Joan has focused a great deal of effort on designing an effective living space. Individual assistive devices are not as important to her as the way they are integrated into her overall living environment. In her words, “The most important assistive thing is this entire [physical] space.”
Getting to this point has not been easy. During her rehab 13 years ago, Joan remembers being presented with an assortment of “useless” complicated assistive devices. After being home for several months and still relying heavily on Personal Care Assistants (PCAs), she made the difficult decision to go back into rehab with the goal of increasing her independence and self-reliance.
Although the professionals were unable to address her primary needs directly, Joan’s year-long stay in rehab gave her time to understand her needs better. Joan typically puts a lot of time and thought into major changes. In her words, “I’m a very ‘back burner’ kind of person. Things take a long time to ferment … to finally come to a vision out of all that confusion.” Joan recalls that while in rehab, “The simple things that were available meant so much. To be able to reach over with my elbow and use a rocker switch … to be able to hit a door opener … to have bumper guards so I wasn’t always taking the paint off the wall.”
With the help of a highly supportive network of friends, Joan eventually realized that she knew enough to accomplish one of her main objectives: to return to her family home and design an accessible living environment. Using a combination of carefully considered strategies and a range of high and low-tech assistive devices, Joan and her friends set about redesigning her home. For the most part, that work is complete. Although Joan still has some unmet technological needs, her living space is well planned for both function and independence.
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Throughout her rehab, professionals repeatedly told Joan that she could not manage a house and would need to live in an apartment. She says, “It took me a long time to sort through the emotion of hearing that and realizing that it wasn’t true, that I was going to have to find a way.” Her home was inaccessible and, in order for her to live in it, extensive and costly renovations were required. Joan had limited financial means and was unwilling to access public resources for these modifications. After a lot of thought, she concluded that she could renovate part of her home using private funds and the support of her friends.
Drawing on her rehab experience, Joan gradually developed some ideas about the home modifications she required in order to live independently. After sorting out some personal matters regarding the ownership of the house, she was able to move ahead with her plans to convert the double garage into a living area she now refers to as her studio. The garage is attached to the house but has a separate entrance with its own plumbing and gas inlet. Keeping in mind the home’s resale value, Joan purposely designed the space to suit her needs, but in a way that it could be used by someone else as a separate apartment.
Joan decided not to hire an architect to design her space. In addition to the expense, she believed that she and her friends had a better understanding of her needs and would be more flexible and open-minded. One of Joan’s friends is a contractor who worked with her to translate her ideas into a design. Once the drawings were complete, the contractor ensured that the proposed work met local building codes and the renovations got underway. Even though she trusted the contractor, Joan supervised the construction by visiting periodically while she was still living at the rehab centre. She is glad she did this because part way through the renovations, she realized that the space was too dark. She was able to add skylights before it was too late.
There is a two-foot drop between the house and the garage—now Joan’s studio. Joan didn’t want to be confined to the studio and so the contractor set about finding a way to incorporate a lift into Joan’s plans. He determined that by drilling through the concrete floor of the garage, the crawl space beneath could be used to house the motor of a lift. With all of this in mind, the contractor built the lift and wired it so that Joan could operate it independently, controlling the buttons with her elbow.
Because of the two-foot drop, Joan often leaves the lift mid-way up so that the platform can be used as a step by her PCAs and visitors. In addition to being reliable, it was important to Joan that the lift was “at least a little attractive.” She had the platform carpeted so that when the lift is down (and flush with the floor), the two floors match.
The rest of Joan’s house is not fully accessible. It’s occupied by three live-in PCAs who assist her with activities of daily living on a rotating basis. The lift gives Joan access to the main floor of her house, including the dining room. Joan loves to cook and the lift enables her to “supervise [her] helpers’ cooking” and have her meals there.
Joan knew from her rehab experience that she needed to have a sink and bathroom close to her bed. In order to ensure her privacy, there is a partition, which blocks the view into her bedroom from the back door. She has a cupboard conveniently located just steps away from her bed in which she stores blankets and other supplies.
Joan’s bathroom is equipped with rocker switches. These switches enable her to independently operate the lights and the fan, and to control the temperature of the room by adjusting the ceiling heat lamp and radiant floor heating system. Being able to control the temperature of her environment is important to Joan. When she gets cold, she sometimes goes into the bathroom to warm up. Joan has a wheel-in shower, which she uses with the help of a PCA, and a shower chair.
