Augmentative and Alternative Communication
An
Overview of High Technology Solutions
for ALS Patients and
Caregivers
·
The Role of the Speech Language
Pathologist
·
Dwell Click / Cursor Control
Software
Augmentative and Alternative Communication, or AAC,
is the term used by the medical establishment for a variety of ways of
supplementing or replacing communication when an ALS patient is no longer able
to communicate normally. Normal communication includes speech, gestures,
writing, computer use, and phone use. Augmentative and Alternative
Communication includes low tech adaptation such as alphabet boards, lip
reading, communication boards and Morse code. It also includes high tech
adaptation such as computer based communication devices which may employ text-to-speech,
scanning, word prediction, voice recognition and infared head or eye tracking
technology. It may also extend into what is commonly referred to as
environmental control. This includes the ability to control everything from
televisions and stereos to lights, appliances, hospital beds, phones, doors,
drapes, thermostats, alarms and more.
Fortunately, the medical insurance establishment
views the ability to communicate as a medical necessity and therefore typically
covers the cost of adaptive equipment considered speech generating devices.
Unfortunately, the ability to use a computer for tasks such internet access,
which can be of extreme educational, entertainment and social value to the ALS
patient, is not considered medically necessary. Likewise, environmental
control, which can have a significant impact on the quality of life and
emotional well-being of the ALS patient, is not considered medically necessary.
The use of a computer to access the internet can be of extreme value to the ALS patient. Because ALS is a relatively rare disease, there is a wealth of valuable information and support that is rarely available in such volume or detail elsewhere. This includes the latest information about current treatment options and research advances, both of which are evolving rapidly, in addition to a variety of online support groups. For many ALS patients, especially those not located near a major metropolitan area, the internet offers the only real means of interacting with ALS experts and other patients. For patients who have limited speech ability and/or use of their arms and hands, the internet may offer the only real option for social interaction through email, chat rooms and bulletin boards and for independently directed and controlled access to news, education and entertainment.
The ability to use a computer opens up endless
possibilities not only for basic communication but also for creativity,
learning, employment, environmental control entertainment. It can be of critical importance in
enabling the ALS patient to be a proactive partner in their own medical
treatment and in allowing the patient some continued independence and control
as the disease progresses. It can therefore have a profound impact on the
patients quality of life and patients have testified to it making all the difference in
being able to tolerate their situations. Unfortunately, despite these distinct advantages,
computer based augmentative and alternative communication is high tech and
therefore inherently more complex. Because of its advantages and due to its
complexity, the remainder of this article will concentrate primarily on
explaining the features, options and trade-offs of the large variety of
computer based AAC technology currently available.
It is strongly recommended that the ALS patient
consult with a Speech Language Pathologist (SLP) who specializes in AAC. Many
SLP’s specialize in swallowing and speech disorders but not AAC, so be sure to
check. The term SLP’s use to describe speech problems is Dysarthria which
is defined as a neurogenic motor speech impairment which is characterized by
slow, weak, imprecise, and/or uncoordinated movements of the speech
musculature. SLP’s
can evaluate speech ability through the use of standard tests and can help
instruct the patient in techniques and interventions to increase
intelligibility and minimize fatigue. This may include methods such as speaking rate
modification, maintaining a coordinated respiratory pattern, maximizing
frequent listener hearing, minimizing environmental adversity, palatal lifts,
voice amplification and alphabet, topic and gestural supplementation.
Research has shown that when tests indicate an ALS
patients speech rate has decreased to half of normal (approx. 100-90
words/minute), a dramatic drop in intelligibility may be expected and AAC
techniques should be implemented. While high technology solutions have many
advantages, they can not be utilized in all situations and should therefore
always be supplemented by low tech solutions. At a minimum this should include implementing
strategies to resolve communication breakdowns and establishing a reliable
yes/no system. Qualified
SLP’s can present and demonstrate various high and low tech solutions and can
help patients and caregivers with training. SLP’s can also provide invaluable,
and sometimes required assistance in getting insurance coverage authorized.
