Some research is available that is specific to the vocational interests of individuals with epilepsy. Schultz and Thorbecke,⁶⁷ in a study of 116 people with epilepsy, including young adults, being assessed vocationally, found that initially 47% desired training for an occupation in the field of social sciences, for example, nurse or educator. As a result of the assessment, however, no one was recommended for training in this area. Fraser et al.³⁴ studied the vocational interests of 47 male and 24 female patients with epilepsy attending the University of Washington Regional Epilepsy Center using primarily the six major occupational scales and three special scales of the Strong-Campell Interest Inventory. Male patients with major motor seizures had lower Academic Orientation and Investigative scores than male normal controls (p <.01), and male patients with early-onset epilepsy had lower Investigative scores than normal controls (p <.01). Female vocational interests were not significantly different from those of the normal control group. The authors concluded that in line with previous research, male patients appear to be more greatly affected developmentally by epilepsy and that disability alone does not influence vocational orientation, but rather severity of the disability and age at disablement. The authors suggest supportive counseling, social experiences, and involvement in “hands on” and exploratory types of tasks for young men in the home and within the academic setting. Presently, there remains a need for further and more comprehensive studies of this type. It should be noted that work values or reinforcers (“things about the job”) may be more important than interests in actual job choice. In one study,²⁹ securing a job close to home was significantly more important (p <.01) for those who found work than the unemployed. If this need couldn’t be met, job outcome was less successful.

Studies of aptitudes or abilities present a number of other interesting issues. Clemmons¹³ used the General Aptitude Test Battery (GATB), which has been in use throughout state employment and rehabilitation services in the United States. Fifty patients at the University of Washington Epilepsy Center were tested. Test scores did not discriminate between the successfully employed and unemployed. Furthermore, when the mean scores of the employed group were compared with the published GATB norms, all scores of the employed people with epilepsy were found to be significantly lower. The author emphasized that factors such as social support and appropriateness and psychosocial status might be more crucial job access variables than aptitudes.¹³ Specialized vocational assistance and placement may also compensate for lesser abilities in highly motivated job seekers with epilepsy.

In a study by Clemmons and Dodrill,¹⁶ the vocational outcome of 40 high school students with epilepsy 4.5 years after graduation was assessed. When looking for factors discriminating the unemployed from the employed, no influence of sex, age, or time since high school graduation could be detected. However, mean scores on the Wechsler Adult Intelligence Scale (WAIS) and the Halstead Impairment Index were significantly different across the groups (p <.01), with the strongest discriminator being the Aphasia Test (p <.001). The unemployed did significantly more poorly on these tests than those who were working. The working and nonworking groups were easily distinguished on the basis of neuropsychological and intelligence measures. The authors suggest identifying those at risk for unemployment based on these variables before they enter the workforce and offering them specialized and intensive vocational services.

Scharfenstein and Thorbecke,⁶⁵ while performing a secondary analysis of vocational rehabilitation by the Department of Vocational Rehabilitation of the Berlin Labor Exchange, found severe epilepsy-related job restrictions in the records (Table 1). Only 11% of the records indicated the type of seizure and only 19% the seizure frequency. Such restrictions are in sharp contrast to the consistently reported low accident rates of people with epilepsy as noted previously. This holds true for persons known to the employer as having the disability and also for persons who do not disclose epilepsy.⁷⁷ Therefore, the development of approaches to assess the work-related risks of persons with epilepsy on an individual basis should be of high priority.

In addition to some of the issues described above, there appear to be a number of variables affecting social and interpersonal
behavior and competency for youth and adults coming into epilepsy rehabilitation programs. Work at the University of Washington Epilepsy Center³⁰ indicates that through several years (1988–1990) during which participants entered vocational services, additional disabilities were prevalent in 89% of this population. Mild to moderate neuropsychological impairment was salient; 37% to 54% (depending on the study group) had a specific documented brain insult, and 26% to 40% had an additional psychiatric diagnosis. The percentages of those with physical disability were minor. Wada et al. in a series of 278 patients in the unemployed found a significantly higher proportion with neuropsychiatric complications.⁸²

Earlier work by Goldin et al.³⁸ suggests that children and adolescents with additional disabilities are more socially isolated and less involved in extracurricular and school social activities. Consequently, they have not had the exposure to social organizational activities through which social skills and competencies are developed. It would appear that youths with active seizures have increased dependency and are less involved in normal risk-taking and social activities, with a subgroup further restricted by additional emotional and cognitive limitations.

A lack of social skills development can be exacerbated by frequent seizure activity and side effects of drugs. As individuals with a seizure disorder mature, emotional and behavioral difficulties can become more pronounced as they react to isolation and failure in the social environment. Curly et al.¹⁷ restricted their study of risk factors for psychosocial maladjustment to a sample of boys (n = 60) because they observed that boys seemed to have more adjustment difficulties than girls.⁷⁴ This has also been the experience of Fraser et al.³⁴ In the study by Curly et al., neuropsychological impairment, divisive parenting styles, and number of lifetime seizures accounted for approximately 50% of the variance related to the boys’ behavioral disturbances—neuropsychologic impairment for 28% and the other two variables for 13%. Young boys in particular may be a subgroup having greater adjustment difficulty because of lack of support and greater expectations for performance within sports and the vocational areas.

