Assistive Technology: Spinal Cord Injury: Opportunity Awaits Through Assistive Technology
Kimberly Walters
Spinal cord injury (SCI) is easily one of the most expensive injuries for an individual to sustain. It is also one of the most shocking and devastating. Like most accidents, SCI occurs within a matter of seconds; with an individual’s independence suddenly at the threshold of the injury. All too often, in every population of the world, people associate paralysis only with the inability to walk again. If this were only true, there would be fewer challenges for the individual with SCI to repeatedly encounter. Novices are left with the overwhelming and defeating feeling that life, as they knew it, is over and can never be reclaimed––that living independently with a high quality of life is forever gone.
Besides the inability to walk again, SCI affects bladder and bowel function, how an individual gets dressed, gets in and out of bed, in and out of the shower, on and off the toilet seat and on and off the couch and chair. Other skills the person must learn include performing range of motion on paralyzed limbs to help prevent blood clots and keep blood circulating, performing periodic pressure releases to help prevent pressure sores, checking skin daily for any signs of developing skin ulcerations, and learning the signs and symptoms of autonomic dysreflexia which can be life threatening for those with a T-6 or higher complete break. In addition, those with SCI must be evaluated for home modifications that will best accommodate their needs so that they can return home to live independently. Also, a case management medical team needs to address the possibility of employment retraining, returning to school or college, possible retraining to drive a modified vehicle equipped with hand controls and a lift, and learning to perform recreational activities. Clearly, people with SCI have lost much more than the ability to walk. They have also gained a new job––learning to use one’s body again to the best of its ability.
Every SCI carries with it a level of financial hardship due to hospitalization costs, loss of employment in most circumstances, and the inability to maintain monthly living expenses. Unfortunately, most individuals with SCI do not have the financial means to meet the demands of daily living and are introduced to social services programs that most people associate only with the poor and the elderly. In the United States, these programs are Social Security Disability, Social Security Supplemental Insurance, food stamps, Medicaid, and working with a social worker to seek out agencies that can assist with home modifications, transportation to and from doctor visits, applying for personal assistance upon returning home, and overcoming fears of adjusting to life as a paraplegic or quadriplegic. All of these issues can be overwhelming to deal with and it often creates a relentless drain on one’s mental state and level of overall endurance. SCI propels one into a new world––a world fraught with daily considerations of how to live as well as before and fears that the goal might never be reached.
Given the mega-adjustments that are thrust upon the newly spinal cord injured, processes that exist to help with re-entry become critically important and, in fact, present an opportunity to create a better quality of life. For many people with disabilities, without assistive technology devices they would be institutionalized. For most, assistive technology devices allow the individual to have self-directing choices that re-establish a means to gain the independence that existed prior to disability. In fact, given the sophistication of today’s assistive technology world, those with disabilities are helped to grow, prosper, achieve goals, attain dreams, and be productive members of society.
As the cliché goes, “timing is everything.” These words couldn’t be truer than for the individual with SCI. Introduction to the assistive technology world should be introduced by the case management medical team within the first week of rehabilitation. Frequently, this evaluation is not conducted until the latter part of rehabilitation for reasons that only the case management medical team can answer. Early introduction to assistive technology devices allows the person to gradually become familiar with the devices without the pressure of learning how to utilize them in a few short weeks prior to discharge. This serves several ends. It protects the person physically since the medical team can ensure that the device is being used correctly. It also builds self-confidence at a time in life when confidence building is truly needed. The case management medical team is there to assist with any problems that arise and gives them time to help resolve the issues during the rehabilitation stay. Finally, it gives the case management team time to evaluate the environment to which the individual with SCI will be discharged, permitting a full and accurate measure of what assistive technology devices to provide and to train with for a successful discharge.
A partial list of assistive technology devices that are available today includes building modifications, communication aids, computer access, education, electric scooters, environmental controls, ergonomic equipment, fitness aids, low vision aids, mobility and transportation, prosthetics and orthotics, recreation, seating and positioning, and daily living devices: tools that are used frequently in the home to sustain independence, like reachers, shower benches, and cooking and eating utensils. There are many factors that determine what assistive technology devices someone with SCI will require. These factors include their level of injury, whether the injury is complete or incomplete, an understanding of their home environment, their weight and body frame, strength, height, and their mental state. Since no two people have the same body make-up, the right application of assistive technology devices needs to fully involve the individual with SCI before all other decisions. It is the person with the injury that is most likely to know what will and will not work well, and determine what feels right and what doesn’t. Remember: the individuals with SCI will be using these devices and their feedback should be of the utmost importance to the case management medical team when conducting the assistive technology evaluation.
Since there are no two injuries exactly alike; every case must be individualized based on specific needs and individual definitions of what it takes to regain and maintain an independent lifestyle. Assistive technology devices that work well for one person may not work at all for the next SCI survivor.
