There has been longstanding concern in the field of epilepsy that, although progress continues to be made relative to medical management of the disability, including the development of new generations of antiepileptic medications, attention is less focused on the social adjustment of individuals with the disability. A survey of 420 individuals drawn from affiliates of the Epilepsy Foundation of America¹⁷ suggests a number of ongoing concerns, including employment, marriage and money management, and diverse health-related concerns. An earlier study by Schacter et al.¹⁶ indicates that 65% of the 150 respondents in an Epilepsy Association of Massachusetts study responded that they were psychosocially adversely affected by seizures and that this was true for even half of those with one seizure or less per year. A recent review by Theodore et al.¹⁸ regarding epilepsy in North America describes poor quality of life, a high number of depression and anxiety days, marked unemployment and underemployment, continuing perceived stigma, and higher suicide rates. Although adults with well-controlled epilepsy⁸ may not be as significantly affected as those with more active seizure conditions, this appears to be the minority of the epilepsy population.

The field of epilepsy is at a crossroads relative to addressing the psychosocial needs of people with this disability and their significant others. The impact of managed care, a lack of U.S. federal support for multidisciplinary centers, and other factors are reducing the emphasis on diverse aspects of social adjustment and needed psychosocial interventions. There is an increasing concern, however, about quality-of-life assessment related to medication or surgical intervention and diverse aspects of neuropsychological functioning, but a review of the presentations at the American Epilepsy Society’s 2005 Annual Meeting in Washington, D.C., suggests less coverage and research investment in some of the areas discussed in this section of the book. There were almost no studies relating to psychosocial intervention. This underscores that clinical service demands and financial constraints are affecting the investment in psychosocial research and demonstration projects.

Overall, there are a number of areas in which the epilepsy population appears to be making some significant gains. In Chapter 216, Jacoby, Snape, and Baker make a helpful distinction between “felt” and “enacted” or actually experienced stigma. On an overview, attitudes toward people with epilepsy are continuing to become more positive. There are a number of mediators of attitudes toward epilepsy, including the educational levels of respondents and their perceptions of disability-related limitations. Jacoby et al. stress the importance of family support and clear intrafamily communication as being preventive of perceived stigma by offspring. They also endorse the importance of “target-specific change models,” for example, geared to adolescent attitudes, involving multiple and multitiered strategies within each efforts.

Although employment continues to be an international concern, in Chapter 219, Thorbecke and Fraser highlight the various aspects of the vocational assessment process, workplace accommodation, different model programs, and relevant national legislation that affect employability for those with epilepsy. Employment rates through specialized programs have been recorded to be as high as 89% for referrals with “epilepsy only” as a disability.⁶ There is no question, however, that associated cognitive deficits, behavioral difficulties, and so on, are making successful employment outcomes more challenging. Specialized epilepsy vocational programs, however, will continue to be more effective, particularly for individuals with more involved epilepsy and associated disabilities. Unfortunately, there has been a lessening of emphasis on provision of employment services by the national Epilepsy Foundation (EF) in the United States. Today in the United States, specialized epilepsy vocational programs exist only at the University of Washington-Seattle, the University of California-San Francisco, and some EF affiliate agencies. Germany and Holland are among the few other countries that have specialized programs of this nature.

As Beran and colleagues indicate in Chapter 221, a number of gains have been made in the areas of legislation, driver licenses, and access to insurance. The Americans with Disabilities Act (ADA), signed into law in 1990, not only forbids discrimination in employment, but also requires reasonable accommodation (e.g., job restructuring) if an individual cannot perform the essential functions of a job. This type of legislation, although not necessarily affecting initial hiring decisions, can assist people with epilepsy to maintain their job position within the context of discriminatory or whimsical employer decisions to terminate. Eligibility for coverage under ADA has been difficult to establish for persons with good seizure control, but advocacy efforts by the U.S. EF and collaborators are being made to rectify this situation.

In relation to driver licenses, there is a general trend toward shorter seizure-free periods and a review of favorable modifiers prior to categorical driver licensing suspensions. This is not to say that advocacy and targeted physician effort will not be necessary in different areas of the world or within some U.S. states. Some countries, such as Japan and Russia, preclude driving after one seizure.⁴ There remains a delicate balance between patient benefit and acknowledging risk factors and general safety.

Within the area of legislation, however, there is a continuing international need for advocacy, specifically in relation to health care coverage and reform. A number of U.S. insurance companies have used outdated actuarial data and failed to note the advances in diagnosis and treatment of epilepsy in making their health care access and financial rate decisions. This issue is not unique to the United States. Beran et al. emphasize the need to advocate in other areas such as epilepsy research and development and services to families. They end their chapter with a helpful section on strategies for use with political representation.