Since
high tech computer based solutions tend to be inherently more expensive than
low tech solutions, a quick discussion of funding is probably appropriate. As
mentioned above, most medical insurance considers the ability to communicate a
medical necessity and therefore cover speech generating devices as either
prosthetic devices or durable medical equipment. Of particular significance is
that as of January 1, 2001, Medicare will cover and provide reimbursement for
some AAC devices. This Medicare AAC device coverage follows the withdrawal of
the long-standing guidance that referred to AAC devices as "convenience
items." Medicare typically will cover the speech generating computer equipment,
battery pack, wheelchair mount and switches (if required). They typically won’t
cover CD drives, carrying cases, wheelchair battery adapters, or anything not
specifically integral to the use of the speech generating device. Although restricted,
Medicare coverage is significant since many private insurance companies base coverage
on Medicare guidelines and policies.
Among
other criteria, coverage requires an assessment by a speech language
pathologist. Furthermore, the only devices covered are “dedicated“ speech
generating devices meaning they can’t be capable of being used for any purpose
(such as internet access). To meet this criteria, several manufacturers have
taken standard Windows based computer products and made them eligable for
Medicare reimbursement by modifying them to 'lock out' standard functionality
so that only the AAC software will work. Fortunately, most of these
manufacturers allow the purchase of the special codes/passwords etc needed to
'unlock' these devices and allow the computer to have the full functions
returned. The cost is typically nominal ($25-$200) but that additional cost is
NOT covered by Medicare.
Unfortunately, health insurance does not
typically cover the cost of software or hardware for internet access and/or
environmental control and for ALS patients whose speech is not impaired, will not
cover the cost of computer products. However, the cost of any prescribed
adaptive equipment is tax deductible. For ALS patients who are still working,
the state government may offer funding assistance through the Bureau of
Vocational Rehabilitation. For veterans, funding assistance may be available
through the Department of Veterans Affairs. Other options include equipment
loan programs that may be operated by the ALS Association, the Muscular
Dystrophy Association and local charities and service organizations such as the
Rotary, Kiwanis, Elks and Lions clubs. Local suppliers, support groups,
hospitals and churches are good places to ask about local programs. Another
alternative is purchasing used equipment either from local suppliers or through
the classified ads in local newspapers.
Due
to the progressive nature of the disease, the AAC needs of the typical ALS
patient will evolve over time as the disease symptoms progress. While this
evolution may vary somewhat depending on whether the patient has bulbar
(speaking, swallowing, breathing) or limb (hands, arms, legs) onset, the AAC
needs progression is fairly predictable. Because of the progressive nature of
these needs, it is important to attempt to select AAC solutions that can evolve
and adapt to the patients requirements as the disease progresses. This not only
minimizes total cost but helps minimize the patient (and caregivers) having to
learn new and different systems as requirements evolve. The following stages
detail the typical stages of patient ability associated with ALS disease
progression and the typical corresponding high tech AAC solution.
|
STAGE 1 |
Patient Ability: Able to speak clearly enough to be easily understood. Able
to use a keyboard adequately. AAC Solution: Computer (long term solution is a laptop) and internet
access. Education focusing on computer basics and expected future AAC needs
and options. |
|
STAGE 2a |
Patient Ability: Able to speak clearly enough to be easily understood.
Unable to use keyboard adequately. AAC Solution: Computer (long
term solution is a laptop). Voice
Recognition Software to replace keyboard input. |
|
STAGE 2b |
Patient Ability: Unable to speak clearly enough to be easily understood.
Able to use keyboard adequately. AAC Solution: Laptop computer
and Text-to-Speech software (long term solution) or Portable Speech Device
(short term solution, more portable) such as a Lightwriter. |
|
STAGE 3 |
Patient Ability: Unable to speak clearly enough to be easily understood.
