[Diabetes-Talk] AIRA & pump questions

Tue Jul 2 14:34:58 UTC 2019

Again, I don't know who is all on the DAN board now, but perhaps this needs to be a priority discussion at convention and talks of revitalizing the task force again need to be pushed by DAN with the national board.

Bridgit

-----Original Message-----
From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of Veronica Elsea via Diabetes-Talk
Sent: Thursday, June 27, 2019 5:01 PM
To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
Cc: Veronica Elsea <veronica at laurelcreekmusic.com>
Subject: Re: [Diabetes-Talk] AIRA & pump questions

There have been discussions in both groups, sort of. But the questions are complex. Defining accessible equipment, how to mandate it when they're private companies, and the fights over statistics which could show how much of a minority we are. It's a real problem because of the profit motive in medicine today. Last year we were starting to look at tying accessible to programs like Medicare and the VA. If you want a contract, it must be accessible, kind of thing. But they've been afraid of Congress so far. The ACB is demanding it but you have to have the complete process, not just a whine. Everybody has passed resolutions at conventions saying we want this, but that rarely causes real legislative action, in my opinion. But I wish they'd make it more important. The ACB is apparently focusing on making the Dexcom receiver accessible because ya know, blind people can't afford iPhones. So they're going after the one company that actually does have an accessible option and skipping the things that don't. It's tough to totally focus on a single product because by the time we get it sorted out, it will be no longer in use. <grin> We did have this discussion in the task force last year. 
Anyway, not much in the way of concrete answers, but just my thoughts at the moment.
Veronica

"Guide Dogs, First Hand", Veronica Elsea's classic album is now available on iTunes, along with other music from her and from the Guide Dog Glee Club. 
To learn more, visit:
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                Veronica Elsea, Owner
Laurel Creek Music Designs
Santa Cruz, California
Phone: 831-429-6407

-----Original Message-----
From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of d m gina via Diabetes-Talk
Sent: Thursday, June 27, 2019 12:23 PM
To: diabetes-talk at nfbnet.org
Cc: d m gina
Subject: Re: [Diabetes-Talk] AIRA & pump questions

How do we get it done?
This is where I know both organizations would work together.
There are as many diabetics in the acb as well as nfb.
I just felt if we had proof that something was written companies won't help becaue of ira then national presidents would start to step on ears.
We could share how a voice chip could be added to the pumps and this would help out allot.
Coming off the shelf.
Just my thoughts.
As we say the game is over

Original message:
> Dar, very good question. Unfortunately, the reason nobody has taken 
> these companies to court is because there is no law mandating 
> accessible medical equipment. If there's a problem with a web site, a 
> building, there are codes one can readily quote if there's a violation.
> There just isn't anything for accessible medical equipment. Of course, 
> the question, why not? Good question. Hasn't been done.
> Veronica

> "Guide Dogs, First Hand", Veronica Elsea's classic album is now 
> available on iTunes, along with other music from her and from the Guide 
> Dog Glee Club.
> To learn more, visit:
> http://www.laurelcreekmusic.com
>                 Veronica Elsea, Owner
> Laurel Creek Music Designs
> Santa Cruz, California
> Phone: 831-429-6407

> -----Original Message-----
> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf 
> Of d m gina via Diabetes-Talk
> Sent: Thursday, June 27, 2019 11:17 AM
> To: diabetes-talk at nfbnet.org
> Cc: d m gina
> Subject: Re: [Diabetes-Talk] AIRA & pump questions

> My question again is this,
> After you get done with the pumps you have, I read that new pumps won't
> have anything for the blind to use,
> if this is correct, then why isn't national nfb or acb working together
> to take companies to court.
> I also want to have something in email from a company that is saying,
> Since you have ira you don't need us to put anything on a pump for the blind.
> I will keep reading.

> Original message:
>> Dar, it's not separate but equal. As someone once said to me, we need
>> to use every tool in the toolbox, and I would agree that if I am not
>> dressed and using a pump I don't want to be on camera. But nothing is
>> exclusive. For some, for now that may be the only choice.

>> Jeanette

>> -----Original Message-----
>> From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf
>> Of Dar via Diabetes-Talk
>> Sent: Wednesday, June 26, 2019 2:45 PM
>> To: Diabetes Talk for the Blind
>> Cc: Dar
>> Subject: Re: [Diabetes-Talk] AIRA & pump questions

>> From what you are saying is no new person can get a pump if they are
>> blind   If I am correct, this is what we should fight for, not worry
>> what ira does or doesn’t do.

>> Always remember with nfb you start with $21 for 30 minutes and can add
>> 50 minutes more if you wish.
>> I am pleased it is here and I make the choice to use it

>> I would love to know the companies who know about ira and wish not wish
>> to help diabetics

>> I would like to know why Mark from nfb is not taking them to court

>> Dar
>> Every saint has a past,
>> Every sinner has a future

>>> On Jun 26, 2019, at 11:50 AM, Eileen Scrivani via Diabetes-Talk
>>> <diabetes-talk at nfbnet.org> wrote:

>>> Bern,

>>> You make a good point in that AIRA is something that not all of us can
>>> afford. Even if I could see myself clear of spending that kind of money
>>> every month for the service, I would not use it for controlling my
>>> insulin pump functions. Yes, I too am in a half state of undress when
>>> working on my pump and aside from modesty issues, nor would I trust a
>>> stranger unfamiliar with the workings of insulin pumps on the phone to
>>> assist me in altering any settings of any type on my pump.