Freeman and Gayle in 1978³⁶ initiated in Baltimore a school-based program to facilitate transition from school to employment. During the first 3 years of the program, 333 students with epilepsy were identified, with a mean age of 16 years (range, 12–21 years). The program provided counseling, epilepsy education, and work experience. Students in a first step participated in vocational training courses within their schools and then were offered job opportunities. When the employment outcome was evaluated 2 years after graduation, only 18% of the participating adolescents with epilepsy but 31% of the students without disabilities were identified as program dropouts (i.e., not holding a job or being in school or training).

The key factor to the success of this project was that it enabled the school system personnel to meet the requirements of the law (Public Law 94-142) in developing individualized programs for students with disabilities. In other words, the program assisted overworked and underfunded school personnel to complete required work activity.³⁵ It was “housed within the school system.” Other projects, in Cleveland⁸⁰ and Seattle,¹⁴ have encountered more significant difficulties in securing the cooperation of school personnel in obtaining access to youths with epilepsy for enrollment in school-to-work transition programs.

Similar programs were offered in the United Kingdom and in the Irish Republic. A work preparation course by the British Epilepsy Association⁶ is conducted during 4 to 6 weeks and offers, in addition to epilepsy education, a comprehensive program of counseling, industrial visits, and work experience. Carroll¹⁰ reported on a 6-month training program from Ireland, during which the trainees were assisted in developing social and communication skills and allowed to sample basic activities in art, drama, home management, and woodworking. On completion, 60% of the trainees with epilepsy versus 72% of the trainees without epilepsy were placed. One year later, 40% of the participants with epilepsy still were employed. When interviewed, participants with epilepsy found the program helpful in increasing their self-confidence and social skills.

At the Heemstede Center in Holland,¹⁸ group training is provided in the following areas, considered vital to good vocational preparation: (a) Coping with seizures in work situations, (b) educating colleagues at work about epilepsy, (c) coping with colleagues’ attitudes, and (d) interviewing techniques (role playing). As part of the group training, participants
are given work experience during which they practice what has been learned. Similarly, in Germany, work preparatory courses lasting 1 or 2 years have been designed to integrate adolescents with disabilities into the general labor market as unskilled or semiskilled workers. In 2005 these courses were changed to a more open and flexible form including more practical work experience and allowing continuing with formal vocational training if the young adult shows sufficient capabilities.

Such courses are a valuable trajectory from school to employment for young adults with epilepsy for whom seizures are the main handicap. However, for those having additional physical or neuropsychological handicaps, vocational assessment and training are necessary to identify job goals more appropriately.

Around the world in rehabilitation centers or epilepsy centers, assessment units have been set up for people with disabilities, including epilepsy. Vocational assessment typically involves the use of vocational interest inventories, work values inventories, academic achievement testing, intelligence assessment, assessment of emotional and personality functioning, and (depending on job goals) assessment of visual-spatial abilities, motor speed, and dexterity. For individuals with a known or suspected brain insult or impairment of functioning, a full neuropsychological evaluation is requested. For individuals more severely compromised by epilepsy and neuropsychological impairment, a number of commercially available or devised work samples may be utilized to identify a skill that might be transferable to repetitive work (e.g., filing by numbers). If an individual has no specific work goal that can be identified, time should be spent in identifying work-related values (e.g., aspects of work—an esthetically pleasing environment, working with a mixed group of young men and women) that might draw them into some type of work. At a number of the European rehabilitation or sheltered work facilities, a wide range of work activity that can be sampled is often available.

At the University of Washington Epilepsy Center Vocational Services, job tryouts are planned as they relate to a client’s job goal, either in a volunteer setting within the hospital or within the private sector under a special 1993 U.S. Department of Labor waiver that allows unpaid work for up to 215 hours. In addition to a rehabilitation counselor monitoring this job tryout or community-based assessment, a job coach often is present to coach the client and take performance data. In the United States, sheltered work facilities are generally used for evaluation or training purposes only with the most impaired clients. Vocational assessment of people with epilepsy must always have two main components: (a) Evaluation of seizure-related restrictions and (b) Evaluation of abilities based on work samples and often neuropsychological testing (if there is a known brain insult).

A first step is always a complete description of seizure variables to assess vocational risks. Is there an aura or warning that allows the patient to prepare for a seizure? What is the state of consciousness during a seizure? Does the person with epilepsy fall, and what is the typical pattern of behavior during a seizure? How does the person behave after a seizure (e.g., confusion, disturbance of speech, paralysis of limbs, sleep)? How long does it take until the person is able to resume usual activity? At what time do seizures tend to occur (e.g., during sleep, after awakening), or are they completely unpredictable? Have seizure triggers been observed (e.g., sleep deprivation, alcohol intake, emotional issues)? Has the individual experienced other injuries secondary to a seizure incident? These are representative issues in assessing vocational concerns or risks.

