The Family Center on Technology and Disability
Assistive Technology Works
Newsletter for August 2009
August 2009 - “...Whether acquired off the shelf, modified, or customized...” |
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“...Whether acquired off the shelf, modified, or customized...”
Digital era lore has enshrined the creative garage toolings of early computer wizards Steve Jobs and Steve Wozniak. Much less has been written about the early pioneers of the assistive technology world - amateur and professional engineers who cobbled together home-made devices in their own garages and basements, for their own children or for neighbors’ children whose parents were at a loss as to where to go for assistance. Some of those early ventures resulted in today’s most creative AT companies, among them RJ Cooper and Associates, Inc. (http://www.rjcooper.com/). For more than two decades those hands-on AT developers have offered inspiration and guidance to families, educators and disability professionals, seeing possibilities where others may see only obstacles. They see hope in small increments of accomplishment, in the glimmer of recognition and in the moment of contact with a child on the cusp of epiphany. RJ Cooper, Research & Development Pioneer, Speaks As an Electrical Engineering major first (with Digital Emphasis -- at the University of Utah in the early 1980s, RJ was present at the beginning of two confluent eras: the modern AT era and the advent of the personal computer age. The IBM PC had only recently become available and the Apple IIe was the only mini-computer that had made it through the fray of all the personal computer entries. “Things were happening so fast back then,” he says, “that I thought the computer had already been perfected to its limit. I thought I’d missed the revolution! I had no clue that we had only gotten our toes wet.” It was then, he says, that he glimpsed the potential of computers to aid individuals with disabilities in a way that was non-traditional. “I wanted to use the electrical engineering and digital skills I was learning to help people,” he recalls. He approached the Utah Division of Vocational Rehabilitation and the University of Utah Medical Center Rehabilitation Center. “People at both facilities agreed that computers would certainly be helpful but were unable to pinpoint how.” In short, he notes, “I saw a need that turned into a niche. But I was a student, not a business person, and the notion of a niche was alien to me.” Almost immediately he found himself pulled in four primary directions. “I was pulled toward the Rehab Department, which assigned me to a seven-year post-coma patient.” The patient, he recalls, was in her mid-20s. She had been hit by a drunk driver when she was 17. “When she awoke she thought it was the day after the accident.” Neither the doctors who assigned him to the young lady nor Cooper knew what approach he was going to take. “She took to the computer immediately. Within a week she was using a large keyboard and some speech feedback on the old Apple IIe to type words and simple sentences.” He was then pulled, he remembers, towards the Granite School District, Hart Vigsen Special Needs School. The principal there had become familiar with RJ’s work at the Medical Center and offered him an assignment at his school, which was attended by 207 special education students. According to RJ, the principal “gave me a budget, a classroom, computers and the run of the school for one year.” RJ was still an undergrad with no background in special education other than that which he acquired at the university medical center. “This was a perfect introduction to the world of special needs specifically and school districts in general.” RJ was then invited by the University of Utah’s Speech Pathology & Audiology Department to speak at a graduate symposium in which he, an undergrad, would collaborate with Ph.D. candidates. “I knew just enough to make things work,” he says. “That’s how under-populated the field was then.” His fourth opportunity was also with that same department. “It was my first consumer case,” he remembers. “The department did not know how to approach pervasive development delay (PDD). In other words, no one knew why the child in question was experiencing a delay.” The child was non-verbal but had no physical disabilities. “I brought in a computer and a program I’d written in which, when the student would correctly make the sounds, Eee. Ah, Ph, Ow a rabbit would move around a maze displayed on the computer screen.” RJ took out a small ball microphone, placed it in front of his mouth and demonstrated to the boy how pronouncing the Ahhhhhhhh sound made the on-screen rabbit move. “I then placed the ‘mic’ in front of the boy’s mouth. He opened his mouth and I thought, ‘This is going to work!’ Then he inserted the entire ball ‘mic’ into his mouth so that only the microphone stem protruded. That’s when I decided to return to school so I could learn more about this field. Upon moving to California, I made the switch from Electrical Engineering to Developmental Psychology.” After earning his B.A., RJ continued his research at the R.H. Dana Exceptional Needs Facility in Dana Point, CA and was for a time chief programmer for another AT pioneer, Don Johnston, Inc. RJ continues to research and develop special needs materials for children with mild to severe disabilities in response to requests by parents and professionals that support people with special needs, as well as persons with challenges themselves. Supporting our interview with RJ are resources related to the customization of AT. We also feature members of our Knowledge Network. We invite you to contact these members for further information. Please share this newsletter with other organizations, families and professionals who may benefit from it. We invite you to visit us at http://www.fctd.info. We welcome feedback, new members and all who contribute to our growing knowledge base. Matching Individual Needs with AT Options An Interview with RJ Cooper, AT Pioneer, Educator and “The parents of the profoundly disabled kids I help, as well as other children whose disabilities are less severe, regard computers as a means to an end for their child, the end being increased equality and integration with society,” declares RJ Cooper. “So does the school district. The kids, however, regard computers not as a part of their life but as life itself.” Often, he notes, a computer represents a child’s first and ultimate lifeline to the world. Without it, learning, communication, and/or socialization might not be possible. “In the case of AAC (Alterative and Augmentative Communication), I’m not teaching these young people to speak; I’m teaching them a new way of speaking. It’s almost like teaching them a foreign language versus a language they were born to. After sufficient practice, the goal is not to translate their thoughts into the new language, but to use the new language alongside their thinking,” he points out.
