Friday, June 18, 2010

Deaf Read(ers)...Please Clue Me In (Lost in Tuscany)

I have always advocated access to information, but the document I read (which was sent to me by an anonymous source) regarding AB 2072 uses radical wording that does not say objectivity to me. I read that bloggers have been posting regarding this bill since April...and I honestly have no idea what to make of it- could someone please inform me?

Another blogger, Candy wrote for the passing of the bill and posted What it is all about: The Truth Behind Opposing AB 2072

However, these are some sections from the document entitled:
Statement by:
The California Deaf Newborn Identification and Advocacy (DNIA) Group
A Citizens Advisory Group
Comprised of Deaf Consumers, Parents of Deaf Infants and Children, California
Educators, Deaf Service Provider, and Researchers
“Creating Opportunities which Enable the Optimal Achievement of Linguistic
Competency”

Many of these training programs have...

little or no quality information and many also do not include ASL videos. The
Alexander Graham Bell Association (AG Bell) and cochlear implant corporations are
effective in promoting and marketing their missions and products early intervention
literature. Such is the nature of the oral-aural, cochlear-implant-oriented
philosophy which dominates the referral system, with the backers standing to gain
financially from the system as it is currently designed. Invariably, the
information provided to parents under the current system is based on the so-called
“option” system, “option” in this case being a misnomer. The current system needs
to be improved so that the focus is on language acquisition. Language as mentioned
earlier, in the general sense is not speech, and it’s not listening. This is often
where many parents can get easily confused. Counselors who make home visits are
generally not qualified or trained to explain the difference. They typically don’t
have training is language acquisition to understand the difference. They also
typically don’t have a background in Deaf culture and Deaf Studies which would
enable them to have a better understanding of the history and richness of the
visual language that members of the Deaf community share. This is why there should
be mentors who are themselves Deaf to be able to appropriately answer parents’
questions about ASL language acquisition and provide unbiased information.

Once the parents become involved with their deaf or hard of hearing infant in the
Early Start program (which is currently under Department of Developmental Services
(DDS)), most early interventionists there are hearing people who also have limited
training on early language acquisition and Deaf issues. They are not qualified or
knowledgeable enough about early language acquisition or Deaf culture or Deaf
studies. The interventionists must be culturally Deaf people who can effectively
provide guidance to parents and training in the topic of language acquisition, as
well as language training for the Deaf child.. Bilingualism should be the goal:
Visual language ASL / read-write English. ASL also provides an efficient way to
communicate understanding of how spoken English is produced and understood. Speech
training is enhanced, but secondary to visual language acquisition because it is
not 100% accessible by a Deaf child.

• Ethical Guidelines – For the identification process under the Department of
Health Care Services (DHCS), Ethical Guidelines need to be established. These
guidelines would be for audiologists, pediatricians and physicians who interact
with new parents and their Deaf babies to shift their acculturated focus from being
on “fix the problem” to redirect it to a broader consideration of the nurturing of
the child as an individual, instead of being narrowly focused on the child’s “ear,”
i.e., body part. Through the use of Ethical Guidelines and resulting training on
them, it is possible to re-focus the medical system’s “fix it” mentality, which is
inappropriate when it only focuses on a part of the child and does not take into
account the whole child as an individual and the importance of the child’s mind.

Help!?

29 comments:

Anonymous said...

Hi Jodie: boy, where to start? In my opinion, the situation is being complicated by a whole bunch of extraneous factors that have nothing to do with the actual bill itself. As I understand it, the purpose of the bill is straightforward: when audiologists inform parents following the newborn infant hearing screening that their baby is deaf, they will be required to give the parents information from the National Institute on Deafness and Other Communication Disorders (NIDCD). The NIDCD web site and brochures mention ASL, listening/speaking, cued speech, and total communication. It will then be up to the parents to decide which avenue to pursue. That's all there is to it.

