Informed Consumer's Guide to Assistive Technology for People with Spinal Cord Injuries
Technology plays an important role in every aspect of daily life. To get from one place to another, most people use automobiles or public transportation. Mothers with small children use baby carriages or strollers to assist them in carrying their children around the mall. Televisions are equipped with remote controls for ease of operation, and electric can openers and garage door openers are convenience tools that have become commonplace in our society. All of these devices have one thing in common: they are used to assist us in accomplishing everyday activities.
Technology plays an even more significant role in the life of someone with a severe disability such as a spinal cord injury (SCI). SCI can have a major effect on virtually all aspects of one's life. Products and devices designed to increase an individual's level of function and independence can be instrumental in providing a person with SCI the highest possible level of function after injury.
The physical effects of SCI are varied. Depending upon the level and severity of injury, it can affect the ability to walk or to use one's arms and hands, to drive, and to control physical functions such as bowel and bladder control or to have sexual relations. A number of excellent publications discussing the effects of SCI are available and are referenced below.
This Informed Consumer Guide is designed to provide an introduction to the many types of products and devices people with SCI can use in order to function more independently in their daily activities. People with new injuries may assume that certain activities cannot be performed any longer because of the disability. In many cases, however, devices have been developed to allow people with SCI to do the same things they did before the injury. Adaptive devices have been developed to enable people with SCI to participate in almost every type of sporting or recreational activity. Cars and vans can be modified to enable someone in a wheelchair to drive or be a passenger while remaining in a wheelchair or transferring to a standard car seat.
The first step toward getting the types of products that one needs is to know the right questions to ask, and to know that appropriate products exist. This Guide, therefore, can help people with SCI arrive at that "first step" toward greater independence and self-sufficiency after a spinal cord injury.
How To Use This Guide
This Guide describes the types of products that may be used by people with SCI to maximize their physical capabilities. Detailed information about specific products in each category discussed below can be found in ABLEDATA, a database of information about more than 20,000 products for people with disabilities. ABLEDATA also produces Fact Sheets and Informed Consumer Guides on specific categories of technology. Included are the Informed Consumer Guide to Wheelchair Selection and the Informed Consumer Guide to Accessible Housing, as well as individual Fact Sheets on Powered Wheelchairs, Manual Wheelchairs, Wheelchairs for Children, Aquatic Sports, Cycling, and Adaptive Winter Sports. Additional information also is included in this Guide about other available resources to describe individual product areas or to accomplish specific tasks.
One of the major consequences of SCI is its effect upon a person's ability to walk. Some people with SCI are able to walk with the assistance of braces and crutches. Others may need--or choose to use--a manual wheelchair. Still others may require or prefer some sort of powered mobility device, such as a scooter (a three- or four- wheeled cart) or powered wheelchair. Deciding what type of mobility device to use is based upon a number of factors: medical diagnosis; personal lifestyle; cost of the device; and personal preference.
For someone who has recently sustained a spinal cord injury, a functional evaluation by physical therapists and other rehabilitation professionals is an important part of the process for determining the individual's best options. For someone who has had a spinal cord injury for a number of years, the best sources of information on products available often are other consumers who have practical experience with the product(s) being considered.
The majority of people with spinal cord injuries use a wheelchair at some point in their lives as a mode of personal mobility. For some this may mean using a powered wheelchair, while others may find a standard manual chair or a lightweight or sport chair more suitable. Selecting the appropriate wheelchair from the many options available often is an overwhelming task to someone with a new injury. However, there are a number of excellent resources available to assist with this task, and both wheelchair prescribers and current wheelchair users can provide helpful advice on features or products to consider, as well as "problem" products to avoid.
A Guide to Wheelchair Selection: How to Use the ANSI/RESNA Wheelchair Standards to Buy a Wheelchair. Peter Axelson, Jean Minkel, Denise Chesney. Paralyzed Veterans of America. 202/872-1300. 1994.
