39
CHAPTER
Social Issues
David M. Labiner
Living with epilepsy is fraught with difficulties not endured by individuals without epilepsy. Issues include the fact that individuals with epilepsy tend to be less well educated, are under- or unemployed, have lower incomes, and are less likely to be married and have children (1). Much of the stigma associated with epilepsy leads to lower quality of life. Further, other features of epilepsy including discrimination, some of which is legal, lead to practical problems in daily life. Other restrictions placed on individuals with epilepsy, such as limited driving, also may cause poorer quality of life. This chapter will explore some of these issues and how clinicians may assist their patients in addressing these problems.
STIGMA
Stigma associated with epilepsy has a long history and has been pervasive for centuries. This history is well documented elsewhere (2) but to summarize, epilepsy has been associated with “madness,” demonic possession, criminal behavior, and other undesirable characterizations. Even the description of an individual with epilepsy as an “epileptic” may lead that person to feel stigmatized as they are no longer considered normal. Although the term “epileptic” is still widely used, the phrase “individual with epilepsy” is preferred, in that it does not define the individual as a disease entity.
Stigma is not limited to advanced or developing countries but in fact is observed worldwide. One theory suggests that the stigma arises from a pragmatism regarding the individual with epilepsy as being unable to perform normal societal roles (3,4). However, there are clear differences in the misunderstanding of epilepsy between rich and poor countries that may play a role in the ongoing stigma associated with this disorder (Table 39.1).
The stigma associated with epilepsy may be felt as early as childhood when the diagnosis is first made. Parents may react negatively to the diagnosis, as might teachers, friends, and family, leading the child to be ashamed of the diagnosis. This self-inflicted perception can then be reinforced elsewhere and by others. Studies in different countries have suggested that the public perception of epilepsy, although improving, remains problematic. Individuals with epilepsy have been viewed as less favorable than those with cerebral palsy or mental illness (5). Studies in the United States and the United Kingdom have shown negative public attitudes toward those with epilepsy. These studies suggest that the public views individuals with epilepsy as potentially violent, antisocial, retarded, or unattractive. In general, negative attitudes have been seen in a diverse group of individuals, including health care providers (6).
One-quarter of individuals with newly diagnosed epilepsy report feeling stigmatized. This number decreases to 10% in individuals who are seizure free 2 years later versus 45% in those who continue to have seizures (6,7). More important, however, is the relationship of stigma with quality of life. It seems intuitive that quality of life is poorer in those who feel stigmatized and this has been borne out in studies (8). These feelings are likely compounded by the negative effects of ongoing seizures as well as medication side effects.
Stigma and its resulting deleterious effect on quality of life is an ongoing problem for the patients. There is no good answer for how best to handle this but local chapters of the Epilepsy Foundation (EF) may have support groups where patient’s or families may get together to discuss common problems and potential solutions. One can locate their local affiliate at www.epilepsy.com (click FIND US) (9). It may become necessary to refer a patient for professional counseling or psychiatric care if the stigma and resulting reduction in quality of life lead to a worsening of comorbid depression or for help in developing better coping skills.
THE AMERICANS WITH DISABILITIES ACT
The Americans with Disabilities Act (ADA) was enacted in 1990 in the United States in an attempt to provide civil rights protections to those with disabilities and as such prohibit discrimination against them. There are five sections within the act that prohibit discrimination on the basis of disability in employment, programs, and services of state and local governments (including education), by places of public accommodation, in public and private transportation services and in communications (Americans with Disabilities Act. 42 U.S.C. 12101 et seq 1990). While epilepsy is not specifically mentioned in the ADA, the act clearly modeled from the Rehabilitation Act of 1973 that does include epilepsy.
TABLE 39.1 Etiologies of Epilepsy as Understood by the Public
RICH COUNTRIES | POOR COUNTRIES |
Stress, pressure | Sorcery, witchcraft |
Tiredness | Demonic possession, ancestral spirits |
Heat | Infection, contagion |
Mental illness | Saturation by foams |
Brain or nervous disorder | Insect, lizard in stomach or head |
Congenital problem |
|
Old age |
|
Source: Modified from Ref. (6). Jacoby A, Snape D, Baker GA. Social aspects: epilepsy stigma and quality of life. In: Engel J, Pedley TA. eds.
Epilepsy: a comprehensive textbook. 2nd ed. Philadelphia, PA: Lippincott Williams and Wilkins; 2008.
It is important to recognize that every individual with epilepsy will not be considered to have a disability under the ADA. Epilepsy is considered a disability protected by this statute when, after mitigating measures (such as medication, surgery, and diet) the epilepsy still impacts one or more major life activities (seeing, hearing, walking, working, caring for oneself, sleeping).
Following enactment, court rulings, including those of the Supreme Court, lead to a situation where individuals with disability as defined by the Rehabilitation Act were not protected by the ADA. In 2008, the ADA Amendments Act was passed into law to reinstate the initial intent of the law. The employment portion of this law arguably has had the greatest impact for adults with epilepsy and will be explored further.
