Multiple Sclerosis and Epilepsy: Vocational Aspects and the Best Rehabilitation Practices.

As chronic and episodic neurological disorders, epilepsy and multiple sclerosis (MS) both present considerable rehabilitation challenges. The lack of predictability associated with both disorders complicates a traditional, linear approach to vocational rehabilitation. A review of the literature suggests that unemployment and underemployment are significant problems for people with MS as well as for people with epilepsy (Fraser, Glazer, & Simcoe, 1992; Hall, Rohaly, & Schneider, 1992; Long, Glueckauf, & Rasmussen, 1998). At the same time, a traditional state vocational rehabilitation (VR) model does not appear to be well equipped to deal with the specific problems encountered by people with these disabilities. The purpose of this paper is to review these problems and the rehabilitation practices that have proved effective in the vocational rehabilitation of people with MS and epilepsy. After discussing each of the disabilities separately, the following topics are addressed: (a) the current employment and rehabilitation situation, (b) vocational assessment, (c) job development, with special attention to the role of the Americans with Disabilities Act, and (d) job retention.

Multiple Sclerosis

Multiple sclerosis is the most common acquired neurological disease in young adults in North America and Europe (Livneh & Antonak, 1997). It is a chronic degenerative disease characterized by destruction of the myelin sheath. Myelin is the fatty tissue that insulates nerve fibers in the brain and the spinal cord. The effect of this destruction is to slow the electrical impulses that pass along the nerve tracts. As patches of the myelin sheath are destroyed, they are replaced with scar tissue (i.e., scleroses, or lesions) which further interrupts the conduction of nerve impulses (Rumrill, Kaleta, & Battersby, 1996).

The functional limitations which may result from MS are variable and depend upon the site in the brain or spinal cord in which the lesions occur. Symptoms are also variable and may include numbness in the extremities, impaired mobility, paralysis, hand tremors, spasticity, fatigue, vertigo, sexual problems, problems with bladder control, and visual impairments (Livneh & Antonak, 1997). Multiple sclerosis most commonly affects people between the ages of 20 and 40 years and has a prevalence in the US ranging from 30 to 100 per 100,000 persons (Falvo, 1991; Livneh & Antonak, 1997).

Due to a lack of knowledge about MS, rehabilitation professionals may approach all individuals with this disease as similar (Gordon, Lewis, & Wong, 1994). It is important to understand, however, that MS may affect different people very differently. There are four general patterns or courses MS may potentially follow. The benign course, experienced by approximately 20% of people diagnosed with MS, is characterized by sudden onset, one or two mild attacks, near complete remission, and no long-term disability (Hall et al., 1992). The exacerbating-remitting course affects 20 to 30% of people with MS. This course is characterized by sudden onset, relapses and remissions, usually resulting in no permanent damage or restrictions in daily activities. Remissions are often lengthy (Hall et al., 1992). In the remitting-progressive form, experienced by 40% of people with MS, the exacerbating-remitting course is seen for the initial five years or more, and then a more progressive or chronic course is experienced (Hall et al., 1992). Finally, 10 to 20% of people with MS experience the progressive course which has a slow onset and in which slow worsening without remission is experienced (Hall et al., 1992). There is, as yet, no cure for multiple sclerosis, but treatments are available that offer symptomatic relief (Falvo, 1991; Livneh & Antonak, 1997).

Epilepsy

Epilepsy is the most common of the chronic neurological conditions (Livneh & Antonak, 1997). Epilepsy may develop from a wide variety of causes. A definitive etiology, or cause, has been identified in only about one third of all newly diagnosed cases of epilepsy (Hauser, 1997). The reported prevalence of active epilepsy in the US is about 50 per 1000 persons (Thompson & Trimble, 1996) and the reported incidence is about 2% of the US population (Livneh & Antonak, 1997).

