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, August 13, 2014

If You Can Read This, Thank An Internet Connection

Finally we have an action item regarding the Medicare rules changes for Speech Generating Devices.

The following is from the Center for Medicare Advocacy:

Recent changes to Medicare are drastically reducing the ability of the most vulnerable people with disabilities to communicate.
As of April 1, 2014, Medicare began denying payment for many of the medically necessary speech generating devices used by people with ALS (Lou Gehrig’s Disease), Cerebral Palsy, Spinal Cord Injuries, and other impairments, when they enter a health care facility, such as a skilled nursing home or hospice. Taking these highly specialized devices away leaves them no way to communicate at a vulnerable and terrifying time.
On September 1, 2014, many severely disabled individuals will have all contact with the outside world cut off. For many years, Medicare allowed individuals using Medicare-provided speech generating devices to use their own funds to "upgrade" the devices. This allowed them to communicate beyond the confines of their room through email, internet, and text messages. After September, Medicare will no longer pay for any device that has the potential to be upgraded to allow communication outside the room 
Currently, Medicare routinely denies coverage of the critical eye-gaze technology necessary by some people to operate these speech devices, even when its medical necessity is well documented.  They have no way to communicate as a result. After years of waiting for an appeal to Medicare, the eye-gaze coverage is routinely allowed, but individuals should not be forced to wait years without a voice.  
We need your "voice!"
Please click on the link above and take action.  There is a simple tool to write your Congressperson and your two Senators and Health and Human Services Secretary Burwell.
Please act (and be thankful you can).  The fact that you can read this means you understand the value of technology and the internet for communications in the 21st Century.  Please don't let basic communications be taken away from people with ALS.
Thanks to the Center for Medicare Advocacy and to Team Gleason for taking leadership!

1 comment:

  1. Hello,
    I would like to write a story about this for my website, HelpwithAging,com Please send me the names and contact info for families or providers willing to discuss this. My e-mail is I am a free-lance writer and former Washington correspondent for the Los Angeles Times.