Update on Contact the ASDC!
A couple of individuals left a comment here about Hands and Voices.
Newborn hearing screening is now mandatory but we are finding gaps in the follow up procedures. Parents are sometimes not getting the results of the testing or they are not following up with another test with a pediactric audiologist. We also have no standards for providing non-biased access to all of the options. Hands & Voices has a program called Guide By Your Side that pairs up an experienced parent trained to provide non-biased support with a parent of a newly diagnosed baby. We are working to get this set up in states that want this approach. This program includes deaf and hard of hearing mentors that interact with families as well. More info can be found on www.handsandvoices.org. - Karen
So I propose that we contact Hands and Voices as well to see if we can encourage them to coordinate with American Society for Deaf Children and Gallaudet!
We do need stardards for providing non-biased information to the parents and I believe the best way to accomplish this is to have various organizations working together to accomplish this! I also propose that we make it a federal law for hospitals to provide non-biased, accurate information to parents upon discovering that their child is deaf.
Why federal? Because that’s the minimum the states have to follow!
Let’s send in emails to Hands and Voices, and ASDC to see how this goes!
~ Deaf Pundit
Hiya DP…can you leave the contact info for Hands and voices? Perhaps an email or a link we can go to to post our letters? Thx!
Oh jeez….I guess I really NEED some serious caffeine! Missed the website addy…sigh! sowwy abt that!
Who is going to decide what is “unbiased”? Does this mean that you will also be willing to give parents information about oral only programs without any negative comments?
Hi Me:
I think we should, yes. It’s the only way to guarantee nothing is biased. And they’ll (the parents) look anyway, so why hold anything back? Hey, new idea: what if the site were community-driven like Wikipedia? But with a catch, you can’t change the content without first backing up your claims with research. For example if someone says that cochlear implants don’t work AT ALL, someone can counter that by showing a 40% success rate in the research, and in someone says exposure to ASL doesn’t help at all, someone else can counter that claim by showing research that shows significant literacy gains with early ASL exposure.
The site will finally settle upon the claims that are backed up by research.
See what I’m driving at? So we do away with bias in two ways… one, provide ALL options, and two, provide community-driven valid research.
PS that kind of thing provides incentive to do the types of research that counter claims of the “opposing” camp. If you’re a researcher and you believe the CI “success” rate of 40% is invalid, then don’t just do research that counters the claim and publish it in some journal that sits on a library shelf for the next ten years. Publish it and then submit it to the site so it’s community-driven… constantly pushing it forward by filling in gaps and challenging claims. Then parents get the most up-to-date stuff, and they know exactly what questions we CAN answer, and what questions we CAN’T.
That outta put a stop to any one camp selling only “Their” answers at the expense of other answers.
Thats the whole point of this experiement. We want to see that everything and all things are out there for the parents…allow them to pick and choose how they want their deaf child to be educated. Doesn’t matter how…important thing is EVERYTHING is on the table for them to see…
Correct me if I’m wrong DP…but that’s my understanding
Nope, you’re absolutely on target here Vikee.
Regarding leaving out Gallaudet, I think that would be a mistake not to use Gallaudet’s Research Institute. Gallaudet knows a lot of people who can help us set this thing up and get moving. Just my thoughts.
Clarification on my GRI Comment: Gallaudet has a lot of research we could also use in informing the parents of all available options, the statistics on whatever option, and so on. That’s why I think we should involve Gallaudet.
Regarding the wiki comment, I think that would be a great idea. That’s a free database an organization could use to provide non-biased, research-based information! Chris, did you hear back from ASDC or Hands and Voices? I’m very interested in seeing if they’re willing to work with us on setting up a site like this.
And again, I also would like to see a nation-wide effort to close the gaps in the follow-up procedures after the infant screening. It’s usually the doctors who have the first contact with the parents, and the doctors of course, the majority of the time, have a pathological view.
So, I would like to see a law passed that the doctor has to refer the parents to a neutral person to provide them with the information and the website would tie in perfectly with that.
This has the potential to be HUGE! Let’s think BIIIIIG, people.
I just did some looking around, and I found this website: http://www.ndepnow.org/
Quote from their site:
Perhaps this is the RIGHT organization for us! Thoughts on this?
It isn’t meant to sound discriminating if what I will say, all white deaf people in the list of names include- Chris Heuer, Vikee, Deaf Pundit, Wildstarryskies, Curious Eyes and Virginia L. Beach.
non Attacking personally
I wonder if all white people encourage us to believe something like a trick on us when What I know is Chris who has many good ideas about something challenge, but I saw Chris appeared to mentioned “option” here being the option of getting a CI, enrolling a kid in a Bi-Bi environment, etc…” He is still obsessed with Bi/Bi.
gally grad is a good post that I like.
I am a deaf Hispanic. I support sign language and voice. That’s why I can’t stand not using my voice and speaking Spanish although I love Spanish sign language because I was born Spanish. In America, It disappointed me to lose my Spanish language, in view of the fact that I don’t communicate with other deaf who use Spanish language. It hurts me.
I am living happy, and there is a large number of Hispanic people in Florida.
Can Robert Davila speak Spanish?
What trick would this be? I don’t understand what you mean about that.
Anyone is welcome to join us in this effort. The purpose of this effort is to force doctors and the social services in general to provide unbiased, research-based information. If you look above at my most recent post, you’ll see there is a concerning trend for doctors not to provide complete and accurate information.
I have my own biases, and I’m sure everyone else does also. But the fact still remains, there is a serious lack of non-biased information for parents to easily find, so they can make their own decisions. If a parent reads all of the information there is, and still places their child in an oral program, then I would respect that decision.
“Chris, did you hear back from ASDC or Hands and Voices? I’m very interested in seeing if they’re willing to work with us on setting up a site like this…”
Not yet, no…
Perhaps calling them on the phone will work better than sendng emails.
Heh look at this… just popped up at the top of DeafRead… talking about the same thing…
Supporting Families Without Bias– The Hands &…
She (Karen) seems involved with the Hands and Voices group… I wonder if she saw any emails…? Some people said they were going to contact HAV…
She posted on this blog, Chris.
From what I read on their website, deaf and hard of hearing adults are welcome to join their organization. And they are sponsors of the National Deaf Education Project (NDEP).
So…. This is starting to look like the ideal organization to get your idea up and going. I think it’s best that we send e-mails to them, but not anonymously.