Achieving Functional Independence

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Chapter 26 Achieving Functional Independence

Ellen Guess, Debra Paul, Alison E. Lane

Functional independence is the ability to perform daily living tasks without help. The achievement of functional independence ensures that individuals can participate fully in life situations that are meaningful and purposeful. Whether experiencing a physical disability or not, participation in activities of daily living or life occupations is essential to health and well-being.3 Anthropologists have noted that involvement in the daily routines of self-maintenance, production, and leisure enables humans to express themselves, establish relationships, and build self-identity.5 The World Health Organization has recognized the importance of participation in life situations to health by reframing the International Classification of Impairments, Disabilities, and Handicaps31 as the International Classification of Functioning, Disability and Health.30 In doing this, understandings of health have shifted significantly from definitions relating to the absence of disease or impairment. This embraces the notion of an individual engaging with and functioning in her or his world even with the presence of a disability and physical challenges. Supporting this shift is emerging evidence of the powerful therapeutic benefit of participation in meaningful daily occupations.5 Individuals who are able to achieve meaningful participation in life situations are more likely to experience and report increased personal satisfaction and quality of life, increased levels of energy, fewer physical ailments, reduced pain, and improved physical functioning.17 Ultimately, this impact can decrease the costs of health associated with burden of care, the treatment of physical symptomatology, and poor emotional health.

The goal of medical rehabilitation programs for persons experiencing physical disability as a result of injury, illness, or a developmental condition is to maximize functional independence over time.7 All members of the rehabilitation team are focused on restoring or enhancing functional capacity such that individuals can engage optimally in daily life tasks that are meaningful and purposeful. Because of the subjective nature of what constitutes “meaningful” and “purposeful,” it is important to adopt a family- or client-centered frame of reference for care. This frame of reference defines a set of philosophies, attitudes, and approaches to care for persons with special needs and their families.8 It refers to a relationship between the person, family, and health care professional that builds on the person’s and family’s priorities and that responds to their mutual goals.4 Some key elements in family- or client-centered care include recognizing family strengths, respecting different methods of coping, facilitating family and professional collaboration at all levels of health care, and sharing complete and unbiased information with families on a continuing basis and in a supportive manner. By adopting this frame of reference in practice, the rehabilitation team will be able to plan an evaluation and treatment process that matches the individual’s life goals and priorities. Rehabilitation programs that focus their interventions in this way are more likely to achieve the desired outcomes of enhancing productive living, promoting efficient recovery, and reducing the burden of care for individuals with physical disabilities over the long term.10,16,26

The aim of this chapter is to provide an overview of the current evaluation and treatment principles used by the rehabilitation team to assist an individual experiencing physical disability to achieve functional independence.

Evaluation

Using a family- or client-centered approach, evaluation of an individual’s functional independence necessarily begins with the determination of that person’s life goals, premorbid roles and activities, priorities for recovery, and contextual or cultural influences. From here, a more specific assessment can be conducted that evaluates the individual’s actual performance abilities and limitations in key areas of function. It also measures components of functional skill, including strength, range of motion, tone, sensation, balance, coordination, visual perception, and cognition. This type of evaluation process is referred to as the top-down approach and is considered “the best fit for the emerging system of health-care delivery.”14 The top-down approach has the advantage of focusing clearly on the roles and activities that are meaningful for patients, which increases motivation for participation in the rehabilitation process and increases the understanding of the relevance of rehabilitation to daily life. The top-down evaluation approach also allows for documentation of outcomes of rehabilitation in terms that are most likely to receive maximum reimbursement. Payers specifically seek outcomes of therapy that allow the patient to function most efficiently and effectively in daily contexts.14 Top-down evaluation results in the medical team addressing rehabilitation goals that are directly related to the individual’s performance in life roles.

Evaluating Meaningful Life Roles and Activities

Assessment of a person’s life goals, valued functional roles and activities, and priorities for recovery is a complex one. Because of the subjective nature of the content, there are few evaluation tools that provide the rehabilitation team with succinct, quantifiable data relating to this issue. Information about the person’s priorities and premorbid activity is usually gained through discussion and interview with the person and/or caregivers. It is important that those team members charged with the responsibility of gathering this information are skilled in techniques of interviewing and counseling to ensure that the individual is able to clearly communicate personal needs and wants.

Within the field of occupational therapy, an evaluation tool has been developed specifically for the purpose of assisting occupational therapists to establish occupational performance (functional performance) goals and priorities with their clients. The Canadian Occupational Performance Measure (COPM)18 was developed using a client-centered frame of reference and consists of a semistructured interview approach for gathering patients’ perspectives on their needs and wants in areas of self-care, productive living, and leisure. The evaluation process encourages patients to rate their perceptions of their current levels of performance and satisfaction with participation in key functional tasks. These are then reevaluated and rerated at the end of the rehabilitative process to provide outcome data relating to the patient’s perspective on recovery. Evaluation tools such as the COPM provide broad, descriptive information about the person’s functional independence needs, which allows the rehabilitation team to target specific areas requiring further evaluation and focus in treatment.