The complications relate to who the sponsors of the bill are - mostly advocates of cochlear implantation, oralism, and auditory/verbal therapy. This caused the American Deaf community to believe that the intent of the bill cannot possibly be neutral, objective, ethical, and unbiased. They also believe that an audiologist's job is simply to test hearing. Audiologists cannot be expected to know anything about ASL or Deaf Culture. Therefore, they will not be able to give parents information about ASL. Same applies to Early Intervention services.

DNIA is pursuing a separate agenda of their own, which is at cross purposes with AB2072. DNIA wants for ASL to be the FIRST option for all deaf babies. That way, if the outcome from the other options is not as expected, the deaf child will still have a language. I personally don't have a problem with all deaf babies learning ASL. Parents can utilize any other methods and technologies along with ASL. It doesn't have to be an either/or decision, even though most auditory/verbal therapists still say to not use ASL while learning to speak and listen.

However, the main issue is that parents must receive ALL the information they can in order to make an informed decision in the best interests of their particular deaf baby, the family as a whole, and the resources are available to them. I also believe that deaf children are diverse. There's no one approach that works for everyone all the time. Parents are the ones who know their child best. They are the ones who are going to be raising their deaf babies. That's why I support AB2072.

Anonymous said...

Hi Queen Bitch....Been long time no posting yours! oxoxox

Glad that I'm here to help you....

here's the link.

http://www.nidcd.nih.gov/

Of course I am supporting AB 2072.

The oppose AB 2072 are afraid of losing many deaf cultures and history. That's why they want to keep ASL as the marketing. They are trying to defeat the marketing of CIs, Oralism, AVT and many more. That's why Deafhood Foundation is trying to earn $$$$ to get the bill to defeat the CI and "non-ASL" corporations. It will never happen.

Hugs....White Ghost

Deaf said...

Hi,

No way I will ever call you or anyone, Queen Bitch, like White Ghost.

Please be patience to hear more news next week about this AB2072 Bill.

The senate was suppose to vote up or down last June 16th but Tony Mendoza, the author of the bill realize that there were not be enough votes to pass it and many of the senators were not comfortable about the bill.

So it is obvious that AB2072 Bill doesn't have the integrity and Tony Mendoza wanted another week to see about more amendments added to the bill and guess it is obvious that the amendments will need more integrity language for the betterment towards deaf babies rather than for the capitalism auditory industries.

I think that this bill will either be deleted or passed with added integrity amendments created by the people that know how a deaf baby can be nurtured with a language, not the parrot speech training.

Deaf said...

FYI,

Barry Sewell and Candy knew about Tony Mondoza's problems with his bill and haven't said anything on the blogsphere yet.

And also that Barry Sewell's vlog on this issue was rejected from Deafread recently.

Ann said...

Jodi,

Hi there, you've been busy with your project and understandably so. Way to go, girl!

The state legislature was supposed to pass the 2010-11 state budget bill on June 15 at midnight, the day before the hearing. It is likely that the committee hearings scheduled the following day were postponed so that legislators could concentrate on the budget bill. As it was, the budget bill failed to pass, so that means the legislature will not get its summer break, as it still needs to pass some kind of budget bill before Sept. 30th, the last day the governor can sign any bills into law this year before the Nov. elections. That means there will be some delays for some bills. AB 2072's hearing before the senate health committee was postponed to the 23rd.

BTW, WG's queen bitch to you is actually a compliment. ;)

Keep rockin'

Ann_C

Deaf said...

Jodi,

What I had said about that most of the senators were not comfortable about the bill is a true fact.

And Ann said that "It is likely that the committee hearings scheduled the following day were postponed so that legislators could concentrate on the budget bill"

That was her assumption of why the bill was postponed.

Like I said, be patience and get the truth next week.

Anonymous said...

While I can't comment on why the bill was postponed to 6/23 I would like to give you a link so you can read for yourself.

