Lawsuit Filed Against NISRA Claims Discrimination Against Epileptic Participants

The U.S. filed a civil lawsuit Monday against the Northern Illinois Special Recreation Association, accusing the Crystal Lake-based organization of discriminating against particpants with epilepsy.

The lawsuit claims NISRA has refused to administer anti-seizure medication to two patients who suffer from epilepsy, an act that violates the Americans with Disabilities Act, according to a press release.

NISRA provides recreational activities for children and adults with disabilities through a network of 13 park districts and municipal recreation departments.

Those park districts include Crystal Lake, Cary, Huntley, Barrington, Dundee Township, Hampshire Township, Marengo and Wauconda. The municipal recreation departments associated with NISRA include the communities of Elgin, Harvard, Lake in the Hills, Woodstock and McHenry. 

In the lawsuit, U.S. attorneys claim the NISRA staff routinely administers medication - such as allergy and asthma meds - to participants. Staffers also feed children with gastronomy feeding tubes, the lawsuit claims.

Medication at Center of Dispute

At issue is administration of Diastat AcuDial (Diastat), the only FDA-approved medication for out-of-hospital treatment of emergency, prolonged epilepsy seizures.

Administered rectally, Diastat is a gel pre-filled in plastic syringe with a flexible plastic tip, which allows the medication to act quickly and safely. There are no adverse side effects when administered incorrectly, or when the person is not actually suffering a seizure.

Diastat, a central nervous system depressant, is used to stop seizures and prevent brain damage or death. It works most effectively if administered within five minutes of the onset of the seizure, and the longer it takes to administer the medication, the less effective it is in stopping an ongoing seizure. 

Diastat was developed to be administered by people without medical training, such as parents, teachers, camp counselors, and caregivers, according to the civil complaint.  

“This lawsuit seeks to require NISRA to make a reasonable modification to its policies to administer a life-saving medication to participants with epilepsy who need it so that they may enjoy the same services, programs, and activities as other individuals with and without disabilities,” said Gary S. Shapiro, Acting United States Attorney for the Northern District of Illinois. 

Mr. Shapiro announced the lawsuit with Thomas E. Perez, Assistant Attorney General for the Justice Department’s Civil Rights Division.  

Lawsuit Filed on Behalf of Two Area Youths

The lawsuit was filed on behalf of two youths with epilepsy who have participated in NISRA’s programs in the past and wish to continue in the future.

One is an eight-year-old Crystal Lake girl who was diagnosed with epilepsy in 2005. Her physician prescribed a treatment plan that includes promptly administering Diastat. 

The girl registered to participate in the Crystal Lake Park District’s 2011 summer camp and asked that a NISRA aide be allowed to administer the medication if needed. NISRA refused the request and informed the girl’s parents that the aide would only monitor their daughter for signs of a seizure and would call 911 if a seizure occurred, the lawsuit alleges.

The other youth is a 17-year-old girl who lives in McHenry County and has suffered approximately 30 grand mal seizures seizures over the last 10 years, some lasting longer than an hour, which can be life-threatening. 

In 2007 and 2008, the girl participated in NISRA’s summer camp program and several other programs during the school year. At that time, NISRA agreed to administer Diastat if needed, but at no time was it actually required.

After the 2008 summer camp, NISRA changed its policy to no longer administer Diastat, and adopted a policy to follow the participant’s seizure plan as closely as possible, but calling 911 instead of administering the medication, resulting in a dangerous delay.

The lawsuit contains merely allegations of unlawful conduct. In civil cases, the government has the burden of proving the allegations by a preponderance of the evidence.