Choosing a Wheelchair System. Department of Veterans Affairs, 1990. Department of Veterans Affairs, Veterans Health Services and Research Administration, Washington, DC 20420. Clinical Supplement #2, Journal of Rehabilitation Research and Development, March 1990. FREE.
How to Select and Use Manual Wheelchairs. A. Bennett Wilson. Accent on Living, P.O. Box 700, Bloomington, IL 61702. 1993. Tel: 800/787-8444.
Informed Consumer Guide to Wheelchair Selection. ABLEDATA, Macro International. 800/227-0216. 1994. Contact the office for pricing information.
ABLEDATA Fact Sheets on Manual Wheelchairs, Powered Wheelchairs, Wheelchairs for Children and Scooters. ABLEDATA, 8455 Colesville Road, Suite 935, Silver Spring, MD 20910. Contact the office for pricing information.
In general, wheelchair users also must use a specialized seating system to ensure adequate support and protection of soft tissues. Selection of an appropriate seating system is of utmost importance to someone with SCI in order to avoid pressure sores, a risk for those unable to change position or who have diminished sensation. The seating system must be selected along with the wheelchair to ensure that the two systems are compatible and provide the best support possible to the user. Seating systems come in many different styles and formats, depending upon the user's needs and personal preference. The simplest and least expensive systems are foam cushions, generally three- to five-inches thick and covered with fabric. These may be flat foam or contoured to more closely match the shape of the user. Cushions are also available in air, flotation, gel, and water models. The variety of cushions provide different levels of support and require varying levels of maintenance. Also available are hybrid cushions, combining the best characteristics of several types of cushions, such as foam and gel.
Depending upon the nature and extent of the disability caused by SCI, some individuals may require complete seating systems. These types of systems assist those who lack sufficient strength or balance to sit upright or have difficulty maintaining proper positioning. Components may include seats, backs, pelvic and hip supports, and or leg and foot supports.
As with other kinds of assistive technology, first-time decisions should be made in consultation with therapists and other rehabilitation professionals to be certain that the system selected best meets the needs of the user.
Some people with spinal cord injuries are able to walk with the aid of braces and crutches. Two basic styles of crutches are available, depending upon an individual's level of injury and degree of mobility. Traditional under-arm crutches are preferred by some users, while fore-arm or Canadian-style crutches provide an alternative.
Walkers are metal frames designed to provide support and stability while walking. For someone with SCI, walkers often are used in conjunction with braces or crutches to provide stability and support while ambulating. Walkers may be folding or fixed and they may be height-adjustable. They may or may not be equipped with wheels on the front or all four legs. A variety of specialty walkers are available as well, including stair walkers and walkers with seats. Accessories such as platform arm supports and carrying aids help adapt walkers to more fully provide the user with independence.
Driving and Transportation
Transportation often plays a key role in determining whether or not an individual will be able to work, go to school, or participate in recreational activities. For people who are able to drive, specialized products are available to operate an automobile or van with hand controls. Special access options, such as lifts or ramps for vans and wheelchair tie-down systems to stabilize wheelchairs inside a moving vehicle also are available. The following categories of automotive adaptive equipment and other transportation-related devices, selected from the ABLEDATA Thesaurus, are available.
People with limited or no use of their lower limbs use hand controls to accelerate, brake, and shift gears. These controls may be mounted on the steering column or they may be comprised of a ring system on the steering wheel, allowing the driver to keep both hands on the wheel. Hand controls are available from a number of different companies and meet a variety of user needs. Many hand controls are designed not to interfere with operation of the vehicle by drivers who are not disabled.
An assortment of accessory items, including wheelchair and transfer lifts, handles to assist in transfers from a wheelchair to car, car door openers, and swivel seats are available to drivers and passengers with disabilities.
In addition to the accessory items available for automobiles, specialty accessories are available. Included are such items as raised van tops, tie-down systems, and transfer bars designed specifically for vans can be purchased to make driving or riding in a van safer and more comfortable for someone with SCI.