Tony Mendoza is an Assembly member and proposed AB (Assembly Bill) 2072. It was amended several times before it passed the Assembly and was sent to the Senate where it was referred to the Committee on Health. It was amended there and was scheduled to be heard by the Senate on June 16 but has been postponed to June 23. If passed it will need to return to the Assembly, from there I am not sure but as with any law there are certain procedures that must be followed. You can access the bill and it's status at
http://www.leginfo.ca.gov/cgi-bin/postquery

Just so you know, Tony Mendoza is not a Senate Member, he is an Assembly member.

Deaf said...

Jodi,

Good song to hear

http://www.opposeab2072.com/?p=741

Anonymous said...

Oops, try this link http://www.leginfo.ca.gov/bilinfo.html
The bill is AB 2072

Anonymous said...

Deaf....You did not read carefully...

After I posted "oxoxoxo" at the end of the sentence..what does it mean? Ann_C is right, Atta girl! We just had a party several years ago and you missed it, sorry, Deaf.

As of the Budget crisis...here's the link.

http://www.assembly.ca.gov/acs/acsframeset11text.asp

Ann_C is possibly correct. It must be done by 30 Sep.

White Ghost

Candy said...

Oh boy, I see why you are confused.

Ok, let me try to explain it as short as possible...

AB2072 was written in response to parents who was not told about all options. There were parents in the state of CA who were told about ASL and nothing else! Later on, they found out there are other options that they could have considered.

So, that is why the bill was written. The bill just ensures that parents are not in the dark about all options.

Within OpposeAB2072's site, I found a PDF on DNIA's statement which corroborates with Ella Lentz's video about their work to reform the newborn hearing screening program for three years. That, in my opinion (and more likely the truth), is the reason why the opposition was against AB2072.

DNIA has a dream to create a NEW bill that mandates all deaf babies be taught ASL. ALL babies, no exceptions. Then after these babies are fluent in ASL (probably more than a year later..maybe two), then they will allow parents to add in other modalities..may they be CI, Cued Speech, hearing aids, whatever.

The oppositions are coming up with all kinds of excuses why they are not for the bill. They argue ASL as language acquisition is important. They argue that audiologist should not be the ones to share information on all options, etc etc.

All this bill does is mandate that audiologist informs the parents that the options are ASL, CI, CS, and/or TC. (that would be after the hospital refers them to an audiologist for a follow up hearing screening), then the bill also mandates that Early Start gives out the same info.

That process does not mean the audiologist will be advising parents nor elaborating on each modalities. It just makes them "in the know" about what is available. Parents do not make a choice right there and then because they will do more research on all of it by contacting resources on all modalities.

I hopes this enlightens you.

tina jo said...

Coming up with all kind of excuses? This is not something to take lightly from the lot of you, AB2072 supporters. We (CDNIAS = California Deaf Newborn Intervention & Advocacy Stakeholders) have every reason to oppose as we were NOT receiving the attention we deserve. What really was disturbing is how the State of California hastened this through legislation. AB2072 passed through the Assembly because no one took the time looking into the details of the bill that caters to the goals of special interest groups. Do not let AB2072 deceive you as it did them, the Assemblymembers who supported AB2072!

Problem with AB2072 is since we already have a system with the Newborn Hearing Screening Program resulted from federal legislation, why do the sponsors of AB2072 want to do another program?? All we need is to go back to the drawing board to do a visual outline of our current California system for deaf newborns and identify the "holes" that need attention to close the gaps. We know parents deserve accurate comprehensive, evidence-based, unbiased and balance information about their Deaf babies. Special interest groups who sponsor AB2072 are biased and they control the information parents receive. We see the importance for language acquisition right from birth for EVERY baby, which is an approach that looks at the whole child, not just ears. Deaf babies should be given the SAME opportunity to acquire and develop general language proficiency as early as possible. Language is more than speech, and it is more than listening. This is often where many parents are misled or confused. Our world needs to refocus from fixing the problem to a broader consideration of nurturing the child as a whole individual, emphasizing the importance of the child's mind. Our prime concern is to have new parents on a journey to accept their deaf child, and to understand what it means to raise a deaf child.