The word epilepsy is a generic term, synonymous with convulsive disorder or seizure disorder. All the terms refer to a wide variety of seizure conditions rather than a single condition (Engel & Pedley, 1997; Fraser et al., 1992). A seizure involves a disruption of the normal electrical activity of the brain in which neurons become unstable and fire in an abnormally rapid manner. This excessive electrical discharge results in a seizure which may be confined to one area of the brain (partial seizure) or may occur throughout the brain in entirety (generalized seizure; Fraser et al., 1992). "Depending on the patient, seizures may occur frequently or infrequently, only at night or after awakening, in a cyclic pattern, suggesting hormonal influences, only with highly specific triggers, in many other permutations, and, most commonly, without any apparent predictability" (Engel & Pedley, 1997, p. 4).

The specific functional, cognitive, affective, and behavioral symptoms seen in epilepsy depend upon the location and localization or spread in the brain of the seizures (Dreifuss, 1975). As a result, "some seizures impair brain functioning slightly, while others result in a complete cessation of normal activities" (Fraser et al., 1992, p. 439). Because epilepsy is a term for a seizure disorder with a multitude of potential causes, depending on the individual case, it does not make sense to discuss cure as much as seizure control, which is achieved for 60 to 70% of those with epilepsy (Fraser et al., 1992).

Current Employment and Rehabilitation Situation

Many people with MS and epilepsy continue to experience problems with unemployment and underemployment. Calling the role of worker or employee "an all too frequent casualty of MS," Rumrill, Roessler, and Cook (1998, p. 242) reported that while the vast majority of people with MS have a work history prior to diagnosis and that most were working at the time of diagnosis, only about 25% of Americans with MS are currently employed. In the US labor market, the unemployment rate among people with epilepsy who are maintaining an active job search is reported to be 13 to 25%, and even higher for people with severe seizures (Thorbecke & Fraser, 1997).

There are a number of national advocacy groups for people with epilepsy and people with MS which provide, among other services, employment assistance. The efforts of these groups to raise the level of employment of persons with these disabilities have been very successful (Sumner, 1996; Thorbecke & Fraser, 1997). At the same time, the placement rates of state VR agencies of people with epilepsy or MS appear to fall far below those of the specialized employment programs (Fraser, Trejo, & Blanchard, 1984; Rumrill, Steffen, Kaleta, & Holman, 1996).

Because the symptoms of MS at a given point in time are often not "severe" enough to warrant eligibility in the state VR programs, people with MS do not use these services to the same extent as people with other disabilities (Rumrill, Steffen, et al., 1996, p. 168). In a recent qualitative analysis of the barriers to employment for people with MS (O'Day, 1998) less than half of the participants reported hearing of the state vocational rehabilitation system. Despite the federal regulation that referral be made at the time of application for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), only three of 16 such applicants received a referral (O'Day, 1998). For the participants who applied for services with the state vocational rehabilitation departments, difficulty with eligibility and inconsistency of services were highlighted (O'Day, 1998).

Similarly, in the case of employment placement with people with epilepsy, Fraser, Trejo, and Blanchard (1984) found the placement rate among seven state VR agencies to range from 9-21% of applicants with epilepsy, except for one state which made special efforts to place people with epilepsy. In this case the placement rate was 44%.

Clearly, there is a need for specialized training, information, and resources for state rehabilitation counselors who may work with people with epilepsy or MS (Fraser et al., 1984; Gordon et al., 1994; Seidenberg & Clemmons, 1997). The employment-related problems experienced by people with MS or epilepsy include difficulty in both attaining and maintaining work. Rehabilitation professionals must, therefore, be prepared to assist people with these disabilities at each stage of the rehabilitation process, including assessment, placement, and job retention. The problems specific to each of these areas and the best rehabilitation practices are presented in the remainder of this paper.

Vocational Assessment

There are numerous sources available regarding the appropriate vocational assessment practices, instruments, and considerations to bear in mind when working with either people with MS (see e.g., Roessler, 1996: Gordon et al., 1994) or people with epilepsy (see, e.g., Thorbecke & Fraser, 1997; Seidenberg & Clemmons, 1997). These sources are synthesized into an overall assessment framework for working with people with MS or epilepsy.

