Frequently Asked Questions

A: The Speech-Language Pathologist should be the initial point of contact.

Representatives from the device manufacturer will usually assist with trials, initial setup, and troubleshooting. To find a local representative, check the manufacturer’s website.

Others that may be of assistance include occupational therapists, Assistive Technology Professionals (ATP), and others within the ALS community such as the ALS Association and local support groups.

A: Here are some of the companies that currently develop and sell communication devices. The companies are listed in alphabetical order, and their inclusion in this list is not a recommendation for their devices or services.

• Forbes AAC
• Jabbla
• Eyegaze Inc.
• PRC
• Smartbox
• Talk to Me Technologies
• Tobii Dynavox

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  returns@teamgleason.org to arrange for the return of the device.

A: Steve is currently using a Surface Pro 6. 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 6 has one USB port, Steve uses a USB hub to add more USB ports to his Surface. As a side note, Steve’s technology configuration will not work for everyone as noted in prior questions. It is specific to his physical ability and personal preferences.

A:  If you do not have a clinical support system working with you, we will connect you with our partners at the ALS Augmentative Communication Program at Boston Children’s Hospital, the originator of the Message Banking™ process and the Double Dipping Method, to guide you through the process.

A: To acquire a power wheelchair through Medicare, the following must be completed:

• • A face to face exam by your neurologist or primary care physician. During the face to face examination, your doctor will determine if a power wheelchair is reasonable and necessary for you and write a prescription.
  • A power wheelchair evaluation: This is usually done by either a Physical Therapist (PT) or Occupational Therapist (OT), oftentimes done with assistance from an Assistive Technology Professional (ATP) from the Durable Medical Equipment (DME) supplier who will order and deliver the wheelchair to the end user. A thorough wheelchair evaluation for an individual with ALS should include trials of multiple power chairs in the user’s home environment, simulation of proper positioning supports, measurements of the end user’s body, and a proper cushion and backrest to maximize pressure distribution for each user.
  • The DME supplier will submit the necessary documentation to Medicare for pre-authorization. After pre-authorization is completed, the end-user will be notified of the estimated copay amount before the chair can be ordered. Medicare will cover 80% of a covered power wheelchair, and the end-user is responsible for the remaining 20% and all non-covered items. Medicare will not fund a power chair if the end-user is in a facility, nursing home, receiving hospice, etc. Keep in mind that the wheelchair provider CANNOT place the order for the power chair without your authorization.
  • Make sure that all of your questions are answered about the product and you are content with the options presented to you during the evaluation BEFORE placing the order for the chair. Medicare will pay for one power wheelchair every five years.
  • Currently, Medicare does not cover seat elevators. If you are requesting assistance from Team Gleason for a seat elevator grant, this must be submitted to Team Gleason prior to placing the order for the chair.

A: No, Team Gleason does not assist financially with power chair copays.

A: Medicare does not pay for power adjustable seat height features as they are deemed by CMS to be “not medically necessary” and used for “convenience.” Team Gleason has partnerships in place with Invacare, Permobil, Quantum, and Sunrise to help issue grants for seat elevators. If the chair has already been ordered, Team Gleason cannot provide assistance for the seat elevator portion.

A: Grants are available for new chairs that have not yet been ordered. These power chairs must be in quote form. NOTE: If the order for your power chair has already been placed, Team Gleason will be unable to assist with grants. The process for obtaining assistance with additional power chair features are as follows:

• Apply for assistance HERE

A: There are a number of companies that manufacture wheelchairs and wheelchair accessories

• Adaptive Switch Labs - Adaptive Switch Labs (ASL) designs and produces equipment that allows individuals to access their environments and wheelchair controls.
• Body Point - Body point manufactures a range of products that primarily assist with postural support and positioning.
• Invacare - Invacare provides a range of home health equipment, including power wheelchairs, manual wheelchairs, beds, and transfer equipment. 
• Motion Concepts - Motion Concepts produces a range of power wheelchairs.
• Permobil - Permobil produces a range of manual wheelchairs, power wheelchairs, and seating and positioning options. 
• Quantum - Quantum Rehab produces a range of power wheelchairs and seating and positioning options. 
• Symmetric Designs - Symmetric Designs manufacturers the Savant Headrest, a custom, moldable gel support for the head.
• Stealth Products - Stealth Products designs and produces equipment that provides postural support, positioning, and that allows individuals to control their wheelchair through alternative methods.
• Sunrise Medical - Sunrise produces a range of manual wheelchairs, power wheelchairs, and seating and positioning options. 

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A:  Team Gleason cannot accept wheelchairs. Please contact your local ALS Chapter or Muscular Dystrophy Association to pay it forward to others in need. 

A: Anyone living in the USA that has been officially diagnosed with ALS.

A: 

Visit: https://mov.acapela-group.com/start-now/

Fill out the form.

Under Purpose of Usage - Choose 'Medical'

Under Request for funding through an organization - Choose 'Department of Veteran Affairs'

A: Each system has different parameters. Acapela now only requires you to record 50 sentences. Model Talker recommends 400 phrases as the minimum, suggests at least 800, and allows for 3200 phrases.

A:​ Please fill out the Need Assistance form and a team member will be in touch with an explanation of available options.

A: A computer, an internet connection, a quiet place, and time. It is also suggested that an external microphone is utilized, as the quality will be better than using the built-in computer microphone. 

A: For best results and flexibility to record anywhere, a Zoom H1n recorder is used.

A: Yes, you can still apply for funding assistance with both systems.

A: At this time, neither Acapela nor Model Talker support the creation of a synthesized voice from past recordings. In this situation, some individuals choose to have a relative or friend record the phrases for them. Team Gleason is willing to cover the cost for a proxy synthetic voice.