Supporters of AB2072 have done everything in their power to marginalize ASL users (and it's been going on for the past 100 years!). Assimilation into society or even enjoying life is not measured by anyone's ability to speak. I do not think you would find that belief acceptable, and a knowledgeable person like you could understand that AB 2072 claims to close the gaps for parents who have just had a newly diagnosed deaf baby, but it does not come close. We ALL recognize the importance of providing information to new parents as part of the Newborn Hearing Screening Program requirement at acute care hospitals, but this is not the bill.

I would like to ask that you find the time to check the home page of this website, www.opposeAB2072.com to learn the reasons of our movement to make changes in ensuring early language acquisition for deaf babies. As one said, "Babies crawl before they walk and sign before they talk," the supporters of AB2072 need to "listen" to the reality of parents before they can learn what is best for Deaf babies!

~ Tina Jo

tina jo said...

So you know who is behind the AB 2072 bill:

California Coalition (sponsors):
CCHAT Center
Echo Horizon School
Jean Weingarten Peninusla Oral School
John Tracy Clinic
Auditory Oral School of San Francisco
Oralingua

American Federation of State, County and Municipal Employees
California Academy of Audiology
California Association of Private Special Education Schools
California Hospital Association
California Speech-Language Hearing Association
American Federation of State, County and Municipal Employees,
AFL-CIO (AFCSME)
Alexander Graham Bell Association for the Deaf and Hard of Hearing
California Academy of Audiology (CAA)
California Association of Private Special Education Schools (CAPSES)
California Association of Private School Organizations (CAPSO)
California Hospital Association (CHA)
California Lutheran University California Medical Association (CMA)
Children Specialty Care Coalition Hearing Loss Association of California
Modern Deaf Communication
National Cued Speech Association
West Coast Cued Speech Programs

Jodi Michelle Cutler said...

Thank you..thank you so much for your comments, but I think I'm just as confused as before- so I'll go read the links generously provided.
I'm interested in anything regarding newborn hearing screening, because here it's a huge mess, so anything useful may still be in time to be incorporated.
I need to read.
White Ghost- you kill me:-) Ann!!!! Good to read you, it's been a long, long time.
Candy- I enjoyed reading your informative posts- the person who gave me the heads up about this bill was very disturbed- your post confused me because I consider you an objective source in all of these discussions- that's why I asked for help.
Thank you all...keep me posted, please with updates..
Love,
Jodi

Dianrez said...

Actually, Jodi, you have an excellent handle on the situation and have expressed it very well. So has Tina Jo here. I'm in favor of a comprehensive program for families at the beginning that leaves out nothing and for Deaf professionals to be included in the multidisciplinary team that works directly with families.

Anonymous said...

Amen Tina Jo & Dianrez!! It is important that parents have a non-objective views/information involving all access to language and to be aware that there are many SUCCESSFUL deaf adults. Too often parents are given grim pictures of deaf individuals who were raised using ASL and therefore, are afraid of the ASL approach.

Still hoping to meet you one of these days. Wish you could come to the World Deaf Nation Expo in Las Vegas, July 18 - 23.

Cheers,
Sharon (aka...Divided)

Anonymous said...

You might want to view Assembly member Tony Mendoza's Youtube video. Keep in mind that the bill has been amended since this was made, it no longer contains the words other related professionals.
http://www.youtube.com/watch?v=RTF_o-crF1M&feature=channel

Anonymous said...

Tina Jo, Dianrez,

Who or what the 'California Deaf Newborn Identification Advocacy' I have no idea. CDNIA / DNIA are mentioned in many letters against AB 2072. Please give links to this / these organizations. Would also like to know who is in support of them and who their members are.

tina jo said...

Yes, it's all on www.opposeAB2072.com

Anonymous said...

Tina Jo,

What's all there? Who are CDNIA ? DNIA, what is there mission? Give links directly to them please, not just references that they exist.

