Augmentative and Alternative Communication
Most people living with ALS will experience difficulties with speech and movement as their illness progresses. Some will ultimately lose the ability to speak and use their hands, which can be both frustrating and emotionally devastating.
Using augmentative and alternative communication (AAC) devices – equipment people use without using verbal speech – can greatly improve quality of life for a person living with ALS. Note that when Medicare began paying for communication devices in 2001, they decided to refer to AAC devices as SGDs — 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’s 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 can say verbally.
Alternative communication is the term used when a person has no speaking ability. These people must completely rely on another method to make 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 isn’t portable, so a person living with ALS can’t take it to doctor visits. A laptop or notebook computer offers a portable option, allowing the person living with ALS to travel with their device.
To find out how to work with Medicare or your insurance provider to obtain a SGD, please contact your local ALS Association 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 the majority of the cost associated with purchasing an eye-gaze system. Of course, your local ALS Association chapter can always help.