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, September 3, 2014

We Need To Press Medicare CMS Regarding Speech Generating Devices

Yesterday's article in the Washington Post and the related, delicately worded statement by CMS on their
policy on speech generating devices drew a lot of insightful comments online.

In addition, a relentless advocate for those with ALS who also knows a lot about these devices submitted a very informative letter to the Washington Post.

With her permission, I include it below.  I hope that the press will press for more information.  This is far too important to be glossed over with spin from a government agency.

Almost simultaneously with an op-ed piece by Steve Gleason on the importance of technology and communication for those diagnosed with ALS and other physical disabilities, the Health & Science section of the Washington Post, published a statement from Medicare regarding speech generating devices. 
As a volunteer advocate for people with ALS, I can tell you unequivocally that the statement they made is not true. 
I realize this is a bold statement to make, but since April 1, 2014, CMS has been denying as well as requiring manufacturers to remove all software and internet capabilities from the devices or they will not be covered for payment. 
One such distributor is Eyegaze, Llc. Feel free to contact them and inquire as to what they are now permitted to ship. 
I have been trying to help people with ALS obtain these communication devices for many years and the sudden change as of April, has truly affected the lives of people with ALS in a detrimental way. Many are losing their will to live as the speech generating device they now have is a very expensive alphabet box. No access to even save their sentences or manage their finances via internet.

I'd just like to note, there is no cost savings to Medicare by implementing these new rules. As a matter of fact, it is more costly due to the administrative costs they now must carry. The device costs exactly the same as it used to, except it simply has been stripped of its capabilities to add software or to access the internet.
Since 2001, SGD's have always been shipped "locked" from the internet and a user could call the manufacturer of their device and pay a small fee to have it unlocked. Usually about $50.
That capability has been removed with no explanation and causing months of letter writing campaigns and lobbying.
To read this statement from CMS is actually a slap in the face to all who have been suffering because of its implementation as well as all who have been trying to reverse the coverage rules. I urge you to dig a little but deeper and help make a change for those who are already locked inside their bodies. They shouldn't also be locked away from the world due to Medicare.

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