By Natsumi Asanuma, MS, CCC-SLP
Writing a best-selling memoir with eye blinks. Making award-winning contributions to theoretical physics. Leading ALS organizations. These are some of the accomplishments of public figures who used alternative and augmentative communication (AAC), with many more works are listed here. Meaningful communication independence can also be in the form of using an eye gaze speech device to participate in a support group, speaking with an iPad to your doctor at a clinic appointment, or “liking” a photo of your granddaughter on Facebook; all examples of successes from within the Susan Mast community.
Steve Gleason, ALS philanthropist/advocate and former New Orleans Saints football player, once said about ALS, “Until there is a cure, technology is the cure.” Though not all pALS will need to use them, the following are some of the types of communication technologies that may be a part of a toolkit for communication independence.
High Tech Alternative and Augmentative Communication
AAC encompasses a wide range of tools and strategies ranging from no/low tech to cutting edge technology used for communication by those who have speech impairment or loss. An evaluation with a speech language pathologist (SLP) knowledgeable with AAC can help you find the tools and techniques that best match your current and anticipated needs for communication and motor/physical access of a device, and adjustments may be made to your toolkit if your needs change. With high tech AAC, pALS may pursue options that are often covered by insurance called speech generating devices (SGDs) or may use lower cost personal electronic devices such as smartphones and tablets.
Speech Generating Devices are electronic AAC devices that speak aloud messages that the user selects. The user may type messages on a physical or on-screen keyboard or select buttons with words, phrases, or pictures that are combined to make the message. The software program used to create the messages and the methods of selection are customized to the user’s communication and physical needs. For example, the late physicist Dr. Stephen Hawking used a switch activated by his thumb to type during this 1994 speech, but later used a switch activated by his cheek muscles as described in this segment. Many pALS, such as Steve Gleason, opt for devices that track eye movements to “click” on screens like a mouse. Insurance-funded SGDs can be particularly helpful for those who require specialized selection methods such as eye gaze tracking, which can be costly to purchase out-of-pocket.
Whatever the device or method, SGDs require an evaluation with an SLP, a doctor’s order, and insurance authorization, with Medicare covering 80% of the cost of a device and mount (with the rest often covered by Medicaid or private insurance). Insurance typically only covers one device every 5 years in the best-case scenario, so it is important to get the evaluation at the right time and have the opportunity to try different devices to make the right match for your current and anticipated needs. Your clinic SLP can answer questions about your individual case and when it may be right to start the evaluation process.
Personal electronic devices such as smartphones, tablets, and laptops have options for text-to-speech and communication apps as well as built-in accessibility features that may make communication easier or possible at all for those experiencing changes in dexterity or limb mobility. Depending on the features needed, some pALS use personal devices exclusively, while others start with personal devices and transition to SGDs.
Communication Apps: For many pALS, a communication app needs to have the functions to have typed messages spoken aloud, save and categorize frequently used phrases, ability to choose or load a custom synthetic voice, and have the button/keyboard sizes match their vision and motor skills. Communication apps are available at different price points, features, and for different devices. Your SLP may have recommendations or may be able to demonstrate apps for you, and patients of the Susan Mast ALS Foundation may speak with our SLP as well. Using search terms such as “text to speech” and “AAC” (which stands for alternative and augmentative communication) in your device app store may be a good starting place for exploring options.
Accessibility Features: These features may offer ways navigate your phone differently, such as by voice control (for those with clear speech), camera head tracking, and switch control or button modifications (for those with fine motor difficulties). Your SLP may help you to set up these features in conjunction with a communication app, if this is the best method for you. Features vary by type of device, and an occupational therapist or assistive technology specialist may be good resources for learning how to make adaptations that best suit your needs.
Accessories for Personal Devices: Adding more powerful speakers, adaptive mouses or switches, or mounts to devices can also make these tools more accessible to your needs. Eye tracking sensors and software are also available now for Windows and iPad Pro even without an insurance-funded SGD (though cost can be a limiting factor). Even for those not pursuing an insurance-funded device, an evaluation with an SLP, occupational therapist, and/or assistive technology professional can be helpful in getting recommendations for the best set-up for your individual case.
Long Distance Communication
The broad view of communication includes anything from texting and video calls to e-mail and social media. Fortunately, many AAC devices also make some of these other forms of communication accessible as well. Medicare rules require that SGDs paid for by insurance provide only speech-related functions, so users should reach out to their device companies to find out the fee (usually under $30) and procedure for “unlocking” their device to be able to use the normal internet and computer functions typically built into their devices. There are often accessibility adaptations for some of the most popular apps and functions, such as e-mail, social media, internet, video streaming, e-books, and games that are available after paying the unlock fee for SGDs, and the accessibility features on personal devices may also help make non-communication apps easier to use as well.
The wide range of available technologies and options for AAC means greater opportunities for staying connected with others in the way that suits your individual needs and goals. Don’t be afraid to find assistance from an SLP, occupational or physical therapist, and/or assistive technology professional to match you with the tools that are best for you. For patients of the Susan Mast ALS Foundation, contact SLP Natsumi at 616-622-3066 ext. 4 or email@example.com for assistance or more information.
Accessibility Features by Operating System: Speech Generating Device Vendors (alphabetical):
ALS is a relentlessly demanding disease. It requires ongoing adaptations from patients, caregivers, and family members.
Susan Mast ALS Foundation