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Assistive Technology Transfer Update

 

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)

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

  1. 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).

  2. 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:

    1. 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.
    2. The users'' abilities: Some who could benefit from AAC technology have cognitive or physical limitations that make devices currently on the market impractical.
    3. 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:

    1. Dysarthria -motor speech disorder resulting from disturbed muscular control of the speech mechanism;
    2. 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;
    3. Aphasia -an impairment of an individual's ability to understand and formulate language.

    The underlying medical causes of these conditions include:

    1. Congenital conditions (cerebral palsy, mental retardation, autism, deaf-blindness, and developmental apraxia of speech);
    2. Acquired disabilities [traumatic brain injury (TBI), hearing loss, stroke, spinal cord injury, repetitive stress syndrome, and laryngectomy]; and
    3. 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.

  3. 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:

    1. 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."
    2. 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.
    3. 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.
    4. 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.
  4. 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."

  5. 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."

  6. 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."

  7. 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:

  8. Appendix

    References

    1. Huer, Mary Blake. (1998). Augmentative and alternative communication: Changing demographic patterns. "Projected Growth of AAC Users by 2020"
    2. Beukelman, David R. & Mirenda, Pat (1998). Augmentative and Alternative Communication. 2nd Edition. Paul H. Brookes Publishing Co., Baltimore, MD
    3. NIDRR. (1996). REHAB BRIEF: Augmentative and Alternative Communication. [online].
      Available: http://www.cais.com/naric/rehab_b/rb-15-3.html. (October 30, 2000)
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