Urgent! Deadline 8/27

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MaxEidswick

Legendary member
Joined
Sep 1, 2013
Messages
5,598
Reason
PALS
Diagnosis
08/2013
Country
US
State
Texas
City
Pinehurst
Only 48 Hours Left to Help Save SGD Coverage

Dear Max,

We need your help to preserve Medicare coverage for speech generating devices (SGDs) and related eye-tracking technologies that enable people with ALS to utilize SGDs. Please contact your Senators and Representatives today and ask that they sign onto the SGD Dear Colleague letter that began circulating last week in the House of Representatives by Reps. Cathy McMorris Rodgers (R-WA), Erik Paulsen (R-MN) and John Tierney (D-MA) and in the Senate by Senator Susan Collins (R-ME).

This year the Centers for Medicare and Medicaid Services (CMS) have taken several different actions that deny people with ALS timely access to the SGDs that meet their specific medical needs. These actions fundamentally change long-standing coverage policy and significantly limit what technologies are available to people with ALS. Specifically, CMS has:
• Prohibited coverage for SGDs that include non-speech technologies such as email, internet access and environmental controls;
• Routinely begun to deny coverage for eye tracking; and
• Implemented a "capped rental" payment system that requires people with ALS to first rent SGDs for a period of 13 months before owning the device. If a person is admitted to hospice, a hospital or a nursing facility during the rental period, Medicare payment for the SGD will cease.

The ALS Association has been working with CMS, Members of Congress and other stakeholders for nearly a year to fight these policies; however, CMS has failed to make any changes and people with ALS could be forced to go without the SGDs they need.

Therefore, please contact your Representative and Senators today! You can send an email to them directly from the Advocacy Action Center of our website here: http://capwiz.com/alsa/home/. Urge them to sign the SGD Dear Colleague today and help give a voice to people with ALS who have been robbed of the ability to speak. The deadline for signing the Dear Colleague is August 27, so please contact Congress today!

Additional information about the changes CMS has made can be found here.
 
Thanks Max I pulled this out into a separate thread for maximum visibility. Poorly as some of our efforts were received before we need to keep trying. This is easy to do!
 
.>I pulled this out into a separate thread for maximum visibility. Poorly as some of our efforts were received before we need to keep trying. This is easy to do!

thankfs, I put it up on fb too
 
Awesome! Thanks!
 
Done. Thanks.
 
copied and shared to FB. thanks for the reminder Max. I did this months ago BUT now with all the ice bucket awareness perhaps people will hear us!
 
This is actually a slightly different request on same issue. 3 representatives and a senator are circulating a letter in support of modifying the new regulation. This is asking your delegation to sign the letter we all need to do this one in the hope it will get through the message. If you live in Maine or in the district of the 3good guys/ girls reps consider sending them a big thank you!
 
Bumping to keep visible!
 
Sent email earlier to Senator Marco Rubio, R-FL, and today got an email back thanking me for contacting him about Multiple Sclerosis. ? Never mentioned MS. Tried to contact him again today but get a server error message. Called his office and couldn't get through to a live person. I'll try the email contact again later.

BK
 
At least he is talking about a disease, Senators from Texas dont give a damn Cornyn just wants to bash democrats and Cruz is only interested in border security
 
Well I sent the letters-for reference Cornyn has voted against ALSA supported policies so he really does not care.
 
Please do this today if you have not. Remember, this is different than the link in the other thread and asks them to take a specific action
 
Done! Sent my letter to Marco Rubio also. Maybe he'll figure out what this disease is.
 
Also done! Thank you so much for posting this for us!
 
This link makes it so easy to do, thank you again for sharing this!
 
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