Van Lifts and Ramps
Full-sized and mini-vans can be fitted with a variety of ramps and lifts. Lifts may be attached to the side door or to the rear door, and some newer models are designed to require less space and/or to leave part of the door free to accommodate passengers who are not in wheelchairs.
Some wheelchair users find ramps a preferred method of access. A variety of ramp systems are available including two-track and wider one-piece models. These ramps may be permanently installed, folding up or sliding under the van floor, or they may be portable, allowing use with more than one vehicle.
Raised ceilings or lowered floors often are used in conjunction with a lift or ramp to equip a van to accommodate a person in a wheelchair.
"Van Lifts: The Ups and Downs and Ins and Outs." A. Perr and K. Barnicle. TeamRehab Report (Vol. 4, No. 4, JUNE 1993), pp. 49-53.
Presents information on how to select an appropriate wheelchair lift for a van, noting that safety and function are the two top priorities when choosing the best type of lift. Other factors include cost, ability to use the lift, size of the user, wheelchair size, locations where the lift will be used, and how else the van will be used.
Wheelchair Carriers and Loaders
Specialized wheelchair carriers can be attached to the outside of a car or van to carry wheelchairs from one location to another. Some carriers are combined with loaders, lifting and storing the chair on the car's bumper. Other loaders enable wheelchair to be lifted into a car trunk or onto a roof rack.
Making Your Home Accessible
Many people discover that their homes are not fully accessible to them after they have sustained a spinal cord injury. Doorways may be too narrow to accommodate a wheelchair; hallways may not provide sufficient turning room; bedrooms may be located up a flight of stairs. It may seem that the only option is to sell the home and move to one that is wheelchair accessible, and for some this may be a preferred option. In some cases, however, it may be possible to make renovations to an existing home, enabling one to remain there indefinitely. Some homes may simply require the installation of assistive devices such as special door hinges, elevating and lowering cabinets, and electronic faucets to make the home more accessible and "user friendly" to someone in a wheelchair.
Informed Consumer Guide to Accessible Housing. ABLEDATA, 1995. Contact the office for pricing information.
Home Modification Resource Guide, NARIC, 1994. FREE.
Special Section: Home Improvements, Paraplegia News, November 1994. Vol 48, No.11, pp. 27 - 32.
Managing Your Environment
A spinal cord injury that causes quadriplegia can limit a person's ability to use arms or hands for such everyday tasks as picking up a telephone, typing, writing, or operating electrical entertainment equipment such as a television or VCR. There are a number of devices available, however, that can assist one with these tasks. Both products designed for the general public - such as speaker phones or universal remote controls--and assistive devices designed especially for people with limited hand and arm function are available. Included are specialized telephones, assistive writing and typing devices, computers, safety and security systems, and environmental controls. Many of these systems are voice-activated, eliminating the need to use one's hands. Additional alternative input modes are also available.
Staying in Shape
Sports and recreation are important both as leisure activities and as ways to stay in shape mentally and physically. Some activities can be done without any adaptations or special equipment. Others require specialized equipment or modifications to accommodate wheelchair users, and the range of options open to people with SCI is expanding almost daily. Whether you are interested in fitness, skiing, cycling, basketball, rugby, tennis, hunting, or some other activity, there are products, facilities and people able to assist you in participating in the recreational activity of your choice.
The competitive sports arena is alive and well for athletes with spinal cord injuries or other disabilities. If a sport is available to an able-bodied person, the likelihood is high that it is available also to someone with a spinal cord injury. Athletes with disabilities participate regularly in the Boston Marathon and other running events, with wheelchair division times recorded along with other divisions. Wheelchair basketball, quad rugby, archery, bowling, tennis, snow and water skiing, and just about every other sport can be played by someone who uses a wheelchair. In many cases, the key to competition is access to the appropriate equipment, whether it is a lightweight wheelchair or the newest skiing equipment. Specialized wheelchairs have been developed specifically for use in various sports, including racing, wheelchair sports, and basketball.
