do with Deaf stakeholders. They are the very people who end up being the most affected by parental choice.” I believe the opposite: My choices have nothing to do with Deaf stakeholders, and everything to do with my daughter, who is most directly affected by our choices. And as a parent, I’m extremely aware of the critical importance of language acquisition and language development as it is tied to cognitive development, contrary to Tina Jo’s message. In my daughter’s case, we’re making every effort to open up full access to language — both manual and spoken/written — via ASL immersion and cochlear implants. I’m extremely glad to have had several well-informed options to choose from, and multiple options to pursue simultaneously.

  10. Ann_C Says:

    tina jo and deaf mommy,

    Let me put it this way.

    Say the state legislature passed a bill that features the “language” model with ASL-first-before-others, hearing parents will still find out about the other options and want to use them simultaneously, not after ASL. But such a law would criminalize those options until ASL is established with the infant. That is NOT the way to get hearing parents on your side, believe me.

    I would not want the state nor anyone else telling me that I can use only ASL with my deaf child before I can opt for other choices. That is really no choice.

    OTOH I would certainly appreciate being informed of all the options right after my child’s diagnosis, so that I can do my research and make a more informed choice. This is what AB 2072 will ensure– ASL will become a LEGAL option that has to be presented along with the others by the audiologist or local Early Start provider. The bill prevents either the ear-focused audie or the language-focused Deaf professional from imposing his bias on what should be the parents’ right to decide for their deaf infant.

    Parents have a huge responsibility. They’re the ones who bring their children into the world and have to make a lot of decisions for their children, hearing or deaf. The parents’ decisions and more importantly, their commitment to follow up have an impact on how any child grows up. Unfortunately there will always be parents who either have unrealistic expectations or do not pay forward the commitment, whether the decision was for CI/AVT or for learning sign language or for cued speech, necessary for their deaf child’s success.

  11. Ann_C Says:

    Li-Li’s Mom,

    Lol, California is supposed to be a bell-weather state, yet your state already has early intervention programs that outline all options for the parents? Seems California’s losing her golden luster, heh.

    You said it better than I could about parents’ choices having nothing to do with Deaf stakeholders. To have multiple options to choose from and utilize with your child is the way to go. The whole toolbox should be there! Thanks for your wonderful response.

  12. Ann_C Says:

    To Anti-AB2072 Says:

    That very vlog demonstrates all the more reason why AB 2072 should pass. The bill has ASL as one of several options that the audiologist or local Early Start provider must present along with the others. It will eliminate the presenter’s bias at diagnosis.

  13. Candy Says:

    Right, I responded almost the same to Anti-AB2072.

    There are parents in CA being told only of one option, which is ASL. They found out much later that there are other options, a fact that many deaf people chose to deny. Hello?!

  14. kim Says:

    Ann_C, This was a great letter. Though I have mostly stayed out of the debates on how to raise deaf children, I think any bill that proposes to ‘inform’ parents of all their options has to be the right thing.

    I’m hopeful that if passed this will set a new standard of information to new parents of deaf children and the late-deafened alike– who also must make difficult without sufficient information.

    It’s clear you feel you benefited from early oral training, and of course you are passionate about this subject as a former deaf child. It’s wonderful that you and others who benefited from speech therapy have spoken out. Those who decide on this issue need to hear ALL opinions. If we only listened to ASL promoters one would think that speech therapy has been a dismal failure. I know that couldn’t be further from the truth, especially with current technological advancements in hearing aids and cochlear implants.

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