Multiple sclerosis: strategies for rehabilitation counselors.
Vocational planning for persons with Multiple Sclerosis (MS) is complicated due to the progressive and unpredictable nature of the disorder. Counselors are often unclear about the work potential of persons with MS, and may lack sufficient knowledge concerning prognosis, course, psychological and vocational implications of the disease. To further complicate matters, physicians are often hesitant to refer persons with MS for vocational services due to their lack of understanding or knowledge about the vocational rehabilitation process (Scheinberg, Holland, LaRocca, Laitin, Bennett, & Hall, 1980).
Although prevalence rates vary, it appears that there are approximately 5 cases per 100,000 in the southern and 30 cases per 100,000 in the northern portions of the United States (Muller-Rohland, 1987). While the cause has yet to be determined, the temperate zones of the northern United States place individuals at a greater risk for MS (Gross & Sinaki, 1987). Multiple Sclerosis is an acquired neurological disease and onset typically occurs in persons between the ages of 20 and 40. While approximately 90% of persons with MS have a work history prior to diagnosis, research indicates that only about 25% of individuals with MS remain employed during the course of the disease (LaRocca & Hall, 1990).
The purpose of this article is to review the medical, psychosocial and vocational aspects of Multiple Sclerosis. In addition, recommendations are offered for rehabilitation practice and research concerning vocational planning and counseling.
Multiple Sclerosis is a demyelinating disease that effects the central nervous system. It is characterized by the destruction of the myelin sheath that insulates the nerve fiber (Muller-Rohland, 1987). Myelin covering the axons is a type of fatty insulation that promotes the rapid transmission of nerve impulses. Axons have varying degrees of myelin. If any segment of the axon loses its myelin coating, or becomes demyelinated, conduction slows. Messages sent through demyelinated axon segments arrive late producing an uncoordinated response within the neural chain which can produce specific symptoms such as paralysis and visual impairment or less specific symptoms such as fatigue (Wolf, 1984). As the myelin becomes destroyed, the patches of myelin are replaced by scar tissue which produces lesions or plaques; thus, further interruption of the conduction of nerve impulses occur (Wolf, 1984). Specific symptoms depend on the precise location of these plaques (Kraft, 1981). Consequently, no two persons with MS have the same symptoms which limits predictability about the course of the disease and makes diagnosis complicated.
Diagnosis of MS is often a long and time-consuming process as there are currently no medical tests that can clearly identify it. Although various tests such as the CT Scan, Lumbar Puncture and Magnetic Resonance Imaging are useful in the diagnostic process (Swanson, 1989), many people with MS do not show evidence of abnormality on these tests. Thus, clinical evidence of objective neurological signs must be relied upon for diagnosis (Swanson, 1989). Although it is not possible to see and identify all the lesions that are developed in the brain and spinal cord due to MS, it is possible to locate lesions by using the information gained from the person with MS in terms of experiences and symptoms (Wolf, 1984).
While it is understandable that physicians are sometimes hesitant to make a diagnosis early on due to the erratic nature of the disease, this may result in enormous apprehension and anxiety in the individual. Due to difficulty in diagnosis, persons experiencing symptoms may be left for some time uncertain and unclear about what is happening to them. Wedl (1984, p.27) indicates that it is not uncommon for initial, vague symptoms to be "mistakenly identified as resulting from alcoholism to obesity, from deep-seated psychological problems to drag usage." This may result in persons with MS developing feelings of self-blame and guilt which may linger long into the disease process. Hartings, Pavlou and Davis (1976) noted that the point of diagnosis is a critical event. The manner in which it is anticipated by the individual and handled by the physician have significant impact on the adaptation process.
Course of the Disease
Counselors, like other professionals, often lack knowledge of the history and course of disorders such as MS, which may lead to pessimism due to a general tendency to label all persons with MS as having the most severe form (Maloney, 1985). Although rehabilitation has been hampered by the general uncertainty of the course and progression of the disease (Kraft, 1981), individual courses vary dramatically. Caution must be taken that professionals do not approach all individuals with the disease as similar. Gross and Sinaki (1987) indicate that Multiple Sclerosis generally follows one of four patterns, which include: 1) the benign course - which is characterized by a pattern of long periods of remitting and stability between periods of exacerbation, 2) the relapsing-remitting course which is characterized by relapses occurring every few months to every three or four years, 3) the chronic progressive course - which is characterized by slow onset progressing without any remission, and 4) the malignant course - which is characterized by total disability and death, often within months of initial onset. Few people follow the malignant course and approximately 30 percent of individuals follow the chronic progressive course, which leaves the vast majority of individuals with more manageable disability (Gross & Sinaki, 1987). During exacerbations, the damage to the central nervous system may make it impossible to predict the extent of recovery that can be expected. Uncertainty concerning prognosis may cause individuals to leave the work force prematurely.