Ecological Assessment

"Vocational assessment is used by rehabilitation and other counseling professionals to describe, explain, and predict consumers' psychological, social, and vocational behavior, as well as to identify specific vocational goals for the consumer" (Parker & Schaller, 1996, p. 134). Multiple sclerosis and epilepsy are disabilities that represent a wide range of severity in terms of disability and functional capacity or limitation. Utilizing an individualized approach to vocational assessment is therefore particularly important in working with people with these disabilities. However, a number of rehabilitation researchers (Parker & Schaller, 1996; Parker, Szymanski, & Hanley-Maxwell, 1989; Szymanski, Dunn, & Parker, 1989) have pointed out that traditional assessment approaches are not amenable to the client's need for an individualized assessment. Therefore, an ecological assessment model may be the most appropriate assessment approach.

Ecological assessment involves gathering and synthesizing information concerning functioning across a wide range of domains, including, for example, cognitive, vocational, and social. It is optimal to gather information from a variety of sources (Parker & Schaller, 1996). These sources may include, when appropriate, family members, friends, or members of a team of multidisciplinary professionals. Ecological assessment involves the assessment of the individual, the environment, and the congruence between the individual and the environment (Parker & Schaller, 1996). A comprehensive assessment will include assessment of individual factors, functional capacities, and cognitive, psychosocial, and environmental factors.

Assessment of Individual Factors. An important part of vocational assessment, whether or not a vocational goal is established in the client's mind, is the assessment of a number of general factors including the person's vocational interests, perceived and demonstrated skills and strengths, and related vocational and avocational experiences (Parker & Schaller, 1996). Muthard (1975) suggested that information about significant work experiences, how previous jobs were found, why the individual left previous jobs, the satisfaction of the individual with the work, and the quality of co-worker and supervisor relationships should be sought. A thorough examination of the individual's avocational and educational activities should also be conducted.

Functional Capacities. Given the ranges of severity seen in epilepsy and MS, an individualized assessment of physical and cognitive functioning is necessary. People with MS may experience a number of physical conditions, including fatigue, spasticity, tremor, visual impairments, bowel and bladder dysfunction, weakness of the extremities, and problems with balance, walking or standing, among others (Hall et al., 1992; Rumrill, Kaleta et al., 1996), which could potentially disrupt work function. To assess the impact of such problems in a work environment or a person's daily life, situational assessments are especially helpful.

Clients with epilepsy generally have no physical limitations unless the seizures are due to underlying trauma (Fraser et al., 1992). If seizures are not controlled, seizure-related information is important in assessing potential employment, accommodations, and functioning in non-work roles. The following representative seizure-related variables have been determined to be of primary importance in terms of employment (Salomone, 1996; Thorbecke & Fraser, 1997): What is the frequency of the seizures? Is there an aura or warning that allows the individual to prepare for a seizure? What is the state of consciousness during a seizure? What is the typical behavior during a seizure? How does the person behave after the seizure (e.g., confusion, speech disturbance, sleep)? How long does it take the person to resume usual activity after a seizure? Do seizures occur at a certain time (e.g., during sleep, after awakening), or are they unpredictable? Have seizure triggers been observed? The answers to these questions will be helpful in planning appropriate job placements or modifications.

Cognitive Factors. Cognitive and intellectual dysfunction is prevalent in the case of both epilepsy and MS (Bennett, 1992; Peyser, Rao, LaRocca, & Kaplan, 1990; Rumrill, Kaleta et al., 1996; Thompson & Trimble, 1996). Some of the cognitive problems observed in people with both disabilities include memory problems, language and speech problems, attention and concentration impairment, perceptual-motor skills, and executive functioning problems, such as impairment in planning, abstract reasoning, sequential thinking, and conceptualization (Bennett, 1992; Hall et al., 1992; Rumrill, Kaleta et al., 1996; Thompson & Trimble, 1996).

