Frequently Asked Questions

  1. My voice is very soft but I can still speak. Is there anything I can use to make my voice louder?

  2. Although I have a lot of trouble understanding my husband’s speech, he is very resistant to using any type of communication aid. Is this normal?

  3. Will using an electronic communication aid make my speech impairment progress even faster?

  4. Can I use recordings of my own voice to program into an electronic device?

  5. I’m told that electronic communication systems are expensive. How can I get help to pay for it?

  6. How can I find someone to recommend a device?

  7. How can I keep using a computer without being able to use my hands?

  8. Are all electronic aids computers?

My voice is very soft but I can still speak. Is there anything I can use to make my voice louder?

In the early stages of ALS, when the muscles involved with breathing and voice production may be weakening, speech amplifiers can increase the loudness of speech. This also minimizes the strain and fatigue associated with speaking. When a person’s speech is becoming difficult to understand because the muscles controlling the lips, jaw and tongue are affected, however, amplifiers are not effective.

Issues in selecting amplifiers include the: a) quality of the amplifier, b) portability c) whether the device will be cost effective as a temporary solution d) how and where to mount or carry the microphone.  (Augmentative Communication News,1998)

 See amplifiers listed in the CINI Guide to Commercially Available Devices

Although I have a lot of trouble understanding my husband’s speech, he is very resistant to using any type of communication aid. Is this normal?

Yes, this is normal. Not surprisingly, some people with ALS do not view augmentative communication techniques as welcomed solutions. Promises of being able to hit a switch, gaze at a board to select a word or use a computer to say something intimate to your spouse sound like very bad news, especially if the person can still talk and write. When individuals with ALS perceive their speech impairment differently from professionals and family members, they may not accept their recommendations. Only when the severity of the impairment is perceived as a problem to the person with ALS will he consider AAC. Even then, some people see the use of AAC as giving up hope or an admission of the severity of their condition. In fact, many people with ALS don’t accept any AAC until they reach the later stages of the disease and some will decide never to use any AAC. (Augmentative Communication News, 1998)

Will using an electronic communication aid make my speech impairment  progress even faster?

Most PALS (People with ALS) continue to speak for as long as they feel it is functional for them.  They often find it is faster to have whoever they are speaking with try to understand them, rather than use a communication aids. Therefore, most PALS keep speaking for as long as it is functional, and some keep on using speech even after it becomes unintelligible to people who know them very well.

At the point when the struggle to make oneself understood becomes a major barrier to communication, however, many PALS want to use some type of communication aid.  Thus, it is the severity of the speech impairment that determines the need for the aid, rather than the aid having some type of influence over the severity of the speech impairment.  

Can I use recordings of my own voice to program into an electronic device?

Many PALS (People with ALS) would like to use their own voice. Currently, it is possible to record one’s own voice and store the messages into an electronic aid producing digitized speech. However, these types of devices do not permit the user to spell messages.  Rather, messages are limited to prerecorded items, and so there is no spontaneous creation of messages through spelling that can occur.  

The devices that PALS typically use are those that produce synthesized speech, which is artificially produced, but allows the user to spell whatever he wants to say and then have it spoken.  Currently, the DEC Talk synthesizer, which comes with eight different voices (male, female and child) is the one most widely used in commercially available devices.

The ability to record one’s own voice and then use it in a device producing synthesized speech (voice banking) is currently under development at the Speech Research Lab at the A.I. duPont Institute for Children and the University of Delaware in Wilmington, DE. http://www.asel.udel.edu/speech/users.html

I’m told that electronic communication systems are expensive. How can I get help to pay for it?

There are three primary funding sources for augmentative communication devices available to PALS: private medical insurance; Medicaid and Medicare. Most state Medicaid programs and many private insurance plans will cover AAC devices when they are necessary to treat a severe expressive communication disability. Medicare, the nation’s largest health services funding program, will provide reimbursement for the cost of purchase or rental for an AAC device, if a person goes through an appeals process and presents his case to an Administrative Law Judge (http://www.nls.org/medihmo.htm.)

To apply for funding or reimbursement for an AAC device, most state agencies and programs require an evaluation by a licensed speech pathologist and a letter of medical justification signed by the insurance beneficiary’s treating physician.  Depending on the insurance policy, AAC devices will be covered as an item of durable medical equipment or as prosthetic device.

