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.
- ACTION ITEM: Please continue to exercise your right to be heard at https://petitions.whitehouse.gov/petition/stall-centers-medicaremedicaid-services-cms-capped-rental-speech-generating-devices-pending-rewrite/Fz8bfNh2
This is exactly the reason that the White House provides such a space for citizens to be heard. CMS ultimately reports to the person in the Oval Office. We need to delay the April 1 implementation of these rules for SGDs (Speech Generating Devices).
- 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 --