U.S. Takes Up Plight of Epileptic Campers

     CHICAGO (CN) – Epileptic children cannot participate in a camp program for the disabled because its organizers bar rectally administered medication, the United States claims.
     The Northern Illinois Special Recreation Association (NISRA) “discriminates against individuals with epilepsy on the basis of disability, by denying them an equal opportunity to participate in the recreational programs NISRA provides because it refuses to administer a potentially lifesaving anti-seizure medication,” according to the federal complaint filed by Acting U.S. Attorney Gary Shapiro.
     NISRA is an intergovernmental organization that provides recreation programs for children and adults with developmental and physical disabilities, such as camping trips and sports programs. These programs are generally hosted at one of 13 park district facilities in northern Illinois.
     Staff members are expected to administer medications to program attendees and to be on-call for any medical emergency. They regularly administer epinephrine shots for children with severe allergies, dispense asthma medication, and feed children with gastrostomy feeding tubes, the complaint says.
     Children and adults with epilepsy are also qualified to attend NISRA events, and “NISRA staff are specifically trained on how to respond to seizures pursuant to NISRA’s seizure management policy,” according to the complaint. “Participants with a history of seizures must submit seizure plan in which their doctor describes the type of seizure(s) they experience, the medications they currently take, and the protocol to follow in the case of a seizure.”
     Since 2008, however, NISRA has changed its policy so that staff may no longer administer Diastat, a rectally administered gel “that is used to stop seizures, thereby preventing brain damage or death that could result in seizures persist.”
     M.M., a 17-year-old with epilepsy and an IQ of 69, is supposed to take Diastat “upon the onset of a tonic-clonic seizure,” according to the complaint.
     The teen attended NISRA’s summer camp in 2011 without suffering a seizure, but she has experienced several seizures since then, and her parents are allegedly worried about sending her back because of NISRA’s policy against Diastat.
     “M.M. desperately wants to participate in future NISRA summer camps, because it is the only summer camp available to her,” the complaint states. “Given the recent onset of her prolonged seizures, however, NISRA’s continued refusal to administer Diastat makes M.M.’s participation in any NISRA camp or program very risky to her health.”
     N.R. is an 8-year-old girl diagnosed with epilepsy, whose doctor also prescribed Diastat for prolonged seizures. As in M.M.’s case, N.R’s “parents remain concerned about what will happen if N.R. needs Diastat at camp and cannot get it,” according to the complaint.
     Shapiro his lawsuit is calling for a “a reasonable modification” to NISRA policies in asking it “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.”
     The United States seeks an injunction requiring NISRA to administer Diastat to participants in its programs as medically required.
     The government is represented by Assistant U.S. Attorneys Patrick Johnson and Harpreet Chahal.

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