Cognitive dysfunction has a significant impact on employment status (Rumrill, 1996) and counselors may want to consider having a cognitive assessment performed in the absence of previous assessment. This is especially true if a consideration of the following factors suggests that a cognitive assessment is warranted: need for a baseline level of functioning, poor work performance or impaired performance in avocational life areas, a history of job losses, pronounced emotional difficulties, interpersonal adjustment or relationship problems, failure to meet expectations of others, need to assess competence for various levels of independent living (Sanford & Petajan, 1990; Thorbecke & Fraser, 1997).

Psychosocial Factors. A number of psychosocial reactions have been identified as commonly expressed, commonly experienced, or both, by people with MS and epilepsy. While certain reactions may be common, they are by no means universal (Livneh & Antonak, 1997). Commonly expressed reactions to both disabilities include depression, anxiety, anger, denial, increased suicide risk, decreased self-esteem, lowered perceptions of social support, and a sense of loss of control, or external locus of control, among many others (Blumer & Altshuler, 1997; Cummings, 1994; Hermann, Whitman, & Anton, 1992; Knutson, 1981; Livneh & Antonak, 1997). A review of the literature suggests that the most commonly expressed reactions are depression and anxiety.

Counselors should be aware of the potentially powerful impact of psychosocial reactions to impinge upon all aspects of vocational rehabilitation. The success of rehabilitation efforts will depend to a great extent on successful intervention in this area, including referrals where necessary to the appropriate medical and mental health professionals. Researchers writing on both disabilities have expressed the importance of involving the family in assessment and intervention where psychosocial aspects are involved (Long et al., 1998; Fraser & Clemmons, 1983).

Environmental Factors. Counselors should also assess the multiple physical environments in which the client lives, works, pursues leisure activities, and so on, as well as the environmental factors that affect vocationally-related decision making. For example, counselors should evaluate the financial considerations involved in the client's working, such as the amount of financial support the client receives from other sources, full time or part-time status, and the potential loss of benefits that could occur as a result of employment (Fraser et al., 1992; Scheinberg, Brooks, Black, & Weisman, 1989). The ability to drive or to utilize public transportation is also an important consideration (Fraser et al., 1992). Another consideration might include the amount of social or familial support the client is receiving in his or her vocational and other pursuits.

Employment Development and Retention

Career interventions may have lifetime implications; they should therefore be carefully guided (Szymanski, Hershenson, Ettinger, & Enright, 1996) and grounded in the client's goals and aspirations. Rehabilitation counselors will work with people with MS or epilepsy who are at various stages of their careers. A range of knowledge and skill is thus required for effective service. In this section, practices associated with successful job development with people with MS and epilepsy are discussed along with the relevant aspects of the Americans with Disabilities Act.

Job Development

A common feature of programs with demonstrated effectiveness in working with people with MS and epilepsy is the empowering of the individual with the disability to take the lead in the job search. This empowerment includes involving the person in the development of vocational goals; educating the person about the job seeking process; and developing the person's job seeking skills, such as resume preparation, interviewing skills, and understanding the job market (Fraser, 1980; Rumrill, 1996; Rumrill, Steffen et al., 1996; Thorbecke & Fraser, 1997). Group processes are commonly used, including job clubs and group discussions of disability related impacts on the job search (Fraser, 1980; Rumrill, Steffen et al., 1996).

The Americans with Disabilities Act

Individuals with neurological impairments may have marked limitations in their ability to enter or re-enter the workforce after the onset of their impairments. Neurological impairments present a combination of physical and cognitive impairments that may pose particular difficulties in applying the regulations of the ADA (Sachs & Redd, 1993). The ADA ensures that if an individual is unable to perform a job due to a disability, but is otherwise qualified, the employer must provide reasonable accommodations by making modifications in the job that enable the person to perform the job. Such accommodations may be avoided on the part of the employer if the accommodations would pose undue hardship to the business or employer (Sachs & Redd, 1993).

