Chapter 43 Wheelchair mobility for disabled children and adults
Mobility is the ability to move oneself from one place to another. The need to move oneself at will is as basic as breathing. Persons with physical disabilities that impede functional mobility often require a wheelchair to augment or replace the function of walking. The National Center for Health Statistics reports that more than 1.3 million people in the United States use manual wheelchairs, with more than 160,000 using powered devices such as powered wheelchairs and scooters.17 When a person has a physical disability that impedes or prevents walking, a variety of methods, including orthotics, walkers, and crutches, can be used to augment or facilitate mobility. Wheelchairs are considered for a variety of patients, including persons who are unable to walk other than very short distances, whose physical abilities change from day to day or week to week, or who are unable to be mobile without the use of a wheelchair. The first two categories (can walk sometimes and under some circumstances) pose the most challenges to wheelchair evaluation in terms of when to and when not to recommend wheelchairs. Remember that the purpose of mobility is to move from one place to another in the most efficient manner possible. Mobility is not the same as exercise; the person with inefficient mobility should be able to move about at will and still have the energy to accomplish tasks once he or she arrives at the destination. The choice to use a wheelchair need not negate aided or unaided walking. The mobility method should fit the activity.30 For example, walking around the house or classroom may be functional, but grocery shopping or playing on the playground might require wheeled mobility.
Historically, the ability to apply appropriate powered and manual wheelchair technology is young. The first folding manual wheelchair was produced in the United States by Herbert Everest and Harry Jennings in 1933.33 This relatively heavy, steel, chromed wheelchair remained the basic style of the manual wheelchair until the late 1970s. The turmoil of the late 1960s and early 1970s produced the disability right’s movements and independent living centers around the country. People with increasingly serious disabilities, including congenital problems such as spina bifida and acquired conditions such as traumatic brain injuries and spinal cord injuries, were surviving when before they had not. Because of consumer demand in the late 1970s and early 1980s, manual wheelchairs were designed and manufactured that provided choices and custom fitting with individual needs and preferences in mind. Marilyn Hamilton, who has paraplegia as the result of a hang gliding accident, led the way in the development of these types of manual wheelchairs.33 Crude powered wheelchairs initially produced in the 1950s required good upper extremity skills to operate them. During the Vietnam war era, research was performed to develop access to powered wheelchairs for those who did not have upper extremity movement.33 It was not until the flexibility of electronics that resulted from the development of microcomputers that access and control of powered wheelchairs became possible for clients with very severe physical disabilities. Twenty-five years later, health professionals are able to accommodate a variety of physical and functional needs.
Twenty-five to thirty years ago, the variety of wheelchair technology available to assist persons with physical disabilities was limited. Today, a plethora of powered and manual wheelchair technology is available. The challenge for clinicians and wheelchair suppliers is matching client need to specific wheelchair technologies and components. This requires knowledge of clients’ diagnoses and the implications of those diagnoses, their functional and activities of daily living (ADL) needs, and the environments in which they need to function.
Much of the current research involves manual wheelchair technology, how it should be applied, and factors that contribute to overuse injuries in adults. One of the factors that provided the impetus for some of this research is the large population of adults who are aging with an acquired disability. Studies have primarily retrospectively looked at individuals with spinal cord injury. A conclusion common to these studies is that upper extremity pain is a significant problem that potentially interferes with ADLs, and that manual wheelchair propulsion is one of the culprits. Pentland and Twomey23,24 demonstrated an association between duration of injury, not necessarily chronological age, and shoulder pain. Waters and Sie32 found that 46% of persons with tetraplegia and 36% of persons with paraplegia experience shoulder pain. They point out that even a small amount of pain and loss of shoulder range of motion can have a profound impact on a person’s ability to carry out ADLs. Curtis et al.11 noted that one of the most painful activities reported was wheeling up hills.
These and other studies performed in the last decade encouraged researchers take a critical look at the contribution of manual wheelchairs and how they are set up to an individual’s upper extremity problems. A growing body of research assesses the relationship of the location of the rear wheel, forces at the hand rim, and how these forces translate through the wrist, elbow, and shoulder. For example, Boninger et al.3 evaluated the effect of an appropriately set forward axle on 40 wheelchair users. They found lower peak forces, less rapid loading of the push rim, and fewer strokes necessary to get to the same speed as wheelchairs that did not have a forward axle.3
Some studies focus on quality of life, that is, they review the impact of mobility on clients’ lives. In one such study, Davies et al.12 studied 51 individuals in the United Kingdom (North West London) who had just been provided with powered wheelchairs. Diagnoses for this group included multiple sclerosis, muscular dystrophy, cerebral palsy, spinal cord injury, and cerebrovascular accident. The researchers found that mobility and perceived quality of life improved, and pain and discomfort were reduced.12
Although the development of manual and powered wheelchair technologies has seen rapid advances, the focus must be on the consumers and their needs and abilities. A poor match between consumer and technology at best will lead to abandonment of the technology and at worst will cause harm. For example, a manual wheelchair that is too difficult to disassemble for transport may not be used. A powered wheelchair prescribed to someone who is unable to safely operate it could result in a dangerous accident. As with any other clinical intervention, prescription of a powered or manual wheelchair begins with an evaluation. Specific areas must be evaluated and considered. Interwoven with the individual’s needs and wants is medical necessity.18 Most manual and powered wheelchairs are prescriptive devices, paid for by third-party payers. What will be approved through each payer (public or private insurers) varies as to what is considered medically necessary.
