Epilepsia, 46(Suppl.1):55–56, 2005Blackwell Publishing, Inc.C© International League Against Epilepsy

Workshop II

Vocational Assessment and Intervention for People with Epilepsy

John Chaplin

Department of Paediatrics, University of Lund, Sweden

Summary: Employment restrictions have been experiencedby many people with epilepsy. In many cases, the restrictionsare unjustified and based on stigma or a stereotypical image ofthe person with epilepsy. Unjustifiable restrictions are a formof discrimination and lead to unemployment and underemploy-ment. Unfortunately, much of the research in this area has beendifficult to interpret because of differences in the definitionof “people with epilepsy” and differences in the definition of

“employment restrictions or problems.” I report on an attemptto develop a classification structure and examine some surveyresults collected by the IBE Employment Commission fromprofessionals and people with epilepsy concerning the sourcesof employment restrictions and possible methods to overcomethese restrictions. Key Words: Epilepsy—Work—Vocationalassessment—Rehabilitation.

Employment, apart from its economic value to the indi-vidual, indicates social acceptance and leads to self-worth.Employment, however, is problematic for many peoplewith epilepsy because of restrictions that are based onstigma and prejudice.

The ILAE (International League Against Epilepsy)Asian-Oceanian Declaration on Epilepsy, which was rat-ified in New Delhi on November 13, 2000, states thatepilepsy can have serious medical, psychological, so-cial, and economic consequences for people with epilepsyand their families. The Declaration goes on to state thatit is necessary for society to promote social integra-tion and eliminate discrimination against people withepilepsy in all spheres of life, especially school, work, andmarriage.

We might expect that people with active seizures aremost likely to have problems finding and keeping employ-ment (1). However, surveys of employees with epilepsyhave shown that people with active epilepsy can retainopen employment jobs and continue to be valuable em-ployees despite having epilepsy (2). A survey in Germanyrevealed that 45–69% of employees with epilepsy havewhat might be considered active epilepsy but that 70%of seizures occurred outside work (3). Research from theU.K. shows that 51% of employees with epilepsy had had

Address correspondence and reprint requests to Dr. J.E. Chaplinat Sahlgrenska Academy at Gothenburg University, Vaxthuset, QueenSilvias Children’s Hospital, 416 85 Gothenburg, Sweden. E-mail:john.chaplin@vgregion.se

at least one seizure while at work (4), and from Tunisia,that 81% of manual workers with epilepsy had had aseizure at work (5). Despite this, evidence has shown thatsickness absence rates and work performance are not ad-versely affected (4). This article explores the problem ofemployment for people with epilepsy and examine the dif-fering views of professionals and lay people concerningthe interventions required.

EMPLOYMENT PROBLEMS

Much of the research in this area is, unfortunately, diffi-cult to interpret because of differences in the definition of“people with epilepsy” and differences in the definition of“employment restrictions or problems.” To move forwardin this area, we must develop a simple classification sys-tem for employment problems. One suggestion would bethe following. In terms of the employment interventionsthat are required, four groups of people with epilepsy canbe identified:

Group 1: Those people with no problem in obtainingopen employment. These are people whose seizures aresatisfactory controlled. They have had a good educationand have a satisfactory work record. They are unlikelyto have experienced problems with stigma, although theymay possibly have experienced some underemployment.If an intervention is required outside of the normal careerservices, then some assistance with disclosure manage-ment might be useful.

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Group 2: Those people with a mild employmentproblem. These are people whose seizure control isacceptable, but they have unrealistic career goals. Theyalso may have experienced stigma problems or feel thatthey have been stigmatized. The most suitable interven-tion here would be some planned vocational assessmentand training.

Group 3: Those people with severe employment prob-lems. Here the seizure control is unsatisfactory; emotionalproblems or intellectual deficits may be present, which inturn may have led to higher levels of anxiety and depres-sion. Intervention here is more clearly in the role of em-ployment rehabilitation training and may require medicaland psychological evaluation.

Group 4: People not able to maintain a job in open em-ployment and who require sheltered or nonpaid work. Thisgroup of people has severe or frequent seizures and mayhave additional medical conditions or handicaps that com-plicate the situation. They may have missed educationalor training opportunities or been unable to take advantageof these because of cognitive deficits. Interventions hererequire specialist training facilities and supported workopportunities.

THE PROFESSIONAL’S VIEW

The IBE Employment Commission carried out a studyin 2001 into the barriers to finding employment experi-enced by people with epilepsy (6). The aims of the studywere to (a) explore professionals’ perspectives on the bar-riers to smooth transition from school to work, and (b)identify expert views on the measures required for an ef-fective response to the problem. The survey was carriedout in 13 countries across the world, and respondents whowere professionals working in the area of employmentrehabilitation were stratified by agency and target group.The respondents were asked to rank-order specific factorsas barriers to employment and to identify the type of ser-vice required. Data were collected via Internet, personalinterview, and telephone.

Completed and valid questionnaire were obtained from172 professionals in 11 countries, including 18 responsesfrom Japan. The respondents came from governmentagencies, employment training agencies, voluntary organ-isations, medical associations, employers’ networks, andindividual health providers. All agreed that employmentwas a problem for people with epilepsy. The measuresrated as highest priority to solve the problem were asfollows:

• Increasing awareness of employers• Specialized occupational guidance and career ser-

vices

• Increasing awareness of mainstream education andemployment services

• Case management/career planning

THE VIEW OF PEOPLE WITH EPILEPSY

The problem is viewed somewhat differently by peoplewith epilepsy. From a meeting held during the Epilepsyand Society Conference in 1994 (7), people with epilepsysaid that their employment problems originated from thefollowing:

• Missing schooling and training• Being rejected from work because of stigma• Not knowing whether the epilepsy will be a problem• Feeling that you are not good enough• Not getting the job of your choice

The types of interventions that they expected wouldproduce the best results were discrimination legislation,vocational assessment, and national epilepsy associationsworking more closely with employers.

CONCLUSION

We can conclude that progress is still needed in thisarea if people with epilepsy are not to be discriminatedagainst at work. People with epilepsy themselves haveindicated they believe that legislation against discrimi-nation is needed if the playing ground is to be levelled.Professionals would tend to put increasing employerawareness as the highest priority, possibly through em-ployment guidelines and initiatives. Clearly a role existsfor improved assessment procedures and specific voca-tional training for those people who in the categories ofrequiring extra help.

REFERENCES

1. McLellan DL. Epilepsy and employment. J Soc Occup Med1987;37:94–9.

2. Burden G. Social aspects of epilepsy. South Afr Med J 1974;48:971–2.

3. Elsner H, Thorbeke R. Anfallshaufigkeit und Verletzungsriskko amArbeitsplatz: Erfahrungen in metal- und textil-verarbeitendenBerufen im BBW Bethel. In: Stefan H, Canger R, Spiel G, eds.Epilepsie ‘93. Berlin: Deutsche Sektion der Internationalen Ligagegen Epilepsie, 1993:128–38.

4. Chaplin JE. A systems analysis of the employment problems of peoplewith epilepsy. PhD thesis, 1993.

5. Gouider R, Fredj M, Mrabet A, et al. Interaction between work andepilepsy in Tunisia. In: Chaplin JE, ed. Epilepsy and employment: isthere a problem? Heemstede: IBE, 1999:40–3.

6. McAnaney D. Systems, strategies and services to assist young peoplewith epilepsy. In: Chaplin JE, ed. Epilepsy and employment: is therea problem? 1999:52–5.

7. Chaplin JE. Adding employment services. Int Epilepsy News2000;4–6.

Epilepsia, Vol. 46, Suppl.1, 2005