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Title: T2RERC's third stakeholders forum attracts experts from throughout the Nation and overseas to Buffalo, New York to improve augmentative communication products
Author: Ernest K Churchwell
Published: 2001
Publication: Assistive Technology Transfer Update: Vol. 3 Issue 2 (Summer)
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Abstract
This article gives a very detailed account of the Third Stakeholders Forum. It includes a discussion on how and why the augmentative communication devices, for which the forum was held, would benefit consumer needs. The consumers, speakers and outcomes are discussed and quoted comprehensively.
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Full Text
- Our Background
Exploring the possibilities
Our RERC's current incarnation has a mandate to identify unmet consumer
needs and seek out innovative solutions, which we have carried out in a series
of Stakeholders Forums. In the past three years, T2RERC's prior ventures
into jump-starting technological evolution by putting end-users, researchers,
developers and manufacturers (collectively, "stakeholders") in a
two-day pressure cooker included major explorations of electronic innovation.
These wished-for technologies ranged from the programmable battery charger/monitors
for power wheelchairs explored at the Stakeholders Forum on Wheeled Mobility
in Pittsburgh, to the directional microphone arrays discussed at the Stakeholders
Forum on Hearing Enhancement in New York City. It's probably safe to say
that the conclave most awash in integrated circuitry was the Stakeholders Forum
on Communication Enhancement (SFCE) held in Buffalo, New York, this past June
by T2RERC, in partnership with the Rehabilitation Engineering Research Center
on Communication Enhancement (AAC-RERC).
- Consumer Needs
Communication Enhancement = making better AAC devices
Just what is meant by "Communication Enhancement" and by "AAC
devices"? We provided the following working definition to all the participating
stakeholders. "The term Augmentative and Alternative Communication
(AAC) refers to all forms of communication that enhance or supplement speech
and
writing either temporarily or permanently. The words augmentative and alternative
illustrate the concept that AAC can both enhance (augmentative) and replace
(alternative) conventional forms of expression for people who cannot communicate
using speech, writing, or gestural communication.
Individuals with a wide range of disabilities and ages could potentially make
good use of AAC devices. The number of United States citizens who are possible
beneficiaries of the technology has been estimated variously at 2.2 to 3.2
million, with one researcher predicting that AAC users will reach one percent
of the entire population by the year 2020.1,2 As about 10 percent of those
with communication disabilities have completely unintelligible speech, and
others have functional limitations that impair their efficiency, a great many
individuals could improve their lives with AAC equipment. However, only a modest
number are currently enjoying the use of AAC, due to a variety of issues:
- The expenditure required: Many individuals and their families are
unable to pay for them, with the more sophisticated devices running from
$4,000 to
over $14,000. Some individuals with particularly severe communication disorders
can be reimbursed by Medicare or private health insurers, but usually only
after an involved appeals process.
- The users'' abilities: Some who could
benefit from AAC technology have cognitive or physical limitations
that make devices currently on the
market
impractical.
- The knowledge gap: Some clinicians do not match a consumer
with the ideal AAC device, as they are not familiar with all the available
equipment
and its
abilities. Plus, some current apparatus is very complicated to program
and clinicians may not be trained to set up all features in the devices.
Although it will be broken down into particular aspects of the devices
for discussion in the Forum, this suggests that one of the primary needs
is for
equipment that is more "user-friendly" for augmentative communicators
and for health professionals.
Tracking both cause and effect
To follow these discussions, it is useful to know the terminology that
describes the different types of communication disabilities that
need to be accommodated,
as well as the classifications of the physical ailments that cause
them.
The prevalent speech impairments that can necessitate the need for
an AAC Device are:
- Dysarthria -motor speech disorder resulting from disturbed muscular
control of the speech mechanism;
- Apraxia -neurogenic speech disorder
(resulting from impairment of the capacity to program sensorimotor
commands) that affects the positioning
and movement
of muscles for the deliberate production of speech;
- Aphasia -an impairment of an individual's ability to understand
and formulate language.