The accepted clinical team for a manual or powered mobility evaluation generally consists of a clinician and a rehabilitation technology supplier.22 It is the responsibility of the evaluators to obtain and coordinate all medical, therapeutic, and other information relevant to the client’s needs and abilities. It is taken for granted that the mobility evaluation will be performed once a seating evaluation has been completed. Only when the client’s seated positioning needs are understood can an evaluation for wheeled mobility can take place. This is true whether the evaluation is for dependent or independent mobility. Dependent mobility involves caregivers moving the client in the wheelchair; independent mobility involves the client primarily moving himself or herself. Overall, the wheelchair mobility evaluation process comprises evaluation, trial of equipment, specific recommendations, funding process, and training (of the client and caregiver). Although no validated evaluations are available for wheelchair mobility, certain factors and areas must be considered4: physical considerations, cognitive and perceptual motor considerations, ADL and functional skills, environmental and transportation needs, and technology tolerance.
The first area that must be understood is the client’s diagnosis and its characteristics and ramifications. Factors such as rate of disease progression and severity of weakness and spasticity may impact the prescription. A more quickly progressive disease process may lead toward recommendations for mobility that is modular, flexible, and changeable. A client who has no sensation or has poor ability to perform a pressure relief requires consideration for technology that provides a mechanical pressure relief.
During an independent mobility evaluation, the clinician assesses the client’s physical skills as they relate to movements necessary for propelling a manual wheelchair or accessing the controls of a powered wheelchair. The assessment may include strength and coordination of movements. Movements necessary for propulsion of a manual wheelchair typically include use of both upper extremities, one upper and one lower extremity, or both lower extremities. These movements should have sufficient strength and coordination that allow the client to move the manual wheelchair about the environments in which he or she needs to function. Additionally, the movements should not have a deleterious effect on the client’s posture or stability. For example, a client with spastic quadriplegic cerebral palsy may have a kyphotic posture that is exacerbated by the motions of propelling with the upper extremities. A client with weak upper extremities, such as a client with C5-6 tetraplegia, may have to overuse available musculature, resulting in undesirable compensatory movements. The clinician and client need to balance the use of a manual wheelchair with the long-term effects of propelling full time.
Movements or actions necessary to operate a powered chair are varied due to the wide array of powered chair access methods. It may involve a movement at a single site, such as hand function with a joystick, or multiple sites, such as using single switches by a client who is more severely physically involved. The movements used must allow for consistent and safe operation of the powered wheelchair.
A primary concern in the choice of method of wheelchair mobility is safety. Problem-solving ability in the environments in which clients will function must be assessed. Accommodations may allow a client with cognitive deficits to be provided with independent powered or manual mobility. A client with a consistent caregiver who can provide structure and supervision could be considered. There is no substitute for actually assessing the client in various environments in the type of wheelchair being considered. Safety must be the final outcome.
Another scenario is evaluation of a child for wheelchair mobility. Children require supervision commensurate with their age and developmental level, no matter what their method of mobility. The wheelchair mobility evaluation is performed with the expected outcomes in line with the child’s developmental level. The child should be able to demonstrate “go” and “stop” and some cause/effect.
Clinical decision making about whether to provide independent mobility in either of these scenarios, especially power, depends on several factors. The availability of long-term, consistent training is among the most important. As with any other skill, consistent training is necessary. Training can come from a therapist, parent, or other person who can provide guided supervision. The therapist can provide a treatment plan or ideas for exposing the client to the environments in which he or she needs to function. A trial with a well-fitted “loaner” power mobility device may help determine the client’s ability to operate and safely function in such a device, if such ability is in question.
Neurologic diagnoses such as stroke, multiple sclerosis, and cerebral palsy can result in visual field disturbances, such as field cuts or difficulty judging distances. Some clients may be able to compensate for these perceptual motor problems. Evaluating the client in a wheelchair is needed to actually see his or her response to moving through the environment.
The clinician must have an understanding of ADL and functional skills that are performed in the wheelchair to ensure that the structural stability, dimensions, and components of the wheelchair match the client’s needs. For example, the client may have a marginal ability to transfer based on the seat height of the wheelchair. Another client may dress in the wheelchair and require strong back posts to support this activity. Components such as oxygen containers, feeding bags, and ventilators must be safely incorporated onto the wheelchair base, without compromising safety or stability.
The wheelchair must fit into the client’s current environments and method(s) of transportation. When evaluating a client who is new to wheeled mobility or who is considering a wheelchair that is different from what he or she currently uses, certain measurements need to be obtained. With an existing wheelchair, the minimum measurements taken should be the overall width and length of the chair and the height from the floor to the seat tubes/seat pan. The client’s home should be measured and, where applicable, the client’s adapted vehicle should be measured for width, length, and turning radii.
The types of environments in which the client functions should be ascertained. When possible, it is highly recommended that the wheelchair being prescribed be tried in the client’s home, vehicle, workplace, and other relevant locations. Wheelchair types and component selections are made according to how the wheelchair will be used. This can help overprescribing and underprescribing. For example, a client who wants to use the wheelchair only in an indoor environment does not need a wheelchair base designed to handle rough terrain. A lightweight chair may be needed if the chair must be lifted into a car by the user.
Powered and manual mobility technology can be complex. The ability to use and maintain powered and manual mobility successfully must be assessed. Just because technology can be applied to a situation does not mean that it should. Some clients/caregivers can handle complex powered wheelchair systems, whereas others seem to have trouble just remembering to charge the wheelchair. The client and caregiver must be motivated to carry through with training, maintenance, and follow-up; otherwise, abandonment of the technology is likely.