A German group of epileptologists and professionals from rehabilitation centers, large companies, and state accident insurances recently suggested five categories of increasing risk that can be used to evaluate the occupational suitability of persons with epilepsy (Table 2).¹ Seizure frequency was grouped into four categories: More than one seizure per month, three to 11 per year, no more than two per year, and seizure free.

To demonstrate the practicality of these categories, vocations in electromechanics, metal work, health care, and pedagogics were assessed.¹

Such guidelines facilitate assessment of suitability for certain “dangerous” vocations on an individual basis. However, before such an evaluation is performed, a person’s drug regimen and compliance should be assessed to be sure that the person with epilepsy is grouped into the most appropriate category. In the United States, legislation requires consideration of workplace accommodations (adaptive procedures, physical modification of the job site, adaptive equipment that lowers risk). Nevertheless, there may remain situations in which the individual risk must be assessed using such a categorization.

Vocational planning traditionally has been done with the help of psychological testing. For people with epilepsy, however, such a strategy seems to be successful only if procedures are used that are sensitive to the specific abilities and deficits often found. As mentioned earlier, the GATB, which has been universally used in the United States, was not very predictive of the employment status of adolescents with epilepsy. On the other hand, neuropsychological tests predict job success at 1 year reasonably well¹⁵ for those with epilepsy and known brain impairment.

In Germany, 46 rehabilitation centers now exist for young adults—all with a vocational assessment unit. Assessment is done both by evaluation of work samples from different occupational fields and by psychological testing. Finger²⁷ did an extended study within the assessment unit of the Bethel Epilepsy Rehabilitation Center. Seventy-eight young adults (mean age, 20.25 years; standard deviation [SD], 3.52) were given an extended battery of neuropsychological tests. In addition, epilepsy variables were documented carefully. The dependent variable was recommendation of formal training as a manual worker by the professional team (master educators or social workers) after evaluation of 3 months of work samples. The result was that none of the 10 persons with a history of status epilepticus was given a recommendation for training (p <.05).

The neuropsychological test battery, comprising Picture Arrangement, Digit Symbol Test, Concentration Endurance Test/d2, Stroop (Naming of Color Dots, Naming of Color Prints), Controlled Oral Word Association Test, Name Writing Preferred Hand, Trail Making Test Part B, and Purdue Pegboard Test (Preferred Hand and Both Hands Assembly), discriminated well between the trained and untrained groups. Stepwise discriminative function analysis correctly classified 73% of the persons without and 89% of those with training recommendation (81% and 60% in the cross-validation sample). These results underscore the importance of sensorimotor coordination, motor speed of the dominant side, speed of information processing of selective stimuli, cognitive flexibility, and mastery of abstract language concepts for vocational training.

It can be seen from these results that neuropsychological tests are a very effective tool for rehabilitation planning that includes special training considerations or appropriate job accommodations. It is important, however, not to ignore other capabilities of a client (e.g., compensatory capabilities or social skills). The final goal of vocational training is not successful training but successful placement, which can require additional abilities not measured through neuropsychological tests.

Germany has a developed system of vocational training centers for young adults with disabilities. State legislation guarantees every young person with a disability vocational training that takes into account the limitations of the disability. To offer such training, 42 centers have been established, some with a focus on epilepsy and one (Bethel) specializing in assessing those with severe epilepsy or with epileptic and pseudoepileptic seizures. About 7% of the trainees in these centers (about 1,000 persons) have epilepsy.

Rehabilitation, as a rule, begins with an initial assessment by the Department of Vocational Rehabilitation (DVR). Skilled training in a rehabilitation center is proposed for about 60%, and a 3-month extended assessment for 40%. If the DVR counselor or the staff in the assessment unit concludes that it is still too early to enter formal training, a 1-year preparatory course may be offered through a rehabilitation center. During these courses, basic social and vocational skills are developed. Formal training as a rule takes 3 years. At the end, the trainees have to pass an examination in which they must solve the same tasks as an apprentice in a workshop or company elsewhere. The rate of success is high (see above), a consequence of careful selection during the different stages before formal training. Depending on the general unemployment rate between 1995 and 2003, between two-thirds and three fourths have been placed into competitive employment. There are, however, studies from the rehabilitation centers at Heidelberg and Bethel⁸³ showing that placement of young adults with epilepsy after successful training is more difficult than for trainees with other handicaps. This problem underscores the importance of specialized placement services being available.

There remains a continuing need for developing and evaluating more integrated models of school-to-work transition in which the previously discussed issues are addressed at the same time (i.e., family education and family acceptance of new roles, vocational goal setting based an individual interests and work values, neuropsychological tests, and paid work experience with on-site support and assessment). At the end of such a sequence of activity, reassessment should be done with the aim of confirming or redesigning long-range employment goals.⁶⁸