Hi Alisa, Lew, ALS Advocates and Listerv,

Well, it is starting to happen.  We SLPs have begun telling patients and their families that we can no longer provide pALS who rely on alternative access a way to communicate via email, blogs, facebook, etc. with their Medicare funded SGDs.  The vendors have confirmed that with Medicare funded rental devices for the first 13 months they will not be able to provide the unlock (which allows for internet, email, etc). 

 

This has been devastating news and families and patients are really paying attention now.  I have some patients who did trials with devices that could access the internet and now we are getting them their funded device and telling them they will have no more ability to do that. 

 

I believe many would be willing to write letters explaining the impact of this change on the quality of their lives .  Is letter writing something we should be encouraging and sending on to Lew or is their another route we should be taking?  Of course SLPs can fill out the survey that is going around ( survey at: http://tinyurl.com/l5jgavm) but can our patients and families contribute to this effort.  There is certainly  some energy there we could harness.  Please help us guide our patients in a constructive use of this outrage they are feeling. 

 

Sincerely,

Amy Roman, MS, CCC-SLP
Augmentative Communication Specialist

AmyandpALS.Com

Forbes Norris ALS Research and Treatment Center
2324 Sacramento Street
San Francisco, CA 94115
Cell (415)518-0592
Fax (415)600-3778