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rknt50a

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Lost a loved one
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An ALS advocate stumbled across something earlier this week that has several of us concerned.

Effective April 1, 2014, the Medicare CMS rules for Speech Generating Devices (SGDs) are changing. They are being classified as durable medical equipment that will fall under a “capped rental rule.” The taxpayer in me didn’t get too upset until we found out some of the implications. Medical devices will be rented for 13 months. Here are some of the gotchas that we think are of concern. (If I’m wrong on any of these, I’m all ears.)
  • •The kinds of device and technology such as the setup Steve Gleason had in the Super Bowl ad will not be allowed because they are not strictly medical devices. God forbid that you should access the internet.
  • •It’s a one-and-done for you. If you live long enough for some stellar new $500 technology to make your 13-month device obsolete, too bad.
  • •If you go into a hospital or move into a hospice during the 13 months, your device will not go with you. CMS assumes that the facility will have whatever you need. Right.
There was a comments period to give feedback to Medicare CMS on the rules changes last year. I had no idea. Unfortunately we didn’t get in front of the rule changes.

Here are a couple of action items that I’m aware of. If anyone knows of any others, please let us know.

Action 1. There is a petition sponsored by the AAC Institute that is trying to gather signatures to object to the rule change. It explains things well. I hope that you will consider adding your names and spreading the word. https://www.change.org/petitions/congress-white-house-centers-for-medicare-and-medicaid-services-request-that-speech-generating-devices-sgds-are-exempt-from-all-rental-requirements-and-remove-sgds-from-the-capped-rental-rule-that-takes-effect-april-1-2014?recruiter=86717921&utm_campaign=mailto_link&utm_medium=email&utm_source=share_petition

Action 2. There is some proposed legislation that could move Speech Generating Devices as well as Power Wheel Chairs out from Medicare’s durable medical equipment rules (thus escaping the April 4 rule change). This complex medical equipment that is highly technical and personalized just doesn’t fit rules written for bedpans and commodes. The MS Society has excellent information on this and they have an action page to submit requests to your legislators. I their letter can be changed easily to make it about ALS (with thanks to the MS Society for being on top of the issue). I submitted one to my Representative and Senators. Here is the link Complex Rehab Technology : National Multiple Sclerosis Society




Some really good ALS advocates have been trying to sort through what seems to us to be an urgent issue. Thanks if you would review those two action items above and chime in by submitting support and asking your friends and family to do likewise.

And if you know more or different information about the issue, we would appreciate the insights.

ALS Hope Foundation has been supportive of the concerns. We’ve not heard a peep from any other ALS organizations.

It’s time to raise some Cain. Thanks.
 
Thank you for sharing this
 
Maybe this will bring down the outrageous prices of the eye tracking equipment. DME suppliers make out like bandits because Medicare is not allowed to negotiate with them for competitive prices. As long as they get to jack up prices to Medicare, there is no incentive for them to make the equipment affordable for the individual to purchase. I don't need it for speech yet, but my mouse use is getting down to nearly impossible. I certainly can't afford $1,000's for MyTobii!
 
Thanks for sharing--this is disturbing for existing pals and cals as well as the unfortunate future generations. we should all get with it and send some letters.



Ok, just clicked your link and edited the letter for ALS and off it went to my senator and rep.

That was very easy!
 
Thanks for posting this. I just sent email to our congressional people. It will probably not help too much because at least one of them is a Tea Party nerd and one senator is fairly conservative.

Rick
 
In my opinion, these changes are the kinds of things that are more costly in the long run. Just the opposite of Target's "Pay Less, Get More."
 
There are some relentless friends to deceased and living PALS who are trying to get the facts straight and get some action moving. ALSA has been silent and actually objected (and moved) the AAC Institute petition that someone placed on their facebook wall. Please help spread the word. It seems to some of us that this is very important.

Here's the scoop regarding Tobii (the Windows-based technology that we saw Steve Gleason use in the Microsoft ad during the Super Bowl)...
Starting April 1 when the new policies go into effect, during the 13 month rental period, the Windows 8 operating system will be locked. These devices are being forced as speech only dedicated devices. Tobii cannot unlock the systems or assist people in unlocking. If a person does so with a hack, the warranty is void.

So you can communicate, but only to people in the room with you. You can't communicate with family, doctors, ALS organizations, elected officials, or Medicare via the internet. How convenient.

My slogan for the day -- This is America, not Turkey.
 
