Epilepsy Foundation Applauds Justice Department for Filing Suit Seeking to Ensure Illinois Special Recreation Program Provides Access to Emergency Epilepsy Medication

The Foundation provided key medical and technical support to the Justice Department to help develop the case.  

LANDOVER, Md. — September 24, 2012 — The Epilepsy Foundation applauds the U.S. Department of Justice for filing litigation today under the Americans with Disabilities Act (ADA) against the Northern Illinois Special Recreation Association (NISRA) to ensure that people with epilepsy participating in its programs have immediate access to a potentially life-saving emergency antiseizure medication. NISRA, which is formed from 13 park districts and municipal recreation departments in northern Illinois, provides year-round recreational opportunities for children and adults with disabilities such as therapeutic recreation, Special- Olympics training programs and summer camps.

The lawsuit (filed in federal court in Illinois), apparently the first of its kind brought by the Justice Department, charges that NISRA refuses to allow its staff to administer this medication to M.M. and N.R., two children with epilepsy, who live with their parents in McHenry County, IL and Crystal Lake, IL, respectively, who want to attend summer camps run by NISRA. M.M. desperately wants to participate in future summer camps, because it is the only camp available to her. But she cannot do so, because NISRA's refusal to administer the medication makes her participation very risky to her health. Similarly, N.R.'s participation in the camp program is also quite risky because of this policy.

The medication at issue, diazepam rectal gel (sold under the brand name Diastat AcuDial), is the standard out-of-hospital FDA-approved medication for prolonged seizures. It was specifically approved by the FDA for administration by people without medical training — such as parents, child care workers and school personnel — who can do so safely and easily. Children with epilepsy are particularly susceptible to prolonged seizures that may cause serious brain injury or death if not promptly treated. Yet, NISRA's only plan for both M.M. and N.R. was to call 911 in the event they experienced a prolonged seizure, which would result in a dangerous delay in treatment.

As the Justice Department suit states, under the ADA, which prohibits discrimination against people with epilepsy and other disabilities in recreational programs and other public accommodations, NISRA has an obligation to modify its policy against administering this medication. This policy change is necessary to afford M.M., N.R. and other children and adults with epilepsy an equal opportunity to participate in NISRA's programs.

Many similar programs and child care providers quickly understand that administering this and similar emergency antiseizure medications is the right and necessary action to take, said Gary P. Gross, the Epilepsy Foundation's Director of Legal Advocacy. Indeed, since 2009, the largest corporate child care provider in the U.S., Knowledge Universe, which operates KinderCare Learning Centers and other child care programs, has been successfully implementing a comprehensive policy (developed jointly with the Epilepsy Foundation) on providing emergency antiseizure medication and other first aid to children with epilepsy.

"Unfortunately, many other providers do not understand and may put children at risk and create an unnecessary burden on families who cannot find safe child care and similar programs," said Mr. Gross. "This has been a major concern in the Chicago area," said Kurt W. Florian, Jr., Interim President and CEO, Epilepsy Foundation of Greater Chicago. "Our office has long been advocating for local day care providers and recreational programs to do the right thing, with mixed results, and we are hopeful that NISRA will agree to promptly settle this matter — to both ensure the safety of children and adults with epilepsy in its care and set an example for other similar programs," added Mr. Florian.

About Epilepsy

Epilepsy is a neurological disorder that produces seizures affecting a variety of mental and physical functions. It is also called a seizure disorder. When a person has two or more seizures, they are considered to have epilepsy. Epilepsy affects nearly 3 million people in the U.S. and 50 million worldwide. This year, another 200,000 people will be diagnosed with epilepsy. There is no known cure for the disorder.

About the Epilepsy Foundation

The Epilepsy Foundation, a national nonprofit with affiliated organizations throughout the United States, has lead the fight since 1968 to stop seizures, find a cure and overcome the challenges created by epilepsy. For additional information, please visit www.epilepsyfoundation.org. People with epilepsy experiencing discrimination in employment, education and other areas of life may obtain legal help by contacting the Foundation's Jeanne A. Carpenter Epilepsy Legal Defense Fund (go to www.epilepsylegal.org for more information).

Media Contacts:

Gary Gross, Esq.
Director of Legal Advocacy and
 Jeanne A. Carpenter Epilepsy Legal Defense Fund
Epilepsy Foundation
301-918-3765
ggross@efa.org

Kurt W. Florian, Jr.
Interim President and CEO
Epilepsy Foundation of Greater Chicago
(312) 939-8622, ext. 210
kflorian@epilepsychicago.org