Monday, May 10, 2010

Oppose AB 2072- Kill this Bill!

Here is a recent comment that I made at http://kpfa.org/archive/id/60871
Its a broadcast made in regards to AB 2072 on a local radio station. Feel free to take a listen for yourself.

I am a mom with two sons. My youngest son is 7 yrs old and Deaf. We were fooled by the audiologists who informed us of our "communication options" and "choices" but never once was LANGUAGE and the importance of language, regardless of what we chose, given to us. The audiologist lead us to believe that our Deaf son needed to be fixed....little did I know that in just a few short years without any language, my son's world and life would be affected in all areas of development. The audiologists told us that a cochlear implant would help him to hear and to speak and be a "normal" mainstreamed child. They also told us that he must not use sign language because he would become lazy and depend only on sign language and not learn to hear with his cochlear implant. (The cochlear implant doesn't work instantaneously so what they were really suggesting was that he go without language until he learned to hear which takes about a year. That's if the implant works for the child to hear the speech spectrum clearly. Look at statistics and they will show that this doesn't happen often with a CI and many children will need to learn sign language later on) It's sick of anyone to suggest that a child be deprived language at any point! Language is a HUMAN RIGHT!) They also said he needed to attend a specific oral school in the bay area, in which I would drive 150 miles roundtrip a day to get him there at 2 yrs old. Mind you, the first implant was DEFECTIVE and he had to have it surgically removed and reimplanted. ( I mention the specific oral school because I've now researched and learned that there was a lot of money involved with all the things they required of us to implant our son. The first being that the audi said we must go to that specific oral school for him to be successful and then a specific speech therapist and a specific surgeon. These same people and organizations are now the ones sponsoring AB2072 and funding the brochure and insert. I know first hand the agenda that these people and organizations have and I can say that there is money involved on every level.)
To make a very long and sad story short, ASL and the Deaf community were my son's saving grace. At 4 1/2 yrs old he entered preschool at California School for the Deaf, Fremont, and had NO LANGUAGE. (We used signs but he did not have language. There is a difference. Just as a child may speak words does not mean they have language.) He was like a lifeless little boy with no understanding of the world around him and no way to communicate his thoughts and feelings. It was horrible! He is now 7 years old and finishing first grade. He is bilingual in that ASL is his first language and he reads and writes in english. He is bicultural. He plays sports on various sports teams and is an active, thriving little boy. I could not say this 4 years ago when we were at the mercy of the "professionals" that were leading and guiding our family. His world has opened and he now has hope for a future of endless possibilities.
I oppose AB2072 based upon our experience with exactly what the bill is proposing. Audiologists should not be informing parents of their "communications options" or "choices". First of all, there must be LANGUAGE for our Deaf children to ever have communication options or choices. Audiologist have a specific role and that is to diagnose and treat the ear. Deaf children are not born needing to be fixed. They are no in need of medical intervention...they are in need of language and education!
Second, the material being proposed to give to parents is from the same group and organizations that work with Oral schools and organizations. Where is the accountability for this? Also, how is it that there is not one Deaf person from the Deaf community who is involved in the creation of this bill? Can you imagine if we had men proposing bills on the specific rights of baby girls and their futures, or white politicians proposing bills on the specific rights of African American babies??? We're are talking about a human right here!!! LANGUAGE!!! Why are decisions for Deaf being made by anyone other then Deaf????
It is beyond my why communication options are even relevant to our Deaf children. There shouldn't be a second thought to the fact that LANGUAGE is a human right and necessity. There is no language except for ASL that is 100% accessible to a Deaf/HOH child regardless of the degree of loss and regardless if the child gets a cochlear implant or hearing aids.
If the people backing and supporting this bill were so concerned with making sure that Deaf children flourished and that parents were being fully informed from the beginning, then why would they deny then access to a fully accessible language? Why not inform parents about what happens to their child when they go without language? Or how about giving the child an accessible visual language while the parents decided what to do? Make sure that the child's need for language is being met while parents are researching and figuring out what to do? It makes no sense not to give a child language regardless of what the parents ultimately end up doing.
I can say this from experience....after all that has been said and done in our journey, I wish my son would have had language all along. There is only one fully accessible language, ASL, and if he would have had that while I made my ill-advised decisions to implant him and have him at an oral school and have him spend hundreds of hours working with a speech therapist at 3 yrs old....what a different life he would have now.

