Back to School with Epilepsy
To parents of children with epilepsy, heading back to school can feel like heading into a hurricane. But it can help to know there are resources available to you and your family. Included are websites on how to talk to school about epilepsy and information on the Individuals with Disabilities Education Act (IDEA).
It is important for all parents of children with epilepsy to know that IDEA exists for your protection. Below is a summary which is available through understood.org.
Individuals with Disabilities Education Act (IDEA)
The process of finding a child eligible for early intervention or special education and related services under IDEA begins with a comprehensive and individual evaluation of the child in order to:
- establish that the child does, indeed, have a disability;
- get a detailed picture of how the disability affects the child functionally, developmentally, and academically; and
- document the child’s special needs related to the disability.
This evaluation is provided free of charge through either the early intervention system (for infants and toddlers under the age of 3) or through the local school system (for children ages 3-21). Under IDEA, children with epilepsy are usually found eligible for services under the category of “Other Health Impairment” (OHI).
We’ve included IDEA’s definition of OHI below:
IDEA’s Definition of “Other Health Impairment”
The nation’s special education law specifically mentions epilepsy in its definition of “Other Health Impairment,” a category under which children may be found eligible for special education and related services. Here’s IDEA’s definition.
(9) Other health impairment means having limited strength, vitality, or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that—
(i) Is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and
(ii) Adversely affects a child’s educational performance. [34 CFR §300.8(c)(9)]
For more information
Also be sure to check out the Epilepsy Foundation’s page on legal rights of person’s with epilepsy.
And don’t forget to let us know your thoughts!
Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.
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