Legal Concerns and Effective Advocacy Strategies
Roy G. Beran
John Devereux
William McLin
Cynthia Lehman
Johan Falk-Pedersen
Hanneke M. de Boer
Alexandra Finucane
Introduction
For too many years, people with disabilities—particularly people with epilepsy—were a voiceless minority. These individuals had many unmet needs in the areas of civil rights, education, employment, residential and community services, and provision of appropriate health care. Many lived at home, rarely venturing out. Too many were segregated from society and they were forced to live in large state residential institutions for the intellectually disabled or mentally ill. Until recent decades, laws, even in countries whose citizens pride themselves on liberal views about such matters, such as the United States, restricted the rights of people with epilepsy to marry and provided for their involuntary sterilization.3 The prevailing belief was that people with epilepsy could not be employed because they might have a seizure on the job and hurt themselves or others.
Over the years, these beliefs and conditions have been challenged in various countries by advocacy efforts led by citizens with disabilities, family members, professionals, policy makers, and the courts. Gradually, society is coming to recognize that many of the problems faced by those with disabilities are not inevitable but are rather the result of discriminatory policies based on unfounded, outmoded stereotypes and perceptions deeply grounded in irrational fears and prejudices toward such people.
In recent decades, some countries have enacted laws specifically prohibiting discrimination on the basis of disability. One example of a broad-reaching antidiscrimination law is the Americans with Disabilities Act (ADA), enacted in 1990, which prohibits discrimination on the basis of disability in employment, in the programs and services of state and local governments, by places of public accommodation, in public and private transportation services, and in communications. The ADA grants all individuals with disabilities uniform protection, regardless of the state in which they live.2
Even with the passage of laws like the ADA and its international equivalents, epilepsy raises a variety of legal concerns, including employment discrimination, driver licensing requirements, access to appropriate educational services, access to insurance, and even possible arrest for seizure-related behavior. This chapter summarizes some of the legal issues that patients with epilepsy face, some of the legal remedies, the issues physicians may face as they advocate for their patients, continuing areas of legislative advocacy, and effective advocacy strategies for those wishing to change current laws.
This chapter emphasizes U.S. law because space does not permit a full discussion of legal issues from the perspective of each country and because insufficient recent information exists about legal issues from an international perspective, except in the area of driver licensing. Additional publications on legal or psychosocial issues in various countries may be of interest.1,4,6,9,10,11,12,15,16,19,21,23,24,25
The Americans with Disabilities Act—Employment Provisions
Although laws do not eliminate discriminatory attitudes, antidiscrimination statutes such as the ADA have forced many employers to reevaluate and subsequently change their employment practices and have given employees important legal tools with which to seek redress from unfair employment practices.
The concept of disability under the ADA encompasses three parts: (a) does the individual have, does the individual have a record of, or is the individual regarded as having, a physical or mental impairment? If so, does the physical or mental impairment the individual has, has a record of, or is regarded as having (b) substantially limit (c) one or more of that individual’s major life activities?
Under the ADA, employers with 15 or more employees are prohibited from discriminating on the basis of disability against individuals who can do the essential functions of the job or who could do so with reasonable accommodation. Reasonable accommodation is a flexible concept. Examples of accommodations that might be appropriate for individuals with epilepsy include job restructuring (e.g., if driving is a marginal duty, driving tasks could be reassigned to another employee); permitting part-time or modified work schedules; allowing time off for doctor’s visits and to recover from seizures; installing a safety device around a piece of machinery; padding a concrete floor at the employee’s work site; and allowing the individual to work at a job site close to home or, in some cases, at home.
Employers are not required to provide an accommodation under the ADA if it would be an “undue hardship” on the employer, that is, if it would cause the employer significant difficulty or expense. This is evaluated in light of the employer’s overall business. If a particular accommodation would impose an undue hardship on an employer, the employer may be required to provide other reasonable accommodations. The ADA does not require employers to accommodate the needs of employees who miss work to care for family members with medical problems. However, in the United States, employees who need to miss a significant amount of work because of their serious health problems or those of family members may benefit from the Family and Medical Leave Act (FMLA), which requires employers with 50 or more employees to provide up to 12 weeks of unpaid leave to eligible employees and to retain the employee’s benefits. It is recognized that this may be a uniquely U.S. situation, but it highlights the way in which the rights of individuals are becoming protected by law. Further
information about FMLA can be obtained from the Wage and Hour Division of the U.S. Department of Labor.
information about FMLA can be obtained from the Wage and Hour Division of the U.S. Department of Labor.
