ALS Ice Bucket Challenge Progress

 

Frequently Asked Questions

Here are some of the common questions we receive about equipment, our loaner program and more.  If you can't find the answer to your question here, please reach out to your Regional Program Manager.

 

What does DME stand for?

Durable Medical Equipment (DME) is any equipment that provides therapeutic benefits to a person in need because of certain medical conditions and/or illnesses. This equipment is meant to be durable enough to withstand repetitive use. DME includes, but is not limited to, wheelchairs (manual and electric), transport chairs, hospital beds, canes, walkers, pressure mattresses, lifts, etc. For more information, click here

 

What does AAC stand for? 

Augmentative and alternative communication (AAC) which is term that encompasses the communication methods used to supplement or replace speech or writing for those with impairments in the production or comprehension of spoken or written language. AAC is used by those with a wide range of speech and language impairments, including congenital impairments such as cerebral palsy, intellectual impairment and autism, and acquired conditions such as amyotrophic lateral sclerosis (ALS) and Parkinson's disease. AAC can be a permanent addition to a person's communication or a temporary aid. The ultimate goal of an AAC device is to assist the person to effectively communicate their wants and needs. For more information, click here

 

What is a Speech Language Pathologist (SLP)? 

A specialist who evaluates and treats patients with speech, language, cognitive-communication and swallowing disorders in individuals of all ages, from infants to the elderly.

 

What is a speech-generating device (SGD)? 

Speech-generating devices, also known as voice output communication aids, are electronic augmentative and alternative communication (AAC) systems used to supplement or replace speech or writing for individuals with severe speech impairments, enabling them to verbally communicate. 

 

What will Medicare cover? 

Medicare should pay for 80% of the cost to purchase (or rent) durable medical equipment (DME). Medicaid and/or private insurance should cover the rest. Medicaid benefits will vary by state, and private insurance benefits will vary by provider and plan. DME includes, but is not limited to, wheelchairs (manual and electric), transport chairs, hospital beds, canes, walkers, pressure mattresses, lifts, etc. Medicare also recognizes speech-generating devices (SGDs) as durable medical equipment (DME), which is a covered benefit for Medicare beneficiaries under the Social Security Act (Section 1861).

For more information on Medicare definitions of SGD, please visit https://www.asha.org/practice/reimbursement/medicare/sgd_policy/.

K. Hughes, D. Meissner, T. Meissner. “Your ALS Guide.” 2017,
http://www.youralsguide.com/ 

 

What do I need to pay for? 

Medicare, Medicaid, and private insurance will not cover a number of things that you may need; however, the Florida Chapter Equipment Loan Program may be able to assist in providing these items (equipment is subject to availability). Always discuss your options with your Regional Program Manager and ALS clinic team before spending any of your own money.

Examples that are not considered DME include:

Built-up utensils
All toileting equipment (except bedside commodes)
A pivot disc
A fully electric Hoyer lift 
A fully electric hospital bed

K. Hughes, D. Meissner, T. Meissner. “Your ALS Guide.” 2017,
http://www.youralsguide.com/ 

Contact your Regional Program Manager for help navigating the insurance system to obtain durable medical equipment and/or to arrange for loaner equipment. They may also be able to assist you with additional questions or concerns regarding DME.

 

How do I order durable medical equipment (DME)?

If you think that a certain piece of equipment would be helpful, discuss options with your Regional Program Manager and/or your ALS clinic team. 

1. Your physician (neurologist or primary care doctor) must write a prescription for each specific piece of equipment. Medicare requires that your physician write the prescription in person. It cannot be done over the phone.

2. Your doctor or ALS clinic will then order the equipment through their preferred local DME provider and schedule a physical or occupational therapist from a home health care agency to visit your home to train you.

3. The DME provider will coordinate payment directly with Medicare, Medicaid, and private insurance before contacting you to discuss payment details. (If the out-of-pocket expense is more than you can afford, do not order the equipment; instead, inquire about alternative options with the DME provider and your Regional Program Manager).

4. When the DME provider receives the equipment - typically within five to seven days - they will contact you to schedule delivery to your home.

5. Shortly after the equipment is delivered to your home, the physical or occupational therapist will coordinate a visit to train you how to use it.

K. Hughes, D. Meissner, T. Meissner. “Your ALS Guide.” 2017,
http://www.youralsguide.com/ 

Contact your Regional Program Manager for help navigating the insurance system to obtain durable medical equipment and/or to arrange for loaner equipment. They may also be able to assist you with additional questions or concerns regarding DME. Out of state patients may obtain resources for rental equipment by emailing Care Services or calling 888-257-1717 ext. 113. 

 

How do I order a speech-generating device? 

1. In order to purchase a speech-generating device through Medicare and insurance, your neurologist will need to send an order for you to have a speech evaluation with a speech language pathologist. This can be a lengthy process, so if you think you will need one in the near future, contact your ALS Clinic speech language therapist to begin the discussion.

2. Your speech-generating device will come with one free mount. You can choose either a wheelchair mount or a rolling mount. Rolling mounts are more suited for people who spend most of their time in bed and at home.

