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.

Thursday, November 20, 2014

Please Speak Up So That People With ALS Are Not Silenced

Medicare CMS has a public comments period that ends on December 6.  It involves their rules on so-called Speech Generating Devices and related technology.  We must submit comments on behalf of all those who can't.  We must make it clear that technology that enables people with ALS to communicate in any manner and, therefore, participate in their healthcare and lives is not a luxury.  It is a necessity.

Here is the issue we need to address as stated by CMS:

Effective January 1, 2001, speech generating devices are considered to fall within the durable medical equipment (DME) benefit category defined in section 1861(n) of the Social Security Act (the Act).   Speech generating devices are covered if the patient suffers from severe speech impairment and the medical condition warrants the use of a device. Speech generating devices are defined for Medicare coverage purposes to include dedicated speech devices used solely by the individual who has severe speech impairment.   Speech generating devices also include software that allows a laptop computer, desktop computer or personal digital assistant (PDA) to function as a speech generating device.  Devices that are not considered speech generating devices include devices that are not dedicated speech devices, or devices that are capable of running software for purposes other than for speech generation.  The national coverage determination (NCD) is available in section 50.1 of the Medicare NCD Manual (Pub. No. 100-3, Ch. 1, Part 1).
Since 2001, the technology of devices that generate speech and the ways in which the devices are used by patients to meet their medical needs has changed significantly.  For example, patients now use speech devices to generate text and email messages for the purpose of communicating with their caregivers and physicians.  Therefore, in light of the changes in technology and use of devices that generate speech, we are internally generating a reconsideration of this NCD to address coverage of devices that generate speech as well as other forms of communication.

Here are the comments that I just submitted.

When Mom was dealing with ALS in 1996, there was a huge lesson in our lives -- we take so much for granted. 
This morning I sat down in a comfortable recliner and am typing on a laptop to participate as a citizen in communicating with my government.  I can reach to the left and turn on a light switch.  I can get up and turn up the thermostat when the room gets cold.  If I need someone else in the house, I can yell (or better yet, text).  If, God forbid, I have an emergency, I can dial 911 and get some help. 
It was not so easy for Mom.  We worried about her needing to call 911 in an emergency and not being understood or being dismissed as a drunk. There was some technology that helped.  She had a little Franklin talking dictionary that we programmed with some emergency information.  The Clapper let her triumphantly control the lights... until she could no longer clap.  Communicating with her healthcare providers was difficult to impossible.  
Fortunately technology has leapt forward from the days of talking dictionaries and The Clapper.  There has been a remarkable convergence of technologies that can let people with ALS lead fuller lives more safely and be in charge of their own healthcare decisions.  Thank heavens, they can be enabled to communicate clearly and directly with healthcare providers from home without relying on speech.  Technology today can let them turn on the lights even when they can't clap.  They can control the temperature in the room or beckon a caregiver downstairs doing laundry.  They can tell a power-wheelchair to adjust to avoid the dreaded pressure sores.  They can even advise a commode when it's time to start cleansing.  Yes, we healthy people take so much for granted that technology can now assist.  Consumer devices are getting amazingly smart thanks to two-way communications.  
I feel strongly that CMS needs rules that will let CMS make smart decisions as technologies advance and converge.  We saw Steve Gleason in a Super Bowl commercial demonstrating some empowering software that is pretty mainstream today.  As consumer technology gets better and more affordable, CMS needs to be able to adapt its policies to take advantage of that.  It's good for those with ALS and it's good for the taxpayers.  As our world gets smarter, we need to make smarter policy decisions.  Communications today are so much more than speech. 
Thank you.  We take so much for granted, and technology can help give back some of life's basics that are stolen from those with ALS.

Please add yours.  We must be heard so that people with ALS are not silenced.  Thank you.

Click here for the link to submit your comments.  There are only 51 comments posted as of today.  Please spread the word so that there will be hundreds or thousands!  We must be heard.

1 comment:

  1. I have als although it as, asyet not impacted my speech. I cannot imagine how horrifying it would be to be "locked in" without any means of communication.