Evaluating Specific Performance Abilities

Once the patient’s valued life roles and activities have been identified and goals for rehabilitation determined, more specific evaluations are then completed to establish what performance limitations and abilities exist. A variety of methods can be used to assess functional skills. In many cases, therapists use guided observation and task analysis to determine the level of functional independence demonstrated by the patient. A number of formal measures have been developed for the purpose of measuring functional capacity. The most commonly used tool in this area is the functional independence measure (FIM).2 The FIM consists of 18 items examining the functional areas of self-care, sphincter control, transfers, locomotion, communication, and social cognition. Scores on the FIM provide an indicator of level of disability within motor and cognitive domains based on the level of assistance a patient requires to perform key functional tasks.21 A pediatric version of the FIM, the WeeFIM,1 has been developed for children aged 6 months to 7 years. It uses a similar structure to the FIM but modifies the items to account for developmental differences in social cognition and communication domains. Data from the FIM and the WeeFIM are being compiled in the Uniform Data System for Medical Rehabilitation to provide a repository of information regarding the functional independence of adults and children experiencing physical disability. Other tools used in rehabilitation settings to measure the functional abilities of patients include the following:

• The Barthel Index: This index measures activity of daily living skills, including feeding, transfers, personal hygiene, toileting, bathing, ambulation, stair climbing, dressing, and bowel and bladder control.19
• The Assessment of Motor and Process Skills (AMPS): This observational tool allows for the evaluation of motor skills with a concurrent evaluation of process skills necessary to complete a task.9 The therapist chooses two or three activities of daily living tasks based on their relevance to the patient. Motor skills observed include stabilization, alignment, positioning, walking, reaching, bending, coordination, manipulation, endurance, and grip. Process skills observed include pacing, attention, choice making, initiation, adjustment, sequencing, organization, navigation, and accommodation.
• The Pediatric Evaluation of Disability Inventory (PEDI): This measure assesses functional performance in children aged 6 months to 7.5 years in the areas of self-care, mobility, and social function.13 Scoring includes a rating of functional skill, level of caregiver assistance required, and use of modifications or adaptive equipment.
• The Functional Rehabilitation Evaluation of Sensori-Neurologic Outcomes (FRESNO): This tool assesses functional performance in 0- to 18-year-olds across self-care, motor, communication, cognition, and socialization domains involving 196 items and including a rating of caregiver assistance and adaptive equipment required.25

Evaluation tools such as those discussed above provide the rehabilitation team with an overview of the functional skill competence of the patient and can provide a basis on which to measure the overall effectiveness of the rehabilitation program. These tools can provide information about a patient’s functional limitations, but they do not allow the members of the rehabilitation team to determine the specific components of functional performance that might require remediation.

Evaluation of Components of Performance

The final step in the top-down evaluation process involves the detailed assessment of the component skills that are necessary for functional independence. Depending on the identified priorities for rehabilitation of the patient and the results of the functional independence measures, all or only some of these component skills might be assessed. Information gathered from this stage of the evaluation will assist the team in determining the most appropriate course for treatment. The following component skills are typically included in an evaluation:

• Joint measurement: Passive and active range of motion is evaluated in joints required for the performance of functional skills. The evaluation seeks to determine any limitations in range of motion in upper and lower limbs that might impact patient function and require the need for remediation or adaptive equipment.
• Muscle strength: Muscle strength is often affected in disorders of the lower motor neuron system or the muscles themselves. Muscle weakness can significantly limit functional performance. Good to normal muscle strength is generally considered necessary for the independent performance of functional tasks.22
• Muscle tone, reflexes and reactions, and coordination: Normal muscle tone is essential for the stabilization of joints, movement against gravity, and the ability to shift from stable to dynamic postures. These movement components are necessary for independent performance of functional tasks. Evaluation of the degree of hypotonicity or hypertonicity, the presence or absence of incoordinated movements (such as tremor, ataxia, or athetosis), and the presence or absence of immature reflexes and reactions allow the therapist to determine what measures might be necessary to promote independent function.
• Sensation and perception: Intact sensation and perception are essential to the safe and accurate performance of daily living tasks. Elements of sensation commonly assessed include pain, light touch, pressure, thermal sensitivity, discrimination, olfaction, and gustatory sensation.15,28 Evaluation of perception, including proprioception, stereognosis, body scheme, unilateral neglect, visual form, space perception, and praxis, is necessary to determine the impact on functional performance. A combination of both clinical observation and standardized testing can be used to assess these components.
• Cognition: Cognitive skills such as memory, sequencing, problem solving, judgment and decision making, abstract thinking, and calculation impact the capacity of a person to participate in many productive activities. These can include home management, paid employment, schooling, and volunteer work. Standardized testing is available to measure cognitive skill level. Observations of processing skills during the performance of routine tasks can also reveal cognitive impairments.
• Oral–motor and swallow function: Intact oral–motor skills, oral sensory skills, and swallowing function are essential for safe and independent eating and drinking. Evaluations in this area are generally carried out by specialized occupational and speech therapists. Oral muscle tone, oral sensation, and coordination are assessed to determine whether food can be effectively and efficiently managed in the mouth. Observation of gagging, choking, or coughing while eating can indicate swallowing dysfunction. For diagnosis of swallowing disorders, a videofluroscopic study, such as an upright modified barium swallow study, should be carried out (see Chapter 27).

Using a top-down approach to evaluation, the rehabilitation team can quickly formulate a plan for intervention that involves patients and their families in key decision making that is likely to result in the most effective approach to treatment.