Private organizations including churches, synagogues, fraternal organizations, and businesses can serve as alternative funding sources. Loan closets run by local chapters of the ALS Association, MDA or evaluation centers that provide augmentative communication services are able to lend devices to individuals either in the application process or who are ineligible for funding elsewhere.

How can I find someone to recommend a device?

The first step in device recommendation is an evaluation to determine which device best meets a particular PALS’ abilities and needs. Evaluations are usually conducted by a team of professionals including a speech pathologist who specializes in augmentative communication and an occupational therapist specializing in assistive technology. Other professionals who may be included are a physical therapist and a rehabilitation engineer. Usually, these teams work in centers specializing in assistive technology or augmentative communication, located in hospitals, university clinics or not- for-profit organizations. The centers typically have an array of equipment available to them so that the PALS can try a number of devices that might meet his needs. While some of the teams make on-site visits, many of them only evaluate PALS at their center because of funding regulations and the difficulty in transporting equipment off site. The result of an individual evaluation is a set of recommendations, which may be for no technology at all, for simple devices or techniques, for sophisticated technology, or most commonly, for a combination of low-tech and high-tech solutions to the problems identified during the evaluation process. In most cases, the evaluation center does not provide or sell any products, but instead gives detailed information on recommended products and where to procure them. Once the team arrives at a recommendation, a report is written and sent to the appropriate funding source. Many centers will provide training in the use of the device once it is obtained. In addition to teams working in augmentative communication/assistive technology centers, a qualified specialist in private practice can also administer an evaluation and may have greater flexibility to work with someone in his home. However, the specialist must have the necessary equipment available to him and be able to call upon other specialists when their expertise is required.

It is essential that a PALS receive an evaluation, rather than directly contact a vendor of communication devices, although a vendor may also be involved in the process. An evaluation by objective professionals will allow the PALS to make an informed choice from firsthand experience with a variety of devices. There is only so much that can be learned from a catalog description, or even from a demonstration by someone who sells a product.
(See http://www.kornreich.org/services/evals_article.htm for further discussion about evaluations).

Referrals to professionals who specialize in augmentative communication can be obtained from the following organizations:

 Other Resources:
"Service Providers Network in the field of augmentative communication" at www.augcomm.com/service.html

 

How can I keep using a computer without being able to use my hands?

 There are many ways to operate a computer besides typing or clicking on a mouse. These include:

Accessibility features that come standard in Windows and Macintosh operating systems, allowing modification of mouse movement, one finger typing, use of the keyboard for mouse movement, etc.

Alternate keyboard
   Separate keyboards that can be attached to a computer and take the place of the standard keyboard. For example, some of these are smaller than the standard size, making it easier for those with limited movement to reach the keys. 

On-screen keyboard
   Software that places a keyboard on the computer screen, allowing selection of letters, numbers, control keys, etc., through alternative pointing devices such as head pointing, eye gaze and scanning (see below)

Scanning
    A method of selecting items used by those with very limited movement. Letters, numbers, etc., are selected from an on-screen keyboard through control of a switch. The switch is mounted where the user has the greatest control of his body, e.g., head movement. Typically, when a moving cursor on the keyboard reaches a desired item, the user activates the switch.

Eye gaze
    A method of selecting items from an on-screen keyboard through eye movements.

Morse code
A method of selecting items through one or two switches producing dits and dahs of Morse code.  Through special software, the computer translates the switch activation into letters, numbers, etc.

Decisions regarding selection of any of these methods are based on the physical abilities of the PALS. Because of the progressive nature of ALS, the alternate access method may have to be modified or changed as the individual’s physical abilities change.

For further information, see the CINI Guide to Commercially Available Devices, Products/Manufacturers'/Prices.

Are all electronic aids computers?

Electronic communication aids can be divided into two categories. Dedicated devices are those whose sole purpose is producing speech output. Computer based devices are those which are computers with special software and hardware that give them the capabilities of a dedicated device, in addition to their computer capabilities, such as e mail, Internet access and word processing.

One of the major decisions a PALS who needs to use an electronic aid must make is to select between either type of device depending on his needs.

For a comparative listing of dedicated and computer based devices, see the CINI Guide to Commercially Available Devices, Products/Manufacturers'/Prices.