3. The durable medical equipment provider will come to your home to train you on the device.

4. You should not have to purchase one on your own; however, they are available online if need be.  

5. If you do not have insurance or have a co-pay that you can’t afford, ask your Regional Program Manager if they have a speech-generating device that you can borrow. You would still need a speech evaluation by a speech language pathologist in order to borrow and use one.

K. Hughes, D. Meissner, T. Meissner. “Your ALS Guide.” 2017,
http://www.youralsguide.com/ 

Contact your Regional Program Manager for help navigating the insurance system to obtain speech-generating devices (SGDs) and/or to arrange for loaner equipment.  Should you have further questions about AAC, please do not hesitate to contact a local speech-language pathologist (SLP) or the Florida Chapter Assistive Technology Manager at atprograms@alsafl.org or (813) 637-9000 ext. 118.

 

What do I do if I am uninsured, underinsured, in a nursing home/assisted living facility/hospice, or waiting for insurance approval? 

There are three options: 

1. Ask your Regional Program Manager about the Florida Chapter Equipment Loan Program and Augmentative and Alternative Communication (AAC) Loan Closet. Please Note: Equipment is subject to availability and this option may have a waiting list. Recommendation from your ALS clinic team/Occupational or Physical Therapist may be necessary for some durable medical equipment (DME). A speech evaluation from a speech language pathologist (SLP) is required in order to use a communication device from the AAC Loan Closet. 

2. Purchase a system outright; thus, the equipment would solely belong to you.

3. Rent a device from the Manufacturer.

Contact your Regional Program Manager for help navigating the insurance system to obtain speech-generating devices (SGDs) and/or to arrange for loaner equipment.  Should you have further questions about AAC, please do not hesitate to contact a local speech-language pathologist (SLP) or the Florida Chapter Assistive Technology Manager at atprograms@alsafl.org or (813) 637-9000 ext. 118.

 

How long is the loan period with the Equipment Loan Program? 

There is no time limit associated with loaner equipment, it can be used as long as it is needed. When the equipment is no longer being used, it must be returned to The Florida Chapter.

To return loaner equipment, please contact your Regional Program Manager or Sabela Rand, Chapter Program Manager, at 888.257.1717 ext. 113 or srand@alsafl.org

 

Why do you require a speech evaluation with a speech language pathologist (SLP) before offering a loaner speech-generating device (SGD)? 

1. The Florida Chapter wants to ensure that someone knowledgeable about AAC technology has worked with the person requiring the device. 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 in order to determine which device works best, more than one model of AAC device should to be considered. 

2. 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 person living with ALS is not only able to be trained on their device but also, once trained, the individual should be able to use the device independently (apart from some help from their caregiver(s)).

3. Even after receiving the initial training on the SGD, there may be questions, concerns, or even need for technical support. Building a relationship with an SLP during the speech evaluation will ensure needs are met now and in the future. 

 

Are there apps that can help me? 

Yes, there are numerous apps for Apple and Android products that have proved useful for people living with ALS and their families and caretakers. Please click on any of the following links for more information on these products.

Apple Apps
Android Apps
Apple and Android Apps and Reviews 

 

How do I know which AAC device is best?

Many families often inquire about specific devices they’ve heard about or have seen others use. It is important to remember that the progression of ALS is different for everyone. Approaching health care providers with questions about speech generating devices (SGDs) is a useful way to learn about the different AAC approaches. For expertise and advice about the use of AAC, contact your speech language pathologist, or SLP. An SLP will conduct an assessment to determine what strengths and challenges a patient encounters. The evaluation of a user's effective access and requirements for AAC will include the individual's motor, visual, cognitive, language and communication skills. The evaluation requires the input of family members and caregivers, who have direct insight into the person's daily routine, specific needs and wants. Respecting ethnicity and family beliefs are key to a family-centered and ethnically competent approach.

The Florida Chapter is happy to assist you with your communication needs. Contact your Regional Program Manager for help navigating the insurance system to obtain speech-generating devices (SGDs) and/or to arrange for loaner equipment. If you have any questions about AAC, you can also speak with your Speech Language Pathologist (SLP) or contact the Assistive Technology Manager at 813-637-9000 ext. 118.

 

What is voice banking?

People often link their identity with their voice, it is a unique and personal construct of who we are. All speech-generating devices (SGDs) come with standard, computer generated voice options (these voices have a similar quality as Apple’s Siri on an IPhone or Amazon’s Alexa. Voice banking is an alternative to SGDs voice options. It is a preservation method, which allows a person to "bank" their personal voice for the future. Some key features of voice banking to consider are:

It is a personalized computer generated voice created by recording (≥1,600) predetermined sentences using a headset microphone and your computer.
This voice can be added as an additional voice option for your SGD.
The resulting voice will sound less natural than the computer generated speech, which comes standard with your SGD, but may have a similar sound quality to your own. 

