ALS often affects the ability to speak and communicate effectively. This can be the most frustrating loss of function that a patient will experience. There are a lot of devices and strategies that can be utilized to keep communication between PALS and their caregivers clear.
Here are some products/information that you may find helpful:
If you are having trouble using a telephone, one way to continue to make and receive phone calls is though an Internet Relay.
PALS often consider using a device to help them communicate. These devices are called AAC (Augmentative and Alternative Communication) devices. There are a range of devices available on the market. Each PALS' situation is unique, but the following FAQ's should address some questions that you have regarding AAC devices.
Another good resource for information on communication devices can be found at www.aac-rerc.org
1. 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.
Occasionally we have voice amplifiers in the loan program, so check with the Assistive Technology Specialist at the ALS Association, Greater New York Chapter, before pursuing other methods of funding.
Be cautious when using insurance coverage for a voice amplifier. These are relatively inexpensive items. If your insurance purchases a voice amplifier, you may have difficulty getting any other communication device at a later date.
2. Although I have a lot of trouble understanding my family member's speech, they are 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, to gaze at a board, or to use a computer to say something intimate to your family member sounds 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 they consider some sort of communication intervention. Even then, some people see the use of any sort of communication equipment as giving up hope or an admission of the severity of their condition.
One suggestion would be to record your family member talking and have them listen to how they sound. This can be discouraging to the PALS (Person with ALS), but it may be what they need to hear. Often there is a lot of frustration when the PALS does not realize how hard they are to understand, and having them listen to a recording of their speech may help them to realize how poor their speech is.
3. Will using an electronic communication aid make my speech impairment progress even faster?
No, the progression of ALS is totally independent of any use of a communication device or aid. PALS may find a communication aid helpful, even when they have speech, in order to communicate with strangers. Often family members will be able to understand a PALS impaired speech for an extended period of time. The process of obtaining an electronic communication aid can be lengthy, so starting the process when the PALS speech is still intelligible is recommended. By obtaining a device when the PALS speech is still intelligible to some extent, the PALS will have the opportunity to learn how to use the device while still being able to use their speech when they get frustrated or when they are speaking with family members who have gotten used to their slightly impaired speech.
4. Can I use recordings of my own voice to program into an electronic device?
Many PALS 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 recordings in the electronic aid 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/she wants to say and then have it spoken.
The ability to record one's own voice and then use it in a device producing synthesized speech (voice banking) is possible. There is a software program that will allow you to do this through an extensive recording session. The technology was developed at the Speech Research Lab at the A.I. duPont Institute for Children and the University of Delaware in Wilmington, DE. For more information go to:
5. 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. Basically, Medicare, most state Medicaid programs, and many private insurance plans will cover AAC (Augmentative and Alternate Communication) devices for individuals who have a speech impairment. To find out if your private insurance has coverage for a communication device, ask your insurance company what your coverage is for a Speech Generating Device (SGD). You may need to make multiple phone calls and talk to a supervisor before you get a definite answer because this is not a frequently used benefit of private insurance.
To apply for funding 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.
Private organizations including churches, synagogues, fraternal organizations, and businesses can serve as alternative funding sources. The ALS Association, Greater New York Chapter, has a loan closet that provides communication equipment to individuals either in the application process or who are ineligible for funding elsewhere.
There are grant programs available through certain resources if you do not have insurance coverage for the full cost of the communication device. Call The ALS Association, Greater New York Chapter for more information.
6. 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.
7. 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.
- An 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 a mouse, trackball, or alternative pointing devices such as head pointing, eye gaze and scanning. Some computers have a simple on-screen keyboard built into the accessibility options. LINK Onscreen Keyboard, LINK Trackball, LINK Head Mouse
- 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.
The types of communication devices that PALS typically obtain through their insurance can also be used for computer access. Depending on the funding source for the device, the PALS may have to pay a fee to access the standard computer functions, e.g., internet access and word processing. The professional that does the AAC evaluation can answer questions about computer access through the communication device.
8. 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.
If you have any assistive technology related questions, you can email Benjamin Lieman, ATP Assistive Technology Specialist or call the office at (212) 720-3057.