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, June 12, 2014

What We Have Here Is A Failure To Communicate

The April 1 CMS-Medicare rules for Speech Generating Devices are simply in a time warp relative to today's technologies and the needs of people with ALS.

Now we understand that on September 1 there will be another giant step back to the 1970s --

Effective September 1, 2014, if a person's SGD has the potential for any function other than speaking (for example, email), then Medicare will not pay for the person's ability to speak through an SGD.

The people who write these rules must save them on computers with floppies that really flop while they listen to John Denver's Greatest Hits on their 8-track players.

People live with ALS in the real world of 2014 are unable to communicate without the enabling (and relatively inexpensive) technology of 2014.  To deny them that is wrong.

Maybe we should have an "rap with your kids about technology" day for the rulemakers at CMS.  Way cool.

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