Before trying to locate specialized equipment, it may be helpful to contact one of the many organizations or publications that keep track of sports and recreation opportunities for people with disabilities. Two excellent resources are Disabled Sports USA, an organization for people with disabilities, and Sports 'n Spokes, a bi- monthly magazine that features sports and recreation opportunities for all people with disabilities:
Disabled Sports USA, 451 Hungerford Drive, Suite 100 Rockville, MD 20850. 301/217-0960.
Sports 'n Spokes, PVA Publications, 5201 North 19th Avenue,
Suite 111, Phoenix,
AZ 85015. 602/246-9426.
For people interested in developing an exercise program, the following three videos may be helpful:
Nancy's Special Workout features occupational therapist Nancy Sebring. This program is geared to the wheelchair user, both children and adults. The 45 minute routine starts with a warm-up, moves to a vigorous cardiovascular workout and ends with a cool-down. Avenues Unlimited, Inc., 1199 - K Avenida Acaso, Camarillo, CA 93012. 800/848-2837 or 805/484-8138.
Also available from Avenues Unlimited is Keep Fit While You Sit, for advanced workouts. It has been designed to increase circulation, respiratory capacity, flexibility, muscle tone and strength and is endorsed by the American Paralysis Association.
Anybody Can Sit and Be Fit was developed by Martha Rounds, who has had 30 years in the field of health and fitness. This 20-minute routine is for people who need to sit while exercising. The program involves the arms and upper body and some leg lifts to help burn calories, increase circulation and relieve muscle tension. Accent on Living, P.O. Box 700, Bloomington, IL 61702. 800/787-8444.
Adaptive exercise equipment is also available for people with SCI. Included are pulley weights, complete weight systems designed to be used by persons seated in a wheelchair, recumbent exercise bikes, and exercise cycles designed to be "pedaled" with the arms. Some of these products feature power systems for assisted exercise.
With any exercise program, it is advisable to consult with a physician before undertaking new activity, whether using a video or adaptive exercise equipment.
Health care professionals often recommend that people with SCI stand several times per day to improve cardiovascular fitness, prevent bone deterioration, and exercise muscles. Standing frames and stand-up wheelchairs provide the support needed to accomplish this activity.
Hobbies and Recreation
A wide range of products is available to enable people with SCI to engage in the hobby or recreational activity of their choice. From music to gardening; from photography to fishing; from boating to flying, assistive technology is available.
For many people, the ability to be as independent as possible in personal care activities is of paramount importance. There are many devices that have been developed to enable people with limited physical function to perform personal care activities with little or no assistance from others. Products are available in the following categories:
- Bathing and Showering
- Grooming and Hygiene
- Health Care
- Sexual Aids
For those with new injuries, consultation with an occupational therapist will be helpful in determining the kinds of assistance required and the best products to help meet those needs.
Making Your Workplace Accessible and Usable
With the variety of adaptive devices available for almost any worksite, many people who have sustained spinal cord injuries have been able to return to their previous positions after their rehabilitation is completed. Whether in an office setting, a warehouse, or on the farm, to mention just a few examples, there are adaptive products and information resources available to make the return to work easier. Product categories include:
- Agricultural Equipment
- Office Equipment
- Specialized Work Stations
General Resources on Spinal Cord Injury
For more information on spinal cord injury in general, the following publications are recommended:
- Spinal Cord Injury: A Guide for Patient and Family. Phillips, L,
et al, New York, NY: Raven Press, 1987. 290 pp.
This practical guide addresses in straightforward laypersons' terms the many medical, social and psychological issues that face people with spinal cord injuries and their families. Co-authored by physicians, lay experts, and a rehabilitation engineer who himself sustained a spinal cord injury, the book clearly explains how spinal cord injuries occur, what happens to the body after injury, and where to go for help. It also describes current research being done to find ways of improving function after a spinal cord injury. A glossary of terms and a list of publications are included. 1987. Raven Press, 1185 Avenue of the Americas, New York, NY 10036. ISBN 0-88167-275-0 (Order Code 1732) Tel: 212/930-9500.