Unable to use keyboard adequately. Able to
repeatedly move and click mouse AAC Solution: Laptop
computer, Text-to-Speech software and Onscreen Keyboard. |
|
STAGE 4 |
Patient Ability: Unable to speak clearly enough to be easily understood. Unable
to use keyboard adequately. Able to repeatedly move but not click
mouse. AAC Solution: Laptop
computer, Text-to-Speech software, Onscreen Keyboard, Dwell Click software. |
|
STAGE 5 |
Patient Ability: Unable to speak clearly enough to be easily understood. Unable
to use keyboard or move mouse adequately. Able to repeatedly move
and control head. AAC Solution:
Laptop computer, Text-to-Speech software, Onscreen Keyboard, Head controlled mouse. |
|
STAGE 6 |
Patient Ability: Unable to speak clearly enough to be easily understood. Unable
to use keyboard or move mouse adequately. Able to move any body
part repeatedly. AAC Solution: Laptop computer, Text-to-Speech software, Onscreen Keyboard with Scanning and Cursor
Control |
|
STAGE 7 |
Patient Ability: Unable to speak clearly enough to be easily understood. Unable
to move any body part except eyes. AAC Solution:
Laptop computer?, Text-to-Speech software?, Onscreen Keyboard?, Eye Gaze Control System
(options needed depend on Eye Gaze system selected) |
|
STAGE 8 |
Patient Ability: Unable to speak clearly enough to be easily understood.
Unable to move any body part including eyes AAC Solution:
Laptop computer, Text-to-Speech software, Onscreen Keyboard, Brainwave Control System |
Computer based hardware is the heart of all high
tech AAC solutions. There are basically four options available: 1) the common
desktop computer; 2) the laptop or notebook computer; 3) the tablet computer
and; 4) dedicated speech devices like the Lightwriter from Zygo Industries. The
desktop computer has the advantage of being the least costly, most flexible and
most easily upgradable of the four options. Its big disadvantage is that it is
not portable making it unsuitable for as a speech generation solution in stages
2b through 8. The laptop or notebook computer has the advantage of being
readily available, relatively inexpensive and of course is designed to be
portable. The tablet computer is essentially a laptop without an integrated
keyboard although it typically has an input for an external desktop style keyboard.
It has the advantages of being smaller due not having a keyboard and of usually
being more ruggedly built than the typical laptop. Its primary disadvantage is
its relatively high cost although ease of use by others, mounting and
serviceability can also be concerns. The last option is the dedicated speech
generation device such as the Lightwriter. These units are small (9”x5”x2”),
rugged computer based systems with small keyboards, optional scanning mode,
dual facing LCD displays and high quality text-to-speech output. They excel at
speech generation since they are designed specifically for that purpose and are
also very small and portable. The disadvantages of this type of device is that
they are relatively expensive and don’t support internet access, environmental
control or several of the stages outlined above.
With the exception of voice recognition software,
the system requirements for AAC are not particularly demanding. Processor
speed, memory and sound card quality all have a significant impact on voice
recognition software performance. This is especially true of laptop computers
which commonly have poor sound systems and of desktop computers built with
motherboards that have integrated sound cards. Voice recognition software
manufacturer minimum system recommendations are notoriously inadequate for
acceptable performance. For good performance minimum system requirements should
be at least
double those specified by the manufacturer. For the best performance you will
want an IBM compatible computer with at least an 800 Mhz Pentium III or Athlon
(not a Celeron or Duron) processor, 384 MB of RAM, a 7200 RPM hard disk drive
and either a Soundblaster Live! desktop sound card or a USB microphone.
The
system requirements for AAC other than voice recognition software are much less
stringent with text-to-speech software typically being the most demanding
application. As a general rule an IBM compatible computer with at least a 233 Mhz Pentium II
processor and 32 MB of RAM will usually suffice although you should check the
AAC manufacturers minimum system requirements to insure compatibility. This is
especially true of the Windows operating system as many AAC software vendors
don’t keep up with support for the latest versions. A large screen, such as a
17” or 19” desktop monitor or a 14” or 15” laptop display, is generally
preferable. This allows more space for both applications and onscreen keyboards
to be displayed as well as making a head contolled mouse easier to use.
When
choosing a laptop computer be sure it has a serial, parallel and at least one
USB port. It is also important to choose a laptop with a good sound system.
Unless you add external hardware, your laptops sound system will determine the output
volume and clarity of the text-to-speech software you use to communicate.