24 comments:

  1. Well said! We need more testimonies like this to justify why the bill is so wrong!

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  2. Danielle,

    What a hearttouching and eye-watering blog posting!

    I could imagine how you and your son went through the fruitless and deceptive process done by the professionals without regarding the successful education with language acquisition and social/intellecual development.

    You are one of "too many" parents, who are duped by the so-called experts on deaf people or "education of the deaf".

    Real sorry to see your son going thru such heart-wretching experience with no given results.

    Thanks for sharing your expression with all of us, especially the elected lawmakers in Sacremento.

    Robert L. Mason (RLM
    RLMDEAF blog

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  3. Danielle,

    I am mother to 2 children. My oldest daughter is deaf and my youngest son is hearing. I want to share my story with you about my daughter Maddie.

    When Maddie was 7 months old, I took her to audiology for behave reaction to see what was her hearing loss level. The audiologist (DIRECTOR OF AUDIOLOGIST) approached me with first question was: Why did Maddie not use hearing aid? She can hear some. I told her, no she don't wear hearing aid since she is deaf. Her hearing loss was not important to me since I know she is deaf period.

    The audiologist seems upset with my comment, but we went ahead and do behave reaction test obviously Maddie failed the test. He told me Maddie does not react to the noisy where she should identify. He said my strong recommend Maddie to have cochlear implant. My answer was NO. He said Cochlear Implant is very important because it WILL BE EQUAL TO HEARING people. I said wait a second, it will be not equal because Maddie will still be deaf if she decide to turn CI off. You should said it MIGHT BE EQUAL because it is different from MIGHT AND WILL! He said well, it is important. I said NO. He said "ARE YOU SAYING YOU REFUSE TO HAVE COCHLEAR IMPLANT FOR MADDIE?" I said that what I said from beginning. The answer still NO!

    Maddie is happy normal girl! My son is hearing and ironic is... The audiologist is concerning because all of us are deaf and how will my son Calvin learn to talk....

    I told the audiologist, of course ASL will be his first language, once he grows and he will pick up with speaking which I am sure it will be not a problem when he grows. As long we have communicate accessible for everyone in the family.

    Thank you for sharing a TRUTH story!

    Ruby Losh

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  4. I couldn't disagree more.

    My daughter is also a native ASL user with a CI. We chose ASL, but that doesn't mean it is the best choice for every family. Parents need to know what the options are, and they need to figure out what they can embrace and use.

    I know families that have chosen each modality, and their children have thrived! If a parent is involved, passionate, and doing the work, the child with succeed.

    Spoken English IS a language. It is accessiable to many children with CI's. My own daughter can hear and discriminate ALL sounds in the English language. Many children can. So, the idea that they can not learn spoken languager is no true.

    I'm sorry that your child got to age 4 1/2 without language, but that was your choice as a parent, not a professional's decision. Every professional I have ever met, all the research I have read, and every single book explains how important early language is, no matter the modality. I chose to pursue ASl for my child, but not every family does. Many choose spoken language, and it works beautifully.

    What good is ASL for a child if their family never learns it, and they have no language exposure? Parents of deaf children have a long road in front of them so they need to be passionate about whatever they choose for their family, for some that is ASL, others it it Cued Speech, SEE or AV. Parents who are passionate and involved have successful kids.

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  5. Your story is a very good example of why AB2072 need to be passed. We can't have audiologist give out biased information. That has to be stopped. With this bill, the audiologist cannot give parents one option but all information on everything. There are parents who have been told to use ASL and then find out later there are other options. On both sides of the fence, everyone has experienced this. Your blog has proved my point why AB2072 need to be passed by the Senate and signed by the Governor.

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  6. Candy,
    Nearly all audiologist knows nothing about American Sign Language and Language acquisition so therefore the parents will not be able to learn enough to decide.

    Candy, I would appreciate if you make a Vlog to explain fully why you disagree with over 80 Deaf professionals, educators, parents group in California that are involved opposing this AB2072 Bill.