The difficulties that occur with MS are largely dependent on the site of lesions. Lesions of the sensory nerves will cause misperception or decreased sensitivity to pain and numbness. Motor lesions produce difficulties in movement which create problems with coordination, muscle weakness and/or walking. Individuals may experience problems with slurred speech, vision, and bladder and bowel control (Wolf, 1984). Symptoms may range from mild numbness and tingling sensations to paralysis or paresis. Spasticity is a common complaint (Kraft, 1981). Spasticity can inhibit motor control, reduce energy, and affect social and vocational responsibilities (Erickson, Lie, & Wineinger, 1989). While recent research suggests that cognitive and psychiatric problems are more common than previously considered (Peterson & Kokmen, 1989), they appear to have less impact on daily functioning than the significant physical limitations that are often present.
Although the prognosis for each individual is unpredictable, Falvo (1991) indicates that approximately two-thirds of persons with MS can continue or need only somewhat modify their normal life-style. Motor difficulties and fatigue may create a need for the use of a wheelchair or cane so work may need to be found that can accommodate both ambulatory aids and minimize the fatigue factor (Kraft, 1981). The rehabilitation professional needs to be aware of both the current and possible future limitations of the disease so that employment goals are both realistic and flexible.
Prior discussion indicates that early identification of the disease is often hindered due to difficulties in diagnosis. Many individuals endure long periods of initial uncertainty about the source of their difficulties as early symptoms are often vague and intermittent (Brooks & Matson, 1982). Consequently, once the diagnosis is made, the initial reaction for some may be relief due to apprehension during the diagnostic period (Selder & Breunig, 1991). Others may experience new anxiety and concerns (Hartings, Pavlou, & Davis, 1976). Depression may quickly follow once the ramifications of the disease become evident. Individuals who experience outward signs of disability are now forced to cope with changed body image and adjustment to the limits of chronic illness. Persons who exhibit no outward symptoms of MS face a different but equally frustrating dilemma. They must come to terms with the issue of "Am I sick?" and what is required in society once one assumes the "sick role," particularly when one appears to the outside world to be "normal" (Brooks & Matson, 1982).
Due to the instability of the disorder, individuals live with a sense of uncertainty about their future. As progression varies from person to person, individuals face enormous ambiguity in terms of their own prognosis and their lack of control over the disease (Pavlou, Johnson, Davis, & Lefebvre, 1979). Coping with Multiple Sclerosis can best be conceptualized as long-term adjustment to chronic illness. It may affect the individual's total life-style regardless of severity of symptoms as the unpredictability forces long-term attention to be directed towards the disease (Brooks & Matson, 1982). By virtue of the disease pattern, individuals must not only make an initial adjustment to disability but are required to make a continual process of readjustment due to the erratic nature of the symptoms (Matson & Brooks, 1972).
Despite the inherent physical difficulties and emotional aspects related to the diagnostic process, rehabilitation counselors should not assume that persons with MS will have psychosocial problems. Neither can professionals assume that individuals with MS will have poor self-images. Research indicates that persons with MS have been found to have positive self-esteem and reflect psychological attributes similar to the nondisabled population (Matson & Brooks, 1982; Zedlow & Pavlou, 1980). Rather, counselors may need to focus on helping individuals maintain their positive self-views throughout the course of the disease. Encouraging participation in support groups may be instrumental in this process.
Multiple Sclerosis is an adult-onset disability occurring at the time when people are just beginning or establishing themselves in their career. While the vast majority of individuals have had previous work experience and approximately 60 percent are working at the time of diagnosis, this rapidly changes following disability onset (LaRocca & Hall, 1990). The erratic and progressive nature of the disorder has created stumbling blocks within the rehabilitation process. Individuals with MS have faced difficulty planning long-term vocational goals. The inability to predict the precise course of the disease may lead to individual fear about progression (Solder & Breunig, 1991). Early departure from employment may result in persons leaving employment when early job accommodations could enhance job potential (Kornblith, LaRocca, & Baum, 1986). In addition the individual's own views towards employment due to disability, acceptance of the "sick role", and lack of knowledge of job restructuring may create re-entry problems at a later point.