Treatment

A number of treatment approaches can be used to assist an individual experiencing physical disability to achieve functional independence. The treatment approach chosen by the therapist and team depends on the specific goals set by the individual, the degree of functional limitation experienced, and the type and severity of the component skill impairments noted. Multiple treatment approaches can be used simultaneously with an individual to address different goals. Treatment approaches can generally be understood to fall into two main categories: restorative or compensatory.14 The goal of a restorative or facilitatory treatment approach is to restore the person’s capacity to perform functional skills by restoring the impaired component skills. The aim of this approach is to retrain the individual to perform functional tasks in the same way as was done premorbidly. It is an appropriate treatment strategy when complete or close to complete recovery is expected and few environmental or contextual barriers to functional independence exist. A number of frames of reference for intervention can be adopted depending on the impairments experienced by the individual. The most common frames of reference used in physical rehabilitation are as follows:

• Developmental: This frame of reference assumes that recovery occurs following a hierarchic, sequential approach where simpler skills form the building blocks for complex ones. Therapy facilitates this progression by assisting in the attainment of developmentally easier skills before embarking on more complex routines. Examples of treatment techniques that use a developmental frame of reference include sensory integration, neurodevelopmental therapy (Bobath), proprioceptive neuromotor facilitation, Brunnstrom’s movement therapy, and Rood’s sensorimotor approaches.11
• Biomechanical: This frame of reference assumes that remediation of the specific component skills that are impaired will result in a return to functional independence. Treatment techniques using this frame of reference prescribe specific interventions such as exercises and graded activities to restore range of motion, strength, endurance, and normalization of tone. One example of this approach includes using botulinum toxin type A to weaken hypertonic muscles that impair function. Another approach might include serial casting to increase the length and number of muscle fibers in a hypertonic muscle to reduce tone and increase function.
• Psychosocial: Increasingly in physical medicine and rehabilitation a psychosocial frame of reference is used alongside more traditional physical rehabilitative approaches. This is in recognition of the importance of addressing issues surrounding adjustment to illness or injury, social support, and the increased likelihood of chronic emotional disturbance in individuals with significant and life-limiting disabilities. Treatment techniques using this frame of reference can include individual counseling, family therapy, social skills training, and education to patients and significant others about disease or condition processes. These techniques aim to restore the emotional well-being of the individual and, by doing so, to enhance participation in the rehabilitative plan and prevent secondary illnesses.

The goal of a compensatory or adaptive approach in rehabilitation is to facilitate functional independence through the adaptation or modification of a routine or task, or use of adaptive equipment that aids in compensation for functional skill limitations. Compensatory or adaptive approaches are useful when full recovery is not expected or significant permanent disability is likely. This approach can involve a variety of therapeutic strategies for functional difficulties, including the following:

• Changing the method by which a task is completed (e.g., using the tenodesis action to allow gross grasp and release with someone with a spinal cord injury, or teaching a one-handed dressing technique)
• Adapting objects needed for a task or prescribing an assistive device (e.g., building up the handles on eating utensils, or using a long-handled reacher to retrieve objects out of reach)
• Modifying the environment (e.g., redesigning an entire home environment or workplace to allow access for someone in a wheelchair, or removing mats and rugs to prevent falling and allow more independent mobility)12,14

With the enormous progress made in recent years in technology, individuals with physical disabilities are now able to achieve much higher levels of functional independence than was previously possible through the use of technologic aids. The area of assistive technology is a dedicated field within rehabilitation that specializes in fitting individuals with physical and cognitive disabilities with both low- and high-tech solutions to enhance mobility, communication, community access, and learning. The application of assistive technology in physical disability is discussed in Chapters 17 and 23 of this text.

The remainder of this chapter reviews treatment principles and goals in key areas of functional performance, and outlines commonly used adaptive equipment relevant to each area.

Self-Maintenance

Feeding

Feeding is a primary task of daily living essential for maintaining adequate nutrition and for participation in significant social and cultural routines. Mealtime management is generally identified by patients, families, and the rehabilitation team as a priority for intervention. Within the area of feeding, treatment might focus on developing:

• Underlying oral–motor and oral–pharyngeal coordination necessary for safe oral intake and swallowing
• Required physical skills for independent self-feeding
• Routines and strategies essential to manage the social and behavioral aspects of mealtimes

Treatment techniques incorporate both restorative and compensatory approaches. Where significant behavioral concerns exist, counseling, parent education, behavior management, and group therapy might also be indicated. Adaptive equipment commonly used to facilitate independence in feeding might include the following:

• Nonslip matting: This is useful to stabilize dishes when bilateral coordination or strength is compromised.
• Scoop dishes or plate guards: These allow food to be stabilized against the raised side, facilitating independence for individuals with functional use of just one hand (Figure 26-1).
• Weighted utensils and cups, and swivel utensils: These assist in compensating for limited hand control, ataxia, or movement disorders.
• Rocker knife: This is useful when bilateral upper limb functional skills are impaired, as seen with involvement in the patient with hemiplegia or with a spinal cord injury. A rocker knife is used by pushing the knife down into food and rocking the knife until the food is cut. This avoids the traditional sliding method, while stabilizing the food with a fork in the opposite hand (Figure 26-2).
• Adapted and built-up utensils, utensil cuffs, and splints with utensil slots: This equipment assists individuals with weak or absent grasp (see Figures 26-2 and 26-3).
• Mobile arm supports or suspension slings: These systems support the forearm while assisting and maximizing motions such as shoulder flexion and extension, horizontal abduction and adduction, external and internal rotation, and elbow flexion and extension. For individuals with limited range of motion for hand to mouth activity, these devices may support independence (see Figure 26-3).
• Sippy cups, cutout cups, spouted cups, and various bottle systems: A variety of bottles and cups are available to assist children without adequate oral–motor or oral pharyngeal skills such as sucking and lip closure (Figure 26-4).
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FIGURE 26-1 A scoop dish and a plate with plate guard are used by pushing food against the rim to scoop; it also helps as a guide.

