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 26, 2014

Let's Have Some March Madness

It's all starting to come together now.

It looks like we have two plays to work on regarding access to Speech Generating Devices and Power Wheel Chairs for people with ALS.
  • The Easy Free Throw to get the attention of CMS Medicare (Executive Branch) that their April 1 rules implementation blocks the rights and needs of people with ALS.
  • The Picket Fence to get the attention of legislators who have the power to attack the problem with a long-term solution. People with ALS and taxpayers will win.  The key to this play is HR942/S948 Ensuring Access to Quality Complex Rehabilitation Technology Act.  It is essential that Speech Generating Devices be included in this act along with complex Power Wheel Chairs!  This legislation gets these devices out from under rules that simply don't make sense for such technology.
    • ACTION ITEM: Please contact your Member of Congress and your two Senators. Most take email on their websites.  Ask for them to support HR942/S948 with an inclusion of Speech Generating Devices.  Most will be in their districts the two weeks following April 15.  It would be a pretty cool civics lesson for us all (including the kids) to make an appointment and stop by and chat.

We need to take and make lots of shots if we are to win. The clock is running. Thanks to all who join the team.  Steve Gleason has already made a huge three-pointer --

1 comment:

  1. Thanks for this post. Definately an important topic that should be further addressed by congress.