>>> Where you and I disagree is that the day has come that pump
>>> manufacturers “must” make adaptations of some type on the pumps they
>>> currently have on the market. We will all be in an extreme, bad place
>>> when next our warrantees are up. Something needs to be done pronto!

>>> Eileen

>>> From: Bernadette Jacobs via Diabetes-Talk
>>> Sent: Wednesday, June 26, 2019 12:50 PM
>>> To: Diabetes Talk for the Blind
>>> Cc: Bernadette Jacobs
>>> Subject: Re: [Diabetes-Talk] AIRA & pump questions

>>> For those of you who use AIRA, I’m leaving all this up to your discretion.

>>> As Sandy and Bridget both indicate, AIRA is just another tool.  I agree
>>> tht as long as we have things like AIRA, and “Be My Eyes,” The pump
>>> makers out there won’t be forced to do what they really ought to do in
>>> the first place.  It’s not like others haven’t made their products
>>> accessible.  Things like AIRA and Be My Eyes can simply be used as
>>> scapegoats.  Then, as Veronica has also indicated, when using and
>>> setting up the pump, most of us are at least partially undressed.  I,
>>> for one, am not into posing nude for any camera.

>>> Quite frankly, AIRA is cost-prohibitive for our family.  Not gonna
>>> happen here.  I’ll let them speak to my seminar.  But, they own’t get
>>> me to purchase it.  No can do.

>>> Sent from my iPhone

>>>> On Jun 24, 2019, at 11:01 PM, Bridgit Kuenning-Pollpeter via
>>>> Diabetes-Talk <diabetes-talk at nfbnet.org> wrote:

>>>> Yep.

>>>> -----Original Message-----
>>>> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of
>>>> sandi via Diabetes-Talk
>>>> Sent: Monday, June 24, 2019 9:30 PM
>>>> To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
>>>> Cc: sandi <sjryan2 at gmail.com>
>>>> Subject: Re: [Diabetes-Talk] AIRA & pump questions

>>>> Well said, my friend! Aira is a tool, but it’s neither the best nor the
>>>> most effective tool we could have. Most of the things it’s good at are
>>>> things that could be accomplished in other ways, many of those ways
>>>> better than this rather expensive, not-always-effective service.

>>>> Sandi

>>>> Sent from Mail for Windows 10

>>>> From: Bridgit Kuenning-Pollpeter via Diabetes-Talk
>>>> Sent: Monday, June 24, 2019 8:32 PM
>>>> To: 'Diabetes Talk for the Blind'
>>>> Cc: Bridgit Kuenning-Pollpeter
>>>> Subject: Re: [Diabetes-Talk] AIRA & pump questions

>>>> AIRA isn't the best way to make us independent. It's 24/7 help, but
>>>> it's still sighted help for things that mostly could be made accessible
>>>> in a way that blind people could do it without any sighted help. Forms
>>>> can be formatted for online use; websites can be made accessible;
>>>> devices can be accessible, etc. Sure, until companies get a fire lit
>>>> under them, AIRA is here, but what's the incentive for companies to
>>>> work on accessibility when services like AIRA exist? It's a catch 22.
>>>> We need accessibility now, but now that we have AIRA, companies no
>>>> longer think they need to think about accessibility.

>>>> -----Original Message-----
>>>> From: Diabetes-Talk <diabetes-talk-bounces at nfbnet.org> On Behalf Of d m
>>>> gina via Diabetes-Talk
>>>> Sent: Monday, June 24, 2019 8:05 PM
>>>> To: diabetes-talk at nfbnet.org
>>>> Cc: d m gina <dmgina at mysero.net>
>>>> Subject: Re: [Diabetes-Talk] AIRA & pump questions

>>>> Joyce,
>>>> I won't be at convention,
>>>> Mike Henson wrote to me on ira list sharing that what we can't read,
>>>> ira is there for us, and does help us stay mobile in anything we want to do.
>>>> At no time does it make us less independent, if anything it makes us more.
>>>> I do hope and know we will do our best to try to et companies to put in
>>>> a chip for talking meeters.
>>>> If they can do it for devices then what is one more device.
>>>> Do let us know how the conversation works out.
>>>> Thanks again,

>>>> Original message:
>>>>> When this topic came up there seemed to be some chatter along with

>>>> So... In my opinion, it's not the best tool to give us independence.
>>>> True independence would be possible if companies gave a shit (excuse

>>>> BTW, this is not a negative comment on AIRA but on society in general.

>>>> Bridgitmy French) and worked to make products and devices accessible.
>>>> And now with AIRA, it's not as likely they will.
>>>>> opinions regarding the use of AIRA with a pump.  I said I would make
>>>>> contact with AIRA and I did.

>>>>> I contacted Glenn Takemoto, , Account Executive andhe told me that
>>>>> there has been some mention of insulin pumps.  He told me he would be
>>>>> at Convention in Vegas and he would be interested in speaking to some
>>>>> of the people who have been working for us blind Diabetic pump users
>>>>> to get insulin pumps accessible.

>>>>> If anyone is interested in making contact while at Convention, please
>>>>> send me a note off list and I will send you my conversation with him.

>>>>> Joyce

>>>>> _______________________________________________
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>>>>> sero.net

>>>> --
>>>> --Dar
>>>> skype: dmgina23
>>>> FB: dmgina
>>>> www.twitter.com/dmgina
>>>> every saint has a past
>>>> every sinner has a future

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> --
> --Dar
> skype: dmgina23
>   FB: dmgina
> www.twitter.com/dmgina
> every saint has a past
> every sinner has a future
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-- 
--Dar
skype: dmgina23
  FB: dmgina
www.twitter.com/dmgina
every saint has a past
every sinner has a future
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