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FIGURE 26-2 Adapted utensils: custom-made handle (A), rocker knife (B), spoon with plastic shallow bowl (C), and weighted utensil (D).

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FIGURE 26-3 The mobile arm support promotes upper limb function when shoulder or forearm strength is weak. This individual also has a long opponens splint with a utensil and a vertical holder for a spoon to allow independent eating.

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FIGURE 26-4 Bottles/specialized feeding systems designed to help children without adequate oral–motor or oral pharyngeal skills.

(Courtesy The Children’s Hospital, Aurora, Colo.)

Dressing

Achieving functional independence in dressing is also commonly a high priority for patients and the rehabilitation team. Independence in this daily task reduces the physical and time demands of caring for individuals with a disability, and maintains the dignity and privacy of those individuals. Within the area of dressing, treatment can focus on developing skills in:

• Undressing or doffing clothing
• Dressing or donning clothing
• Managing fasteners (e.g., buttons, zippers, and snaps) and accessories (e.g., belts and shoes)

Treatment techniques incorporate both restorative and compensatory approaches. Substantial gains can be made toward independence through the use of simple compensatory techniques. For example, one-handed dressing techniques that require neither caregiver assistance nor adaptive equipment can be taught to an individual with hemiplegia. The careful selection of clothing, such as avoiding complex fasteners, can also promote increased independence. Modified clothing is now commercially available; however, homemade modifications can also be effective. For example, when hand strength is limited, putting loops on socks is useful to assist in pulling them up. Velcro fasteners on pants can facilitate toileting. In the case of perceptual or cognitive problems, labeling clothes helps the person distinguish front from back. Adaptive equipment commonly used to facilitate independence in dressing includes the following:

• Button aids: These devices consist of a wire loop that hooks around the button and is then pulled through the hole (Figure 26-5). They work especially well for those individuals with reduced manipulation and bilateral motor skills.
• Zipper pulls: These are simple to make and can be chosen or designed by the individual and can be as simple as a loop tied to the zipper or a wire hook used to pull up the zipper (see Figure 26-5). They are used primarily by individuals with limited prehension.
• Elastic shoelaces: These are similar to regular cloth laces, except that the elastic laces do not need to be untied or retied each time (see Figure 26-5). The laces stretch to allow the foot to enter the shoe.
• Reacher: This is useful for retrieving items of clothing when a person has limited reach and mobility (Figure 26-6). A reacher is an extended stick, usually made of lightweight aluminum, with a grasping unit at the end. It is operated by squeezing the handle, which activates the gripper position to open and close. Reachers come in many lengths and handle types to adapt to a person’s ability to grasp.
• Dressing sticks: These are used to aid in pulling up pants and socks.
• Stocking aids: These devices reduce the need to bend at the hips to don socks (Figure 26-7). They consist of a sock holder and an attached rope. The sock is placed over the sock holder. The foot is slid into the sock holder, and then the rope is used to pull the sock over the person’s foot.
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FIGURE 26-5 Fastener adaptations: button aid (A), knob handle button aid (B), zipper pull (C), and elastic laces (D).

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FIGURE 26-6 A reacher is used to assist in picking up objects from the floor. A reacher helps persons with limited lower limb and upper limb mobility.

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FIGURE 26-7 A stocking aid is used when a person is limited in reaching down to the feet or when lower limb mobility limits bringing the foot near to the hands. A person places the stocking over the sock holder, places the holder in front of the foot, and pulls at the rope to pull it up.

Bathing and Grooming

In a similar fashion to dressing, achieving independence in bathing and grooming significantly decreases the physical and time burden on caregivers of individuals with disabilities. This also helps to maintain the individual’s sense of dignity and privacy. The bathroom can be a safety risk area for an individual with significant physical or cognitive disability. To gain independence in this environment, the individual must be able to safely negotiate slippery floors and small spaces and use safety strategies around use of various temperatures of water. Within the area of bathing and grooming, treatment focuses on the development of:

• The motor coordination and balance required for performance of various grooming and bathing tasks
• Cognitive and behavioral skills necessary to minimize injury and harm (e.g., from hot water or power outlets)
• Environmental redesign to maximize safety and access in the performance of grooming and bathing tasks

Restorative treatment approaches can be used to promote physical skill competence. Compensatory techniques such as task and environmental modifications are most likely to be used to optimize the independence of the individual with physical and cognitive impairments to promote bathroom safety (e.g., turning down the temperature on the home hot water system to minimize scalds). Major bathroom renovation is often necessary to achieve independence in bathing and grooming for an individual using a wheelchair for ambulation (Figure 26-8). Adaptive equipment commonly used to facilitate independence in grooming includes the following:

• Utensil cuffs and adaptations (e.g., built-up handles and long handles): These allow for independent grasp of tools such as brushes, razors, or toothbrushes when grasp is weak, and enhance reach when range of motion is diminished.
• Electric shavers and toothbrushes: Without adaptation, these devices can assist those whose strength and endurance are limited.
• Liquid soap or use of wash mitts with soap pocket: These allow for the secure grasp of soap to complete face and body washing.
• Suction cups: These can be used to attach tools such as nail clippers, brushes, and emery boards to facilitate one-handed use or to compensate for reduced bilateral hand function.
• Nonslip matting: This can be used to secure bath mats on a tiled floor or within a bath or shower to prevent slipping.
• Grab bars or rails: These can be mounted at various places in the bathroom to facilitate safe transferring into and out of a bath, shower, or onto or off of the toilet.
• Handheld shower heads: These allow for reaching all parts of the body with greater ease while in a seated position for individuals with limited mobility.
• Bath chairs or rings: These provide supported positioning for the individual when in the bath or shower while allowing access to all parts of the body for thorough cleaning (Figure 26-9).
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FIGURE 26-8 Sink with infrared sensor for easily turning water on and off when performing grooming and hygiene activities at the sink.

