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Case of N.V.

October 2002 - Case Opened
May 2003 - Mediated settlement
    Case closed

Case of N.V. is a 4-year-old child who attends a county Early Childhood Center that he and his parents enjoy, and has a dangerous and unusual tonic-clonic seizure disorder. He was born with ataxic cerebral palsy and suffers from a movement disorder, delayed speech and language, impaired cognitive development, and epilepsy. The best-known means of controlling his very dangerous seizures is through a rectally delivered form of valium, commonly known as Diastat. Most children with epilepsy endure brief seizures that resolve themselves quickly, without intervention. N.V., however, suffers from an unusual and far more dangerous seizure pattern. In his experience, untreated seizures persist without end, and lead to a state of nonstop continuous seizure activity called status epilepticus. Prolonged seizures (30 minutes or more in duration) are often accompanied by loss of consciousness, and are significantly more difficult to abort than shorter seizures. Children who enter status epilepticus are at high risk for permanent neurological damage and death. Diastat is the only remedy that will control and minimize the effect of N.V.'s seizures during the school day. However, the county office of education, as well as the child's home school district, refused to administer the medication, citing liability issues. This put N.V.'s mother in the position of having to sit in a nearby cafe while her son attended the county school, armed with Diastat in the event her son went into a seizure. This situation precluded her from obtaining gainful employment; she contacted the Youth and Education Law Project.

Clinic student Jessica Steinberg ('04) researched what legally constitutes a "free and appropriate education" (FAPE) an "related service" as part of FAPE, arguing that administering prescription medications is a related service, and that by denying N.V. this service, he was denied FAPE. On the eve of a due process hearing to resolve the case, the school district and the county—the latter more reluctantly—agreed. The family, the county, and the school district settled, and N.V. is happily attending school; to date, he has had no seizures in school. As well, his mother no longer has to wait around idly and nervously waiting for "the phone call."