Michael’s accident occurred during his freshman year of engineering and so, unlike many others who are newly injured, he understood the possibilities technology might offer him. Michael’s primary concern is function and he uses a combination of high-tech and low-tech devices along with carefully thought-out strategies, to maintain his independence and maximize his efficiency. In his words, “I’m not looking for fashion, I’m looking for functionality.”
Recently separated, Michael is living on his own for the first time since college. While he has always had the support of either his parents or his ex-wife in meeting his day-to-day needs, Michael has spent the last two years exploring new and different ways to meet these needs. Now, he manages all of the essential functions of daily life using Personal Care Assistants (PCAs) and assistive technology. Michael believes that the “goal is to become as independent as possible” and he is confident “that through assistive technology, it is a possibility … a definite probability.”
Managing his personal care system while maintaining a full-time job and doing volunteer work has been challenging and sometimes overwhelming for Michael. He says that, because of his disability, it takes longer to do everything. Due to the demands involved in juggling full-time employment, volunteer work, and his disability-related needs, and because he also wants a new professional challenge, Michael is making plans to leave his engineering job after 29 years and establish a non-profit consulting company.
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When he was first injured 30 years ago, Michael was exposed to an environmental control unit (ECU) that facilitated access to devices such as lights, TV and stereo. It used a scanning system, which automatically highlighted his choices in turn; when his desired selection was lit up, he could select it by pressing a switch. When he went home from rehab, Michael had two ECUs—one in his study and the other in his bedroom. He had difficulty operating the system when lying down and used it mainly for the lights and TV. Because of the ECUs’ limited usefulness and the support from those around him, Michael gradually found other ways to accomplish tasks and stopped using them altogether.
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See Michael open his apartmennt door with his “rope system”. Choose a format: |
Due to the changes in his personal situation, Michael recently started investigating ECUs again after many years. He is unable to lock and unlock his apartment door and chooses to keep it open at all times when he’s at home. Michael has a rope hooked to the door and says that should the door close, he would be able to “manipulate the rope to get the door open. But I prefer it to be open … in case of a problem, I can get out quickly.”
Michael would prefer to be able to independently lock and unlock his apartment door, turn his lights on and off, control the thermostat, and eventually, operate his shades and blinds electronically. With these needs in mind, he recently purchased a voice-activated ECU. He says the system worked really well for two months, but it suddenly stopped working so he returned it. He is continuing his search for an effective ECU.
Michael recalls that when he was injured in 1971, he had few options and little input into the type of chairs he used. Initially he had a manual chair, but soon after he went home from rehab, he got a power chair that was prescribed by a physical therapist at the rehab centre and funded by his insurance company.
Since then, Michael has had six power chairs. His current chair is several years old and has required several repairs over the last year. As well, parts for this chair are getting “scarce.” He has a new wheelchair and is in the process of adding a tilt mechanism and urine collection system, which he is designing himself. Since Michael had decided to begin driving again and was also getting a new van with a new tie-down system, he was careful to incorporate his new chair and seating system into his decision-making.
Michael plans to begin using his new chair once his new van has been modified. When buying his new chair, he opted to include several features to address his changing needs. Over the last two years, he has lost weight and as a result, he has “less natural padding and some pressure sore issues.” In order to relieve pressure and maintain the condition of his skin, his new chair is equipped with a tilt feature, which will allow him to change his body position from time to time. Michael believes that he “probably could have pushed” for both tilt and recline, as well as an elevating feature, but he ultimately decided to keep it simple. He says, “I’ve seen through the years where the more junk you put on chairs and even cars, the more things go wrong…. Every time there is a problem that goes wrong, you know, it’s just such a hassle to fix it…. I don’t need things going wrong.”
For seating, Michael has been using a high-density foam cushion on a sling seat for many years. His new chair has a solid base and because of his recent skin problems, Michael will now be using an air cushion. His new chair will also feature a headrest for driving and a lumbar support to help him maintain his posture and improve his breathing.
Mechanically, Michael’s new chair handles quite differently. He has always used a belt-driven system that sometimes causes the chair to “veer off” in one direction. When he would try to compensate for this, the drive belt sometimes slipped, sending him in the exact direction he was trying to steer away from. The direct drive on his new chair fixes this problem.
Michael consciously co-ordinated the acquisition of his new chair and seating system with the purchase of his new van and its modifications.
Michael drove for one and a half years prior to his accident, but has not driven since, mainly at the request of his ex-wife. Over the years, he has owned three vans but others have always driven them for him. Michael first got a van in 1972, and clear about his need for a lift to get in and out of his van, he approached the state vocational rehab program for funding. Michael believes he was the first person in his state to receive funding for a lift through the program. Initially, this program allowed for one-time funding for modifications, but he says he later took “the state to court … for subsequent van modifications.” He was successful in his lawsuit.
Following his divorce, Michael decided to start driving again. He applied to the same state vocational rehab program and was placed on a waiting list for two years. He recently had his driving evaluation, which confirmed that he was able to drive. Michael’s evaluation also included recommendations for adaptations specific to his needs.