Joan’s only way of communicating with her PCAs is by phone or through a baby monitor she keeps by her bed. She doesn’t like the baby monitor because she has sometimes had difficulty getting her PCAs’ attention; either they have fallen asleep or can’t hear her calling. Because she is unable to get to the upper levels of the house to call for them, she has sometimes waited a long time for assistance. For Joan, being able to get her PCAs’ attention is not only a matter of convenience, but a safety issue. Unsatisfied with her current system, she plans to investigate and pursue public funding so she can install an intercom system throughout the house.
Joan says she “couldn’t do without” her see-through laptray. She is alone for several hours each day and so, before her PCA leaves in the morning, Joan makes sure that her laptray is set up. Joan keeps her mouthstick on the tray along with her morning coffee and a stack of newspaper articles, which the PCA cuts out for her each morning. Once she has finished her coffee and read the articles, Joan slides them onto another surface to clear her tray.
Along the walls of her office is a countertop, which Joan has strategically designed to meet her needs. Her computer, telephone, rolodex, book stands, signing block, and two mouthstick holders are arranged along it.
Being able to access the telephone is important to Joan not only for personal and safety reasons, but also because she does a lot of volunteer and committee work that requires a great deal of telephone communication.
Joan’s telephone sits on a separate surface at a different height than the rest of her countertop; it is located next to the computer, which makes it convenient for her to type information she receives by phone. Joan uses a mouthstick to access her phone and answering machine. She has found it less fatiguing and easier on her neck when the phone is in an upright position on top of the answering machine. Although she has a computer with an address book, Joan sometimes prefers to use her rolodex, which she keeps next to the phone.
Joan loves to read and always has reading materials available. She has always had a separate stand for books and magazines. The book stand is spring-loaded to help her turn pages and the magazine stand, which is wider than the book stand, accommodates larger items. She says she hasn’t seen a book stand exactly like hers since rehab and if she did, she would likely purchase it as a backup.
In order to sign her name on a letter or other document, Joan requires a slightly raised surface. One of her books was just the right height. She approached a woodworker friend and asked him to cut a piece of wood the same thickness to use for travelling. Her friend went one step farther, making the signing block from finished cherry wood.
While in rehab, Joan designed a mouthstick holder and had it made. She uses it to hold a backup mouthstick in case the one on her tray falls and she is unable to retrieve it.
For Joan the physical task of writing can be “laborious.” Over the years, she has tried various cuffs and other means of holding a pen and says, “I would love to write for myself. If I’m at a meeting, I could take notes and not have to try to remember everything.” Currently, Joan does all of her writing on her computer.
With the assistance and advice of a friend, Joan got a computer about seven years ago. She says, “I’m not a shopper. I didn’t even know how to go about it…. Again, it’s a friend helping me to translate a need or a wish into reality.” Prior to owning a computer, she dictated her correspondence to a secretary who would then type the documents for her. Although she still uses her secretary’s assistance with mail, paying bills and other personal administrative tasks, Joan is now able to write her own letters and keep minutes for her volunteer work.
Two years ago, Joan replaced her first computer with a more powerful machine but is finding it frustrating to “relearn everything.” She says that her first computer was simple to use and, as a writer and editor, she found it easy to move sentences around and edit her work. Joan heard about speech recognition through a friend and decided to try it. She found it frustrating and inefficient and decided to wait for improvements in the technology. Microphone placement was part of the problem. Not wanting to be “wired” to her computer with a headset, Joan opted for a desktop microphone. She believes that the poor recognition she encountered was related to changes in the placement of the microphone, or her position relative to the microphone. Joan was frustrated with having to correct mistakes frequently and says that she can type much more quickly.
Joan accesses her keyboard with her mouthstick and using a “sticky keys” program. This software utility enables her to hit key combinations that would normally be held down simultaneously. Similar to the set-up of her telephone, Joan has opted to mount her keyboard in an upright position at eye level with the monitor. This reduces the strain on her neck and enables her to see what she’s typing more easily. She does not use a mouse.
