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.

Sunday, November 2, 2014

T Minus 29 Days And Counting

A solution regarding the Medicare CMS Speech Generating Device problem is due by December 1.

The following message is from The Center for Medicare Advocacy.  Note that they are considering action if CMS does not reach an acceptable decision.

Please help them know of people with ALS who have been affected, and please help spread the word.

Thank you.


We Need Your Speech Generating Device (SGD) Stories!

Thank you again for taking action to preserve the voices of those in need of Speech Generating Devices. Because of your advocacy, CMS is currently reviewing its SGD policies. We are hopeful that CMS will revise these policies to allow SGD users to keep their speech when they’re admitted into health care facilities and be able to use their SGDs to communicate with the outside world.
However, in the event CMS does not reach an acceptable decision about SGDs, we are considering action to help people who will lose access to SGD communications.
If you, or someone you know, have been harmed by these policies, please contact us at SGD@MedicareAdvocacy.orgWe are gathering information and data from anyone who wants to be heard, but we are particularly interested in those who can share stories because they have been affected by any of the following:
  • They experienced problems keeping their SGD since capped rental payments went into effect.
  • They experienced problems getting or keeping non-speech communication functions on their SGD in 2014.
  • They experienced problems getting or keeping environmental control functions on their SGD in 2014.
  • CMS denied their request for eye-tracking, or other SGD attachments in 2013 or 2014.
If you or someone you know can answer "yes" to any of the questions above, please contact us at SGD@MedicareAdvocacy.orgInclude the name of the SGD user, email address, phone number, street address, and a summary of the experience.  We will not use any of the information you share without your express permission.

Every story we receive helps us advocate to maintain the voices of our most vulnerable citizens. Thank you for your continued support of all those affected by CMS’s SGD policies.

Kathy Holt
Associate Director/Attorney
Center for Medicare Advocacy

For more information see:

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