Michael bought his new van fully aware of his needs and options with respect to both his van and his wheelchair and seating. He also had a preference in his choice of hand controls and was aware that these controls would only work with a specific model of van. In addition to hand controls, Michael’s modifications will include: a lowered floor, power ramp, automatic lock-down system for his chair, magnetic-keyless entry, remote control door opener, and automatic starter. As an added feature, his van has steering wheel access to the radio and he says, “I’m hoping that I’m going to be able to access that radio. It’s very important to me. I didn’t get ten speakers for nothing.”
Michael explains that because the state vocational program is funding the modifications, a bid goes out to different vendors. He is currently waiting for the selection process and modifications to be completed. Meanwhile, he has taken the written test and is getting his learner’s permit. Because he is able to use his driving instructor’s modified vehicle, Michael is able to proceed with the recommended 16 to 20 hours of road test driving.
For the last 29 years, Michael has used a paratransit system to get to work. For other activities such as shopping and running errands, he has had someone else drive his van for him. His current vehicle has a lowered floor and he sits in the passenger seat. He is looking forward to the increased independence and says, “I can’t tell you how many days I’ve spent at home, you know, not being able to go anywhere because the weather hasn’t been good enough for me to go out…. [Now] I’ll be able to get rid of the cabin fever by just going somewhere in the van. Just anywhere even if it’s nowhere.”
For Michael, being able to drive is even more significant because he doesn’t travel much. While he enjoys using the train because he is able to stay in his chair, he is very uncomfortable in planes and avoids flying. He has also used buses but he says, “There’s nothing like having your own vehicle to go where you want, when you want.”
Michael’s job involves detailed review of technical specifications for software development and this requires a lot of telephone work, meetings, presentations and paper handling. Michael manages his day-to-day work tasks at the office using only minimal low-tech devices. He is able to write with a writing splint and a felt-tip pen, which he says, “doubles as a keyboard poker. I put this eraser at the end of it in order to make it so it doesn’t slip. It also helps me dial the telephone more efficiently.” Michael also has a home office, which he uses for his volunteer work.
Audio:
Hear Michael access his computer via voice recognition. Choose a format: |
For Michael, “The computer is a tool.” He uses it for writing, presentations, email, Internet access, creating brochures and keeping track of addresses and appointments. Although he prefers to write or type, he uses speech input to prepare long documents. Over the years, he has used both discrete and continuous speech products. Michael finds it cumbersome and inefficient to have to put on and take off the headset whenever the phone rings or there is some other interruption. He dislikes being tethered as he “paces a little” while at the computer and this has sometimes caused the cord to get caught in the wheels of his chair and break. Michael has also found that sitting still to dictate for long periods of time increases his spasticity, while typing keeps his muscles active.
In order to deal with the headset issue at work when using the discrete software, Michael “jimmied a boom. And that worked okay.” But for the newer, continuous speech software, he says, “There’s no microphone that I can just roll up to and make it work … and if you don’t have the orientation of the microphone in the proper position, it’s not going to work as efficiently.”
The other limitation with the continuous speech product for Michael is that, unlike the discrete software, it works only within its own dictation window. Since 1995, Michael has depended greatly on an electronic address book as well as a scheduling program and refers to them as his “brain.” The address book includes information such as contact names and phone numbers, and the scheduling system allows him to set an agenda and update his daily schedule, which he prints out and keeps with him at all times. Michael would like to be able to easily control the operating system and multiple applications. While the older, discrete speech recognition system allows him to navigate through these programs using various commands, his continuous speech product cannot.
Michael’s home office is strategically organized to maximize his independence and self-sufficiency. In order to access paper files independently, Michael has placed two wooden file sorters on their sides and filled them with slash folders. He can pull out a file by slipping his finger in the file and dragging it out. Next to these file sorters, Michael has a printer and printer stand. The printer stand has several built-in compartments for various types of paper and other supplies,
including business card paper, labels, stationery, recycled paper, letters, envelopes and cards. The printer loads paper from the front and also deposits printed pages at the front. This front-loading/front-retrieving feature is very important for accessibility. ”When it’s printing, it comes out the top and in the front so I’m able to get at the good copy.” Finally, Michael stores his CDs and data disks in an index card holder. He is able to get at the disks by leaving the first two slots unused so that he can fit his hand in and pull out the selection of his choice. Michael chose all of these home office features to give himself the best possible use of his space.
Michael’s home office is equipped with a multi-purpose stereo including a cassette player, tuner and CD player. He has colour-coded the buttons on his stereo system with stick-on labels so he can direct his PCAs more efficiently. He doesn’t use most of the buttons very often, but the system is positioned in such a way that he has independent access to as many buttons as possible. The most frequent function is changing the station, but Michael has difficulty doing this because of the location of the specific button and the limited use of his left hand. Although difficult, he is able to get at it by reaching.
Because he currently rents his apartment, Michael cannot make the structural changes that would make his bathroom accessible. Therefore, all of his personal care routines are carried out in his bedroom with the assistance of his PCAs.