The underlying medical causes of these conditions include:
- Congenital conditions (cerebral palsy, mental retardation, autism,
deaf-blindness, and developmental apraxia of speech);
- Acquired disabilities [traumatic brain injury (TBI), hearing loss,
stroke, spinal cord injury, repetitive stress syndrome, and laryngectomy];
and
- Progressive neurological diseases (multiple
sclerosis, muscular dystrophy, amyotrophic lateral sclerosis
[ALS, (commonly called
Lou Gehrig's Disease)],
Parkinson's disease, and Huntington's chorea).3
Each of these conditions can adversely affect the ability of individuals
to communicate during the course of daily activities.
A vast yet invisible population
Despite the above estimates of there being millions of potential
AAC device users, one cannot help but wonder, on an intuitive
level, whether
there
really are substantial numbers of people who can or do use computerized
devices
to speak. Even if you stay current on world events, the chances
are that, unless
your work, acquaintances or family happen to include contact
with an "augmented
communicator", you have probably only heard of particular
AAC users via two channels. They are: a print or broadcast profile
of a local individual
who needs financial assistance or who has accomplished something
even though he or she requires computerized speech aids, ...or
in a story spotlighting a certain world-class scientist. Dr.
Stephen Hawking,
an AAC success
story.
The holder of Sir Issac Newton's mathematics chair at Cambridge University,
England, the 59-year old astrophysicist has done groundbreaking work
on Cosmology, building on Albert Einstein's General Theory of Relativity
and revolutionizing
his field.
As someone who has long lived with ALS and Motor Neuron Disease,
and who entirely lost his limited ability to speak in 1985 after
pneumonia
necessitated
a tracheotomy,
Professor Hawking is, perhaps, the world's best-known augmented communicator.
Using a computer and speech synthesizer mounted on his wheelchair,
which are controlled with hand, head and eye-movement-operated switches,
he can
generate
up to 15 words per minute, and voice them or save them to disk.
Dr. Hawking's scientific and popular speeches have all been well
received, he says, thanks largely to the quality of his speech
synthesizer. On
the Disability page of his Internet website, Hawking observes, "One's
voice is very important. If you have a slurred voice, people
are likely to treat you
as mentally deficient: Does he take sugar?" The British
theoretician's one regret is that, as the first device that had
natural intonation
and did not make him sound like a robot, his California-made
Speech Plus
synthesizer gives him an American accent! (You can read
Dr. Stephen Hawking's frank,
optimistic, and occasionally droll comments on his life with
disabilities at http://www.hawking.org.uk/disable/dindex.html.)
The bigger picture
The fact that such a minute number of AAC users have risen to
the broader public consciousness does not prevent them from being
the
tiny tip
of an astonishingly
large iceberg. One of the more recent studies of disabilities
in the United States cited that, in 1992, 181,000 people were
living
with
cerebral palsy,
213,000 people had multiple sclerosis and 81,000 had been diagnosed
with ALS. All of these are disorders that very frequently impair
speech, particularly
as progressive ailments move into the later stages. Another scholarly
on-line article observed that, in the cases of severe communication
disorders, the
treatment speech-language pathologists prefer is utilizing an
AAC device.5
So why are many of us not encountering people who use computers to
speak, at least occasionally, as we go through our lives? Although
it does not explain
this absence entirely, as noted above, the expense of the equipment
is a factor. Having already gained an impressive reputation when
he lost his voice, Stephen
Hawking was sought out by developers who offered him technology to
try, an advantage few others enjoy.
And for those who get the equipment...
Perhaps augmented communicators don't get out into the community
as much, as many have difficulty getting work, ...or even
the education needed to apply for jobs, particularly if the impairment
is substantial! The
US Department
of Education reports that only 51.3% of students with any notable
speech or language disabilities graduate from secondary school.
Since those
requiring computers to speak are among the most severely impaired
speakers, the percentage
that graduate is even lower.6
While it's true that the widespread use of the Internet is opening
significant new educational opportunities, unfortunately, many persons
with disabilities
do not have full access to the Internet. According to the Disability
Statistics Center, just less than one-quarter of people with disabilities
has access
to a computer at home, and the fraction who connect to the Internet
is only one-tenth.