Laptops commonly have poor sound systems so it is a good idea to actually
listen to and compare different models. An easy way to do this is to bring a
regular music CD and ask the salesperson to play it. One option you may want to
consider is wireless network which allows you to connect to the internet
anywhere in your house without having to plug a cord into your laptop. Another
option you may want to consider is a wheelchair power adaptor that enables you
to power your laptop and other 12v accessories off of your wheelchair
batteries. Wheelchair power adaptors are available from Lastly, although most
laptops are similar in terms of how ruggedly they are built and how much abuse
they can take, there are a few exceptions. Probably the most well known is the
Panasonic Toughbook series, although a number of other companies make rugged
units for the military and industrial markets. These units are both shock and
water resistant and often sell for 2-3 times the price of a standard laptop.
After
sale support is a critical factor to consider in selecting AAC solutions,
especially those involving software. Sooner or later your going to have a
question or encounter a problem and the best of products is of little value
without strong, easily obtained support. Key questions to ask include:
1.
Does
the vendor offer free lifetime support or charge for support after a certain
period of time?
2.
Does
the vendor have a toll free phone number and what are its hours of operation?
3.
Does
the vendor offer email support and how long do they take to respond to
questions?
4.
Does
the product include easy to use online help and tutorial in addition to good
written documentation?
5.
Does
the vendor offer free lifetime software upgrades or charge for every new
software release?
6.
Are
upgrades and support available to subsequent owners or only the original
purchaser?
7.
Does
the vendor offer a demo period or money back satisfaction guarantee?
Software
licensing can also be a critical factor that influences the selection and ease
of use of various AAC software solutions. Some software licensed on a per user
basis meaning you can install and use it on all the computers you use: desktop,
laptop, home and office. Other vendors license their software on a per computer
basis meaning you will need to buy a separate copy for each computer. Still
other vendors allow you to only install the software a limited number of times,
typically three. Furthermore, some software is only licensed to the original
purchaser and can not be sold or even given to a subsequent user. To enforce
these various licensing schemes vendors may require you to call for unlock
codes, install hardware, use licensing disks or go through other gyrations to
install, uninstall or reinstall the software. On the other hand, some vendors
make the process easy and painless, choosing to trust that their customer will
not pirate their software.
Voice
Recognition software works with the spoken word in three ways. First, it
dictates your words into every application that accepts text input; second, it lets
you command and control most Windows applications (and the desktop) by speaking
commands; and third, it reads text back to you. There are two types of voice
recognition products, those that use discrete speech and those that use
continuous speech, or natural speech. Discrete speech recognition requires a
brief pause between every word. With continuous speech, or natural speech
recognition products you just talk to your PC naturally, at a conversational
pace. Your sentences appear immediately on your screen and in your document.
The current generation of products require the user to train the product to
recognize their voice by dictating a script for 5-15 minutes. Typical
recognition accuracy after training is about 95-98 percent.
There are essentially two manufacturer of speech
recognition products; Dragon Systems and IBM. Dragon Systems makes two
products; Dragon Dictate and NaturallySpeaking. Dragon Dictate is an older, but
excellent, discrete recognition product that features dictation, command and control,
macros and text-to-speech for a $189 retail price. Dragon NaturallySpeaking is
a continuous recognition product that is available in various versions
(Essentials, Standard, Preferred, Professional) available at retail prices from
$49 to $695. IBM doesn’t offer a discrete recognition product but does offer a
continuous recognition product called ViaVoice that is available in various
versions (Personal, Standard, Advanced) available at retail prices from $29 to
$109.
Dragon has long been the leader in voice recognition products and its products have historically been considered slightly better than competitive IBM product releases. Unfortunately, Dragon Systems agreed to be acquired by European competitor Lernout and Hauspie in June of 2000. Lernout and Hauspie quickly ran into financial trouble and filled for bankruptcy in mid 2001. Leading US software manufacturer Scansoft subsequently acquired the Dragon Systems voice recognition assets from Lernout and Hauspie in December of 2001. Scansoft recently released a new version of ViaVoice and the word is still out on how the two products compare. 21st Century Eloquence
Text-to-speech software allows those patients who
have lost their ability to speak a way to communicate audibly. Most programs provide a window into which text phrases can be
keyed and then converted to speech using the computer's sound card.
