ASSISTIVE COMMUNICATION DEVICES FOR PALS: EVERYTHING YOU NEED TO KNOW

Part 2: Assistive Communication Devices: High Tech, Low Tech and Everything In Between

What are Assistive Communication Devices?
Assistive communication devices include both electronic and non-electronic appliances that support or supplement speech for individuals who experience difficulties using their voice to communicate effectively. Part one of “Assistive Communication Devices: High Tech, Low Tech and Everything In Between” included a review of basic AAC concepts. In this article we will focus on devices most appropriate for people with Amyotrophic Lateral Sclerosis (PALS).

Speech generating devices (SGD) are computerized devices that facilitate expression of thoughts, feelings, wants and needs for anyone who cannot do so with natural speech. These devices are often used by people who are either born with a condition that prevents them from speaking effectively, such as autism, cerebral palsy, and genetic syndromes; or acquired conditions such as traumatic brain injury, stroke, cancer, paralysis, or neurodegenerative diseases such as Multiple Sclerosis (MS), ALS or Parkinson’s disease (PD).

SGDs produce recognizable speech based on manual selected text. The individual using the device simply selects from preprogrammed words and phrases, or uses the onscreen keyboard to create customized phrases and sentences that can be saved for future use. Most devices also use predictive text (as you enter a word, the computer will bring up words that are likely to come next in the message) in order to quickly locate words. As you use the device, it quickly learns the words and phrases you use most frequently and makes them readily available in order to speed up communication. Once you complete your phrase or sentence, the device will convert the text into audible speech.

Numerous SGD options are available from low-tech communication boards and writing pads that do not produce speech, to low-cost “apps” for tablets, phones and computers, to custom speech generating devices that speak phrases or sentences you create. Before choosing a device, it is important to understand how these devices will enable communication and the various different features and modalities that are available for individuals with limited strength and mobility. To watch a brief introduction to SGDs, click here: SGD with eye tracking.

Overview of “High Tech” Speech Generating Devices for PALS
For most PALS, a high-tech SGD is often recommended as it can accommodate the their changing communication needs such as decreased motor function (strength and mobility) over time. In addition, with most insurance companies, these devices currently can be “unlocked” to access texting, email, internet, telephone, and environmental controls (remote control of lights, TV, appliances). Several companies produce SGDs that can be fully customized, meaning they can work with all “multiple access” options including eye tracking. Two of the more well known companies are Tobii/Dynavox and Prentke Romich. Although there are many SGDs on the market, only a few of them can fully accommodate PALS’ communication needs that change over time. It is especially important that your long-term needs be considered when choosing a device as Medicare, Medicaid, and many insurance companies will only pay for one (1) SGD every five (5) years. Therefore it is paramount that you obtain a device that you can potentially ‘grow into’ and that has capabilities for eye-tracking should you ever need this option.

Many of these devices support multiple access or alternate ways to interact with the device to accommodate for limited or reduced motor function. For example, one person may touch selections on a screen or keyboard while others will make choices by simply moving their eyes (eye tracking). Some other types of access include:

  • Scanning: items are highlighted automatically by row or column. When the item you want is highlighted, you either touch the screen or a switch that will then lock in that choice. To see scanning and switches in action, click on scanning.
  • Switches: are devices that come in various shapes and sizes that can be used with any part of the body including the head, hand, finger, foot, knee, arm, cheek and even eyebrow. Some look like large round buttons and are used by those with imprecise movements while others are very small. For more details, click on switches.
  • Head mouse: utilizes a camera-like sensor device that is mounted to your computer or SGD and tracks head movement using a small reflector sensor that is worn on your forehead, nose, glasses or headband. The mouse arrow on your computer or SGD will mimic the movements of the head as you choose letters, words or phrases on the screen. To see this device in action, click on head mouse.
  • Eye tracking/eye gaze: this technology provides a way for people with little to no control of muscle movement to use their SGD. Sophisticated cameras in the eye gaze unit track retina (eye) movement as an individual scan sover the SGD screen with their eyes. When your eye movement stops or “dwells” on a word or phrase on the screen, that choice will be selected. For more information, click on eye tracking.

The voices on all speech generating devices (SGD) are either synthesized – which can sound less natural; or digitized – which sounds more natural as it is a recording of an actual person saying specific phrases

  • Digitized words and phrases are pre-recorded, loaded onto the device by the manufacturer and cannot be customized. Some newer devices allow you to record your own voice; however, this is limited to select phrases and greetings.
  • Synthesized speech devices allow you to generate original messages that are not limited to pre-programmed phrases. These devices link together individual sounds of the words chosen to create speech. Additionally, a synthesized version of your own voice can be uploaded for use on certain computer programs and SGDs through a process known as voice and message banking. This topic will be explained in detail in Part 4 in the coming months.