Joan’s friends have been after her for years to get an Internet connection. She is not very interested, but she recently decided to get it—mainly for her PCAs who are university students. She also had a separate line installed so she could phone them even when they are online.
While in rehab, Joan initially insisted on using a manual chair but she eventually realized she couldn’t manage it. The rehab professionals contacted the vendor they normally dealt with, who brought in a power chair, and Joan drove off in it. This chair lasted 11 years, but because Joan’s supplier recently told her that parts for her chair were becoming more and more difficult to get, she had no choice but to replace it.
Joan says she was very involved in the selection process of her new chair and worked closely with the rehab professionals and vendor around choosing features. In addition to a good turning radius, it was important to Joan that the chair fit under the countertop in her office. Also, she still wanted to be able to use her laptray, and she needed the control box angled to accommodate her hand.
Joan has been trying to get used to her new chair for about two months. It has caused some significant problems in her carefully designed living space. Because of differences in dimensions and the overall feel of the chair, she says, “I’m constantly smashing into things. And I run over my helpers’ feet because I’m not used to these wheels and how wide they are.” Its longer length makes it difficult for her to back out of the space where she is transferred from her bed to her chair, and to get close enough to the countertop in her office. For all of these reasons, Joan “doesn’t care” for her new chair. Her old chair felt like an extension of herself, but this one doesn’t. In retrospect, Joan thinks that it might have been helpful to try other chairs before making her final decision.
Along with the new chair, Joan also got a new cushion that she finds too hard. She says that since getting her new chair, she has had difficulty with pressure sores and might go back to using her old chair and seating system temporarily. Because Joan believes she already spends enough time in bed, she has chosen to deal with the pressure sores by monitoring her skin closely and treating the sores diligently.
During her second rehab experience, Joan participated in a driving assessment and was told that she couldn’t drive. At the time, she believed that had she been assessed when she was stronger and with a smaller steering system, she would have been able to drive. Because mobility and independence are so important to Joan, it was upsetting to be unable to go out on her own to visit a friend or do her own shopping.
Two years ago, she took part in another driving assessment and realized that she really wasn’t able to drive. She says, “I’ve given that up, gracefully.”
When Joan was first injured, her friends got together and bought her a full-size van. Through her volunteer work, Joan knew a car dealer who was also in the business of modifying vehicles for persons with a physical disability. Joan went directly to him. With his help she was able to determine her modification needs. She used that van for 11 years.
Last year, Joan’s friends decided that her van was becoming dangerous and needed to be replaced. They knew she couldn’t afford a new vehicle and once again, they bought her a new van with the necessary adaptations. Because driving a full-size van is difficult for Joan’s friends and PCAs, they bought a minivan.
To her disappointment, Joan found the minivan too small, particularly for long distances. After six months, she arranged for personal financing and traded in her minivan for a full-size van. Joan normally rides up front in the passenger spot. In addition to a lowered floor, a power lift and power doors, her new van features a removable captain’s chair with a power lock down system. This gives her the flexibility of placing that seat either behind the driver’s seat or at the back of the van.
In addition to her own vehicle, Joan sometimes uses the local paratransit system. Like others in her situation, she finds it inflexible and unreliable, and says, “It’s a blessing to be able to go where I want when I want.”
Adjacent to her studio is a carport for the van. Joan deliberately designed her space in a way that would enable her to go out and get into the van without being exposed to the weather. The carport is equipped with a light that is triggered by a motion detector. It comes on automatically when the van is being parked.
Like many others, Joan feels that her initial rehab was not as successful as she had hoped it would be. Rather than concentrating on her stated needs—computer technology and making her house accessible—the rehab professionals seemed more interested in teaching her homemaking activities, which she knew she couldn’t perform. With the help of her friends, Joan realized she knew enough about herself to take matters into her own hands and make her own decisions. Eventually, she insisted on using a mouthstick and believes that this “seemed to help everybody understand my degree of inability. So then they [professionals] started me with courses on how to manage PCAs.”
Joan is cautious when making changes and takes her time considering options. With function and independence in mind, she puts a great deal of thought into the assistive technology she chooses. Because of her earlier experiences in rehab and the years since, Joan has learned that to maximize her function and efficiency, individual assistive devices cannot be used in isolation but instead, need to be integrated into her broader environment. “It is very important that things work according to the way I need them to work.”
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