    Thank you

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  7. John, No offense, but if there are just over 80 deaf professionals, educators, parents group that oppose this, that isn't likely go to be enough to actually make it happen. As there are likely a higher number than that that actually do support this bill.

    Secondly, why are you asking Candy to make a vlog? She has written numerous blogs. If it is your complaint that she should actually do it in ASL, then you are defeating your own purpose of promoting bilingualism, as that also includes English used as a language,

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  8. Valhallian,
    It is no offense, there are a lot more people opposing the bill and I am talking about a group working together everyday.

    Your opinion that I have a complaint with Candy doing ASL is not true.

    By the way, what is your opinion of Danille Reader's harsh experience of the audiologist telling her not to learn or teach sign language to her own Deaf child?
    Do you think that the AB2072 Bill will prevent the future audiologist from advising the parents and their Deaf child not to learn sign language?
    I think not and also I am sure you and your friend, Candy do not either.

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  9. John the bill will prevent audiologist from telling parents not to use ASL. Yes! That is my point. This is our chance to put audiologists in their place by forcing them to provide ALL information, not just one.

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  10. John, I will agree that the audiologist did not do the right thing by Danille, and it is exactly why this bill is needed, because it covers ALL communication options, including ASL. The way I see this bill, if an audiologist does not explain about ASL , after this bill is passed, their license could be revoked due to failure to comply with state law.

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  11. Val and Candy,
    This AB2072 Bill was created by a group that discriminates sign language. It is like supporting an organization such as KKK that discriminates Black people.
    Go find out more about California Coalition group that receives millions from Okerkotter Foundation that discriminates sign language. How can we trust them and support this bill?

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  12. I am glad to see comments by parents and those who know people who have had challenges along the way regarding a deaf child or relative. Audiologists often do what THEY think or feel is right. Many suggest cochlear implants on children at young ages and tells parents how muchit will help them to "hear". But Ruby Losh is right. If and when the child turns the cochlear off, if the battery dies, or the device breaks, the child is still deaf! If the child is not provided with other or additional means of communication with the cochlear - the child will become more frustrated - especially if the cochlear is not working successfully. The cochlear does not allow a child to "hear" like a hearing person. Some sounds are strange, robotic or computerized, and some are just indescribable - as told to me by former students with cochlear implants. This choice is not the only choice available and this is something that really needs to be considered, researched, and decided over time by the parents - not immediately upon finding your child has a hearing loss or is deaf. During my 17 years in education I have witnessed ONLY 5 students that have become successful with the implant. One had an implant because the mother wanted the child to hear a car horn and not get hurt. After the implant, later on, the child was hit by a car! The child was not seriously injured but look at the reasons. Now this child is an adult and doesn't even use it. Another child had a crack in the implant and refused as a teenager to return and let them "cut her head again!" What about the other 50+ students that I have worked with...where are their success stories??? I have no idea.
    Also to comment on deaf parents raising hearing children, excuse me, I AM a child with deaf parents. I am 47 years old and I was raised by BOTH DEAF PARENTS. School systems and other local and state programs are available for hearing children to take speech, have tutoring provided especially in English or Language Arts classes if the child must read aloud, the options and choices are unlimited for children with parents like mine. Deafness does not mean anything except for not hearing with your ears but you hear with your eyes, you hear with your touch, your smile, your heart, and the bond and love between parents and their child. There is so much more to life than to worry about, this is America and parents need to be provided with all options, proof, documents, and support groups from not only hearing parents but especially the deaf parents and adults. We live in a free choice - America.
    Kara Pyles Russell