These statistics are particularly significant when considering that
over half of the non-disabled population has access to a computer
at home, and
almost
40% connect to the Internet.7
The noble quest for gainful employment
It's probably safe to say that the physical limitations brought
by most AAC users' causal disabilities would discourage them
from working
in
many unskilled positions (assembly line worker, day labor, janitor,
retail sales clerk, security guard, restaurant server, tele-marketer,
etc.).
Considering that education opens the door to skilled employment – and that gaining
the employer's confidence that you can do the job gets you over the threshold – it's
not surprising that over 85% of augmented communicators are not
employed. This is an unemployment level higher than that of any
other disability
group.8
To win that employer's confidence – or, if hired, to last through
the probationary period that permits dismissal without cause from many positions – it's
helpful to be able to function in the office setting and use
its commonplace tools. This is not always easily said nor done.
In a study done by the United Cerebral Palsy Association, two-thirds
of augmented communicators had significant difficulty using a standard
telephone and more
than one-third reported disconnection, or being hung up on by the
called party, when making local calls. Only 12% of the adult respondents
and
3% of parents
answering the survey for their children indicated that they knew
how to use a teletypewriter (TTY, a device for using the telephone
lines
by typing and
reading).
While the study did explore some promising communication alternatives,
it judged that abandoning the mainstream was impractical. More than
three-quarters
of
respondents expressed a desire to use the Internet. Twenty-seven
percent of respondents used e-mail, with 25% stating they used e-mail
at home,
and 15%
used it at work. Consumers' satisfaction level with e-mail was very
high, with an average score of 8.4 on a scale of 1 to 10, compared
to an average
of 4.1 for those who use the telephone. Despite the difficulties
listed, telephone use was cited as the preferred method of communication,
as
it is more readily
available than other electronic forms of communication.9
Seeking a better way
As in all assistive technologies, the ultimate goal of AAC is
to empower the end-users to achieve their maximum potentials – an
aim that should become more attainable as advances are made in
transferable computer
and
telecommunication
technologies. Enhancing the augmented communicators' ability
to converse and to provide information electronically or in print
will increase
their access to education and employment, and ultimately to independence
in
the community.
The words and lifestyles of AAC users testify to the technology's
value.
A Peer Counselor for the Center for Independent Living of Southwestern
Pennsylvania, Jennifer Lowe is also the Lead Ambassador for the
Pittsburgh Ambassador Program.
In that capacity, she aids fellow AAC users with equipment and
networking problems, and by "facilitating monthly readings at Semantic Compaction Systems,
and accompanying and encouraging them at speaking engagements". While
at the Forum, she stated, "I have had my Delta Talker for seven years… I
like it of course. I praise God for it, each and every day."
The AAC device can help you make connections, says stakeholder
Mary Ann Merchen from Dansville, Illinois. "While having
a communication aid and being able to communicate over the Internet
has made life richer for me, the increased
opportunities to talk with people have helped me to make a fool
of myself more times than I want to remember..."
Another factor to keep in mind: successful designs for new AAC
equipment will present significant business opportunities to
the technology
developers and
manufacturers that bring them to an ever-growing market.
- Before
the Event
Generating "White Papers" to brief
the participants
Prior to the aforementioned Stakeholders Forum on Communication
Enhancement, a group of stakeholders (including end-users, manufacturers,
researchers and
clinicians) participated in a six-week on-line panel and face-to-face panels
in Buffalo and Downey, California. (Details on the process used to ensure
full participation of communicators with disabilities are given
in the prior article "Accessing
User Input, Online and In-Person", in this publication.)
Based upon this work, four technology areas were deemed to have significant
potential for improvement. "White Papers" were written for each
of the inquiry topics, summarizing customer needs, the business opportunities
to be realized and the state-of-the-practice for each technology area. These
documents were disseminated to all participants prior to the Forum to start
them in the directions the discussions would be taking so they could "hit
the ground running" in the two sessions they chose. As the other article
observes, this is particularly valuable for augmented communicators who may
wish to prepare some of their thoughts in advance and store them on their
computers for use when appropriate.
The specific technology areas explored at the Forum were:
- Advanced Input Technologies
Improving the processes through which AAC users tell their devices what to
say or print is a high priority, particularly for individuals with limited
fine motor control, as they dictate the speed and clarity of communications.