Michael has a cart containing all the supplies he requires for his personal care. It is brought over to his bed as necessary. The cart is on wheels and each compartment is clearly labelled in order to assist him and his PCAs.
These items are brought into Michael’s bedroom and with proper set-up assistance, he is able to use them independently.
Michael uses a lift to transfer in and out of bed. The transfer requires the use of two slings—one under his arms, the other under his thighs. The bed is raised so that the base of the lift fits underneath, and then Michael is lowered onto his bed.
With function and efficiency as his priorities, Michael has a number of low-tech solutions that help to promote his independence and make his life easier.
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When Michael was first injured, he thought the only way he could write was by using his writing splint and a pen. During a visit to his doctor two years later, the doctor “pulled out this little whiffle golf ball from his desk and put a flare pen in there and said, ‘Try this.’” This round, lightweight whiffle ball allowed for better grip, but Michael didn’t like it. Then, while he was writing his master’s thesis in 1978, he tried it again, liked it, and has never stopped using it. Because the pen would sometimes fall on the floor, Michael’s primary PCA started tying the pen to his chair with a string so that he would be able to retrieve it on his own should it fall. He describes it as his “primary device” and it’s “portable and cheap.”
At the side of his wheelchair, Michael has a pouch with several compartments, which give him easy access to frequently used items such as his pen on a string, keys, notebook and business cards.
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Michael’s father, who was a tailor, used his sewing skills to make all of Michael’s pants, modify his jackets, adapt his eating cuff, and make many other devices. The traditional cuff was made of plastic and had a sleeve that opened on one side with Velcro. In rehab, Michael noted that his hand would sometimes swell over the course of the day, which made the “unyeilding” plastic uncomfortable. He also wanted to be able to put on the cuff and take it off without assistance.
Michael and his dad replaced the Velcro with a more giving elastic strap and added tabs on both sides, allowing him access from either side of the cuff. With his mouth, Michael is able to put it on by pulling on the tabs, slipping the cuff down his hand to a comfortable position, and closing the tab. Once on, he picks up the utensil, puts it in his mouth, and inserts it into the sleeve.
Similar to the “keyboard poker” which he uses at work, Michael has a pen with a non-slip pen grip that extends over the length of the pen. This allows him to access his keyboard, push the buttons on the phone, “or anything for that matter.”
One of Michael’s goals is to be able to lock and unlock his doors easily. His key holder is made of rigid material in the shape of a “U” with a “bolt going through it and some washers, which separate the keys from one another.” It is inexpensive and commercially available in medical supply catalogs. It holds the keys to Michael’s apartment, garage, elevator and office. Eventually, he will add the key to his van.
Michael keeps a pill bottle in his side pouch to collect and access change while shopping. He pays with bills and asks the vendors to place the change in the pill bottle.
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Michael uses a laptray at all times. On it, he keeps his cell phone, door opener for the front door of his building, and cup holder. These items are either clipped to the laptray or attached with Velcro.
Michael can operate some of his lights by touching the switch or tapping it with an object he can handle.
Video:
See Michael use his mobile telephone for both outgoing and incoming calls.
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Michael has several speakerphones throughout his apartment. These are commercially available phones with large buttons for easier access. For more private conversations, he is able to dial and then pick up the receiver. On two of his phones, there is “a clip that’s Velcroed and allows [him] to pick it up even easier.” He also keeps a cell phone on his laptray.
For telephone access from bed, Michael has a speakerphone on a bedside roll-in table. The phone has a very large answer button that he can press with a pen. Michael also subscribes to an emergency alert service. The button to signal an emergency is Velcroed to Michael’s blanket while he’s in bed. He has never had to use this system, but he feels more secure knowing it is there if he needs it.
Michael has been undergoing significant life transitions over the last two years and, while he is excited about living on his own again, he has found it difficult to manage without the supports he once had. In addressing his personal care needs, Michael has methodically analyzed all of the tasks required and identified ways of meeting his needs using a combination of high-tech and low-tech solutions. Michael explains that there are “so many restrictions and work that just goes into my existence, whether it’s work done by my primary PCA or myself … writing letters, keeping track of medications, doing payroll, setting up appointments, keeping a calendar…”
Because of these demands and his need for change at work, Michael has decided to leave his engineering job and start his own non-profit consulting business. Michael says, “That’s the irony of the whole thing. What it boils down to is … I’m going to be leaving work after 29 years because the systems that were designed to make me a taxpayer … they’re causing me to be a tax burden.”
Michael’s advice to those who are newly injured or going through the process of acquiring assistive technology is to try to take advantage of all of the different sources of information about assistive devices. “I would say, go to the Abilities Expo fairs they have around the country if you can. Attend any assistive technology fair that you can. There was one here about a month ago that I attended which was very, very good…. Try to read as much as you can from the journals, New Mobility, Paraplegia News as to what people are using and how they’re reacting to it. Accent on Living Magazine is a good source also, of product recommendations. Do your homework before you go to invest a lot of money in some of these devices. Because they can be really expensive. So I guess that would be my advice, do your homework.”
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