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  13. I just met with Assemblymember Mendoza today and I can tell you that he is in no way wanting to work with Deaf stakeholders in the process of this bill. Everything from his tone of voice, facial expression, over-talking and lack of respect for someone talking, carrying on side conversations while someone is sharing and unwillingness to just listen...this whole bill should have never been proposed without input from Deaf stakeholders to begin with. As far as the bill itself, it doesn't matter how balanced, unbiased, and full of information a brochure and insert have, if it is coming from and audiologist it will never be neutral. An audiologist is a trained professional who diagnoses and treats hearing loss. They are out of scope of practice when they become the contact person to give communication considerations and educational considerations to parents of newly identified Deaf babies. Another flaw in the bill, as it is proposed now, an audiologist will give this brochure of information and resources to the parents OR if not the audiologist then an other professional. Who is the other professional? My husband asked Mendoza in a meeting 2 weeks ago and he did not know the answer. You would think that the author of this bill would know who he was proposing to have the authority to inform parents and he didn't. He simply said, "I don't know. I guess it's an audiologist." Where is the accountability in this and who will over see that audiologist will simply hand parents the brochure and insert and keep their medical view point out of it? There is no oversight and no accountability.
    As far as the brochure and insert that are claimed to be of no cost to the state, do you know who the sponsors of this brochure and insert are? Clear and plain as day on the back of the brochure it says sponsored by Let Them Hear Foundation and Cochlear America. That is a major conflict of interest in a brochure and insert that is supposed to be unbiased, balanced, and neutral, isn't it?
    I am in complete agreement that all parents need to be given comprehensive, evidence based, information on language acquisition and the communication considerations AS WELL AS the risks and benefits to each of them. That truly would be giving parents the full information.
    I would want to see Deaf babies have everything. It doesn't matter if a family decides to implant their child, put hearing aids on, put them in an oral school, don't choose anything for a year....give them a 100% fully accessible language in the mean time. Let's cover all bases and make sure that while the family figures out what will be a good match for their child, let's give them a fail proof language, ASL. I'm not saying that parents don't have a choice in what they will ultimately decide and I'm not saying that what they will choose is right or wrong. Our family and our son have been on both sides of this spectrum. I am saying that if we all are truly in this for the best interest of the child and we honestly and truly want to see our Deaf children flourish then we will want to give them everything.
    This really isn't a health issue. It certainly is a language and education issue.
    We see all too often that because parents feel that they must choose one "option" o "choice" over another, it is the Deaf child that suffers in the long run. We could really start building a foundation of language from the beginning so that either way things turn out with an implant, without an implant, oral school wasn't the best match, or maybe speech did develop, we know that a foundation of language sets the stage for all development and will be a building block for the speech if that child has the capability.
    I am not writing my blog to argue with any of you. This blog is to share my family's story, our experience, and our opinions. Our family is unique and no one has had the same experience.

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  14. Miss Kat's Parents, you said: I'm sorry that your child got to age 4 1/2 without language, but that was your choice as a parent, not a professional's decision. Every professional I have ever met, all the research I have read, and every single book explains how important early language is, no matter the modality.

    My choice as a parent was to listen to the "professional" advice and guidance that was given to me. You are fortunate that every professional you have ever met has explained how important early language is. If we were to ask 100 different families from across our state the information they received from the various professionals they met early on in their child's diagnoses then I can confidently say that each and every one of them will have a different experience. Each SELPA, each school district, each audilogist, each Early Start contact, every single one of these people through out the state will be giving out different information. It is unfortunate. You were blessed to have consistently come across professionals since your daughter's diagnoses that stressed to you the importance of early language. Your daughter is blessed and thank you for sharing that your daughter is a thriving child with language. I think that is what all our concerns are based upon.

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  15. Actually, that's where you are wrong. My first point of contact was an audiologist who told me that if my child didn't learn to speak it was "because (I) was a lazy mom." I was also handed a folder from the hospital that said that spoken language was the natural birthright of all children. This is the kind of BS that the bill would stop.

    I think parents need to be given unbiased information about language and communication options. Parents can be educated about cochlear implants and ASL. Why would it be in the best interest of children to withold knowledge?

    As for the arguement about whether or not CI's work...that is old news. CI's work. Why are their children that don't get access to spoken language with their implants? Many reasons, including lack of parent follow through, anotomical issues and age of implantation. Why are there kids in bi-bi schools whose implants "don't work"? Depends. Which came first, the chicken or they egg? Are they in a voice off enviroment because they don't get good access to sound or do they not learn to get good access to sound because they spend all day in a voice off enviroment???

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  16. Danielle, I was told that the deaf people at the meeting yesterday refused to collaborate. They were demanding this and that. That is not collaboration. I was told that things were pretty theatrical as well.

    Collaboration means: bring up concerns, discuss modification of bill and wordings, etc. Negotiate.