Creating a more responsive, user-friendly interface could simplify training
by a Speech-Language Pathologist, and give the user an easier, more natural
avenue for day-to-day interpersonal interactions. Some promising technologies
that could play a role in providing faster, more accurate communication were
listed: "Dysarthric Speech Recognition; Gesture Recognition; Eye Gaze
or Eye Tracking; Virtual Reality Controls (e.g., virtual reality gloves);
Neurophysiological Controls (e.g., brain wave controls); and Multi-modal
Input."
- Communication Processing/Natural Language Processing
As a basis for discussion, stakeholders were told, "Communication
Processing (CP) can be summarized as the ability of an individual to process
input from
varying sources in the environment simultaneously and translate that input
at various levels in order to produce communicative interaction. Natural
language processing, (NLP) is the ability of a device to decode, integrate,
process,
and encode all sources of information/stimuli (visual, auditory, tactile,
etc.) for the purpose of communication using an established set of symbols
(pictures,
letters, words), structure, and meaning and communicative function." Advances
in NLP could enhance consumers daily living and societal inclusion through
improved Communication (clearly conveying ideas, feelings and attitudes
to others) and Literacy (complex use of language by building complete,
detailed,
logical and grammatically correct verbal and written dialogue). Key aspects
of this inquiry include performance measurement and enhancement, and context-based
word processing.
- Voice Output, Display, and Context Recognition
To synopsize the Output area in one sentence: "Researchers, manufacturers
and consumers have identified improved voice (e.g., personalization and increased
intelligibility), display (e.g., wireless dual-display, low-power, and sun-reflective)
and context recognition (e.g., interlocutor speech recognition, global positioning
systems -GPS) capabilities for Augmentative and Alternative Communication devices
as high priority technology needs." In order for an AAC user to interact
effectively in a variety of venues, the speech output should not only be clear,
accurate and efficient, it should be adaptable to express intonation, inflection,
emotion, mood and personality while sounding natural. Augmented communicators
need displays that are well suited for selecting, constructing and editing
their sentences, as well as glare-free and easily readable by the user and
the communication partner (or "interlocutor"). Displays can
even be virtual (projected on eyeglasses or separate small devices) or
dual
wireless (for simultaneous teacher/student or doctor/patient communication).
More
appropriate phrasing can theoretically be suggested by smart AAC devices
that incorporate
context recognition, factoring in information from the interlocutor's
words, gathered through voice recognition, and GPS-supplied location
and time data.
- Wireless Integration
You'd probably agree that the world at large increasingly enjoys the
benefits of wireless living, from pocket AM/FM radios and infrared
data ports on personal computers to GPS satellites – and AAC
users need to be part of that lifestyle revolution! For example, communications
technologies (e.g.,
cell phones, wireless phones, the Internet) are providing new and exciting
opportunities (e.g., social networking, recreation, education, work)
to many
individuals.
Wireless input capabilities may improve the ease of use, comfort, social acceptance
and communication rate of AAC devices. Inability to access these resources
places a person at a disadvantage that will increase as this technology becomes
even more pervasive within our society. Augmented communicators would benefit
from wireless input technology that eliminates tethering to the AAC device
and allows them to switch quickly and effortlessly from one input device to
another (i.e., to relieve fatigue, personal preference or in response to changing
circumstances).
This capability could also assist clinicians in testing the efficacy
of various inputs (e.g., infrared head pointers, eye gaze) without
extensive reprogramming.
It could even be employed to give the AAC users control of their daily
living environment, (e.g., temperature, humidity, lighting, window
blinds), and might
cut back on the demands on paid attendants and caregivers, while increasing
consumers' privacy and independence.
- The Stakeholders Forum
The Main Event!
As noted above, 75 manufacturers, researchers, scholars, resource providers,
advanced technology developers and product consumers with communication disabilities
from the US, Canada and the United Kingdom gathered in Buffalo, New York to
pool their expertise, June 5 and 6, 2001. In addition to the T2RERC and the
AAC-RERC, the sponsors of the Stakeholders Forum on Communication Enhancement
(SFCE) include: the National Institute on Disability and Rehabilitation Research
(NIDRR) of the U.S. Department of Education; and the Federal Laboratory Consortium
(FLC) - Southeast Region.
