1998 Conference Proceedings

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SPECIAL ADAPTATIONS AND DEVELOPMENTS OF COMPUTER SOFT & HARDWARE FOR CHILDREN AND YOUNG ADULTS WITH SEVERE PHYSICAL HANDICAPS AS PART OF THE REHABILITATION PROCESS

Fabia Preminger
Rehabilitative Computer and Technology Center
Alyn Children Rehabilitation Center
P.o.b.: 9117, Zip code: 91090
Jerusalem, Israel
Voice/Message: (972-2) 6494344
Fax: (972-2)6437338
Internet: recomp@netmedia.net.il 

The Rehabilitative Technology Unit at Alyn Hospital has been functioning for the past five years, as a satellite of the Occupational Therapy Department. It, together with other members of the multidisciplinary team, provides assessment and treatment for, both in and out, patients suffering from all kinds of physical and/or cognitive disturbances.

The aim of the rehabilitation process in our Unit is to provide compensations for the patients deficits, using the media of computer technology. The professional staff attempts to use equipment already available on the market, but frequently make or adapt their own hard and/or software for each person, according to his or her specific controlled movements and cognitive understanding. All creations of, or adaptations to, hardware equipment are made by the Unit's staff in cooperation with the Center's Bio-Mechanical Laboratory. Software developments are made by computer specialists under the guidance and supervision of our professional staff. Treatment needs are ever-changing, requiring constant reevaluation and readjustment of treatment methods, equipment and goals.

For the first four years (from 1992-1996), 432 children and/or young adults were assessed and/or treated in our Unit: 114 as inpatients and 318 as outpatients, In all 2975 treatment sessions were given.

This number indicates one to four treatment sessions per child per week. According to the needs assessed:

A satisfactory solution is usually found. But, for persons with difficulties with eye contact or focusing on the screen; or with very short attention span(for less than five minutes)-solutions are very difficult, if not impossible, to find.

The continuing extensive progress in computer technology offers tremendous implications for enhancing the quality of life of the physically and/or cognitively disabled persons. The process is dynamic, demanding constant adaptations, ranging from the most simple mechanical adjustment of basic computer hardware to the most complex adaptation which enables the activation of one isolated muscle.

There are no written rules or bases to follow. Tools have to be developed according to the patients ever changing symptoms and needs at any specific time.

Intervention of Occupational Therapy should start very early, following injury or illness, including: maintaining Range Of Motion(ROM) of upper extremities, adapting switches for calling for help, followed by seating and sitting, Activity of Daily Living(ADL), mobility, returning to the community and finally occupation/hobbies, etc.

Technological intervention starts at the patients bed side after the acute stage and continuous into his return to the community.

Children and young adults with Spinal Cord Injuries (SCI) and Neuromuscular Dystrophy (NMD) are amongst the severely physically handicapped persons we treat.

Our aim for these patients is to enable them to fulfill their personal and social needs and wishes, such as: written communication, leisure time activities, educational studies, vocational training and in the working field.

Case study 1:

N., a 15 year old female teenager, suffered from Tranverse Myelitis- a viral disease attacking the spinal cord and causing sudden paralysis. Unfortunately, the illness left N. paralyzed from an unusually high level - C4-C5.

N. is intelligent, sociable and before her illness was an active sportswoman. Immediately after medical stabilization, but while still confined to bed, N. was first introduced to the computer. She was provided with a special Track Ball (TB), adapted in our laboratory. This enabled her to move the ball with her chin and control the side button by pressing the switch with her cheek. In this way, N. while spending many hours in bed, was able to play and draw (her favorite hobby).

Once in her wheelchair, N. experienced different kinds of soft and hardware, including: a miniature track ball controlled by chin movements, a miniature keyboard controlled with a mouth stick, switches and mouse pressed by minimal hand(requiring a customized hand splint) and shoulders movements, etc.

At this stage, now breathing independently, she was encouraged to return to her school work with the help of suitable software. For graphics, games and multimedia, N. is still using a miniature mouse(available on the regular market).

Today, in her own home, N. continues to enjoy using the laptop for writing, games, graphics, connecting to the Internet and helping her to realize her artistic talent.

Case study 2:

A. is a bright 24 year old male suffering from Duchenne type Progressive Muscular Dystrophy, a genetic disorder, and has been resident in Alyn for the past 10 years. He stopped walking at 10 years of age, and since he was 15 has been "driving" a powered wheelchair. Two years ago, he had a tracheostomy performed, and since then is entirely dependent on mechanical ventilation. At the end of 1991, A. purchased his own computer which he activated with the very slight movements he still possessed in some of his fingers. At this time, a special TB was located between his knees, enabling him to move it with his thumb and the buttons were pressed by two fingers of the other hand.

His finger control deteriorated, and he attempted using head and mouth control for the input devices, including: an uncomfortable head stick, a lip controlled mouse with sipping and puffing button control, an infra-red pointer located on his forehead, etc. All of these proved to be unsuccessful for various reasons.

Today, A. successfully uses a specially adapted apparatus which holds a regular keyboard and is activated by either: a mouth stick or a TB, controlled with his lower lip (providing it is in the optimal position).

The hardware also required special changes, for example: reprogramming the functional direction of the mouse and finding a substitute for the 3 buttons on the TB (which A. was unable to reach). Three buttons, on a special mounting, were made for use of the left hand, as A's right hand, his "good" hand, is permanently (at his request) on the joystick of his wheelchair. The computer is permanently situated on the balcony of his bedroom.

He is able to turn it on and off independently with the mouth stick, by using a special switch (his own idea) situated on the right side of the keyboard. A mounting device was adapted for A's mouth stick when not in use.

A. is in no way physically "attached" to any part of the equipment and is able to approach or leave the computer at will.

We customized an "on screen keyboard" for Windows '95 in English and Hebrew containing special functions enhancing A's productive work. He also writes, programs, uses the Internet and phones via the computer.

Most of his contacts are unaware of his severe disability.

With the rapid pace of progress and research, future technology should be less cumbersome, implemented more widely and, hopefully, be available at lower costs. As occupational Therapists, with the ever renewing technology, our aim is to give the patients more independence and competence, improving their motivation, initiative and self- esteem in a very positive way. We must always remember that in the outside world factors like: family, environment, socio- economic situation and culture should always be taken into consideration before recommending any specific tool. We must never forget that a person with disabilities is a person with abilities too! The aim of all rehabilitation processes is to prevent disability from becoming handicap.

References:

"Computer resources for people with disabilities"(2nded.).(1996).Alameda, CA: Hunter House Publishers.

Batshaw, M. L., & Perret, Y. M.(1995). "Children with disabilities". Baltimore, Maryland: Paul H. Brookes Publishing Co.

Glennen, S. L., & De Coste, D. C.(1997). "Handbook of augmentative and alternative communication". San Diego, CA: Singular Publishing Group.

Hammell, K. W.(1995). "Spinal cord injury rehabilitation"(Vol.45). London, England: Chapman & Hall.

Kerrigan, A. J.(1997). The psychosocial impact of rehabilitation technology. "Phys. Med.& Rehab." 11(1), 239-252.

Ozer, M. N.(1988). "The management of persons with spinal cord injury". New York, NY: Demos Publications.

Vanderheiden G., & Smith, R.(1989). Application of communication technologies to an adult with a high spinal cord injury. "Augmentative and Alternative Communication", 5(1), 62-66.


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