Speech Generating Devices
Most people with ALS will experience difficulty with speech and movement as their illness progresses. Some people living with ALS will ultimately lose the ability to speak and use their hands, which can be both frustrating and emotionally devastating. Using alternative and augmented communication (AAC) devices can greatly improve the quality of life of a person living with ALS. (When Medicare began paying for communication devices in 2001, they decided to refer to AAC devices as SGD’s — Speech Generating Devices. The acronyms are interchangeable). SGD includes systems such as sign language, symbol or picture boards, and electronic devices with synthesized speech.
Although the same systems can be used for either augmentative communication or alternative communication, there is a difference between the two. Augmentative systems are used by people who already have some speech but are either unable to be understood, or have limited speaking ability. These other modes of communication are used to support, or supplement, what the person is able to say verbally. Alternative communication is the term used when a person has no speech. These people must completely rely on another method to make all their ideas, wants, or needs known.
Electronic communication devices are used by anyone who can’t make themselves verbally understood. Many different electronic communication systems are available. Some communication systems are custom-designed for a specific user or can only be used in specific situations. For example, a communication system that works through a desktop computer cannot travel with the person with ALS to doctor visits, but a laptop or notebook computer is more portable and will allow the system to travel with the person with ALS.
To find out how to work with Medicare or your insurance provider to obtain a SGD, please contact your local chapter.
There are a variety of eye-gaze devices that can improve the lives of people living with ALS. These devices use eye movement to “activate” a letter, word, or phrase on a computer screen, which can then be spoken by the computer for communication purposes. To use eye gaze devices, the person living with ALS needs to be able to use the muscles that control upper, lower, and lateral eye movement. These devices are typically used once other SGD devices are no longer useful. If your disease has progressed to the point of needing an eye-gaze device, Medicare and some insurance policies may cover a majority of the costs associated with purchasing an eye-gaze system, and of course, your local chapter can always help.