The Epilepsy Foundation fights discrimination against children with seizures

Exceptional Parent, The, July, 2007 by Gary Gross

Despite recent advances in treating epilepsy-a common neurological disorder causing recurrent seizures-the condition continues to evoke negative stereotypes, fear, and misunderstanding. Sadly, many of the three million adults and children with the disorder in the United States are likely to experience discrimination or other mistreatment in various aspects of life. For instance, adults with epilepsy frequently encounter discrimination in employment, given that many employers may presume unjustifiably that seizures pose a safety risk and otherwise make someone unqualified for the job. Police may arrest people experiencing seizures or use excessive force to restrain them (sometimes causing death or serious injury), mistaking involuntary behavior caused by certain seizures as criminal or aggressive conduct.

The hundreds of thousands of children living with epilepsy are affected in a variety of ways. For some, it will be a temporary problem, easily controlled with medication and outgrown after a few years. For others, it may be a lifelong challenge affecting many areas of life. Medical treatment of childhood epilepsy is getting better, and research towards a cure continues. However, children too are subjected to discrimination. Frequently, schools may fail to provide to children with epilepsy adequate special education services or accommodations to address learning problems caused by their seizures or the side effects of anti-seizure medication. And, as discussed below, schools and childcare programs, alike, may refuse to administer emergency medication for seizures, placing a child's health at risk.

The Epilepsy Foundation, which is the national voluntary agency solely dedicated to the welfare of the three million people with epilepsy in the U.S. and their families, has taken a leadership role in fighting discrimination affecting both children and adults. The Foundation, a nonprofit agency founded in 1968, works to ensure that people with seizures are able to participate in all life experiences and strives to prevent, control, and cure epilepsy through research, education, advocacy, and services. In addition to programs conducted at the national level, local Epilepsy Foundation offices in nearly 100 communities serve individuals with epilepsy throughout the United States. These local affiliates advocate on behalf of persons with epilepsy to ensure access to benefits, services, and employment; to provide information and referral services tailored to their communities; and to sponsor public education campaigns. For more information, go to www.epilepsyfoundation.org.

The following provides an overview of the Foundation's legal advocacy efforts to fight discrimination with a focus on issues affecting children in school and childcare programs.

Jeanne A. Carpenter Epilepsy Legal Defense Fund

In order to develop a capacity to fight epilepsy-related discrimination nationwide, in 2004, the Foundation established its Jeanne A. Carpenter Epilepsy Legal Defense Fund. The Fund was established in memory of Ms. Carpenter, a lawyer, Epilepsy Foundation Board member, and a person with epilepsy. She was a tireless advocate for people with epilepsy from the time she was first diagnosed with the condition until her untimely passing in 2003.

The Fund's goals are to help individuals fight unfair practices toward people with epilepsy, to create case law that protects their rights, and to change laws and polices that discriminate against them. (For more information on the Fund, see its Web site at www.epilepsylegal.org.) To carry out these goals, the Fund:

* maintains a clearinghouse of information related to the rights of people with epilepsy,

* provides direct legal guidance to individuals experiencing epilepsy-related discrimination and their families, and

* makes referrals to a nationwide network of cooperating attorneys, who provide these individuals legal representation and, in turn, the Fund tracks the progress of these cases, assisting attorneys to help ensure positive outcomes.

The Fund has filed numerous friend-of-the-court briefs to educate courts on legal issues of import to people with epilepsy and has provided many attorneys advice on legal strategies, along with legal research assistance and funding to help defray litigation expenses in precedent-setting cases.

Recent examples of the Defense Fund's legal initiatives on behalf of adults with epilepsy include:

* helping to bring national attention to a series of incidents involving excessive force used by police in responding to persons experiencing seizures (sometimes resulting in death or serious injury) and securing counsel to represent these individuals in litigation;

* filing briefs or providing other support, helping to secure positive settlements or decisions in employment discrimination cases involving a firefighter in Illinois, a regional manager with UPS in Nevada, a maintenance worker in Texas, a police officer in Kentucky, and a truck driver in New York; and

* working with the Equal Employment Opportunity Commission (which enforces the ADA's protections against employment discrimination) to ensure investigations of cities around the country that are unfairly denying jobs to people with epilepsy based on unfounded safety concerns.