Safety Issues
For most jobs, simply having occasional seizures will not significantly affect the person’s ability to do the job’s essential functions. Having seizures does not render a person unqualified under the ADA simply because seizures require occasional use of sick time, do not look good, or may result in injury or possible use of worker’s compensation. In the U.S. example, employers do not have to offer a job or retain an individual in a job because of a disability if the individual poses a “direct threat” to safety. Direct threat is defined as “a significant risk of substantial harm which cannot be lessened by reasonable accommodation.”
Except in very limited circumstances (e.g., commercial airline pilots), a mere diagnosis of epilepsy will not mean that an individual poses a direct threat. Similarly, a possibility or even a probability that an individual will experience a seizure at work is usually not enough to make that person a direct threat without showing that the individual’s workplace or essential job duties pose a particular risk of harm. An evaluation must also be made as to whether the factors causing the increased risk can be reduced through a reasonable accommodation. Using laws similar to the ADA, people with epilepsy have successfully obtained and retained such high-risk jobs as firefighter, police officer, and butcher (see, e.g., the case of Jansen v Food Circus Supermarkets13).
Unsubstantiated fears about risks from the employment environment may not be used by an employer to disqualify a person with epilepsy. Under the ADA, employers must evaluate the individual and the specific situation using reasonable medical judgment that relies on the most current knowledge and best objective evidence. If the specific job tasks suggest possible safety concerns, the treating physician may be asked by the employer or employee for advice about whether the employee should avoid certain tasks. In evaluating a person with epilepsy for a position that might pose safety concerns, it is important to consider the type of job, the essential job duties, the degree of seizure control, the types of seizures (whether the person has simple partial onset to warn of possible evolution), the person’s reliability in taking prescribed seizure medication, any side effects of medication, and any accommodations that might lessen the risk.17
The ADA’s focus on individual capabilities is especially important for the individual with epilepsy because the term epilepsy refers to a broad range of symptoms and underlying causes. Depending on their individual circumstances, some people with active seizures should avoid certain job tasks, such as driving, or certain environmental conditions, such as exposure to open fire, hot substances, dangerous moving objects, mechanical and electrical hazards, and situations in which a danger of falling exists. If an employee is no longer able to do the job for which he or she was hired, even with reasonable accommodations, an employer may be required to reassign that employee to another position, if one is available, for which the employee is qualified. The position should be equivalent in terms of pay and other job status. Within this scheme, an employer is permitted to reassign an individual to a lower-grade position if that is the only position available for which the individual is qualified.
Medical Inquiries by Employers
Employers who are covered by the ADA are prohibited from asking any questions about whether an applicant has a medical condition or about the nature and severity of the condition until after they have extended the applicant a job offer. This is particularly important for individuals with epilepsy, who historically have been denied interviews and refused employment solely because an employer learned of their epilepsy. Again focusing on the U.S. situation, once a job offer has been made, an employer may ask medical questions or request that an individual have a medical examination, so long as all employees selected for that job classification are required to do so. Once an individual has been employed and is on the job, medical inquiries must be job related and consistent with business necessity. In other words, the need for the examination must be triggered by some evidence of problems related to job performance or safety, or an examination may be necessary to determine whether individuals in physically demanding jobs continue to be suitable for duty. In addition, a request for reasonable accommodation by an employee may trigger medical inquiries to verify the need and scope of accommodation. All medical information must be kept separate from an employee’s personnel file, and the information must be kept confidential.
Many countries have enacted privacy laws, and transgression of these may provide an alternate source of remedy if the person with epilepsy has been exposed against his or her will.
Complaint Process Under the Americans with Disabilities Act
Individuals may file employment discrimination complaints under the ADA with the U.S. Equal Employment Opportunity Commission (EEOC) or, in many cases, with their state Human Rights Commission. If an employer is not covered by the ADA, because the business does not have 15 or more employees, one should investigate whether there is a state law that applies. Further information about state antidiscrimination laws should be available from the state Human Rights Commission (HRC), and most industrialized countries now have local equivalents of the EEOC and HRC. These bodies have international legitimacy because their host nation is usually a signature nation of the International Parent Body run under the auspices of the United Nations. The U.S. example is far from unique, and was merely provided as a focus on which local proceedings can be examined and used to protect the rights of people with epilepsy.

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