Deaf said...

to anonymous,

you may be anonymous but we know that you are one of the deaf Detractors.

I suggest you learn more about the whole shebang of who is behind this AB2072 Bill with the help of Oberkotter Foundation that discriminates American Sign Language and Deaf culture.

tina jo said...

CDNIAS and DNIA are the same group: California Deaf Newborn Intervention and Advocacy Stakeholders. It's hard to compose from my pager. The link www.opposeAB2072.com is the direct link wheree you find "Who Are We" and see letters of opposition as well. This shud answer ur inquiries

Anonymous said...

Deaf,

I certainly an not a deaf Detractor. I am, however honestly and earnestly trying to educate myself. I have spent many hours reading both sides of this bill. I am for the best education possible. I will continue to read and try to understand ALL sides of this issue.

Tina Jo,

Thank you for the link. I will spend some time reading. Just wondering, since this is an appose AB 2072 link, is there some other source for them?

Candy said...

Tina Jo,

Why is the DNIA statement no longer on opposeAB2072 website?

I think Jodi would see that DNIA statement is NOT objective.

Trust me, Jodi, DNIA is not being fair. DNIA wants to create a new bill that forces ALL deaf baby to learn ASL first. They will allow CI and other modalities later on after the baby is fluent in ASL.

Whereas AB2072 just simply tell parents what options are available. It ensures that parents will not be in the dark about what options are available.

You decide. But, knowing you, I know you are all about the right of parents to choose.

P.S. If you want a clean PDF copy of CA DNIA statement (their plan to create a bill that forces ASL on all babies), let me know. I'll be happy to send it your way. For some reason, they removed it from their site. (And, if they say they didn't but hid it in another hard to find spot, then my apologies..)

Candy said...

Tina Jo,

You said "why do the sponsors of AB2072 want to do another program?"

This bill is NOT another program. It is just an ADDITIONAL first step that mandates Audiologists and Early Start to simply tell the parents: Hey! options are ASL, CI, CS and TC. That is all..it is not a program but rather an information sharing without getting into details about the options. Ya know...like these ad campaigns we see on these AD Billboards across America. hmmm Jodi, do they have these in Italy? The billboards, I mean. ;)

tina jo said...

AB2072 is NOT an additional 1st step, Candy. This bill erroneously assumes families are not getting info on communication options. Only thing AB2072 does differently is it takes away the POWER from Deaf consumer groups and the STATE MANDATE. We have Newborn Hearing Screening programs (NHSP) that provide packets of info and listings of local services/resources to families. We have the California Early Intervention Services Act to see that CA provides a system. This bill interferes with the law requiring parents be provided with info from state governmental entities, CA Dept of Education, Dept of developmental Services, Dept of Social Services and the Deaf Access Assistance, local providers similar to the Early Start program (which in CA serves babies from birth to 36 months). A better bill would go back to the drawing board to outline the current system and identify gaps that need to be filled.

AB 2072 bypasses OUR state's existing wealth of info and resources. Because the original wording of the bill didn't do enough to specify the information provided, it now points to National Institute on Deafness and Other Communication Disorders (NIDCD) which conducts and supports biomedical research. NIDCD fact sheets are NOT current except ones on cochlear implants. NIDCD does not identify local resources nor provide accurate and comprehensive info about ASL.

Candy, you are often saying this bill isn't about what works, and I’ve wondered why you would think it isn't important to ensure the information given to parents is the best information, and that the information should indeed include all of the things that work for deaf babies. I am also clear that your mind is set about CDNIA, and you are against the beliefs that are listed in what I would call a mission statement or "vision." You also repeatedly include information in your comments about parents who only got information about ASL. While I am not going to debate you on that, most people can easily imagine that scenario is pretty rare. We ALL know many, many parents who never got information about ASL.

There should be deaf-centered information available to parents. Yes, it is true that all deaf babies would benefit from sign language from birth on. However, no one, no one in the opposition is against parent choice. In a "medical model" world ASL, while proven to help language acquisition--including spoken language is NOT fairly represented.