Title 1 of the ADA has three primary components. First, it states that no employer with more than 15 employees shall discriminate against a qualified person with a disability because of the disability. The individual must be able to perform the essential function of the job or could do so with reasonable accommodation by the employer. However, employers are not required to do this if it would create an undue hardship on the operation of the employer’s business.
The ramification of this law, for individual with epilepsy, is that it helps level the playing field. It is not an affirmative action program. The individual with epilepsy must be able to perform the essential functions of the job with or without reasonable accommodation. As health care providers, we are often asked by patients for guidance when they are seeking employment. It is important to counsel them (or refer them for additional information, see next paragraph) that there is no requirement to self-disclose their condition (disability) at the time of an application or interview. The employer is forbidden to make disability-related inquiries during the application process. Medical examinations are only allowed after an offer has been made to the individual and drug testing, if required, must be for all persons, not just selected individuals. As treating physicians, we are often asked to opine on what reasonable accommodations should be made for our patients with epilepsy. While these accommodations should be individualized, they could include things such as allowing for a modified work schedule, training of coworkers on seizure first aid, removing flashing lights from the workplace, or having another employee climb a ladder.
While it is impossible for most treating physicians to remember details of laws, the Department of Justice has a website devoted to the ADA, www.ADA.gov (10).
EDUCATION
While the majority of children with epilepsy will function relatively normally in school, provisions of the law assure that a child who is disabled (with epilepsy or another disability) is protected. The Individuals with Disabilities Education Act (IDEA) mandates that public schools provide a free, appropriate public education in the least restrictive environment, based on the child’s needs (www.idea.ed.gov) (11). Part of this law requires that in Individual Educational Program (IEP) be designed for the child. Physicians may be called upon to assist parents and the schools in developing a plan to deal with the specific individual needs of the child, as the law stipulates that the IEP must be developed by a team of knowledgeable persons and reviewed annually. Physicians also may be called on if the parents disagree with the IEP and wish to appeal through a due process hearing and review.
SOCIAL SECURITY
In the United States, Social Security is available for individuals with a severe impairment, resulting in an inability to work that is likely to last for greater than 12 months. Epilepsy is a listed impairment in the Social Security guidelines (12). The rules are written such that there are distinctions between convulsive and nonconvulsive seizures. One would be considered eligible for benefits if they have a documented typical seizure pattern whereby the seizures occur more frequently than once per month despite 3 months of prescribed medical treatment. These episodes typically are diurnal but may be nocturnal if they significantly interfere with daytime activities. Nonconvulsive seizures need to occur more frequently than once per week and should be associated with an alteration of awareness, loss of consciousness, or postictal behavioral abnormalities that interfere with normal functioning. Patients should be made aware that the determination of disability for the purpose of Social Security is initiated by the individual themselves by contacting their local Social Security offices and requesting assessment. The role of the treating physician is to provide to the Social Security Administration medical records and timely reports regarding the patient’s seizures, when requested.
MEDICAL INSURANCE
Obtaining medical insurance, while a nonissue in many places around the world, has been a significant problem for individuals with epilepsy in the United States. This has been caused by the restrictive “preexisting disease” clauses present in many policies. With the passage of the Affordable Healthcare Act, this provision is being phased out and will allow individuals with epilepsy to obtain insurance that includes coverage for their epilepsy.
DRIVING
One of the most problematic restrictions placed on individuals with epilepsy is the restriction regarding driving. While laws differ all over the world, and in each of the 50 United States, model legislation has been proposed to account for the public safety and an individual’s need for transport (13). Most authorities in the field agree that individuals with epilepsy should be allowed to drive following some specified seizure-free interval (typically 3 to 24 months). The trend over the past few decades has been toward shortening this interval. The EF has an on-line database where one can check the laws in their specific state (14). A summary of these restrictions can be seen in Table 39.2. Physicians must know the laws for their state (and possibly neighboring states), particularly if there is mandatory reporting of an individual to the motor vehicle agency of that state. Only six states still require mandatory reporting by the physician: California, Delaware, Nevada, New Jersey, Oregon, and Pennsylvania. Physicians are provided immunity for reporting in states where it is required and more typically, “good faith” immunity if they choose to report in a state where it is not required, provided they believe the patient is a threat to public safety because they are driving against medical advice. More typical, however, is the admonition that the physician discuss the laws of the local jurisdiction with the patient and that the patient understand the laws. This of course should be appropriately documented in the patient’s medical record. Physicians have been found liable when their patients with epilepsy have injured others, if they have not informed them of the appropriate laws. In addition, patients themselves have been found liable (either in civil or in criminal cases) when driving against medical advice.
There are a large number of people who believe that individuals with epilepsy should not be allowed to operate a motor vehicle. They typically cite safety concerns and advocate for longer seizure-free periods before allowing unrestricted driving. A study done in Arizona after the state shortened the seizure-free interval following a last seizure from 12 to 3 months, suggests that there may be no benefit of a longer seizure-free interval (15). Specifically, the authors reported no meaningful difference in accident rates for the 3 years before and after the law changed, after adjusting for changes in population and miles driven. This suggests that the onerous law, still present in some states, could potentially be adjusted to the benefit of the individual with epilepsy.