Voice banking is ideally done early, before a person experiences vocal changes. There are four software programs available: 1) ModelTalker, 2) VocalID, 3) Acapela My-Own-Voice, and 4) CeReVoice Me. Each company has different associated costs, requires different hardware, and different procedures to complete the voice banking process. A patient will be required to say predetermined sentences with a microphone while logged onto the company’s website. This process can be time consuming, and exhausting. It is recommended that those diagnosed bank their voices as early as possible, take breaks as necessary, and consult their local SLP to guide them through this process. Some helpful videos regarding voice banking are provided below.

TED Talks – Synthetic Voices 
TED Talks - Raising The Volume of Voice Donations
Voice Banking 

 

What is message banking?

Speech generating devices (SGDs) come with standard voice options, and many individuals who require the use of an SGD to communicate may not mind using a standard computerized voice. They may, however, prefer to convey personalized messages in their own personal voice. Message banking allows individuals to record meaningful messages in their natural voice, over time, using a portable recorder. Examples of messages often banked are:

Prayers
Phrases that are unique to the individual
Endearments (e.g., “I love you”, “Honey”, pet names, etc.)
Reading stories to children or grandchildren
Singing songs
Telling jokes
Messages or commands to their pets
Retelling life experiences to children or grandchildren (e.g., how they met their spouse, their birthday, etc.)

After recording, messages are uploaded to a website and later downloaded for use on your SGD. These messages can be used along with standard computer generated voices or voices created through voice banking. Some helpful videos regarding message banking are provided below.

Tips for Message Banking
Message Banking: Impact on Quality of Life of People with ALS/MND
Overview on Message Banking 

 

What is Unaided AAC?

Unaided Communication Systems rely on the user's body to convey messages. Examples include gestures, body language, and/or sign language. Unaided communication requires some form of motor control. Many times, we use unaided AAC without even knowing (e.g., raising of the eyebrows, pointing, darting of the eyes, shrugging your shoulders, etc.).  When your speech is impaired, these slight movements may help to provide additional information about the message you wish to convey.

Another form of unaided AAC is sign language. Many times, individuals living with ALS will ask if sign language is a good alternative to communicate. American Sign Language (ASL) requires brisk, detailed movements and the system is complex and requires the correct sequencing and coordination of the upper body. If a patient is experiencing difficulty with moving, sequencing, or controlling certain body parts, ASL may not be an effective solution to their communication needs.

Contact your local speech-language pathologist (SLP) and ask about ways to address these concerns. For more information on unaided AAC, click here.

 

What is Aided AAC?

Aided AAC require the use of tools or equipment in addition to the user's body. Aided communication methods can range from paper and pencil, to communication books or boards, to devices that produce voice output (speech generating devices or SGD's) and/or written output.  There are two types of unaided AAC: No/Low-Tech and High-Tech. For more information on aided AAC and the difference between No/Low-Tech and High-Tech, click here

 

What are some strategies to help others understand me? 

Speech intelligibility is how well someone else can understand what you’re trying to say. As ALS progresses, it may be difficult to be clearly understood by others. Listed below are a few strategies to help others understand you. We strongly encourage you to seek out the services of a speech-language pathologist (SLP) to help provide personalized strategies for effective communication.

Provide your communication partner context, or the topic, for what you are saying.  Knowing the topic of conversation makes a big difference in understanding speech that is distorted.  If your speech is difficult to understand, provide the context by writing or spelling the topic of your message.

Turn-taking signals.  Conversations tend to go very quickly and if your speech is slow, you may need to use clear signals that you want a turn.  These signals may take the form of an eye gaze, a breathing pattern, a body movement, a gesture, or verbal interjection.  Choose one or two that work for you and make sure listeners are aware of them.

Get your listener’s attention.  If your speech is difficult to understand, it is important that listeners are paying attention.  Before you begin a message, alert your communication partner by saying his or her name.

Accompany speech with simple gestures when appropriate.  At times, speech may be supplemented by simple gestures.  For example the palm extended in a halting motion, then a circular motion with index finger may accompany the message, “Stop and turn around where you are.”

Avoid communication over long distances.  Trying to speak with someone who is across the room or in another room is difficult.  If you need to call attention to yourself, a buzzer, beeper, or baby monitor may be useful.

 

How do I donate equipment to the Florida Chapter Equipment Loan Program? 

For information on how to donate equipment and what kind of equipment the Florida Chapter can accept, please click here

 

What does the Florida Chapter do with equipment that is donated? 

We understand how expensive it is to care for a person living with ALS and the importance of the equipment required to provide the best quality of life. Once an equipment donation is facilitated, we inventory the equipment into our Equipment Loan Program which offers temporary loaner equipment to Florida residents with a verified diagnosis of ALS who are uninsured, underinsured, who cannot access the benefits of their insurance (while in a nursing home, an assisted living facility, or hospice), or who are waiting for insurance approval. For more information on how to make an equipment donation, click here. 

Contact your Regional Program Manager for help navigating the insurance system to obtain durable medical equipment (DME), speech-generating devices (SGDs), and/or to arrange for loaner equipment. Should you have further questions about AAC, please do not hesitate to contact a local speech-language pathologist (SLP) or the Florida Chapter Assistive Technology Manager at atprograms@alsafl.org or (813) 637-9000 ext. 118.