It would be wonderful to get rid of the inherent attitudinal barriers that exist in our world. To reframe "Deaf" to mean positive outcomes not negative. This will remove the mindset that "to be Deaf is to fail."

AB 2072 has not been inclusive. We all need to come together to advocate as colleagues rather than adversaries to see the state ensures all stakeholders be involved as a TEAM to implement/elaborate on WHAT, HOW or WHO will create, print, disburse, and pay for materials for parents' #1 guide about "parenting" Deaf babies. Parents need to see communication starts the moment their baby is born, and let the baby know this message, "I love you." Parents need to see how they make special connections through communicating before even thinking about "fixing" their babies ears.

To close this, Candy, as we ALL support parents to be FULLY informed, and so we oppose AB2072.

tina jo said...

AB2072 is NOT an additional 1st step, Candy. This bill erroneously assumes families are not getting info on communication options. Only thing AB2072 does differently is it takes away the POWER from Deaf consumer groups and the STATE MANDATE. We have Newborn Hearing Screening programs (NHSP) that provide packets of info and listings of local services/resources to families. We have the California Early Intervention Services Act to see that CA provides a system. This bill interferes with the law requiring parents be provided with info from state governmental entities, CA Dept of Education, Dept of developmental Services, Dept of Social Services and the Deaf Access Assistance, local providers similar to the Early Start program (which in CA serves babies from birth to 36 months). A better bill would go back to the drawing board to outline the current system and identify gaps that need to be filled.

AB 2072 bypasses OUR state's existing wealth of info and resources. Because the original wording of the bill didn't do enough to specify the information provided, it now points to National Institute on Deafness and Other Communication Disorders (NIDCD) which conducts and supports biomedical research. NIDCD fact sheets are NOT current except ones on cochlear implants. NIDCD does not identify local resources nor provide accurate and comprehensive info about ASL.

Candy, you are often saying this bill isn't about what works, and I’ve wondered why you would think it isn't important to ensure the information given to parents is the best information, and that the information should indeed include all of the things that work for deaf babies. I am also clear that your mind is set about CDNIA, and you are against the beliefs that are listed in what I would call a mission statement or "vision." You also repeatedly include information in your comments about parents who only got information about ASL. While I am not going to debate you on that, most people can easily imagine that scenario is pretty rare. We ALL know many, many parents who never got information about ASL.

There should be deaf-centered information available to parents. Yes, it is true that all deaf babies would benefit from sign language from birth on. However, no one, no one in the opposition is against parent choice. In a "medical model" world ASL, while proven to help language acquisition--including spoken language is NOT fairly represented.

It would be wonderful to get rid of the inherent attitudinal barriers that exist in our world. To reframe "Deaf" to mean positive outcomes not negative. This will remove the mindset that "to be Deaf is to fail."

AB 2072 has not been inclusive. We all need to come together to advocate as colleagues rather than adversaries to see the state ensures all stakeholders be involved as a TEAM to implement/elaborate on WHAT, HOW or WHO will create, print, disburse, and pay for materials for parents' #1 guide about "parenting" Deaf babies. Parents need to see communication starts the moment their baby is born, and let the baby know this message, "I love you." Parents need to see how they make special connections through communicating before even thinking about "fixing" their babies ears.

To close this, Candy, as we ALL support parents to be FULLY informed, and so we oppose AB2072.

Candy said...

Tina Jo,

How does it interferes or takes away from what CA already has in place? The bill does not interferes nor takes away anything that is already in place. That is the misinformation you are spreading.

Whatever is in place currently, will remain intact. Show me where in the bill that states that all the programs CA has will be taken away? nothing. nada.

Jodi Michelle Cutler said...

Thank you for your comments, dialogue and links- Jordan has his middle school oral exam today and we've been preparing- so I haven't had time to visit the links...hope to post something later. Hugs and thanks you all of you for keeping me informed...Jodi