Furthermore, uncertainty about progression has created employment problems as employers have often been hesitant to hire persons with MS (Rubin & Roessler, 1987). With the passage of the Americans with Disabilities Act (ADA), employers are now prohibited from making pro-employment disability inquiries. But clearly, individuals with disabilities may still face employer discrimination. The passage of ADA is a major but initial step in alleviating this problem. Legislation will not have an immediate impact on long-held employer views concerning persons with MS unless employers are educated about their work potential and types of reasonable accommodations needed to make employment successful. In addition, vocational planning which includes realistic assessment and consideration of available job alternatives are needed (Allen & Sawyer, 1983). Persons with MS may also need to be educated since many may have left previous employment positions due to increased disability and are themselves unclear on techniques which might reasonably compensate for functional limitations.
Due to the remitting-relapsing nature of the disorder, traditional assessment measures may not provide an appropriate evaluation of problem areas specific to MS. Prior studies indicate that level of functioning, particularly mobility have significant impact on employment (Kornblith et al., 1986; Kraft, Freal, Coryell, Hanan, & Chitnis, 1981). Patterns of disability typically become established within five years following diagnosis (Kraft et al., 1981). An individual's disability level at that point gives some indication of the probable course of the disease (Kraft et al., 1981). Neurological disability rating scales can provide vocational counselors with an individual's estimated prognosis.
The Kurtzke Disability Status Scale, a measure that rates level of disability based on a neurological examination, has been shown to have a direct association with employment (LaRocca et al.,1985). The scale provides information regarding severity of disability on a 1 to 10 rating scale based on mobility needs and limitations. According to LaRocca and associates (1985) each point of increase on the Kurtzke Disability Status Scale was associated with a decrease in the probability of employment for individuals in their study.
In addition, Kraft and associates (1981) have developed a chart, Multiple Sclerosis Prognostic Guidelines, to assist in tentative prognosis. This chart includes the Mobility Level Scale which assesses mobility deficits. Measures such as these can provide useful information for the rehabilitation counselor. But as level of disability is only one estimate of prognosis, additional factors need to be considered.
In conjunction with mobility issues, adjustment to disability needs to be assessed. Counseling may be needed to help the individual cope with the uncertainty and ambiguity of the disorder. More so, counselors need to be aware of extenuating factors which may lead one individual with a more severe disabling condition to be employed as opposed to another with a less severe disability. Individual coping styles and premorbid personalities are critical factors to consider (La Rocca et al., 1985). At this juncture, consultation involving an interdisciplinary team including the physician, rehabilitation counselor, vocational evaluator, and rehabilitation engineer/technologist is essential to determine the type of work that an individual can realistically do, and the types of adaptive devices and accommodations that might be useful (Scheinberg et al., 1980). Patterns of relapse need to be examined in conjunction with methods that may be utilized to maintain employment during and/or continue employment after relapses. According to Kraft, Freal, Coryell, Hanan and Chitnis (1981), assessment needs to take into account that: 1) individuals with the benign form of MS may have minimal disability and long-term planning should be considered, 2) individuals with the relapsing/remitting form may be either unable to work during specific periods of relapse and/or former functional levels may be impaired requiring re-training to accommodate increasing disability, and 3) individuals with the chronic progressive form might best benefit from assessment of rate of progression and trained for less demanding employment to prepare for possible increased disability. Thus, assessment needs to include evaluation of mobility/disability levels, psychosocial adjustment, job readiness skills, and job accommodations instrumental in promoting successful employment.
Although it is yet unclear the specifics of how MS affects employment so significantly (LaRocca & Hall, 1990), several factors related to successful rehabilitation planning warrant further consideration. First, too few individuals appear to be referred by physicians for vocational rehabilitation services in the early stages of the disease (Scheinberg, et al., 1980). Intensive vocational services while the individual is still employed would allow for retraining (Rozin, Schiff, Kahana, & Soffer, 1975) or employer made job modifications (Mitchell, 1981). In addition, early and accurate assessment of cognitive deficits would be useful in helping employers develop appropriate expectations so that individuals could maintain employment (Rao et al., 1991). Counseling should be provided either before individuals leave their jobs or at least in the early stages of the illness concerning anxiety and apprehension about continuing employment. As long-term unemployment may diminish hope for employment, early intervention may decrease concern and uncertainty allowing individuals to recognize that work is possible with appropriate planning.
