“The silence and isolation that comes from losing the ability to communicate does not discriminate between types of injuries, diseases, accidents, or conditions…most people who have severe disabilities are expected to fade away quietly and die. For me, that was not ok. With the right equipment and the right technology, these same people can live and be productive for decades.”
— Steve Gleason
Many people living with degenerative diseases rely on speech generating devices to communicate with others.
Two years ago, Congress passed the “Steve Gleason Act of 2015” which eliminated patient worries of having communication taken away from them while also ensuring that “effective use” of the devices included critical eye-gaze coverage. Unfortunately, the 2015 Act is set to expire, which is why there is currently a push to make these changes permanent.
In May, the “Steve Gleason Enduring Voices Act” (H.R. 2465/ S. 1132) was introduced by Representatives Cathy McMorris Rodgers (R-WA) and John Larson (D-CT) as well as Senators Bill Cassidy (R-LA) and Amy Klobuchar (D-MN). This legislation permanently ensures that people living with degenerative diseases have access to speech generation devices regardless of their setting — home or healthcare institution. The bill will provide a Medicare payment for communication devices and for the accessories needed to allow the devices to work effectively.
Be a voice for those who risk losing theirs. Contact your members of Congress and urge them to vote yes on the Steve Gleason Enduring Voices Act.
See what happened when the man behind the Steve Gleason Enduring Voices Act asked Louisiana Congressman Ralph Abraham to co-sponsor his bill.