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Nikki J

Mar 22, 2012
This passed 3 years ago and stopped medicare from making speech generating devices rentals. At the time this was a new policy ( before as it is currently devices were purchased and yours to keep)

Renting meant if you went into hospice or had to be hospitalized the eye gaze or whatever was taken away- just when the need was more than ever

The act was to expire in October 2018. A 2017 Act to make it permanent never went anywhere as far as I can see

Does anyone know anything different?

If you have a medicare purchased device I don’t think you will lose it. If you are close to needing something if the above is correct and you are on medicare push for it now.

If you are not close remember that there are some options that are more affordable so try not to panic.

As Steve Gleason said in three years ago today ( via his eye gaze) three years ago taking away SGDs from PALS is a human rights violation in my opinion

Below is from Team Gleason in 2015

The Steve Gleason Act is on the books as law. We still have work to do, but today we celebrate a win. THANKS to all who wrote, called and wished this wrong to be righted.

From Steve:
Last year sweeping changes were made at Medicare. I was shocked to learn that those changes would include Medicare stripping communication devices (SGDs) from people whose only means of communication was those very devices. In a Washington Post op-ed, I called it a human rights violation.

We saw it happen far too many times. People who wished to live productively, denied access to the one tool that could liberate them. People in hospice, who had their SGDs seized, so their last words to their loved ones were mere silence.

Thankfully, legislative leaders like Senator David Vitter, Congresswoman Cathy McMorris Rodgers, Congressman Erik Paulsen, Congressman Steve Scalise and many others, saw this tragedy and they intervened. These leaders stepped up on behalf of those who couldn’t take action themselves. At the time, the Steve Gleason Act seemed like a long shot. It was given only a 2% chance of passing, but the ALS community never waved the white flag. That was not an option.

With help from this extraordinary ALS community of patients and caregivers, as well as advocates like The Center for Medicare Advocacy, we made some noise. A lot of noise. People, like myself, who are literally voiceless, were heard. Loud and clear.

This legislation may have my name on it, but please know it is the ALS community and the diligent legislators who deserve our applause.

#NoWhiteFlags #NotQuietly
My Trilogy is a rental. It's a crying shame that Medicare and my supplement pay such an astronomical rental for it. It would have been paid for in 18 months but they just keep billing and swap it out for a newer one every two years.

I think we are in trouble with this Administration's lack of concern for our health care. Just my opinion but these items are expensive if we have to pay for them out-of-pocket.
Oh awesome. Thank you Laurie. I missed it happening and couldn’t find it anywhere just the dead 2017 bill
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