Resources and FAQs for pALS
Team Gleason is honored to serve those living with ALS by providing assistance with innovative technology.
For assistance obtaining an AAC (Augmentative and Alternative Communication) device, please fill out the application and be sure to include a copy of the AAC evaluation that was performed by your Speech and Language Pathologist (SLP). The application will soon be available on our website for download, but for now, email firstname.lastname@example.org for requesting assistance.
For assistance relating to anything other than a communication device, please submit a letter of ALS diagnosis from your neurologist with your application.
Team Gleason can also help cover the cost of copays for communication devices for people living with ALS (pALS) as funds are available. In the event that Team Gleason is not able to cover the cost of a copay, Team Gleason can issue the pALS a loaner device. If the pALS requires a loaner device, a separate equipment agreement will be sent. This agreement must be filled out and sent back before Team Gleason can ship the equipment.
Q: Why does Team Gleason require an AAC device evaluation before offering a loaner device or financial assistance for a copay?
A: The reason that Team Gleason requires an AAC device evaluation before offering a loaner device or financial assistance is three-fold:
- We want to make sure that someone knowledgeable about AAC technology has worked with the person requiring the device. It is critical that the pALS tries multiple devices with a knowledgeable SLP so that the best solution is provided. When evaluating an AAC device, multiple factors need to be addressed and considered to ensure usability: Ease of use, ease of calibration, interface design, features, etc. Many methods of communication exist, and to determine that best one that works for pALS, more than one model of AAC device needs to be evaluated. As each person is at a different point in the journey with ALS, different interaction methods, features, etc. will be required to ensure that the pALS gets optimal use of their AAC device, if technology is the best and/or workable solution.
- An SLP evaluation confirms an ALS diagnosis. This is why we do not require both an AAC evaluation and a letter of diagnosis for a communication device. This is also why for any assistance that is not related to an AAC device, a letter of diagnosis is required by the neurologist.
- AAC devices are communication tools and work best if they are a match for the person using them! An AAC evaluation from a knowledgeable SLP ensures that the pALS is able to get training on their device. This also confirms that the pALS should be able to use the device once received. In order for us to assist each pALS with communication, we want to be sure they have somewhere or someone to go to who can assist them with their device and provide training.
Q: Besides a Speech and Language Pathologist, who else can provide assistance with AAC devices?
A: Most AAC companies have representatives or contractors who they work with. Many give a limited amount of hours of free training when a device is purchased. In the case of receiving a loaner, some companies will let their representatives offer training and set up for free, but not all. Vendor websites allow you to search and find the contact info of a representative near you to determine what additional training or services they offer. In addition, other non-profits such as local ALS Association chapters can often times send employees or volunteers who can assist in setup and training. For technical support, the AAC manufacturers have their own respective dedicated phone numbers for tech support. Please refer to your device manufacturer’s website for further info.
Q: Aside from technology, what sort of things does Team Gleason assist with?
A: In addition to AAC devices, Team Gleason can provide assistance for home renovations, shower chairs, medical lifts (such as Hoyer, Vanderlift, etc), and other equipment.
Q: If Team Gleason offers a loaner device, how long is the loan period?
A: When Team Gleason provides a loaner device, there is no time limit associated with the device. The device can be used as long as it is needed. In a scenario where the pALS is unable to use the device, it must be returned to Team Gleason. Contact Austin Edenfield at email@example.com to arrange for the return of the device.
Q: What is voice banking?
A: Voice banking is a way for pALS to create a synthesized or “computerized” version of their natural speaking voice. The benefit to voice banking is that a pALS can use their personal synthesized voice with their AAC device, thus their AAC voice sounds very similar to their physical voice. Voice banking can be done several ways with various software. Access to voice banking can be done with free software, while others have a fee. Contact your local ALS Association chapter or SLP for more information. You can also visit these websites below for more info:
-Model Talker: https://www.modeltalker.org/
Q: What is message banking?
A: Message banking is a way of recording everyday phrases with their own voice. When a pALS uses a communication device, a synthesized computer voice will “speak” the sentence that is typed. Some may choose to “bank” some often used phrases and store them on their AAC device. Phrases like “I love you”, “I’m proud of you”, and other personal phrases are often “banked” for future use. These phrases are recorded when the pALS still has the ability to speak. For message banking questions, we recommend reviewing John Costello’s work at Boston Children’s Hospital. John has created some helpful material on many topics that can be found here. John has also partnered with TobiiDynavox to develop a message banking platform. Find out more info on that here. Clever Monkey Development LLC. Has created a free message banking app that is available on the Windows Store as well. For more information, click here.
Other applications can be used to record messages for message banking such as:
Sound Recorder – Microsoft
Q: What are Environmental Controls? Is that different from Home Automation?
A: Environmental Controls allow pALS the ability to control functional items in their home, such as Televisions, Electronics, Lights, Open/close doors, control air conditioning, control blinds and curtains, etc. There are methods a pALS can utilize to control their environment, such as eye gaze, head pointing, etc. Home Automation is slightly different in that it utilizes environment controls to automate the home. For example, the lights in a room will turn on and off at a certain time each day. This is known as an automated process. Team Gleason is working to create a downloadable manual with more information regarding environmental controls and home automation. There are various Wi-FI and Z-Wave devices that can be controlled from an AAC device to enable a pALS to have control of their home environment.
Q: What service does Team Gleason employ at the Team Gleason House for Environmental Controls?
A: Team Gleason uses PEAC by Proximis for each room in the Gleason House. For more info on PEAC, visit www.peacautomation.com or call 877.877.0643 x 4
Q: Does Team Gleason have any instructional videos that can help me learn how to use my AAC device?
A: Yes! Team Gleason has a Technology Youtube page. More videos will be added soon, so check back often here. In addition, many AAC manufacturers have downloadable manuals and/or video tutorials on their respective websites.
Q: What is Steve’s current communication device and set up?
A: Steve is currently using a Surface Pro 4. Steve’s Surface configuration is the i5 processor, 8GB RAM, and 256GB storage. For navigating the computer, Steve is using the Tobii PcEyeMini. The PcEyeMini is an eyegaze tracker that connects to the Surface Pro via the USB port. Since the Surface Pro 4 has one USB port, Steve uses a USB hub to add more USB ports to his Surface. As a sidenote, Steve’s technology configuration will not work for everyone as noted in prior questions. It is specific to his physical ability.
Q: What programs does Steve use to communicate?
A: Steve uses Balabolka and the Tobii Windows Control keyboard to speak to others. Balabolka is a free download that be found here. Windows Control is an application designed by TobiiDynavox, and it is included with the purchase of a PcEyeMini. To email others, Steve uses an email client called Thunderbird. Thunderbird is free and can be downloaded here.
Q: Where can I find out more information about the EyeDrive Wheelchair?
A: The EyeDrive technology is currently not available, due to FDA regulations and is still in the trial phase. But, Team Gleason, Microsoft, wheelchair manufacturers and communication device companies, as well as many other agencies and advocates are working to make the technology widely available as soon as possible. Please see https://www.microsoft.com/en-us/research/project/eye-controlled-wheelchair/
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