“At a trade show in Atlanta years ago I had passed by a booth run by two parents. Their daughter was with them. Megan was probably 11 years old then. As I walked past the booth I realized that her face was very ‘different’. Upon further inspection I realized that she didn’t have a face. She had two tiny slits for her nose. The rest of her face was just skin. Her face was very difficult to look at. I’ve since been exposed to many disabilities but I met Megan early in my career and thus her appearance put me off. Three days of the trade show passed. I saw her many times.” Each time he caught a glimpse of Megan he reminded himself, “I should go to her parents’ booth and at least try to do something.” Yet each time he approached the booth he procrastinated. “Finally, on the last day as the show was closing down, I said, ‘I have to do this or I’ll never forgive myself.’” RJ introduced himself to Megan’s parents. “They told me they had seen me all weekend working with kids and wondered if Megan was going to get a chance to work with me too. But they were not going to bring her to me because they had been rejected too many times before due to her appearance. I said to them, ‘I’ve looked at her for three days and I’d like to try to help.’ I then asked, ‘What else is going on with Megan beside the physical deformity?’” They replied, ‘We don’t know if there is anyone in there. She doesn’t exhibit much behavior.’ I invited them to my booth before I broke the booth down so we could experiment a little.” It turned out, he explains, that Megan was in there. “She was very physically disabled but, I discovered, she could push her left cheek against a button. Using auditory information only, she was able to time the switches and hit the switch without prompting. During her first session with the computer she was able to make some simple selections about what she liked and disliked. This was very exciting for me. I was the only one there, along with Megan and her parents.” He declares: “I have long said that if anyone comes to me with a need I’ll find something for that child or create something.” That Magic Moment: Contact – Then, What Next? That initial moment of contact, he explains “is an epiphany for everyone involved, especially the child but also for the special needs directors, doctors, parents and other professionals in attendance. It’s very dramatic.” Unfortunately, however, that moment is just a moment. For RJ Cooper the major question becomes, “How can that moment be sustained after I leave?” That’s a question for which he still has no answer, he admits. “Because of the way I conduct my workshops I meet lots of kids for short periods of time, 30 minutes per child. What I unfortunately lack is the luxury of longitudinal guidance and observation.” He continues to hope, however, that parents will contact him to let him know how their children are doing and whether they’ve been able to sustain the breakthroughs they made with him. He has concerns about the fidelity of implementation of the techniques he has introduced and would like to know that those who work with the child on a regular basis are following through on his recommendations. The Challenge of Building an AT Industry Adding to the problem, he says, is the lack of AT instruction at colleges. “Even graduate level courses in AT have failed to catch on,” he notes. “There are only 5-10 post-grad courses in AT nationwide and it has been that way for at least 10 years. In a growing field you’d expect to see more post-grad-level courses, but that has not been the case.” In his travels, RJ has seen a pattern of bias against technology designated as “assistive.” “I think there may be a stigma about any devices that are associated with special needs. I’ve had parents, usually fathers, say to me at baby expos after I’d explained my special needs based roots, ‘My kid is not special needs.’ They shut down. There is a real stigma.” Thirteen years ago, he recalls, “I had an infant daughter. I saw that my equipment, which was designed for kids with her level of cognition and physicality, might be useful for her to get a head start. My colleague and I took that equipment to every able-bodied baby expo in the country. “I always had two booths in order to be very visible. We made the same big buttons that we use in AT buttons and had very easy to understand software running on large monitors, hoping that mothers would wheel up their babies, who ranged in age from two months to three years old. Their children would be able to whack at the buttons and fun things would happen on the computer. We were certain this would be a big crossover hit. I invested several tens of thousands of dollars toward this effort with, as it turned out, zero return. Once again I was left scratching my head and wondering, ‘Why can’t this cross over?’”