Secondly, Kornblith, LaRocca, & Baum (1986) found that medical problems associated with MS were a major reason individuals indicated that they had either changed types of work, left or had been dismissed from a job. Gulick, Yam, & Touw (1989) noted that problems associated with gait and motor disturbances, fatigue, and visual problems were often reported by persons with MS as impediments to employment. The use of intermittent rest periods and/or assistive technology to alleviate energy expenditure may enhance work potential (Gulick, Yam, & Touw, 1989). Both the physical demands and environmental factors (e.g., heat often has a detrimental impact on persons with MS) of the job must be considered. More sedentary work may be advised, the number of work hours adapted due to fatigue factors, and cool work environments may also increase employability. In addition, simply making certain that the individual's office is closer to the exit or restroom could reduce the amount of walking required. Fatigue may be minimized if individuals are able to self-pace their activities and plan work when their energy level is the highest (Gulick et al., 1989). Alternative employment models which include flexible hours, part-time employment and/or shortened work weeks should be considered. Barrier-free environments are critical. Energy-saving technology (e.g., battery-powered carts) and adaptive aids can further increase work capabilities (Gulick, et al., 1989). In addition, while disability status and mobility levels are important considerations in vocational planning, desire and potential for work have often been overlooked. Early rehabilitation intervention coupled with long-term planning to prepare for possible increased disability may help to sustain motivation and desire for employment.
Implications for Rehabilitation Service
While severity of disability and unpredictability are critical factors impacting employment, persons with Multiple Sclerosis are typically solidly educated with prior work experience (LaRocca & Hall, 1990). Although the fit between the individual's physical limitations and the work environment are significant factors, the lack of employment initiatives specifically targeted for persons with MS appears to be an additional critical issue. LaRocca and Hall (1990) note that only 806 MS rehabilitants were reported by the state Vocational Rehabilitation agencies in 1984 for all 50 states, Puerto Rico and the District of Columbia; an average of little more than 15 people per state. Apparently, the system is not addressing the needs of the majority of persons with MS evidenced by the low number of participants. Outreach programs which emphasize early referral and recruitment for services would be beneficial.
Disincentives created by the Social Security Administration, including loss of health insurance and difficulties related to reinstatement for benefits, may have an impact on initial entry for services (LaRocca & Hall, 1990). As MS is a remitting/relapsing disease, individuals are rightly justified in being concerned over these issues. Individuals may be reluctant to risk losing these benefits by becoming employed, particularly due to the unstable nature of the disease (LaRocca & Hall, 1990). Health insurance is usually difficult to obtain or cost prohibitive. As persons with Multiple Sclerosis can anticipate costly medical bills due to the progressive nature of the disease, their reluctance to give up SSDI is understandable.
The MS intervention Model, funded under the Social Security Administration's Research Demonstration Program, is a project aimed at decreasing these types of disincentives. Besides teaching basic job-getting skills, essential elements provided in this program are the work incentives created (extended period of eligibility for Medicare benefits for 13 years rather than the usual 3 years with insurance coverage during that time) which protect the individual from an "abrupt and/or permanent loss of benefits" (LaRocca & Hall, 1990, p. 60). This program may provide valuable information regarding changes within the Social Security Administration requirements which might be beneficial for persons with MS.
Another alternative to the state VR system has been initiated by the local chapters of the National Multiple Sclerosis Society. A Job-Raising program, created by The Developmental Team, Inc. and funded through a Project with Industry grant from the Rehabilitation Services Administration, has been specifically targeted to address employment issues for persons with MS (LaRocca & Hall, 1990). This is basically a job-club program where participants with MS who are unemployed or looking for new employment meet on a weekly basis (usually for a 10s week period) to learn skills related to job obtainment and develop skills to enhance self-concept. As this program does not appear to be that innovative, there is no reason that state VR cannot provide similar services. But, persons with MS typically have prior work experience. Focus on the development of work skills may not best serve this population. Perhaps effort should be placed on helping employers better understand the potential of employees with MS. Timely referrals, early intervention and helping persons with MS develop appropriate vocational plans would appear to be most beneficial. Obviously, it is critical that rehabilitation professionals address these types of issues if they expect to curtail the unemployment problems created by Multiple Sclerosis.
While the potential disabling effects of MS cannot be ignored, counselors can be instrumental in developing and furthering the work capabilities of individuals with this disease. Persons with MS typically are educated, possess prior work history, and the majority of individuals have manageable disabilities. Counselors need to be aware of the course and functional limitations of MS on an individual basis. Employment possibilities can be increased if appropriate assessment measures, alternative types of employment, and accommodations and assistive devices are utilized. Also, the rehabilitation counselor must pay special attention to work disincentives. All of these issues must be addressed for satisfactory rehabilitation planning for persons with MS.
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