The Forum's express purpose was to identify and validate unmet consumer
needs, business opportunities, and specifications for technology solutions
that would meet these needs. The anticipated ultimate outcome for this project
is the introduction of innovative products and technologies that will have
a significant, positive impact on persons with communication disabilities.
Rolling up our sleeves
After an opening luncheon, Dr. Stephen M. Bauer of the University at Buffalo,
the organizer of the Stakeholder Forum and Co-director of the T2RERC, set the
stage and introduced the keynote speakers, who gave the participants a sense
of the exceptional promise this event held. They were: Ed Linsenmeyer, Vice-Chair
of the Federal Laboratory Consortium; Carol Cohen, Program Manager for Assistive
Technology Projects of the National Institute of Disability and Rehabilitation
Research; Barry Romich of Prentke Romich Company, representing the Assistive
Technology Industry Association and Communication Aid Manufacturers Association;
and Dr. Frank DeRuyter, the Principal Investigator of the AAC-RERC.
Thereafter, Carly Panchura, the T2RERC's AAC Demand-Pull
Project Manager, gave the stakeholders their marching orders for the first
set of concurrent
groups. The Stakeholders
The recruitment and inclusion of Forum participants whose interest in AAC springs
from so many sources, and the potential this mix offers, won some spontaneous
accolades.
One came from Michael McIntosh of Natick, Massachusetts,
a representative of Brain Activated Technologies, Inc., Yellow Springs,
Ohio, the developers
of
the Cyberlink Interface that can move and click the computer mouse by detecting
minute changes in brain waves and facial muscles. "There's a lot
of bright people here and… from the input that all of these people
have with each other, I really hope that their gathering will take the
technology much further along. I think there's a lot of people that have
technology
that's on the brink of being marketable or applicable to the mainstream
and they just need some nudges to get there. I hope that this is going
to help
a lot of people move in the direction they need."
Another old AAC hand was Robert Conti of Semantic Compaction
Systems of Pittsburgh, a producer of interface technology for communication
aids.
In his spare time
he works with a local grass roots organization SHOUT (Support Helps Others
Use Technology), the sponsor of an employment conference that annually
draws about 100 augmented communicators, plus professionals and caregivers. "I
believe, looking around this room, that most of the people that I know
in this field that are here are people that give 150%, that are some of
the
brightest
people in the field and that's why I came as well."
The presence of end users was appreciated by Katya Hill,
a clinical researcher in performance measurement at the AAC Institute and
the Center for Assistive
Technology Education and Research in Edinboro, Pennsylvania. "I
think one of the very positive things, right away, is the involvement
of the
consumers in the discussion and having their history and experience on
AAC clearly
articulated in a stakeholders document, which can only be a positive
for manufacturers
and other service providers and researchers. A lot of what research has
been done in the past, as far as looking at features, has been from a
closed perspective
of a more laboratory (centered) experience and not necessarily the experience
of the consumer actually using those features or that technology in their
daily environment. So, if that is the one and only thing that comes out
of this stakeholders
meeting is for researchers to be looking at formulating hypotheses or
research questions based from the perspective of the consumer, I think
that's
a big leap in what kinds of research should be done."
The game plan
Dr. Vathsala Stone, Director of Research and Evaluation
of the T2RERC,
described the structure of the two days and the divergent/convergent
process used to
stimulate discussion and capture the ideas produced.
"Discussions took place in four sessions simultaneously, each day, corresponding
to the four technology areas... Participants took part in two different
sessions, one on each day, depending on their expertise and interest.
"Moderators used pre-prepared scripts to guide the highly structured discussions.
A scribe recorded notes on a personal computer for reference and display;
another recorded points on a flipchart and a technical consultant aided the
moderator. The room layouts ensured that there were no visual barriers between
speakers.
"For each technology area, the consensus that emerged from the discussions
were systematically merged from one day to the next, then summarized and
reported at a general session at the end of the Forum."
Dr. Stone describes the ongoing monitoring of the process and gathering of
participant feedback to enhance the quality of successive stages of the
Forum in her companion article, "Stakeholders Share Voice and
Expertise at Forum on Communication Enhancement".