That person, he explains, can be an OT, SLP, an AT specialist or a special education director – “but for some reason one individual emerges out of the fray to become the prime mover.” This individual, RJ says, attends the conferences, subscribes to the journals, searches online and experiments with AT tools. “These individuals go way beyond the call of duty. They make something happen. They take immediate action and and keep pushing until something works.” Such an individual emerged recently, he says, when RJ was working with a nine-year-old girl named Paige. “Her parents invited me in to work with her in front of school personnel after seeing me work at a United Cerebral Palsy event three weeks earlier. It was summer, so the only person to attend, of those who had been invited, was the Special Education director. With just the five of us there, I suggested that we postpone the session to a date in the near future when we could get the OT and the PT, the SLP and the Special Ed. teachers in the room at the same time so I could demonstrate the techniques Page’s parents saw me present and liked. The Special Ed. director rose to the occasion. She said, ‘No, Well, we’re all here, and you have your equipment. I’d like to see what you can do with her now. I rigged Paige up with a switch and assigned her tasks that were clear-cut. Paige fulfilled every assignment. Her Special Ed director was visibly moved. Right there, right then, she became that person, the one individual who will be Paige’s staunch advocate.” Early in his career RJ says he made an effort to spot these potential “heroes.” Now, however, “I try to hook up parents and professional staff with local resources, which I’ve catalogued throughout the nation. I learned that I can’t arrange the appearance of a hero like Paige’s Special Ed director. Usually, they emerge on their own out of the blue. When they do it’s always a happy surprise.” He cautions parents, however, that whether the hero is singular or plural, an individual or a team, there is a time limit attached. “This summer I participated in a summer camp workshop in Alabama for the University of Alabama. Things were going well with the technology training. The staff was open to new ideas. I told a mother whose child was a camp participant, ‘You have a great staff working with you this year.’ She did a double-take. She asked, ‘What do you mean this year?’ I replied, ‘In a couple of years or so you will have to work with an entirely new team because these people won’t be there for you. They will have new kids and as your child grows you are going to have to find new people to do as great a job as your current team.’ I was immediately sorry I said that because her face just fell. It brought back to her how difficult it was to assemble the current team. I had to remind her that she would have to do it again, and again and again.” Some, he remarks, “believe that my approach can be effective only in a quiet, no-distractions environment. That is a fallacy. The fact is that life is busy and full of distractions. I try to get the children into a real-life environment as quickly as possible, whether it’s a special day environment or community environment or the workshop environment. Whatever the environment, I don’t try to avoid distractions. I try to reduce them at first but then I want to have the child in an environment that’s as natural as possible.” Such an environment, he says, often includes interaction between the children and audience members. “Many of the kids enjoy visiting with the audience. If increased socialization is one of the goals pre-established for them (and it almost always is), I’ll encourage them to spell out the word ‘friend’ on the computer, using their best abilities (cognitive and physical) and then I’ll walk the child to someone special in the audience and warmly interact. The audience loves this and so do the kids.”
Adaptations for special needs are not limited to the computer or AAC devices. Popular consumer items also fall into the category of assistive technology. And the items that do are those that are popular with mainstream society. RJ states, “We have seen, of late, digital music players, recorders, cameras, camcorders, and phones, to name just a few. I note that parents tend to ask for adaptations for those items that are already popular with able-bodied persons. And they are ‘trend’ oriented, also!” The next popular technology trend, he predicts, is the digital camcorder followed by video capability in phones (the latest iPhone just incorporated this feature). “The video camera itself has gone completely digital and is in the realm of affordability. A year ago I could not have said that.” Within the past year, he notes, at least three companies have made video cameras in a digital format with the same filming capacity – two hours – as regular video cameras. You have seen TV shows showing funny or captivating video. These were all shot with regular video cameras. But the age of the *digital* camcorder is almost here and when a person can whip out a pocket sized camcorder, video online and on TV will boom! “And those are the type of requests I get for adaptations, whatever is popular in the mainstream. Within the past year, we started adapting digital still cameras and recently added digital camcorders to our inventory of adapted consumer products. We look at what people want – even it’s only for one person – and adapt. I had an individual who wanted a dog feeder adapted for her daughter recently. She wanted her daughter to be able to give her dog a treat. So I purchased several electric dog feeders, chose the smallest and adapted it for single-switch.” “Whatever the trend is – whatever people want to do – guides me. I don’t wonder, ‘What else can I invent?’ I am always surprised at the ideas people come up with but cannot do anything about it because they lack the means to bring to reality. The truth is that not many manufacturers of off-the-shelf technology are responding to individual requests or needs. However, if you call someone like me something will be done about that idea within a week.” “What Do You Want Your Child to Do That He Is Not Doing Now?” Once started, however, parents can often make a significant contribution during the brainstorming process. One parent, RJ says, knew exactly what he wanted from the outset. He contacted RJ with a specific request: He wanted his son Philip to be able to operate his computer by using the big toe on his right foot. The parent envisioned a box with 10 buttons on it, each the size of a quarter. And each would be operated by Philip’s right toe. All buttons would be connected to computer functions, like moving a cursor. Other buttons would take Philip to a website or other web destinations. The parent initiated the process with an email. Remembers RJ: “I asked him to give me a day. Twenty-four hours later I had created what he needed. The box I created had 10 buttons, square rather than round. I said to him, ‘I’m shipping this out today.’ He asked what he owed me. I replied, ‘Nothing. Let’s see if it works first. ’ A week later the parent informed RJ that the device was a success. He also sent photos showing RJ the equipment in action. “I was leery about whether Philip could memorize the position of these 10 buttons which were placed outside his range of vision. But Philip’s dad made a graphical legend for him located within Philip’s view so each button’s function was visible to Philip. Philip loved that contribution. Together his dad and I made something that Philip could use that week!” Later, RJ recalls, “The dad came across my track ball on my website and suggested using that. He bought one. They used it for two weeks before Philip went back to the little button box.” “User Control is Paramount” In his direct work with children, RJ touches on all aspects of AT. “But I usually must focus on communication and/or academic goals because I only have 30 minutes with each learner and I have to make something great happen within that time frame. Recreational use of the AT for purposes of relaxation (TV, music…) or to play a game is not as practical during my sessions as pushing the child outside of his comfort zone on the computer, that is, getting him to do something today that he didn’t do yesterday. I don’t discount recreational use of the computer. It is very important. Both uses of AT, computer (communication/academic), and recreational (TV, music, games, etc.) are equally important.” The upside to the popularity and proliferation of devices like the iPod, RJ observes, “is that with the iPod and the Wii we have a stimulus. Before the iPod we had no real stimulus for letting special needs kids have, create or control their own music in the real world. The current trend has created the needed stimulus. Parents email me and ask, ‘How can I get my child to participate in Xbox 360 games?” This development, he remarks, has stimulated parents and sometimes teachers to investigate options. Remember, he cautions, “the recreational aspects of AT usually involves parents much more than professionals. When I use the expression ‘trend’ I use it on a popular level. The trend to have a child on the xBox 360 creates a stimulus for the parent to ask, ‘How can I have my special needs child participate in it? She loves watching her brothers play it but she’s not doing anything. What can we do?’ This creates a stimulus on the part of the parent to do something to involve their child in that trend.” Whatever technology trends finally emerge for special needs children, though, RJ Cooper insists he’ll judge their usefulness as he did during the 1980s: Will they help a child to do more today than yesterday? RESOURCES ARTICLES MathType Communicate: Webwide TypeTrainer4Mac
Kurzweil, Language, UDL and RDI
Laura Ann Oliver’s Short Film on Assistive Technology CATALOGS Limited Dexterity Switch Adapted Game Controllers KNOWLEDGE NETWORK MEMBERS
For more information, contact:
In addition, lab participants are encouraged to communicate with other children with disabilities through the “Discover a Pal” pen pal e-mail program on the company’s website, which features a directory of links to hundreds of sites of interest to persons with disabilities. For further information, contact:
Among STC’s projects are:
For additional information, contact:
Collaborative Center for Assistive Technology and Training (CCATT)
Project Officer: Jo Ann McCann |
Many people who work with children with disabilities will recognize that phrase from the definition of assistive technology (AT) in the Individuals with Disabilities Education Act of 2004 (IDEA). This month the Family Center turns its newsletter focus to an icon of the AT industry, someone who has spent several decades modifying and customizing devices to serve the needs of the broadest range of children with disabilities – RJ Cooper.
Finding Megan
The Stuff of Champions
“Necessity is the Mother of…”
RJ Cooper & Associates
Access Services of Northern Illinois
Discover Technology Inc. 
Simon Technology Center (STC)
Centrum for Disability Services (CDS)
Adaptive Technology: a Division of Perkins Products
Kern Assistive Technology Center (KATC)