Accurately determining the body habitus of an individual with SCI is the most important precursor for ordering a wheelchair. These measurements need to include the length of all limbs, width of buttocks, and the seating position that will best provide the most comfort with the least chance of developing pressure sores. Critical factors that must be remembered when performing these measurements are body frame and weight. In addition, the individual with SCI should be introduced to, and have the opportunity to explore, the various types of wheelchairs fitted with different wheelchair tires, seat and back cushions, neck cushions for those who are quadriplegic, and different types of sip and puff devices that will work safely and efficiently for those who require them. For manual wheelchair users, it is in their best interest to be provided with a lightweight wheelchair because the lighter the wheelchair, the greater ease of pushing oneself up inclines, over gravel, or through snow, grass, and mud. Over time, a lighter wheelchair will also lessen the chances that the user will develop chronic shoulder, elbow and wrist pain that often develops into chronic tendonitis.
Home modifications and daily living modifications should be evaluated in the very early stages of rehabilitation once the home setting discharge environment has been established. The case management medical team needs to consider whether doorways and hallways are wide enough for the individual to maneuver their wheelchair, whether manual or powered, without any barrier obstructions. Also, for those who use a manual wheelchair, it must be determined if the person really has the necessary strength and coordination to maneuver the chair with little risk of falling out or tipping over. The clothes closet bar needs to be lowered to wheelchair eye-level and brought forward so the person does not have to lunge for clothing. People with SCI may need to be provided with a transfer board and, if at all possible, an emergency wrist band to alert the local ambulance service if they fall out of their wheelchair. The home entry and exit may require a ramp that needs to be equipped with railings on each side with slip resistant place mats or an electrical outdoor lift. The bathroom needs to be equipped properly with grab bars, hand held shower hose, shower bench, and be large enough for the SCI individual to maneuver his or her chair in a 360-degree circle without any barriers; the individual also needs to be able to maneuver on and off the toilet seat. Quadriplegics are best served with a roll-in-shower to accommodate their personal hygiene issues.
Daily living assistive technology cooking devices the SCI individual may need include a hot/cold place mat, insulated pot holders, specialized cooking utensil pieces, personal hygiene devices to assist with dressing and showering, and other devices to help in doing laundry, cleaning the home, performing bladder and bowel care, and aids for communication. It must also be determined if the SCI individual will need assistance with mobility and transportation issues. Another important daily living assistive technology device the person may need is a hand held reacher.
For those who choose to drive again, they will need a driver evaluation assessment on what types of modifications they will need. Examples of vehicle modifications are what type of lift should be installed in their vehicle if they choose to drive a van, what type of hand control devices they will need based on their arm and hand dexterity, what type of tie-downs need to be positioned into the floor of the vehicle to keep the wheelchair stationary when driving if they choose to drive from the vehicle’s seat and not from their wheelchair. For those who drive from the vehicle’s seat, questions include what type of power seating the individual will need, what type of emergency lever should be installed and which vehicle control buttons need to be positioned on the steering wheel for those who have limited hand and arm dexterity. A factor that need to be weighed when evaluating for driver retraining is the person’s confidence level regarding their preferred vehicle type––full-size van, mini-van, or car. Also, the strength, skill level, and injury level of the person when doing transfers needs to be considered as well.
With two-thirds of people with disabilities overweight, recreational activities are extremely important to address with the novice during rehabilitation. Whether quadriplegic or paraplegic, given the assistive technology devices available today there is no excuse for an individual with SCI not engaging in recreational activities. Recreational activities can help maintain weight, enhance self-esteem, increase confidence level, build strength, provide the opportunity to have a good quality of life, help alleviate boredom and assist in the effort to maintain a healthy and independent lifestyle. It is often difficult to motivate the novice to consider the importance of recreational activities during their rehabilitation stay, but it is imperative that the case management team have an experienced individual with SCI who is active, independent, understands the world of assistive technology, and who will talk with the novice during rehabilitation. This provides encouragement and evidence for the newly injured person that life can, and does, go on with quality––if one embraces the opportunities that await post-SCI.
In summary, opportunities await all of us in life, and incurring SCI does not mean that those opportunities die. SCI survivors need to fully understand how to optimize the capacity of their bodies. The case management team needs to introduce those opportunities to the survivors through many existing venues. With both of those processes completed, a person with SCI, to whatever level of motivation their personal proclivity takes them, generally gains entrée to any world that they can imagine themselves part of, whether it be work-related, social, or recreational.
Kimberly A. Walters, a US Army veteran and a T-5 complete SCI survivor since 1993 is currently an advocate/executive assistant for AIM Independent Living Center in Corning, New York. She was awarded the 2003 New York State Senate Achievers’ Award and was a 2002 Paul G. Hearne national finalist recipient. She graduated from Corning Community College and SUNY Geneseo. She was a 1997 Paralyzed Veterans Olympic Gold Medal finalist in wheelchair racing and, in addition to working as a motivational speaker, Kimberly is pursing a professional skydiving license.