One speech expert recognized the vital function of group discussions.
Cheryl Trepagnier is a research consultant at the RERC on Telerehabilitation
at the US Rehabilitation Engineering Service's National Rehabilitation
Hospital, in Washington. DC, which works to provide rehabilitation services
to remote and rural areas via videophones. In a related effort, she works
with the Assistive Technology and Neuroscience Research Center, a program
of the
Army Research and Materials Command to make technology developed by the
military available to civilians with disabilities. The holder of a Ph.D.
in Linguistics,
and a background working in augmentative communication for the State
of Tennessee, Trepagnier is also a research consultant to the Autism
Society of America Foundation.
"I think that an intensive focus group among users of various devices would
be of enormous utility… That's just the place where you could learn
the most, if, when you observe people interacting with their devices… interview
and ask them to talk about their own experiences and insights and pros
and cons."
Taking a mid-stream reading
The Forum was structured with an on-site dinner at the end of the first
day, which permitted participants to chat and network with their colleagues
and
new acquaintances in an informal setting – and to tell Assistive
Technology Transfer Update how the event is progressing.
Working for the Department of the Navy in Florida, Federal Laboratory Consortium
Vice-Chair Ed Linsenmeyer has collaborated with Duke University on voice recognition
algorithms and on conduction microphones to amplify the vocalizations of dystharthric
individuals.
"(The sessions have) helped me to get a little bit more depth of knowledge
of some of the needs of the clients of the AAC community, which I hope to help
transmit back to the Federal Labs, where, I still believe, there's a lot
of untapped available technologies that can solve some of the issues that have
been brought up…. (They have recruited) a big broad base of people, bringing
many different viewpoints to the Forum, which is the intention and I think it's
working very well."
The Director of the RERC on Communication Enhancement at Duke University, and
a Forum co-host, Kevin Caves has a background of working with several aspects
of assistive technology for persons with disabilities, including augmented
communication, computer access, and environmental control.
"
I had the privilege to be able to be an observer and bounce from
room
to room... I think the discussion's going really well. The staff of
the T2RERC's doing a great job keeping the discussion under control while
gathering really good information that will help us down the road... I was
happy to hear that there's kind of a general consensus in problem areas.
That the ability for people to talk about it has actually shed some new light
on some potential research and development areas … for specific populations
(for which) I may have not thought about having a technology be applicable."
Some mid-point comments were offered by Lee Hartlieb, an augmented communicator
from Buffalo, New York, employing a Macintosh G-3 PowerBook with Newspeak programming,
whose "speech synthesis environment" was created by his father.
"I think we're delving into territory that only great visionaries
have pondered… I would like to see the rest of this Forum go (forward)
based upon the AAC devices we're using now and what changes we would like
to see in these devices."
Robert Conti saw the process spurring AAC development. "The users in
the group were talking about things that they needed immediately, whereas the
rest of the group was talking about dreams of gathering all the different technologies
that could be put into the systems in the future. The augmented communicators
were more, ‘What could we have now' and the researchers and the
rest of the forum were, ‘How could we implement all the possibilities
we could into the future in a five or ten-year plan?' I thought it was
excellent that we had both views, because the researchers were here for that
reason … to gather all the possibilities, and because the researchers
were interacting with the manufacturers and actually trying to be developers,
themselves."
Reflecting on her first group, consumer Jennifer Lowe expresses satisfaction: "I
have had input on the future of augmentative communication, which I think is
rather excellent." She also notes the importance of more compact, user-friendly
equipment, such as the light probe on her glasses that activates a computer
keyboard emulator. "I'm all for the individual, because they are
the ones who utilize augmentative communication devices. If they aren't
comfortable, it isn't beneficial to anyone."
Stephen McDonald, a Software Engineer with Assistive Technology, Inc. of Newton,
Massachusetts, is in the process of designing and programming a new generation
AAC device. He has gained some insight into the needs of language-delayed individuals
from his son, who is not an equipment user but is learning disabled.