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FIGURE 26-9 A bath chair provides supported positioning for an individual in the bath or shower.

(Courtesy The Children’s Hospital, Aurora, Colo.)

Hygiene and Health Routine Maintenance

Bowel and bladder management, menstrual care, and the management of health routines and procedures (e.g., skin care and medication regimens) are activities of daily living that are highly personal and intimate in nature. Achieving functional independence in these areas protects the individual’s sense of dignity and privacy, ensures maintenance of social participation and acceptance, and optimizes physical health and well-being. Skills required for dressing, bathing, and grooming are also required to perform basic hygiene and health routine tasks. To enhance independence in these areas, treatment focuses on developing:

• Upper limb range of motion, hand function, mobility, and endurance
• Upper and lower body dressing skills
• Modified routines to account for physical or cognitive limitations
• Adapted dispensing equipment or garments
• Cognitive and behavioral skills to reliably comply with socially accepted hygiene standards

Restorative treatment approaches would be primarily used to promote improved upper limb dressing and cognitive and behavioral performance. Compensatory techniques would be used to address the modification of routines, equipment, and garments to enhance independence. Adaptive equipment commonly used to facilitate independence in maintaining hygiene and health includes the following:

• Reaching aids: These devices can assist with dressing, hygiene, and toileting tasks.
• Commode chairs, raised toilet seats, and potty chairs: These adapted chairs can assist positioning on the toilet when use of a standard toilet is not possible.
• Splints: Various splints can be manufactured to facilitate self-catheterization or the placement of hygiene products for menstrual care.
• Catheter inserters, clamps, and adapted leg bag emptiers: These facilitate independent management of urinary incontinence in individuals with spinal defects or injuries.
• Adapted suppository inserters and digital stimulators: These devices can be useful for those with weak hand strength or incoordination in managing fecal incontinence.
• Long-handled mirror: This allows for personal inspection of skin to check for pressure areas or inspection for appropriate placement of hygiene products.
• Timers: These can be useful in providing an auditory reminder to perform health routines (e.g., weight shifts to assist in preventing pressure sores, cathing, insulin injections, and medication taking).

Functional Mobility

Functional mobility is the capacity to move from one position in space (e.g., sitting, lying down, or standing) to another position to enable participation in normal daily routines and activities. Functional mobility includes bed mobility, transfers, ambulation, wheelchair mobility, driving, and taking public transportation. Achieving independence with functional mobility tasks significantly reduces the level of long-term care required by the individual with a disability. Independence allows the individual to participate in a range of self-care, productive, and leisure activities, thereby promoting a sense of self-worth and actualization.

Bed Mobility

Bed mobility includes rolling in bed; scooting up, down, or toward either edge of the bed; and coming to a sitting position at the edge of the bed. Full independence in bed mobility requires being able to get into bed, position or reposition oneself to sleep, and get out of bed without the assistance of another person. Treatment to encourage independence in bed mobility focuses on:

• Developing head control, upper and lower body strength, and improving motor planning skills
• Improving physical endurance
• Adapting tasks to optimize the use of residual skills
• Providing modifications to bedroom layout and furniture to assist independent function

A combination of restorative and adaptive treatment approaches can be used to enhance independent bed mobility. Adaptive equipment commonly used in this area includes the following:

• Loops: Loops attached along the edge of the bed or onto the bed railing can conserve one’s energy by providing an anchorage or lever point for the individual. Loops can be useful in both repositioning within the bed and getting into and out of bed.
• Overhead trapeze bar: This fixture can help a person to sit at the edge of the bed or to scoot up or down in bed.
• Step stool: When placed on the floor at the edge of the bed, a step stool can make it easier to get into and out of bed. A step stool also allows for appropriate positioning when sitting at the edge of the bed.
• Powered hospital bed: This piece of equipment might be required to improve independence in an individual with significant physical disability. This bed allows for motorized raising or lowering of the head of the bed, bringing the person to a sitting position, and can assist with more comfortable positioning for sleep.

Transfers

The ability to transfer is necessary for anyone who uses a wheelchair for mobility. For a person to be independent in daily living tasks, transfers must be performed to wheelchair, bed, commode, bath tub, shower, and car (if a van is not adapted for the wheelchair). It is also desirable that all wheelchair users are adept at wheelchair to floor, and floor to wheelchair transfers in case of a fall. This is especially helpful for children who often need to be able to get on the floor to participate in activities with other children. A person can perform a transfer in many different ways. Depending on the functional limitations, certain transfers are faster and more efficient than others, and can change as the person’s abilities change. Transfers generally require good upper body strength and sitting balance. Transfer training can involve:

• Development of improved upper body strength and sitting balance
• Determination of the most practical and efficient method of transferring within different daily routines and contexts.