Speech can typically be started, paused, stopped, repeated or spoken one
sentence at a time. Other important features include:
Stored Phrases - Many programs allow the user to store and
organize commonly used phrases. Phrases can be as short as one word or as long
as several sentences. These could be organized into groups such as greetings,
food, caregiver requests, body parts, audio/video, jokes and so on.
Recorded Phrases – Some programs
allow the user (or a friend or family member) to record and store audio
phrases. This allows patients to record commonly used expressions in their own
voice as soon as speech begins to be affected by the disease. The pre-recorded
expressions in the patient's own voice can later be intermixed with phrases
that are keyed and "spoken" in the computer's synthetic voice.
Speak Clipboard – This feature allows text to be brought in
from any application by using Windows "cut and
paste" techniques. Thus, text prepared on a word processor can be spoken.
Select/Import External Files – This feature typically
allows the user select any plain text (.txt) format file to be spoken allowing
text prepared on a word processor to be easily spoken.
Phonetic Spelling – This feature allows you to enter exceptions
for the pronunciation of words. For example, the text-to-speech program may
have a difficult time with a word like “Albuquerque”. Bygiving it a phonetic
spelling such as “al buh kerkee” it is pronounced correctly.
The following is a list of text-to-speech products.
Some of these products are stand alone text-to-speech products and some are
included as part of an integrated product that may include other features such
as an onscreen keyboard and cursor control.
|
Vendor |
Product |
Product Type |
Cost |
Website Address |
|
AHF |
Reach |
Integrated |
$239 |
|
|
Catalaw |
Skeleton Key |
Integrated |
$199 |
|
|
ChipSpeaking |
ChipSpeaking |
Speech |
Free |
|
|
E-triloquist |
E-triloquist |
Speech |
Free |
If an ALS patient has lost the ability to operate a
switch because they are unable to move any body part, an eye gaze control
system may be an option. It is rare that an ALS patient loses the ability to
control eye movement even in the advanced stages of the disease when the
patient is totally paralyzed. Unfortunately, eye gaze control systems tend to
be very expensive ranging in price from about $2,500 to over $15,000. Key
enhancements and features include:
Keyboard Included – Some systems include a keyboard that must
be used, some include a third party keyboard may be used and others don’t
include a keyboard and can be used with any available third party keyboard.
Head Apparatus – Most systems use a video camera mounted on or
below a computer screen to track eye movement. Other systems employ a miniature camera mounted on standard glasses
frames in front of one eye, leaving the other eye a view of a computer and the
surroundings.
Head Position Critical – One advantage of eyeglass
mounted systems is that head position is not critical allowing the user to be
sitting, reclining or even lying in bed. Screen mounted systems require that you hold your
head relatively steady and typically only a couple inches of side to side
movement is tolerated. In most cases, you need to have a headrest so that your
head is well supported to minimize movement. If your head moves out of the
camera’s view and then back again, that is okay.
Mouse Emulation – Some systems essentially emulate a mouse
with the cursor tracking the directional movement of the users eye. Other
systems use a computer or eyeglass display and proprietary keyboard to control
applications on a separate computer system.
Zooming - Zooming
magnifies areas of the computer screen to allow the user to more reliably
execute a mouse action at a desired location. Users first look at a particular
area where they wish to perform a mouse action. A visual cue appears to show
that the area being stared at will be magnified if fixation continues. Users
then fixate on the zoomed in view at the precise location at which they wish to
perform their mouse action.
Dwell
Clicking – Most systems allow the user to perform a mouse
click by staring for a period of time (typically adjustable) at a particular point
on the screen .
Eye
Blink Clicking – Some systems allow the user to perform a mouse
click by closing
your eye (one or both) for about a half second.
Eye
Controlled Scanning – Some systems offer an eye controlled scanning option for users
who have definitive impaired eye movements and can only move their eyes in one
direction.
Dedicated
Computer Required – Some systems require a dedicated computer
and applications are run remotely on a second computer.
