Speak Out For Those Who Cannot Speak For Themselves

Medicare is implementing requirements that will put burdensome restrictions on people with ALS, brain injuries, and other debilitating impairments seeking to acquire and use Speech Generating Devices from Medicare. Speech Generating Devices (SGD) are computers that can take the user input and vocalize the output for those unable to vocalize themselves. We are asking that you contact your congressperson to support reversing the changes outlined below.

We learned about this because I am afraid my daughter is one of the many people being directly affected by this new policy by Medicare. Ashleigh met with therapists who specialize in Augmentative and Alternative Communication. Over a number of sessions they tested various devices before settling on the Tobii Eye Gaze System. The Eye Gaze systems allow users to control the SGD computer with only their eyes. The therapists were very excited at how well she did and she was excited as well. We have tried numerous devices over the years and this was the first device that seemed like it was going to be able to work given her physical limitations since her brain injury. 

The most critical problem is that these new requirements placed on the vendors by Medicare have led to vendors to stop shipping devices to Medicare customers. While Medicare may be trying to solve things they saw as problems they seem to have created unintended consequences for the disabled that overshadow any benefits. Below are the three areas of change:

Capped Rental – As of April 1, 2014, Medicare made the Speech Generating Devices Capped Rental items for 13 months and after that they are owned by the user. This sounds fine except Medicare also has a rule that says when a person enters the hospital or other facility during that rental period they will not pay for equipment or services outside of the facility. This means the SGD must be returned to the vendor taking away these personally programmed, highly customized devices while they are institutionalized and during a time when their health is at the highest risk and when the devices are most needed to communicate with medical staff.

Unlocking the Device – Effective Sept. 1, 2014 Medicare will no longer pay for any Speech Generating Device that has even the potential to be unlocked to allow communication that is not face-to-face interaction with other individuals directly in front of device. The unlocking allowed for features like environmental controls, email, Internet, other computer programs and text messages. This change would not allow things like email to the doctor, therapist or clinical teams via email, from caretakers via text and even first responders in an emergency situation. CMS is dictating to people that they can never upgrade an SGD even at their own expense and even when they own the SGD. This action is being taken despite the fact that Congress explicitly provided CMS with the authority to allow people to upgrade devices at their own expense.


Eye-Gaze Technology – In 2014, Medicare’s contractors have begun to routinely deny coverage for eye-gaze tracking technology that is an access method used to control the SGD for people with severe movement disorders. The denial comes even though both a doctor’s and speech language pathologist’s evaluation is necessary before the claim is submitted. Contractors indicate the denials are due to the ability of the eye-tracking to be used for other purposes. These decisions can be appealed but it leaves the most vulnerable without a voice during that long process.


We need you to speak up for those who can’t and we need quick action to stop these devastating changes from impacting patients who are in desperate need of access to speech generating devices. We are asking you to please contact your local House Representatives and Senators, asking that they sign a bi-partisan Dear Colleague letter titled: “Ensure ALS Patients Retain Access to Critical Communication Tools”

The letter will be open for only one week; your members of Congress must sign-on by Wednesday, August 27th. It is currently sponsored by Honorable Member of Congress Cynthia McMorris-Rodgers, Honorable Member of Congress John Tierney, Honorable Member of Congress Erik Paulsen and the Honorable Senator Collins.


  1. Lisa mayo on August 14, 2015 at 5:40 pm

    My brother was injured 3/28/2015 when he crashed his motorcycle as a result he has a severe TBI. He is making progress with all the therapy he has been getting. His health insurance covered 60 days of Skilled nursing with therapy. Now his is on Medicaid. I’m shocked and angry to learn people with TBI with a level of care such as nursing home do not get therapy.

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