Some of the more common methods of performing transfers are described below:

• Stand–pivot transfer: For persons who can attain and maintain standing for short periods, the stand–pivot transfer is the most efficient method. Adequate hip and knee extension and good sitting balance are required. In this transfer, the person rises from a seated to a standing position and pivots to the adjacent chair to sit down. A modification of the stand–pivot transfer is the sit–pivot transfer, in which good sitting balance and upper body strength are used to lift the hips up and across to another chair without standing. The feet are usually positioned on the floor. If the legs are too short to reach the floor (frequently the case in children), the feet can remain positioned on the footrests of the wheelchair or on a step stool.
• Sliding board transfer: Sliding boards bridge the gap between transferring surfaces.20 One end of the sliding board must be positioned securely under the individual’s buttocks, and the opposite end placed solidly on the other surface. Once the board is positioned securely between the surfaces, the person scoots his or her hips across the board to the new surface (Figure 26-10). As with the sit–pivot transfer, the feet can be positioned on the floor or remain on the footrests of the wheelchair. Sliding boards are available in many shapes and sizes, and adaptations can be added according to a person’s individual situation.
• Wheelchair to floor transfers: Various methods can be used to transfer from the wheelchair to the floor. Using the forward method, the footrests are rotated to the side and the feet are placed on the floor. Then, flexing far forward in the wheelchair, individuals place their hands on the floor and lower themselves to the floor.
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FIGURE 26-10 Sliding board transfer. The sliding board bridges the gap between the wheelchair and bed. The person uses upper limbs to scoot across the surface from the wheelchair to the bed.

Pivoting to the floor is another method. With the footrests removed or rotated to the side, the person scoots to the edge of the wheelchair and pivots the hips so that she or he is sitting on one buttock. Hands are placed on the seat of the wheelchair. The body is pivoted out of the wheelchair, and the knees are lowered to the floor. From the kneeling position facing the wheelchair, the person can then lower the hips to the floor into a side-sitting position.

Yet another method is used when long leg braces are worn. In this case, the footrests must be removed or rotated to the side; hips are moved to the edge of the wheelchair; and the knees are extended with the heels placed on the floor. Placing the hands on the forward-most frame of the wheelchair, the person lowers the hips to the floor. This method requires good upper body strength and long arms for leverage to control the lowering movement for the entire distance to the floor. Pediatric wheelchairs, with a lower floor to seat height, can help some children perform this type of transfer.

The first two methods can be reversed to transfer from the floor back into the wheelchair. The last method is more difficult because very good upper body strength and leverage are important for success.

Ambulation

A person’s level of functional independence can be significantly affected by the ability to ambulate. To ambulate, one must have sufficient lower body and trunk strength, as well as balance, coordination, and cognitive skills for safety and timing. Treatment focuses on:

• Restoring the underlying physical skills required for independent ambulation
• Gait analysis (see Chapter 5 for a detailed discussion of this process)
• Gait training to promote efficient gait motion

Independent ambulation is not time or energy efficient in some cases, and the use of orthoses and other adaptive equipment might be required (lower limb orthoses are discussed in detail in Chapter 16 of this text). Commonly used walking aids include the following:

• Crutches: These devices can compensate for an inefficient gait as a result of reduced muscle power, pain, impaired balance, or joint damage (Figure 26-11).29
• Walkers: A variety of walkers provide differing levels of support for an individual who has unilateral or generalized weakness, has incoordination of the lower limbs, or requires a temporary aid to build confidence (Figures 26-12 and 26-13).29
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FIGURE 26-11 A, Axillary crutches are used by individuals with good balance and coordination; the length of time these crutches are required is usually short. B, Forearm crutches have a cuff around the forearm that is open at the front or side and are used mostly by individuals needing crutches on a long-term basis (e.g., an individual with paraplegia who may require bracing with ambulation). C, Kenny crutches are used mostly by children who need total contact around their forearm.

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FIGURE 26-12 A, Rolling walker with platform attachments for a person with limited upper limb strength and range of motion. The person’s forearms rest on the pads and accept the person’s weight as the lower limbs take “steps.” The wheels allow the walker to be pushed forward without having to lift the walker. B, Standard walker. The person must have significant hand strength and range of motion to grip the walker, as well as good standing balance and upper limb strength to lift the walker to advance it forward.

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FIGURE 26-13 A reverse walker is used to facilitate an extension posture with a person who tends to maintain a flexed posture while standing.

Wheelchair Mobility

For people who are unable to ambulate or are able to ambulate only short distances, the use of a wheelchair for mobility can allow increased functional independence in the community. The process for evaluating and prescribing a wheelchair for an individual with a disability is described in detail in Chapter 17 of this text. Many factors affect the type of chair prescribed, including many aspects of the individual’s skills and abilities, the contexts in which the chair will be used, transportation options, and the availability of maintenance support.29 After the wheelchair is prescribed, a period of training might be required to fully develop the individual’s skills in independent use. With the variety of technologies currently available in manual and power wheelchairs, it is now possible for individuals with high degrees of physical disability to independently mobilize in a wheelchair.