A: Voice and message banking is most successful when your speech is clear and easily understood but many people have been successful, even when their voice has changed substantially. It is important to understand that, depending on the option selected, the process of voice banking and/or Message Banking may take several hours of your time and energy over several days or weeks.

We recommend that you check with a speech language pathologist to make sure you are a good candidate before enrolling in a voice banking program. If you don’t have someone available, our partners in the ALS Augmentative Communication Program will assist you.

A: If you do not have a clinical support system working with you, we will connect you with our partners at the ALS Augmentative Communication Program at Boston Children’s Hospital, the originator of the Message Banking™ process and the Double Dipping Method, to guide you through the process. 

A: Fill out the application. A member of our team will get in touch to discuss further details. Once you receive all of your equipment, you will need to hire an electrician to install the equipment (light switches, thermostat, etc.).

A: Yes! The Axial app is available for download on both iOS and Android.

For iOS/Apple see: https://itunes.apple.com/us/app/axial-control/id408084651?mt=8

For Android see: https://play.google.com/store/apps/details?id=com.mls.incontrol.home.automation

A:​ You will need an internet connection to download, install, and activate Axial Control on a Windows based computer. The equipment that Team Gleason currently provides utilizes Z-Wave Plus technology, and after Axial Control is installed, it does not require an internet connection. This means that pALS will still be able to control their lights, thermostats, etc, even if they do not have a Wi-Fi connection. The Axial Control app is available on iPhone and Android, but If there is no internet connection, then an iPhone or Android device will not be able to control the system.

A: Yes! You will need to enable the Axial Control skill. See: https://www.amazon.com/InControl-Home-Automation-Axial-Control/dp/B01N0X9GD7

A: Yes. Axial Control is a Windows program. In order for Axial Control to be installed on a speech-generating device, the device needs to be unlocked for Windows access. Speech-generating devices can be unlocked with a code from the respective manufacturer for a fee which usually ranges from $25-$49. Contact your respective speech-generating device manufacturer for more info.

A: Currently we are able to provide the following: light switches, thermostats, garage door openers, deadbolts, and outlet control.

A: Each automation package is customized to the individual’s specific needs. As Team Gleason is a non-profit organization with limited resources, we are unable to provide automation equipment for an entire house, but generally the room(s) or area(s) the end user occupies the most.

A: Team Gleason is not able to provide automation equipment for individuals living with ALS who reside in a nursing home or facility.

A: Yes. Axial Control technical support is available from Monday-Friday from 10 A.M. to 5 P.M. CST. Please make arrangements for phone support via email at support@axialcontrol.com. Please allow up to one business day for a response from Axial Control.

A: As​ ​avid​ ​adventurers,​ ​Steve​ ​and​ ​Michel​ ​Gleason​ ​wanted​ ​to​ ​continue​ ​pursuing​ ​life adventures​ ​for​ ​themselves​ ​despite​ ​Steve’s​ ​diagnosis​ ​and​ ​found​ ​that​ ​many​ ​people​ ​with ALS​ ​were​ ​choosing​ ​to​ ​accept​ ​their​ ​assumed​ ​limitations.​ ​Because​ ​of​ ​their​ ​love​ ​of adventure,​ ​it​ ​was​ ​important​ ​for​ ​Steve​ ​to​ ​include​ ​adventures​ ​for​ ​others​ ​diagnosed​ ​with ALS​ ​as​ ​part​ ​of​ ​the​ ​Team​ ​Gleason​ ​mission.​ ​Through​ ​Steve​ ​and​ ​Michel’s​ ​inspiration​ ​and tireless​ ​work,​ ​Team​ ​Gleason​ ​has​ ​helped​ ​hundreds​ ​of​ ​people​ ​with​ ​ALS​ ​experience adventures​ ​they​ ​never​ ​thought​ ​possible​ ​after​ ​their​ ​diagnosis.​ ​And,​ ​we​ ​hope​ ​to​ ​continue helping​ ​others​ ​experience​ ​these​ ​challenging,​ ​yet​ ​life-enriching​ ​experiences.

A: The application consists of questions pertaining to progression, the potential adventure, accompanying people, and the submission of a letter of diagnosis. After the initial inquiry phone call or email, an application will be sent to you to fill out. The Team Gleason Adventure Coordinator will look into the numbers and present it to the staff and board. From there, they will decide to approve the adventure or not. If a pALS is chosen for an adventure, they will be notified via e-mail or phone call.

A: No, Team Gleason approves adventures from/to all over! We have sent pALS on adventures to Alaska, Africa, Disney World, and many other places across the globe.

A: Team Gleason uses funds donated to the Team Gleason Foundation to create budgets for the Adventures program.

A: Team Gleason works closely with Travel4ALS, a travel agency who helps us get the best deals and are skilled in letting the airlines know of the pALS needs.

A: Team Gleason pays expenses directly to vendors/agencies/companies. Team Gleason does not issue reimbursements.

A: Any individual living with ALS or muscular diseases or injuries.

A: Team Gleason has a limited budget and while we wish we could pay for the entire Adventure, this is generally unattainable. The budget and commitment are chosen on a case by case basis.

A: Team Gleason generally pays for pALS, a caregiver, and direct family members. Again, this is on a case by case basis.

A: Team Gleason helps facilitate the Adventure. When filling out your application, you will need to be putting in most of the leg work and research into the adventure. If approved, our Adventure Coordinator will work closely with you to plan and develop in-depth details of the experience. Depending on the adventure, Team Gleason also has the assistance of a travel agent to get the best deals.

A: With adventures being a part of our mission and a set budget, we try to send as many pALS as possible on adventures. Because of this, we are not able to issue monetary supplements if an adventure does not occur for any reason.