Augmentative Communication
Many people with ALS may experience problems with communication. When an individual has communication impairment, Augmentative and Alternative Communication (AAC) can assist in meeting the overall goals of palliative care. AAC represents a variety of different communication strategies and levels of sophistication such as writing, using a letterboard, electronic communication devices or computers with text to speech software.
AAC can improve quality of life by optimizing function, assisting with decision-making and providing opportunities for personal growth. Because a person can not speak does not mean they lose the ability to communicate. People with ALS who are informed and educated about communication alternatives know they have choices and can empower themselves by maintaining communication and personal control of their communication abilities.
A recent New York Times article reported on a woman living with ALS who requires the use of communication assistance and found that a small, relatively inexpensive electronic device meets her communication needs at this time. Although this type of equipment can be used by some people with ALS for a period of time, communication needs can change over the course of the disease making more sophisticated technology necessary to appropriately support communication requirements.
The type of device referred to in the news article is multi-purpose and was not developed to meet the communication needs of people with ALS. These types of equipment will only serve a small segment of the people with ALS and typically only for a transitional period. As the disease progresses, people with ALS may lose the ability to move their hands and these devices lose their usefulness as communication vehicles.
Communication needs change in people with ALS, and the types of equipment required can advance to highly specialized “speech generating devices” (SDG). These are developed specifically for people with ALS as well as for people with other communication impaired conditions. The SGDs provide the ability to communicate for people who may only have eye movement and allows them to remain connected with family, friends and their community. This is imperative for them to maintain a satisfactory quality of life. People lose hope when they can no longer make their basic needs known, and when decisions are left to others who can only guess what they want or need.
We support all forms of communication systems whether it is low technology such as writing or the use of letterboards, or high technology such as electronic eye gaze systems. The goal is to match the appropriate device with the individual needs of a person with ALS for a particular period of time. To optimize the communication devices available to people with ALS at varying stages of the disease, The Association supports reimbursement for devices that are deemed medically necessary by the physicians. The loss of communication is often the biggest challenge with ALS, and there is no “right” form of communication.
An important point to remember is that there are many choices available. We recommend you seek the appropriate health care professionals for guidance and direction in choosing your communication options. Should you have any questions please contact Alisa Brownlee at abrownlee@alsa-national.org.