Driving

Being able to drive or be transported in a private vehicle is often an identified priority for individuals with disabilities and their families. Achieving this level of independence in mobility means that individuals have access to a broader range of productive and leisure activities. Individuals can then easily attend social occasions, participate in vacations, and complete routine daily errands. A compensatory approach is most commonly used to address issues of independence in driving or traveling in a private vehicle. For self-driving, careful evaluation of residual physical and cognitive skills will determine the level of accommodation needed in car controls and operation. Commonly used car adaptations include the following23:

• Mechanical hand controls: These allow an individual without lower limb function to perform acceleration and braking functions using the upper limbs.
• Foot controls: In a similar fashion to hand controls, these devices allow for the steering of the car using the lower limbs when upper limb function is insufficient to perform this task.
• Power seats, steering, brakes, and windows: These adaptations may compensate for reduced or weakened motor function.
• Steering wheel knobs and cuffs: These allow for one-handed steering operation or promote better grasp and control of the steering wheel.
• Handles and levers: Small handles and levers can be attached to key functions in the car (e.g., windshield wiper stick) to enhance access.

For children or other individuals not able to self-drive, various adaptations can be made to support transportation in a private vehicle. Some examples are as follows:

• Custom car seats: These seats allow an older child with a disability to be appropriately positioned and transported safely in a car or a van.
• Wheelchair tie-down systems: These systems usually require significant modifications to be made to the private car or van but allow secure transportation of an individual in a wheelchair inside a vehicle.
• Power lifts and ramps: These devices allow easier access by a person using a wheelchair into and out of the car.

Public Transportation

The capacity to use public transportation independently can offer older children and adults with disabilities and their families or caregivers additional convenience in the completion of daily routines. Many public transportation systems, including buses, trains, and ferries, make specific accommodations for people with physical and cognitive disabilities. Training in the independent use of these facilities involves:

• Determining the availability of suitable public transportation options in the local area
• Understanding the physical and cognitive abilities of the client and his or her ability to access public transportation appropriately and safely
• Prescribing appropriate adaptations to wheelchairs to allow for use of tie-down systems
• Developing organizational, memory, and money management skills to facilitate timetable reading and payment of fares

Productive Activity

Paid or Volunteer Work

Participation in productive activity via paid or volunteer work can be important to individuals for a number of reasons. It might allow them to be self-sufficient financially; acquire a sense of self-esteem, social status, and group membership; and add structure and routine to their daily lives.11 Issues surrounding the employment of people with disabilities are discussed in more detail in another chapter of this text. In general, however, to optimize the achievement of functional independence in this area it will require consideration of:

• The physical and cognitive requirements of work tasks, and their match with the individual’s current skills
• The physical access to the work environment and necessary work equipment
• The individual’s ability to participate in necessary work-related behaviors, for example, timely and reliable attendance, concentration and application to task, and establishment of appropriate workplace relationships (see Chapter 35)

Household Management

Household management is an important aspect of maintaining daily routines and for many adults represents their primary source of productive activity. Assisting an individual to gain functional independence in this area can promote a sense of role identity lost because of illness or injury. Restoring the motor skills required for home maintenance tasks might not be possible or sufficient to ensure full independence in many cases. Integral to successful household management is the combination of motor proficiency (particularly upper limb proficiency) with planning, organization, safety awareness, and money management skills.6,11 Most commonly, a compensatory approach is required. This generally takes two forms. First, the physical setup of the home has to be considered in relation to whether it supports access of the individual to all areas of the home to perform cleaning, laundry, yard maintenance, and meal preparation tasks. Second, tasks performed have to be analyzed and modified as necessary to conserve energy and allow independent completion despite physical or cognitive limitations.6 Clear and open communication with the individual is essential in this process to identify priority household tasks for completion because home routines are highly individualized and value based. Commonly used adaptations and modifications that enhance independent household management include the following:

• Home modifications and redesign: Extensive modifications might be required to make a house accessible for an individual using a wheelchair. Installing ramps, widening hallways, lowering counter tops, and removing under-sink cabinetry (Figure 26-14) are examples of modifications that might be required to maximize an individual’s independence.
• Wheeled carts: These can be used extensively throughout the home to minimize the energy and strength required in lifting heavy objects (e.g., a basket of laundry, plates and utensils).
• Nonslip matting and suction cups: These can be used to help stabilize pots, jars, or dishes during meal preparation or cleaning.
• Adapted utensils: These can provide for easier completion of tasks requiring cutting, mixing, and reaching.
• Sitting as a preferred position: This position allows for an individual who experiences endurance or mobility difficulties to complete tasks more efficiently.
• Electric appliances: Food processors and electric mixers reduce the labor intensity required for many meal preparation tasks.
• Reorganization of household items: Task efficiency can often be gained through reorganizing the placement and storage of essential equipment. For example, placing hangers near a dryer so that clothes can be hung immediately can reduce the need for ironing; reducing overall clutter minimizes dusting and the need to search for items; and removing potential obstacles such as mats and potted plants makes movement through the living space easier.
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FIGURE 26-14 A house with a wheelchair-accessible cooking area, so that a child with physical limitations can participate in cooking activities such as mixing ingredients for a cake.

Play and School

For a child, participating in typical play experiences and attending a formal education program constitute productive activity. Children with disabilities require access to both of these experiences to ensure that there is an opportunity for socialization, learning, and continued development of their skills. Within most public school settings, inclusion of children with disabilities into an individualized educational program is required by public law (in the United States, the Individuals with Disabilities Education Act, Public Law 92-142). The rehabilitation team needs to work with local schools and childcare settings to establish an environment in which children can play and learn in a relatively unrestricted manner. Issues that require consideration when planning for the integration of a child with disabilities into a play or educational setting include the following:

• Can the child physically enter and exit and mobilize within the school or play environment?
• Do any of the facilities and equipment (e.g., restrooms, computers, desks, water fountain, and playground equipment) need to be modified or adapted to allow usage by the child?
• Do the play or educational experiences offer the “just right” challenge to the child, such that learning and development are enhanced?