Reasonable accommodations may include adaptive equipment, job restructuring, or job modification, or may be directed toward enhancing physical access and resource access (Brodwin, Parker, & DeLaGarza, 1996). Accommodations may involve minimal financial and organizational costs and, in fact, often cost nothing. An example may be moving an employee's desk closer to the restroom or exit to reduce walking (Gordon et al., 1994). Additional accommodations that were found to be work-enhancing in a study of persons with MS were: self-pacing, organized activities, adjusted work schedule, intermittent rest periods, conveniently arranged equipment, and planning work ahead of time (Gulick, Yam, & Touw, 1989).

In the case of both epilepsy and MS, the disability is often not immediately obvious from outward signs. As a result, the question of whether or not to disclose disability status to employers at the time of application often arises. This important decision is one that must be made on an individual basis after the consideration of a number of factors. In the case of people with epilepsy, certain safety and practical concerns must be taken into account. In the case of people with MS, certain accommodations may be necessary or become necessary in the future. Job developers and their clients with MS and epilepsy should be aware of and be able to discuss with employers the pertinent implications of the Americans with Disabilities Act, as well as having suggestions for possible accommodations.

Job seekers with seizure conditions have a responsibility to consider various work-related factors, including the type and frequency of seizure they have, and the risk associated with specific job duties (Fraser et al., 1992). For individuals with no significant safety issues in the workplace, disclosure may not be an important issue either on the application or in the interview (Fraser et al., 1992). If the seizure disorder does not affect job performance, the job seeker may choose to reveal the disability immediately after the employer has made a decision to hire the person (Fraser et al., 1992).

For people with MS, the decision to disclose or not may be more complex as, unlike the generally stable nature of seizures, the symptoms and functional limitations associated with MS may worsen over time. There is no legal obligation to disclose disability status in the interview. On the other hand, there is evidence that early disclosure and requests for accommodations may be the best strategies for employees (Kulha, 1996).

There is no correct answer to this difficult problem. The role of the rehabilitation counselor is to prepare the individual to make an informed decision. Should the individual choose to disclose his or her condition, the counselor should prepare the client to discuss his or her condition clearly, positively, succinctly, in lay terms, and in relationship to the job.

Employment Retention

Because many people diagnosed with MS are employed at the time of diagnosis (LaRocca & Hall, 1990) and because periods of unemployment are often a detriment to later employment for people with epilepsy (Thompson & Oxley, 1993), retention is briefly discussed here as an employment intervention. Loss of work or lack of the ability to work due to chronic illness can have a significant impact on life satisfaction. When rehabilitation professionals are able to intervene before employment is terminated or to assist in attaining employment, these actions are likely to enhance life satisfaction by increasing social contact, self-efficacy, and financial security, and indirectly by, for example, reducing tension in familial relationships due to financial strain (Roessler & Rumrill, 1998).

Roessler and Rumrill (1995) have identified a number of factors that influence job retention in the case of people with MS which may also be directly applied to people with epilepsy. These include environmental factors, such as an understanding employer, good social contacts with coworkers and employers, and access to adaptable work settings and modes of transportation. Flexibility on the part of the employer (Roessler & Rumrill, 1995) and creativity in accommodations on the part of the client and rehabilitation counselor are also keys to job maintenance. Rehabilitation counselors may play a role in assisting their clients to maintain employment by being aware of these factors, by planning for and helping to identify potential problems in the work environment, and by counseling and educating clients to be competent at discussing their needs and rights in a manner which promotes employer and co-worker cooperation.

Conclusion

People with epilepsy or MS often experience a number of similar challenges and problems in their experience of their respective disabilities. Those challenges and problems related to vocational rehabilitation were discussed in this paper. Despite the focus here on shared attributes, as with all disabilities, the fundamentally important concept is that each individual brings to the rehabilitation process a unique set of personal and disability-related characteristics. Thus, while a number of challenges to vocational rehabilitation may be seen to be shared by people with these episodic neurological conditions, of more importance is what is not shared, but belongs to the individual alone.

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Malachy Bishop Molly K. Tschopp Michael Mulvihill

University of Wisconsin-Madison 

Malachy Bishop, M.S., CRC, Rehabilitation Psychology Department, University of Wisconsin-Madison, 432 N. Murray St., Madison, WI 53706.