One example of the exchange of ideas in the groups: consumers noted such annoyances
as switch-press timing that was too quick or voice synthesizer volume that
was too low for ambient sound, requiring adjustment in the computer's
virtual control panels. McDonald explained that existing technology could constantly
monitor for changing user responses and noisy conditions, "having the
computer be able to adapt to the user throughout the day… There are nice
small things that I could do now that, if it's done right, the user almost
wouldn't notice it... The device would just be more comfortable;
it would almost be like a glove with a good fit instead of something a bit
rougher".
One who remarked on its intimacy was Heidi Koester, a researcher in a related
field with the RERC on Ergonomic Solutions for Employment at the University
of Michigan in Ann Arbor, who has previously worked with augmented communicators. "One
thing I really enjoyed is, (the event's) fairly small – small enough
so you could talk to almost everybody here; and yet large enough that there
were a lot of different perspectives represented. I really liked the fact that
there were a lot of augmented communicators here, which doesn't happen
at every meeting I go to… I know that sometimes that's a challenge
to bring (AAC users) in and I've been grateful to the organizers that
they made that a priority; obviously, that's why we're doing this!"
Mid-point praise for consumers and clinicians in the Forum was voiced by P.J.
Musick, Knowledge Base Administrator of "one of the top five" producers
of AAC devices, Dynavox Systems. She feels end-user involvement in designing
AAC equipment is essential, "especially in this industry, because the
people who are designing them are not always augmentative communicators, and
it's absolutely critical to have their feedback, to see what challenges
they face, everyday... Maybe if they could take some time and reflect on
what kinds of things might enhance their communication efforts in different
venues, different arenas, that might help."
About the other stakeholders, Ms. Musick feels the clinicians "contributed
a great deal of information and insight and added value to the end product" and "are
a great resource for any manufacturer... It's a great idea to pool
all the minds, all the variables together in one place and have them mine them."
- The
Next Step
The outcomes of the Forum
The results generated at the Stakeholder Forum play a critical role in evolving
AAC devices by validating and extending our understanding of the customer
needs, business opportunities and technology specifications identified in
the earlier
work. "Problem statements" are being developed for dissemination
to Federal Laboratories, manufacturers in cutting-edge industries and other
sources of technological innovation. Dissemination efforts include: the development
of an AAC project web site on the Internet; articles in: NASA Tech Briefs,
FLC NEWS Link, trade journals and the web sites and newsletters of university
technology transfer offices, and technology transfer associations; and identifying
and making direct contacts to technology developers. Once these efforts bear
fruit by leading to innovative and valuable product ideas, commercialization
packages are designed and offered to manufacturers for transfer. Augmented
communicator Mary Ann Merchen offered a marketing suggestion to deal with abandonment
of less than successful AAC devices. "I think, if communication aids
could be leased, the problem of having some persons get them, only to put
them in closets might decrease, at least somewhat."
AAC-RERC Director Kevin Caves noted, "We've got a collaboration
with the Federal Labs in the Southeast Region, and a contact at the national
level. We're hoping that the problem statements that come out will be
able to help work through the lab system to identify technologies that will
improve devices, now and in the future."
The value of universal design in commercialization was noted by Jerome
Pesant,
who represents Ericsson Communications Canada in Montreal, a division of
Sweden-based multi-national corporation L.M. Ericsson. "The technology is there to
be used in service to humankind… It will be very (helpful if) they can
find the heart of technology can also be used by the mass market; that will
ease the access of specific technology that people with disabilities have to
acquire… If we get access to technologies that are open, accessible
and are ubiquitous, everybody will benefit, whatever community you're part
of."
Researcher Heidi Koester is looking forward to the Forum's publications. "I
appreciate the chance to be part of this and am looking forward to seeing the
proceedings in their more synthesized form… I'll take them seriously
and I'll look at them, and I will probably modify some of what I do based
on them… There's an outcome that I expected to have some significance
in the field."
Concerning technology transfer from unrelated disciplines, P.J. Musick,
of Dynavox is upbeat. "All the industries will do that. I think that
they'll imitate other (technology) and then integrate it into their systems… Everyone
is looking for what's best for the consumer, and if somebody else found
that out first, that's good for everybody, and we'd improve the
devices for the consumers."
