[Diabetes-Talk] Fw: [Nfbnet-members-list] Promoting AccessibleMedical Technology for the Blind

Thu Jan 4 01:13:31 UTC 2018

Amen, Veronica. Action! It’s needed now!

I have not heard about this new initiative. I’m glad the entire organization seems to ask to get involved in this issue. I certainly hope diabetes tools and technologies are key among the medical devices, since this is the disease with the most technology available, none of which is absolutely accessible. And the most work to make medical devices accessible has been done by people with diabetes. But there truly are few, if any, medical devices that are accessible to disabled, especially blind, people, and it’s high time they all got accessible so we can take care of our health, whatever its issues, just like everyone else. 

I share your worries that these two gentlemen have no experience with medical devices—or at least little. John Pare assigned Dylan Hedtler-Gaudette to work with the DAN Board on accessibility in late August or early September, I think it was. I’m no longer on the board but was included in the initial conversation with him, because of my history with this issue. Bernie was to meet with him sometime recently, and I’ve not heard about that meeting. 

I do not know Eric Duffy, though I’ve seen his name at the National Office for some time. Dylan, I believe, is very new.

I just found out over the holidays that my oldest son is now Type 2. My younger son has been Type 2 since he was in his 20s. Neither is blind, but if they become blind, I certainly don’t want them to die young because they have to give up their treatments because they’re not accessible! For all of us and all those who will come after, we must deal with accessibility now!

Sandi

Sent from Mail for Windows 10

From: Veronica Elsea via Diabetes-Talk
Sent: Wednesday, January 3, 2018 6:50 PM
To: 'Diabetes Talk for the Blind'
Cc: Veronica Elsea
Subject: Re: [Diabetes-Talk] Fw: [Nfbnet-members-list] Promoting AccessibleMedical Technology for the Blind

Oh I completely agree with you Eileen and Cindy. I think I've just watched so many resolutions that did nothing, groups that didn't want suggestions and am ready for serious work with results. Maybe I'm looking for something that says more like, here's our direction, want to help or participate? I realize it's probably not what's intended but it kind of felt like a note from a name I didn't know that says, tell me a story and I'll take care of it for you, which isn't likely to happen. <grin> I'd just like enough specifics so that I don't feel like I'm wasting my time writing up yet another list of my history, that's all. <grin>
I'm really happy for an effort. I don't care who gets the credit. I want the result. Pretty much the story. 
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 Eileen Scrivani via Diabetes-Talk
Sent: Wednesday, January 03, 2018 4:09 PM
To: Diabetes Talk for the Blind
Cc: Eileen Scrivani
Subject: Re: [Diabetes-Talk] Fw: [Nfbnet-members-list] Promoting Accessible Medical Technology for the Blind

Hi Veronica,

Your point is taken. On the other hand, at least it is something and perhaps, finally, the organization of the NFB will help to do something that will move things in the right direction for us diabetics who are on the outside looking in when it comes to all of the newest, latest and greatest devices and technology to help manage diabetes -- at least for those diabetics who are sighted. Let’s not infight, but come together as a group to try and get something done for our benefit. Yes, I’m at the point of just wanting something, anything moving on this stuff. I’m tired of not having choices for managing my health and have coverage when I need a special adaptation to make something work.

Eileen

From: Veronica Elsea via Diabetes-Talk
Sent: Wednesday, January 3, 2018 5:30 PM
To: 'Diabetes Talk for the Blind' 
Cc: Veronica Elsea
Subject: Re: [Diabetes-Talk] Fw: [Nfbnet-members-list] Promoting Accessible Medical Technology for the Blind

I also received this message and it struck me a little odd.
I hope this is something real but why didn't they say something about working with the DAN affiliate rather than just collecting a bunch of individual message. I'm just a bit leary of someone starting a project who knows nothing about the real issues with various medical devices. I get that some sort of task force was being created or something but it did concern me a bit. 
I have just written so many messages to so many people in NFB with no obvious result that I'm looking for more detail before doing it again. Like I said, I want something real. Thanks.
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 Eileen Scrivani via Diabetes-Talk
Sent: Wednesday, January 03, 2018 2:24 PM
To: NFB Diabetes Talk
Cc: Eileen Scrivani
Subject: [Diabetes-Talk] Fw: [Nfbnet-members-list] Promoting Accessible Medical Technology for the Blind

Hello All,

I got the below very interesting message this afternoon. I already wrote to Eric Duffy and hope the rest of you who want to see accessibility and more access to medical devices that will make manageing our diabetes better and easier will do the same.

Eileen

From: Hedtler-Gaudette,Dylan via NFBNet-Members-List
Sent: Wednesday, January 3, 2018 1:29 PM
To: nfbnet-members-list at nfbnet.org
Subject: [Nfbnet-members-list] Promoting Accessible Medical Technology for the Blind

Greetings fellow Federationists!

I hope and trust that you all had a wonderful holiday season.

President Riccobono has asked us to prioritize a number of important initiatives in 2018. I am writing today to share with you that the National Federation of the Blind is jump starting its work aimed at addressing the critical issue of accessibility and medical technology and devices. Although this will be coordinated from the NFB Jernigan Institute, it will require the participation and collaboration of Federationists around the country. 

As far too many of you know all too well, the lack of accessibility when it comes to vital medical equipment can be inconvenient at best but dangerous and risky in many cases. We are therefore creating the Accessible Medical Technology Working Group (AMT-WG), which will be tasked with investigating concerns, devising strategies and making recommendations to President Riccobono. 

We will need your help as we get started. In order to focus our work and direct our energies appropriately, we are requesting feedback from you that will let us know what issues are being encountered as a result of inaccessible medical technologies and devices. You do not need to share any personal or private information; we are only looking for the names of devices and technologies that pose accessibility challenges, that way we can channel our attention to where it is needed most. Please be sure to be specific about what aspects of the device make them less accessible. We would also appreciate you letting us know about any medical technology or devices that are accessible so we can refer to those as positive examples of how accessibility can be done right in this space. 

If you have any feedback to share or ideas as to what types of medical technologies and devices need to be a part of this initiative, please send your responses to Eric Duffy at eduffy at nfb.org and Dylan Hedtler-Gaudette at dhedtler-gaudette at nfb.org.

Thank you all for your help as we get this project started. Your contributions will be invaluable and we look forward to making progress together in the area of accessible medical technology in 2018!

Sincerely,

Eric Duffy, Director of Access Technology

Dylan Hedtler-Gaudette, Government Affairs Specialist 

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