ALS Communication Devices

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Whether you experience speech and swallowing difficulties early on or later in the disease process, it is helpful to learn about alternative forms of communication before you need them. The following strategies and devices can help you communicate and stay engaged with others.

Voice Banking

If you become unable to speak, you can still use a speech-generating device (SGD) to speak for you. However, the device will say your words out loud in an impersonal, robotic-sounding voice unless you record your own voice ahead of time when you can still speak clearly. Voice banking will give your device a more personalized voice that more closely mimics your natural voice.

You can voice bank with the following software:

Acapela allows you to record directly onto your computer using a standard headset. You will be prompted to read sentences out loud, and then your recording will be processed and used to create your personalized text-to-speech voice. This software is available in multiple languages. With Acapela, you can “double dip,” which means recording your voice for message banking, and then using that recording for voice banking. (Learn more about message banking and double dipping below.)

ModelTalker is a voice-banking program that you can use either on your computer or through a web-based recording tool. You will be prompted to read short sentences out loud so the software can optimize your voice quality. You may be asked to re-record some sentences for better clarity.

Once you have banked your voice for future use, you will not need the recordings until you start using a communication app or speech-generating device.

myMessageBanking is software that guides you through the process, helps organize your messages, stores the messages, and provides a way to download the messages onto various speech-generating devices and communication apps. This service is free for personal use.

"Double Dipping"

With the Acapela software described above, you can “double dip,” which means recording your voice once for both voice banking and message banking. To do so, you will need to message bank a certain number of personal messages. These recordings will then be used as your voice banking recordings. Double dipping was developed by John Costello at Boston Children's ALS Augmentative Communication Program.

Low-Tech Solutions

For starters, here are some simple, inexpensive devices that can help you continue to communicate before you need a larger speech-generating device:

LCD Writing Tablet - a lightweight, portable, paperless writing tablet that can be erased by pressing a button

Alphabet Board - a portable chart that can help you communicate by pointing, gesturing, or gazing at words, letters, symbols, and pictures

Amplifier - a device that amplifies your voice so people can better understand you, both in person and over the phone

Dry-Erase Board - a lightweight, portable, erasable board that you use with a marker and eraser

These low-cost devices are not covered by insurance. Before paying out of pocket, ask your local ALS Network care manager if they have loaner devices.

Speech-Generating Devices (SGDs)

When you can no longer speak, speech-generating devices can speak for you. On a digital screen, you can select letters, words, and messages using the method that works best for you.

This may involve using your hands to touch the screen, type on a keyboard, or move a joystick. Or it may involve moving your head to operate a head mouse or optical head pointer. Or, you can use your eyes by looking at and selecting specific letters, words, and messages. The device will then speak the messages you create. SGDs are also computers that allow you to email, text, and browse the Internet.

There are a variety of speech-generating devices on the market. We recommend talking with your speech therapist about your options and asking to try multiple devices. Medicare will only cover one speech-generating device every five years, so you will want to make sure you get the right one for you.

To get an SGD, you will need to schedule an evaluation through your speech therapist, neurologist, or primary care doctor. The speech therapist will conduct your evaluation and submit the request to the manufacturer, who will then submit the authorization to Medicare, Medicaid, or private insurance.

Speech-generating devices typically cost around $15,000. Medicare will cover 80% of the cost. The remaining 20% should be covered by Medicaid and private insurance. If you don’t have Medicaid and/or private insurance, you may have a co-pay. Keep in mind that Medicare will not pay for a speech-generating device if you are already enrolled in a skilled nursing facility or are already enrolled in hospice.

Please reach out to your local ALS Network care manager for more information.

The nonprofit organization Bridging Voice offers a range of personalized services that can help you with computer access and communication technology needs. At no cost, a speech language pathologist can conduct a remote evaluation to determine the technology that would best address your needs. Bridging Voice can educate you on low-cost options, guide you in obtaining the technology, help you set it up, and then provide ongoing support, training, and customization.

Using your tablet or computer as an SGD

An alternative to going through insurance to get a speech-generating device is paying out-of-pocket for a standard desktop, laptop, or tablet and then outfitting it with text-to-speech software/apps and any alternative access options such as a joystick, head mouse, or eye tracker. Consult with your speech language pathologist about what might work best for you.

Some text-to-speech apps are free. Others can cost over $150. Different apps will have different features and customization options. Some work with both Mac and Android devices, though some only work with one or the other.

If you are a military veteran, your speech-generating device, tablet, or computer will be covered through your VA benefits.