An outcome with a useable result is desired by Katya Hill. "What
I'm hoping is that combining all of the information from the various
stakeholders,
we have a definitive document that can be used as a reference."
- Self-examination
A Look Back at SFCE!
A thorough reflection on the Stakeholders Forum was volunteered by Cheryl
Trepagnier of the RERC on Telerehabilitation. "I just really
enjoyed having the opportunity to sit and listen to, and talk with, these
people, both the old
guys I've know for decades and the new ones and especially the consumers… it
was a real pleasure. It's just always so fascinating, especially when
you get a chance to observe the whole picture and watch the person's
input method, watch them doing it, besides hearing what they had to say… It
was the first research area that really, really excited me."
"The greatest thing about it was getting to interact with these folks,
and so many of the issues and problems that were brought up are so clearly
far from resolution. I found it extremely stimulating to my thinking, and I have
a feeling it probably was to other people, too."
"I hope to get some collaboration from some of the folks I've met
here, including some of the people from Buffalo RERCs and related organizations;
and I think there's a big potential for mutual interaction in ‘Aug.
Com.' and Telerehabilitation."
Kevin Caves accessed the Forum enthusiastically. "One
of the best parts of this for me is to meet some of the consumers that I never
met before… their
input and feedback has been tremendous. From the variety of different access
methods and devices that they use, and their experience using technology
and their life experiences, it has been really great, and I think that T2RERC
has done a really good job assembling a great group of consumers…. To
make sure that there is strong consumer involvement throughout, that's the
really crucial thing… they've done that in a variety of different
ways with the AAC population ... including consumers in ways that
are consistent with their abilities."
His colleague and fellow Forum Co-host, Dr. Frank DeRuyter, Principal Investigator
of the AAC-RERC, had this to say about the Stakeholders Forum on Communication
Enhancement:
"I thought it was a great effort and I'm really looking forward to
what will come out of that... I want to acknowledge the Tech. Transfer
RERC folks. (In organizing the event, our colleagues) had an awesome job to
do... because
we have such a unique field in AAC. Not only do we have people with disabilities
but a unique disability: that of communication that takes much more effort
or time to communicate the messages, and I thought the responsiveness to our
end
users or augmented communicators, and including them in the process, was phenomenal."
- An Invitation
As noted above, much of the continuing activity of this Demand-Pull Project
will be on the Internet web sites T2RERC is setting up, which are targeted
for completion this fall, at the following addresses:
- Appendix
References
- Huer, Mary Blake. (1998). Augmentative and alternative communication:
Changing demographic patterns. "Projected Growth of AAC Users
by 2020"
- Beukelman, David R. & Mirenda, Pat (1998). Augmentative
and Alternative Communication. 2nd Edition. Paul H. Brookes Publishing
Co., Baltimore,
MD
- NIDRR. (1996). REHAB BRIEF: Augmentative and Alternative Communication.
[online].
Available: http://www.cais.com/naric/rehab_b/rb-15-3.html.
(October 30, 2000)
- LaPlante, M. and Carlson, D, (1996). Disability
in the United States: Prevalence and Causes, 1992. Disability
Statistics Report
(7). Washington, DC: U.S. Department
of Education, National Institute on Disability and Rehabilitation
Research.
- Augmentative Communication, Inc. (2000). Clinical
Aspects of AAC Devices. [online].
Available: http://www.augcominc.com/whatsnew/ncs3.html.
(October
20, 2000)
- Disability Statistics Center. (1997). Education of Children
with Disabilities. [online].
Available: http://www.dsc.ucsf.edu/UCSF/ 1. (April 23, 2001).
- Disability Statistics Center. (2000). Disability and the
Digital Divide. [online].
Available: http://www.dsc.ucsf.edu/UCSF/ (May
4, 2001)
- AAC-RERC. "AAC-RERC Research Project R5." [online].
Available:
http://www.aac-rerc.org/archive_aac-rerc/pages/ProjectSite/R5.htm.
(May 1, 2001)
- UCPA. (1999). "How People Who Use Electronic
Augmentative and Alternative Communication Devices Utilize Telephony." [online].
Available:
http://tap.gallaudet.edu/UCPA/default.htm. (May 1, 2001)
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