Text-to-Speech
– Some systems include text-to-speech software.
Phone/Television/Environmental
Control – Some vendors offer optional software that
enables phone use or television or environmental control.
Portable
Independent Operation – Some systems allow for either portable or
wheelchair operation, independent of the computer used to run applications, for
communication.
Power
Source – Some systems operate on 120v house current while
others can be powered by 12v/24v wheelchair battery systems or internal
rechargeable batteries.
Desktop
or Laptop – Some systems can be used with both desktop or
laptop computers. Other systems have hardware (PCI card and camera) that can
only be installed in or mounted on desktop systems.
The following is a list of eye gaze control
products.
|
Vendor |
Product |
Cost |
Website Address |
|
Assistive Technology Works |
ERICA |
$10,000 |
|
|
EyeTech Digital Systems |
Quick Glance |
$2,495 |
|
|
HK Eyecan Ltd |
Vision Key |
$4,500 (1) |
|
|
LC Technologies |
EyeGaze |
$14,900 (2) |
|
|
1. Customer also pays
Optician for lens measurement, installation and fitting. 2. Desktop system, $15,900
for wheelchair system. (prices include computer system) |
|||
Brainwave control systems are essentially switches
controlled by bioelectrical impulses measured at the forehead. These include
electrical impulses from eye movement or facial muscle activity and brainwaves.
Brain and body signals detected by the sensors in a headband are amplified,
digitized and transmitted to controller. This allows an ALS patient who is
unable to move any body part including their eyes to communicate and operate a
computer. While this condition, often called locked-in syndrome, is uncommon in
ALS patients because they rarely lose eye control, it does occur.
Brainwave control systems can typically be operated
by eye movement, facial muscle movement or brainwaves. It is usually a good idea
to learn the system while the patient has some ability to move their eyes or
facial muscles, since operating the system this way is easier than by using
brainwaves. When using the systems with eye movement the switch is activated by
moving the eyes up and down or right to left. When the eyes are kept still the
switch is in the “Off” position. When the eyes are moved the switch is
activated. The systems can also be controlled by muscle activity in the head,
face and jaw. When these muscles are relaxed the switch is in the “Off”
position. When these muscles are contracted the switch is activated. Lastly,
the systems can also be controlled with the mind. This mode requires no
movement of any kind. When the mind is quiet the switch is “Off”. When the mind
is excited the switch is turned “On”. Some methods for quieting the mind are:
closing your eyes; thinking of a pleasant, tranquil memory or scene; imagining
swinging on a swing as a child; imagining watching clouds; imagining listening
to a stream; bringing your awareness to your feet; visualizing things that are
blue or green, looking at blue or green flash cards or lights. Some methods for
exciting your mind are: making lists in your mind; visualizing things that are
red or orange; looking at red or orange flash cards or lights; becoming angry
or anxious; bringing your awareness to your head; reciting the alphabet
backwards rapidly; doing difficult math problems in your head; shouting in your
head.
The following is a list of brainwave control
products:
|
Vendor |
Product |
Cost |
Website Address |
|
Brain Actuated Technologies |
Cyberlink |
$1,995 |
|
|
Technos America |
MCTOS EMOS |
$1,995 $1,300 |
Every effort has been made to accurately and fairly evaluate
and compare the various products included in this overview. Every attempt was
also made to include all major products available and no products were
intentionally omitted. The author is an ALS patient and has no interest,
financial or otherwise, in any company or product evaluated. The evaluation of
the large number of products included was a significant challenge, made even
more difficult by limited 30 day demo periods or feature limitations on many
products, and the overview undoubtedly includes errors. Furthermore, although
the comparisons are believed to be accurate at the time the products were
evaluated, products are continually changing as they are being enhanced and
improved. Additionally, the author acknowledges the subjective nature of the
advantages/disadvantages charts. While every effort was made to be fair and
impartial the opinions of the author may differ from that of the product
manufacturer and/or reader. The reader
is therefore encouraged seek the help of a qualified professional and to do his
or her own evaluation to compare the most current versions of available
products. It is hoped that this overview will serve as a guideline for that
evaluation.