- Spinal Network: The Total Resource for the Wheelchair Community, Second
Edition. Maddox, S. Boulder, CO: Spinal Network, 1993. 568 pp.
One of the most comprehensive resources available for the SCI community, this book offers detailed medical information on spinal cord injuries, covers sports and recreation, travel, substance abuse, sex and romance, fashion, survival on the farm, horticulture, fund raising, history of wheelchairs, cushions, driving, disability rights, legal and financial issues; includes list of resources for the person with SCI, including associations, assistive groups, contacts, state groups, and Canadian provincial groups. Personal perspectives on SCI and many references for further information are included. Available from Miramar Communications, P.O. Box 8987, Malibu, CA 90265-8987. 800/543-4116.
- How to Live with a Spinal Cord Injury.
Written by a person with paraplegia, this guide includes information about dealing with disability on a day-to-day basis. Available from: Accent on Living, P.O. Box 700, Bloomington, IL 61702. 800/787- 8444.
- An Introduction to Spinal Cord Injury.
This pamphlet provides basic information about spinal cord injury, suggested additional readings, and a glossary of terms. Available from: Paralyzed Veterans of America (PVA), 801 Eighteenth Street, NW Washington, D.C. 20006. 800/424-8200, 202/872-1300.
- Fact Sheets on Spinal Cord Injury.
The National Spinal Cord Injury Association, a national membership organization for people with spinal cord injuries, publishes a series fact sheets on spinal cord injury. Topics include: What is Spinal Cord Injury?; Spinal Cord Injury Statistical Information; The Importance of Basic Science in Research; Sexuality After Spinal Cord Injury; and many other topics. A complete publications list describes the NSCIA Fact Sheets series as well as other publications available through the association. Available from: National Spinal Cord Injury Association,545 Concord Avenue, Suite 29, Cambridge, MA 01801. 800/962-9629 or 617/935-2722.
- Yes, You Can!
This is an easy-to-read guide to self-care for people with spinal cord injuries. Prepared by the staff of a spinal cord injury rehabilitation center, it covers issues such as attendant care; bowel and bladder management; psychosocial adjustment; recreation; skin care; and driving. It is available in English or Spanish. Available from: Paralyzed Veterans of America (PVA), 801 Eighteenth Street, NW Washington, D.C. 20006. 800/424-8200 or 202/872-1300.
Funding for wheelchairs and other assistive devices, is dependent upon an individual's eligibility for medical, social services, income support or vocational assistance from any of a number of different resources. Depending upon the terms of the policy, some medical insurance providers cover a portion of the cost of some devices with a doctor's prescription and justification of medical need. Additional funding sources include community agencies, community organizations, and churches.
Further information on resources and methods of funding assistive devices is available from the Assistive Technology Funding & Systems Change Project, a project of the National Institute on Disability and Rehabilitation Research (NIDRR) run by the United Cerebral Palsy Associations, Inc. Individuals requiring information and technical assistance on funding may call 800-827-0093 (voice) or 800-833- 8272 (TT) or fax 404-919-8305. Information about resources is also available in an ABLEDATA Informed Consumer's Guide on Funding Assistive Technology.
A new spinal cord injury can mean major changes in lifestyle, but with the appropriate medical and informational resources and assistive technology, it may be possible to engage in the same activities as before the injury.
For those seeking information on assistive technology and available features, the ABLEDATA database provides information about more than 21,000 products for people with disabilities. ABLEDATA can be reached by calling 800/227-0216 or 301/588-9284. Information specialists are on hand to assist callers locate the information they need. For a small fee, ABLEDATA can provide patrons with computer printouts of information on specific wheelchairs listed in the database. Costs are determined by the size of the database search requested.
ABLEDATA also has a series of Fact Sheets on assistive devices as well as the Funding Assistive Technology ICG discussed above. Other titles include Manual Wheelchairs, Powered Wheelchairs, Wheelchairs for Children, Informed Consumer Guide to Wheelchair Selection.