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According to the Epilepsy Foundation of America, epilepsy is a physical condition that occurs when there is a sudden, brief change in how the brain works. When brain cells are not working properly, a person's consciousness, movement, or actions may be altered for a short time. These physical changes are called epileptic seizures. Epilepsy is therefore sometimes called a seizure disorder. Epilepsy affects people in all nations and of all races.
 
Some people can experience a seizure and not have epilepsy. For example, many young children have convulsions from fevers. These febrile convulsions are one type of seizure. Other types of seizures not classified as epilepsy include those caused by an imbalance of body fluids or chemicals or by alcohol or drug withdrawal. A single seizure does not mean that the person has epilepsy.

Source:  NICHCY

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Free Publication: Legal Rights of Children with Epilepsy in School & Child Care: An Advocate's Manual (PDF) - Do you want to know more about a child's right to FAPE in IDEA? Are all children with disabilities entitled to the services guaranteed in IDEA 2004? What are the thirteen named disabilities in IDEA? What is "Other Health Impaired (OHI)"? The Epilepsy Foundation has published a new Advocate's Manual that provides detailed practical guidance to help parents and non-attorney advocates understand the rights of children in the special education process. This new manual is not limited to children with epilepsy, it's reach is far broader. It provides excellent information about how to effectively advocate to secure the rights of all children with disabilities.

Students with epilepsy or seizure disorders are eligible for special education and related services under the Individuals with Disabilities Education Act (IDEA). Epilepsy is classified as "other health impaired" and an Individualized Education Program (IEP) would be developed to specify appropriate services. Some students may have additional conditions such as learning disabilities along with the seizure disorders.
 
Seizures may interfere with the child's ability to learn. If the student has the type of seizure characterized by a brief period of fixed staring, he or she may be missing parts of what the teacher is saying. It is important that the teacher observe and document these episodes and report them promptly to parents and to school nurses.
 
Depending on the type of seizure or how often they occur, some children may need additional assistance to help them keep up with classmates. Assistance can include adaptations in classroom instruction, first aid instruction on seizure management to the student's teachers, and counseling, all of which should be written in the IEP.
 
It is important that the teachers and school staff are informed about the child's condition, possible effects of medication, and what to do in case a seizure occurs at school. Most parents find that a friendly conversation with the teacher(s) at the beginning of the school year is the best way to handle the situation. Even if a child has seizures that are largely controlled by medication, it is still best to notify the school staff about the condition.
 
School personnel and the family should work together to monitor the effectiveness of medication as well as any side effects. If a child's physical or intellectual skills seem to change, it is important to tell the doctor. There may also be associated hearing or perception problems caused by the brain changes. Written observations of both the family and school staff will be helpful in discussions with the child's doctor.
 
Children and youth with epilepsy must also deal with the psychological and social aspects of the condition. These include public misperceptions and fear of seizures, uncertain occurrence, loss of self control during the seizure episode, and compliance with medications. To help children feel more confident about themselves and accept their epilepsy, the school can assist by providing epilepsy education programs for staff and students, including information on seizure recognition and first aid.
 
Students can benefit the most when both the family and school are working together. There are many materials available for families and teachers so that they can understand how to work most effectively as a team.

Source:  NICHCY

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The Epilepsy Foundation of Michigan

20300 Civic Center Dr Ste 250
Southfield, MI, 48076-4128

Phone: (248) 351-7979 or (800) 377-6226
Web: http://www.epilepsyfoundation.org/michigan/

Support Group Information: http://www.epilepsyfoundation.org/local/michigan/groups.cfm

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New Manual on Advocacy for Students with Epilepsy - The Epilepsy Foundation has just published a new, free legal resource, Legal Rights of Children with Epilepsy in School & Child Care: An Advocate’s Manual. This manual provides detailed practical guidance – for both parents and attorneys – on effective advocacy. strategies. Although parts of the manual focus on the needs of children with epilepsy, it would also be useful for people who advocate for kids with other chronic illnesses like diabetes. Most of it will be useful to people who advocate for children with disabilities. Describes rights under IDEA, 504, ADA and more.

Need information on Epilepsy fast?  You may want to consider checking out the EFA-epilepsy site at http://www.efa.org. 

Epilepsy Foundation - National Office
(800) 332-1000 (Toll Free)
E-mail: postmaster@efa.org
Web: www.efa.org
 
National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health
(800) 352-9424
Web: www.ninds.nih.gov

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Information coming soon.  Do you have anything you'd like to contribute to this section? 

If so, email it to jackie@bridges4kids.org. 

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Epilepsy: Cognitive Testing & Clinical Trial Information
From Exceptional Parent: "At Exceptional Parent we are dedicated to keeping parents informed about a variety of treatment options for children with special needs. Talk with your physician to find out if your child might benefit from being part of this clinical trial. For more information on the trial, or to find out whether your child may qualify to participate, please call 877-547-8839 (toll free)."

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Restrictions Eased on Air Travel by People with Epilepsy: Airlines Urged to Adopt New Aerospace Medical Association Guidelines

from the Epilepsy Foundation of Massachusetts & Rhode Island, July 4, 2003

 
The Epilepsy Foundation has notified people with epilepsy that Medical Guidelines for Airline Travel recently revised by the Aerospace Medical Association now provide appropriate guidance for air travel by people with the disorder. The guidelines for the first time explicitly acknowledge that, "In general, most patients with epilepsy can fly safely."

Previous guidelines recommended that no travel at all be allowed if someone had frequent or uncontrollable seizures. According to James Grisolia, MD, chief of neurology, Scripps-Mercy Hospital, San Diego, "this recommendation is too often used to deny passage or seriously delay the travel of air passengers with epilepsy, whether or not they have active seizures." Grisolia is chair of the Epilepsy Foundation's professional advisory board advocacy committee and represented the organization in affecting the policy change.

The new guideline makes it clear that individuals, with or without active seizures, have the Aerospace Medical Association's sanction for air travel. It reads:

In general, most patients with epilepsy can fly safely. However, patients with uncontrolled, frequent seizures should be cautioned about air travel, including the attendant risk of limited medical care capability inflight. Individuals with seizures sufficiently frequent to cause immediate concern should consider traveling with a companion ....

"Because airlines in the past showed a good faith effort to obtain medical advice," said Eric R. Hargis, the Foundation's president and CEO, "there was little recourse for passengers. We urge all airlines to adopt the Association's revised recommendation and allow air travelers with epilepsy to enjoy their right to travel free of discrimination."

The goals of the Epilepsy Foundation are to ensure that people with seizure disorders are able to participate in all life experiences; and to prevent, control and cure epilepsy through research, education, advocacy and services.

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