    What happens if this bill fails? (I doubt it will fail). But suppose it did. What then? DNIA already has a plan to reform the NHSP right (we know so, because Ella said so). Then it means a new bill will be proposed to include their recommendations as stated in their statement. Do you honestly think that it will pass? Nope. I can guarantee it will not pass. Why? because it does not allow parents to choose.

    Two different viewpoints here. AB2072 is not about what works. It is NOT about which is better. It is about making sure all parents are informed. And, that all parents will make their own decisions.

    That is what the bill AB2072 is all about. It is all about telling audiologist to stop providing information on one option. It is time for audiologist to share information on ALL options.

    Demands do not work. Collaboration does.

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  17. Candy, you were told about yesterdays meeting but you weren't there so you really don't know. I raised my hand and had the opportunity to speak directly to Mendoza and answer questions he had as well as ask him questions I had. I was unable to even get to a point of collaberation with him starting side conversations and whispering to the person next to him while I was talking. He did not have enough respect or desire to just listen. At that point yesterday, all he needed to do was listen as I made eye contact to him and spoke directly to him. He disregarded what I was saying and many times did not aknowledge anything I said or asked. He actually became defensive with me and his tone of voice changed and he became sarcastic with me. I don't feel that he is willing to collaberate. He shows that through and through and through. He wants to get involved with Deaf babies and the process of identification by the audiologists and how and what information is getting to parents. That concerns me. He very clearly did not reach out to the Deaf community prior to proposing this bill and he makes it very clear that he is not willing to change anything that is in the bill regardless of collaborating with the Deaf community or not. He shrugs his shoulders and says NO. I don't feel that he is upholding his position as a assemblymember for the people by nit even listening, much less the attitude and carelessness that he exudes to me and my family.
    I know what happened at that meeting yesterday. I was there. You were not.

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  18. 1, 2, 3, 4, 5, 6, 7, 8, 9, 10...... sigh.....

    Candy, AB2072's trust in audiologists to provide accurate, unbiased information to parents is, for the most part, unfounded. Audiologists have training in one thing only -- the identification of hearing loss and the use of amplification to "remedy" that loss. They, for the most part, know nothing about language acquisition, child development, let alone Deaf culture and ASL.

    Why do I say audiologists are not the right people to put trust in their hands for parents to rely on? I have recently seen audiograms in which the child basically bottoms out -- no response to sound in testing. Audiologist says "child has no response to external stimuli or during testing". The audiologist's immediate recommendation? "The child should continue to wear hearing aids". If the child has NO response during testing, hearing aids are NOT going to help! The audiologist should be recommending the child learn sign language (the child has no spoken language and little to no sign language skills). And we're supposed to put our trust in audiologists to give the correct information? Let's leave it to true experts in language acquisition and child development who truly UNDERSTAND the issues facing Deaf children and Deaf culture!

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  19. Miss Kat's Parents: you said, This is the kind of BS that the bill would stop.
    Actually, this bill will not stop audiologists from the kind of things happening like you and I both experienced. This bill as it stands does not have any oversight of what the audiologists say or do other then hand out the brochure and insert. There is no accountability by anyone or by any state entity. The bill simply proposes that the said brochure and insert would be given by the audiologists. We both agree from our experiences with the audiologist that we did not receive unbiased and complete, comprehensive, research based, information. This bill is not going to hold audiologists anymore accountable then they are already held....which they aren't.
    You said, I think parents need to be given unbiased information about language and communication options. Parents can be educated about cochlear implants and ASL. Why would it be in the best interest of children to withold knowledge?
    I COMPLETELY AGREE! However, the audiologist is not the person to be giving this information to parents.
    You said: As for the arguement about whether or not CI's work...that is old news. CI's work.
    I didn't say they didn't work. In many cases they don't work to give a child full access to the speech spectrum to learn spoken language at a rate where they will develop language at the same rate as their hearing peers. That is no different then children who go without language and don't have an implant. Consequently the child falls behind and has more work to catch up. It doesn't have to be this way if the Deaf child has access to language from the beginning. I agree that there are many reasons that a CI "doesn't work". We're talking about why a child is unable to learn spoken english with the use of a CI. Many different reasons. I have yet to meet an implanted child who gets there implant and then sits in a voice-off environment all day. The implant center will not agree to implant a child who is not going to get the proper school environment, speech therapy, and home support. I'm not even going to argue about why a CI doesn't work. I will believe that whether the CI works or not doesn't matter in the long run as long as the child has 100% access to language in the meantime.