Speech Generating Applications (“Apps”)
Many text-to-speech apps are available for various programs and devices including Apple, Android, Windows and Kindle tablets and phones, and computers. It is important to note, however that not all apps are appropriate to meet the specific needs of PALS. While educating PALS about these devices in our own multi-disciplinary ALS clinic at the University of South Florida, we often come across PALS or family members who are satisfied with a particular app and are hesitant to consider more high tech options. This is understandable, as many “high tech” communication options are intimidating and take effort to use successfully. Speech-language pathologists will work with PALS to provide an explanation as to why high tech options may be more appropriate, as reduced strength and mobility starts to interfere with their current communication alternatives. Text-to-speech is likely appropriate for a period of time, but awareness and knowledge of more advanced options are very important.

In the past, it was acceptable for PALS to use apps exclusively until it became evident they needed a more advanced SGD with eye tracking to accommodate changes in motor function. However, due to the recent changes in Medicare that were discussed in Part 1, it is necessary that PALS begin the process of obtaining their SGD prior to being dependent on alternative communication methods. It should also be noted that private insurance companies often follow Medicare’s model so these changes may also effect those with private insurance coverage and should be factored into your decision-making process.

So, when is the right time for an app? If verbal communication and voice quality is fatiguing, burdensome and/or increasingly difficult apps can be very useful, especially while waiting for approval for a SGD, as the process can take several months. Also, those who are employed often want something to supplement their speech, but prefer a device that is more convenient and mainstream than a traditional SGD. For these individuals, using apps on tablets and phones you already own may be cost-effective, convenient and the most desirable transition. “High tech” options can often be daunting, so a simple pen and paper option may suffice initially. However, knowledge of alternative options will be useful once “low tech” options are no longer feasible (for example when handwriting and gripping pens become difficult).. In these cases, very user-friendly apps such as CommunicAide and Talk Rocket Go can bridge the gap between high tech and no tech.

Many of the apps featured on the Assistive Communication Devices chart that can be found by clicking on this link (patient resources), will accommodate multiple access options, with the exception of eye tracking. Currently, only Tobii’s communication software (Communicator 4 and Sono Keys) can be downloaded to your PC or Windows tablet and will support eye tracking with Tobii’s PC EyeGo tracking module. As discussed previously, the Tobii products are not covered by Medicare or private insurers when purchased independent of an SGD. However, you may be able to appeal this policy with your private insurance company.

Low Tech Communication Devices
For some PALS, typically those who are not savvy with computers, smart phones or tablets, SGDs hold little appeal. Fortunately, there are low tech options available to express thoughts and feelings, wants and needs. Often, PALS can effectively use pen and paper to express their thoughts and neeeds. For those PALS, the Boogie Board is a great option, as the writing board can easily be cleared for a new message with just a touch of a button. Communication boards are another low-tech communication option. These are stiff boards of varying sizes with printed alphabet and number grids, common words and phrases, as well as iconic symbols that you point to by using your finger, head pointer or a laser pointer attached to your glasses. (LINK OF eye glass laser pointer would be useful here) Communication using low-tech options may be more tedious, as your communication partner must first be aware you wish to convey a message and then follow along as you spell out words or point to the symbols. Flip books work on a similar principle to communication boards. These are spiral bound books with letters, numbers, simple phrases and pictures that can easily be used to convey a message, provided you can still manipulate the pages. Two drawbacks to low-tech devices are: 1) they do not generate audible speech, and 2) they do not adapt to meet PALS’ changing communication needs and physical limitations.

Which Communication Device is Best for Me?
Your speech-language pathologist will work with you to evaluate your current and future communication needs, assess any physical limitations, and gauge your comfort level with high tech SGDs.Typically, the best SGD for PALS is typically high tech option that supports eye tracking. There are several SGDs that fall into this category. Click this link (patient resources), and read the “Exploring Assistive Communication Devices for PALS” booklet for more information. Take the time to familiarize yourself with them either by viewing the company’s website or visiting your nearest Assistive Services & Technology Demonstration Center. For those PALS in Florida, this link is: www.faast.org At these specialized centers, professionals will gladly take the time to demonstrate the various high and low tech communication options and apps. They will often lend you an assistive device for up to 30 days so you can try the device out in your own home. In addition, the FAAST center also has many specially designed tools (for buttoning a shirt, pulling zippers, putting on shoes, and uniquely designed dishes and utensils) as well as aids for daily living (such as text-to-speech phones, large button remotes, foot-control computer mouse, switches, and mobility equipment) that you may find helpful when meeting the physical challenges of ALS.

Coming Up Next: Part 3 – Jumping through Hoops: A Guide to Getting Your Device

References:
Beukelman, D., Fager, S., & Nordness, A. (2011). Communication Support for People with ALS. Neurol Res Int, 2011, 714693.
Hecht, M., Hillemacher, T., Grasel, E., Tigges, S., Winterholler, M., Heuss, D., Neundorfer, B. (2002). Subjective experience and coping in ALS. Amyotroph Lateral Scler Other Motor Neuron Disord, 3(4), 225-231.

Authored by:
Lisa G. Hess, B.A. and Emily K. Plowman, Ph.D., CCC-SLP,
Neuromotor Speech and Swallowing Restoration Laboratory
University of South Florida
www.nssrlab.org

Posted on February 7, 2015 at 1:53 am

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