Treatment approaches used to facilitate independent participation by children in play or educational programs use a combination of restorative and compensatory approaches. When possible, a child’s motor and cognitive abilities will be improved through a therapy program addressing specific skills required for meaningful participation, such as fine motor skills for handwriting and computer access, attention and concentration skills, socialization skills, and self-toileting. Compensatory approaches are often required when a disability is significant. Commonly used adaptations and modifications to facilitate typical play and educational experiences include the following:

• Positioning devices: These devices can range from foam wedges to customized seating systems that allow the child to participate in activities with improved stability and support (Figure 26-15).
• Environmental modifications: Ramps, widened hallways, and modified playground equipment can enhance access to playground and school facilities for a child in a wheelchair (Figure 26-16).
• Equipment modifications: Adapted pencils, computer mice and keyboards, adjustable-height tables, and adapted playground equipment can all assist a child with a disability to participate in typical play and educational activities (Figures 26-17 through 26-19).
• Curriculum redesign and accommodations: Depending on the child’s skills and abilities, adaptations to the educational curriculum might need to be made to enhance independent performance. This could be as simple as allowing a child more time to complete a writing task when weakness or dexterity is a difficulty, or changing the sequence of activities completed in the day so that more demanding tasks are performed early on to allow for the likelihood of increased fatigue. A child might need an individualized curriculum plan including reduced content and modified expectations to achieve educational success.
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FIGURE 26-15 Positioning devices. (A) Customized seating system. (B) Foam wedges.

(Courtesy The Children’s Hospital, Aurora, CO.)

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FIGURE 26-16 Playground equipment accessible by wheelchair, with platforms and ramps.

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FIGURE 26-17 An adapted swing. The movement of the swing is achieved by pushing or pulling on the handles, using the arms.

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FIGURE 26-18 A built-up handle made of setting putty conformed to a person’s grasp to facilitate functional tripod grasp for writing. Modifications can vary from application of foam to commercially available plastic grips.

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FIGURE 26-19 Adaptive equipment can include a Dynavox, PowerLink, and 7-Level Communication Builder (A) and various switches to improve patient access to activities and nurse call systems (B).

(A and B Courtesy The Children’s Hospital, Aurora, Colo.)

Leisure

Time spent in leisure and recreation is considered essential to an individual’s psychologic well-being.5 Leisure activity is activity participated in for its own sake and where enjoyment is the primary goal. The authors believe that leisure is important for self-expression, creativity, relaxation, belongingness, and experience of novelty.27 Meaningful participation in leisure activities by people with disabilities is highly motivating and can also facilitate the achievement of independence in other areas such as community integration, self-maintenance, mobility, and organizational and problem-solving skills. The rehabilitation team should consider leisure as both a means and an end in terms of the achievement of functional independence.24 Leisure can take a number of forms and can include quiet recreational activities such as hobbies or crafts or more active recreation such as sports and travel. Many organizations now exist to facilitate the inclusion of people with disabilities into recreational activities. For example, some communities have established programs specifically designed for people with physical and cognitive disabilities that are run within community recreation centers. Various advocacy groups and foundations sponsor camping and sports programs for individuals with brain injuries, burns, or chronic conditions. In recent years, more attention has been focused on competitive sports participation by people with disabilities. This is available at local, national, and international levels, culminating in events such as the Paralympics. As in other areas of functional independence, consideration must be given to the interests, priorities, and available resources of individuals and their families; individuals’ specific motor and cognitive skills and limitations; and the potential for adaptation of the activity before planning interventions relating to leisure participation. Figures 26-20 through 26-24 show examples of adaptations made to common leisure pursuits, enabling people with disabilities to experience enjoyment and achievement.

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FIGURE 26-20 Outrigger skis are used for skiing by a person who has difficulty shifting weight, maintaining upright stance, and maintaining their balance. A person must be able to stand independently but may have difficulty with coordination.

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FIGURE 26-21 A bicycle adapted for a person with a spinal cord injury is propelled with the upper limbs. Bars and straps support the lower limbs while providing adequate seating to maintain sitting balance.

(Courtesy Steve Ackerman, American Wheelsports, Fort Collins, Colo.)

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FIGURE 26-22 A tricycle adapted with footplates and straps, trunk support, and an extended seat for children with limited balance, coordination, and strength.

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FIGURE 26-23 Many sports, such as tennis, basketball, and cycling, can be adapted for participation by a person in a wheelchair.

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FIGURE 26-24 Therapeutic horseback riding can be used as an alternative to traditional therapy programs and as a recreational activity. Saddles can be adapted for those individuals with decreased strength in the trunk and lower limbs.

Conclusion

Assisting an individual to achieve optimal functional independence should be the goal of all medical rehabilitation programs. The benefits to individuals and their families or caregivers are clear. For the individual, an increased sense of personal satisfaction, self-worth, and self-actualization are all coupled with decreased physical ailments and increased vitality. For caregivers, the physical and emotional burden of care associated with physical disability can be reduced or minimized. For rehabilitation programs, a focus on improving outcomes related to functional independence translates into an increased likelihood of reimbursement and enhanced patient satisfaction. A number of possible approaches can be used to facilitate functional independence in persons with disabilities that are typically either restorative or compensatory in focus. As further advances in technology are made, opportunities for individuals with significant levels of disability will emerge to allow them to participate fully in their life Situations.

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