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  20. bottom line is that during NHS process, who will be testing the babies? This is one area that cannot be avoided. We are constantly seeing the same message from both sides. Audie tells me I must use ASL. Audie tells me CI is the best. Audie tells me TC is guaranteeed success. So, we need to put a stop to the audies doing that and that is what this bill does. It does not change Early Start nor does it modify any programs currently in force. What is strange is that you guys are OK with deaf professionals telling parents that ASL (LA) first before anything else. You guys are just as bad as the audies.

    As for yesterday's meeting. Well, I know all too well the tactics of that particular group so It does not surprised me that they're demanding things and not collaborating. Same ole. And then again, I still am reeling by DNIA's statement and wonder how is that any different from what the audies have been allowed to do in the past. Scratching my head....

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  21. Candy, you said: So, we need to put a stop to the audies doing that and that is what this bill does.
    The accountability and oversight that you are saying that audies need will not happen because of this bill. This bill has nothing to do with holding audies accountable for what they say or do other then give the parents the said brochure. This bill does not and will not put a stop to what the audies are already doing and known to do.

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  22. A valid point was brought up about the oversight of the audiologist as I do not think they should be involved with the linguistic and educational process of the deaf child and that is something I think we all can agree on.

    So I decided to look around and see who actually does the oversight of the audiologist as this bill does not cover that and it should be somewhere else in the state administrative code.

    Lo, and behold, I found it. If you look in the California Business and Professions Code Section 2530.2. This is how they define the role of the audiologist and I will quote it directly from this code by copying and pasting.

    (j) An "audiologist" is one who practices audiology.
    (k) "The practice of audiology" means the application of
    principles, methods, and procedures of measurement, testing,
    appraisal, prediction, consultation, counseling, instruction related
    to auditory, vestibular, and related functions and the modification
    of communicative disorders involving speech, language, auditory
    behavior or other aberrant behavior resulting from auditory
    dysfunction; and the planning, directing, conducting, supervising, or
    participating in programs of identification of auditory disorders,
    hearing conservation, cerumen removal, aural habilitation, and
    rehabilitation, including, hearing aid recommendation and evaluation
    procedures including, but not limited to, specifying amplification
    requirements and evaluation of the results thereof, auditory
    training, and speech reading, and the selling of hearing aids.

    According to this, audiologists do have the right to somewhat access the linguistic and education aspect of the deaf child the way I see it.

    Furthermore, what I am see is that the problem is NOT with AB2072 as that mandates all communication options to be exposed to the parent. THE PROBLEM IS ACTUALLY WITH THIS CODE that defines what an audiologist does and this is what needs to be changed.

    It is usually significantly easier to change a code rule or description than it is to change a state law and this is what should be focused on. That being the case, I say, pass AB2072 and work on getting the code description of the audiologist changed. An audiologist should only focus on the audiological aspect of the child and nothing else and then this is where the relation professions come in whether its a speech pathologist or an ASL linguistic-related profession, etc.

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  23. wow, now, we, deaf community need to training hearing world, not the audiologists or doctors... more important is the deaf service to train onservice "language is our language" why fixed did god agree with it?? we don't fix "robot" human... amen to all hearin parent need to wake up and see their child's feeling not the parent's wish!!!! THINK ABOUT it... our cultures greek, french, italain, deaf, black is our "speak" language we support... still we are struggle with english no one is perfect.....

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  24. Actually, my daughter recieved her CI when she was enrolled in a voice-off ASL school and had been for 3 years. She remained in that school for another year after her activation.

    Audiologists don't make language, school placement or communication decisions, PARENTS DO! Anyone who says otherwise is trying to shift blame. My daughter's first and native language was ASL, why? Because I made it that way.

    I was presented BIASED options, and I did my own research and made a decision. It is crappy that it had to happen that way, and I think this bill is a step in the right direction. Parents should be given information on ALL options and pointed in the right direction for more information in the areas they have interest.

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