ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Wednesday, March 19, 2014

And Perhaps We Who Can Speak Were The Biggest Fools Of All

I can speak and type and do all kinds of things that ALS steals.

Yesterday as I googled for items related to the April 1 Medicare changes in the augmentative communication rules, I wondered where I was a year ago.  Indeed, I was asleep at the switch.

There was a comments period that I and thousands of us interested in the rights of those with ALS missed --
http://onceiknewbetter.blogspot.com/2013/08/proposed-changes-to-medicare-medicaid.html

There was proposed legislation that I and thousands of us interested in the rights of those with ALS missed --
http://onceiknewbetter.blogspot.com/2013/08/proposed-changes-to-medicare-medicaid.html

I and lots of us healthy people who can speak and type and do all kinds of things were cluelessly silent while the rights of people with ALS to communicate were being eroded by new rules.

That was so wrong.

1 comment:

  1. When they post the changes to things like this, I feel like they make it so very difficult to find! Many people were unaware because it was just not advertised well. Sometimes it is by accident that I come across some of these important comment periods and that should never be the case. We can still advocate for this to change. The general public does not always understand the impact of changes to such regulations regarding insurance. We continue to victimize those without a voice or without the finances to support their needs regardless of changes in insurance.
    On a positive note, there is a really cool research project going on to support more individualized synthetic voices. We can all become voice donors! http://onceiknewbetter.blogspot.com/2014/03/synthetic-voices-aac-our-humanity.html
    Patty

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