After a pretty frustrating week of fits and starts to try to get some action moving on the CMS rules changes, Steve Gleason stepped up last night and wrote a case that gives us a cohesive goal.

ALS Advocacy: Thank You For Your #Empowering Leadership, Steve Gleason

Thanks to all who can take a few minutes and contact your Member of Congress and two Senators for a little exercise in democracy. It's important and I think Steve's leadership gives this approach a whole lot of traction.

_____


An Open Letter to Louisiana Senators and Congressmen:

Dear Senators Landrieu, Vitter and all Louisiana Members of Congress,

Recently, legislation was introduced to ensure patient access to quality, complex rehabilitation technology. An example of that technology is my power chair. I cannot imagine living with ALS (or any other physically restrictive disease) without a power chair. It is not only... a necessity, it is a means of independence for me and my caregivers. The bi-partisan legislation introduced is S. 948 and HR 942. While every organization that supports the care of people with physical limitations supports this, not one legislator from Louisiana has signed it as of today.

Adding to this, the Centers for Medicare & Medicaid Services (CMMS) have new rules which become effective April 1st. Exactly the opposite of the legislation above, these superfluous rules will inhibit people from having consistent access to essential communication devices. The term essential is not hyperbole. I use my eyes to type on one of these devices. Essential communication; from requests for food or water, to telling my family I love them, advocating at the United Nations, or open letters to policy makers.

While I am very fortunate to have the ability to own and customize my equipment, most people who are dealing with ALS, and conditions like ALS, do not. Living with a physically debilitating disease is not only a tremendous emotional burden, but a financial one as well. By taking away access to these devices, the CMMS is harming the very people the institution was created to help.

Imagine if your cell phone, tablet and laptop were taken away when you had a hospital visit. While it is logical to rent “simple” machines like a car or a pressure washer for periods at a time, renting complex and customizable technology like a cell phone, tablet or laptop is far less viable, especially when that technology is your only means of connecting to the world.

I was recently in a Microsoft commercial. The commercial shows how transformative technology has been to individuals and the world. Microsoft calls these technologies "empowering". These new rules from the CMMS will quash the power that technology gives people like me... people who intend to be productive and purposeful.

Please sign S 948 and HR 942. And, please introduce immediately an exclusion for Speech Generating Devices (SGDs). Thank you for your attention to this important issue and for your voice in Washington, DC. Through your support, you will also safeguard the voices of thousands of others.

Steve Gleason
 
I did the automatic email. Then I forwarded it to m boss, who sent it out to all employees. I've heard from 20 since this morning that the sent one. My sister sent it to her pastor. He sent it to 3 sister churches.

Be an advocate and share this through email and Facebook.

Tracy
 
Just emailed my support. Super quick and easy to do. My speech aid devices are my only firm of communication with the world. I cannot imagine what my life would be without them! Thank you for posting this. Thanks to Steve Gleason as well for his support.
We must get this stopped!
 
Action 2. There is some proposed legislation that could move Speech Generating Devices as well as Power Wheel Chairs out from Medicare’s durable medical equipment rules (thus escaping the April 4 rule change). This complex medical equipment that is highly technical and personalized just doesn’t fit rules written for bedpans and commodes. The MS Society has excellent information on this and they have an action page to submit requests to your legislators. I their letter can be changed easily to make it about ALS (with thanks to the MS Society for being on top of the issue). I submitted one to my Representative and Senators. Here is the link Complex Rehab Technology : National Multiple Sclerosis Society

I've created an ALS letter, to copy and paste in place of the MS letter. I was doing it for myself anyway, so i figured I'd share it with everyone.
Google docs - ALS CRT exception letter
 
Steve Gleason posted this Saturday, and Senator Landrieu is signing onto the Senate bill today.
TeamGleason
Had good, productive meetings w/ Senators @marylandrieu
@davidvitter & @chuckschumer today about fixing some @CMSgov rules
Thanx to all!
-SG
If only all of us had his access. I'm going to tweet my senators, but i doubt it will reach their cold, dead hearts.
 
I heard back from the Texas senators and reps that they would be in support of legislation. One of them I know - used to babysit his kids.
 
>I heard back from the Texas senators and reps that they would be in support of legislation. One of them I know - used to babysit his kids.

Good for you Tracy. You pull whatever strings you've got :)
 
Please note that the legislation that the MS Society is advocating does NOT include SGDs. It needs to be amended to include them, or something.
 
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