In the School
For many children with epilepsy, seizures are well controlled, and the condition has little or no impact on school performance. For others, however, seizures, medication side effects, learning difficulties, and other disabilities associated with epilepsy can interfere with school performance and social integration. Schools often do everything they’re supposed to do to support the child with epilepsy, but in some cases, parents must be strong advocates to ensure that this happens. In some cases, appropriate services may not be provided, parents' concerns and the child’s needs may not be taken seriously, seizures may be improperly handled, or unnecessary restrictions may be placed on the student. In such cases, mediation, assistance from an advocacy organization, or legal action may be required.
 

Seizure Response
One key step in planning for a student with epilepsy is developing a seizure response plan. The plan needs to be comprehensive yet clear and concise, and it needs to be in writing. The plan should be developed with input from the parents, the child’s physician, and school staff, so that everyone is in agreement regarding how seizures should be managed. The following information should be clearly described in the plan:
 
  • what type(s) of seizures the student has, what they look like, how long they typically last, how often they occur, and when they are most likely to occur
  • what seizure triggers exist, if any, and what can be done to avoid them
  • what happens before and after a typical seizure (auras, other warning signs, symptoms after the seizure)
  • what first aid is needed (including what to do and what not to do; also including magnet use instructions if student has Vagus Nerve Stimulator)
  • aftercare needed (e.g. time and a place to rest, plans to deal with incontinence, how to decide if student is sent home)
  • when to call 911 and when/how to contact parents
  • when and how to administer “as-needed” medications (e.g. Diastat, Ativan), including who administers them, post-administration monitoring needed, and training required to administer them
  • daily antiepileptic medications taken (including dosage, timing, and side effects)
  • how to document seizures and side effects and how to share this information with parents
  • what to do with other students when a seizure occurs
  • any additional activity restrictions or safety precautions required

Ideally, the entire school staff should be trained in seizure recognition and first aid and should be familiar with or have access to the seizure response plan. Those staff members who work most often with the student should be very familiar with the plan, and should be encouraged to review the plan periodically. Such a plan can be included in an Individualized Educational Program (IEP) or a Section 504 Plan, or it can stand on its own.
 
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Education & Disability Laws
There are several laws relating to the education of children with disabilities. The law that most often applies to children with epilepsy is the Individuals with Disabilities Education Act (IDEA). This law ensures that children with disabilities have access to a free appropriate public education in the least restrictive environment. IDEA is the law that provides special education services (for preschool and K-12), early intervention services, and assistance with the transition to adulthood.
 
When a child is having difficulties in school related to his or her disability, teachers or parents can request that an evaluation be conducted to determine eligibility for special education services. Children with epilepsy are typically eligible under the “Other Health Impairment” category as long as their epilepsy or another disability creates a need for special education services.
 
Because epilepsy often causes difficulties that many educators may not readily associate with epilepsy, it may be necessary to remind the school of the following provision in IDEA: the evaluation must be “...sufficiently comprehensive to identify all of the child’s special education and related services needs, whether or not commonly linked to the disability category in which the child has been classified.” Evaluation should include much more than simply an IQ test. It’s also important for professionals doing the evaluation to be aware of the often variable nature of learning difficulties in epilepsy. For example, if a child with epilepsy has a seizure just prior to an evaluation, his or her performance on testes may be lower than is typical for that child, resulting in an evaluation that underestimates the child’s capabilities. On the other hand, if a child is evaluated during an uncharacteristically seizure-free period, learning challenges that typically occur might be missed.
 
If a school-aged child is deemed eligible for special education services, the next step is to develop an Individualized Educational Program or IEP. Among other things, the IEP includes the following:

  • information on the student’s current levels of achievement and performance
  • details on how the student’s disability affects performance
  • annual goals for the student (and how the school will measure progress)
  • special education and related services to be provided
  • when, where, how often, and for how long the student will receive services
  • seizure response plan, school staff training needs, and other information related to the management of seizures
 
The IEP team includes the parents (and, if appropriate, the child) and key members of the school staff. After the initial meeting to develop the IEP, the IEP team will meet at least once a year to review the child’s progress and develop the next year’s IEP. Additional meetings can be scheduled as needed.
 
Occasionally, the parents and the school may have a disagreement regarding the services to be provided, the goals that are set, the implementation of the IEP, or other issues. In such cases, mediation is often an effective strategy for resolving these differences and coming to a mutually acceptable solution. If mediation is not successful, the parents may file a due process complaint. In other cases, a special education advocate can be used by the parents to help ensure that the student is receiving the services he or she needs to succeed. To possibly prevent a conflict before it happens, parents may also consider facilitation services, which can promote effective communication and help IEP meetings run smoothly.
 
An important part of the IEP process that is sometimes overlooked by parents and educators is transition planning. For any student receiving special education services, transition planning must start by the time the student reaches age 16 (and can start earlier if appropriate). In transition planning, the IEP team, including the student, will identify a coordinated set of activities to help the student reach his or her goals. This may include plans for post-secondary education, vocational training, employment, community involvement, and/or independent living. It may also include the option of staying in school and continuing to receive special education services. In Michigan, students can receive special education services until the age of 26.
 
In cases where a student is deemed ineligible for special education services under IDEA, that student may be eligible for services under Section 504 of the Rehabilitation Act of 1973. Section 504 has a broader definition of “disability” and prohibits discrimination on the basis of disabling conditions by schools receiving federal funding. There is no funding for special education services through 504 (as there is for IDEA), so if costly services are needed, they are more likely to be provided through IDEA. In addition, Section 504 does not require a written plan (although such a plan is often used), and parents are not required to be involved in developing the plan (although they often are involved). Lastly, while IDEA requires an education that meets the unique needs of the student, Section 504 only requires that students with disabilities receive an education comparable to that of students without disabilities. There are several other differences between IDEA and Section 504 that should be considered as well.
 
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Epilepsy and School Performance
Many children with epilepsy have normal intelligence, perform well in school, and have a smooth transition into adulthood, without the need for any of the services offered through IDEA. Others have additional disabilities (e.g. intellectual disability, traumatic brain injury, autism, learning disability, etc.) that affect school performance more than the epilepsy itself.
 
For others, however, school performance problems relate directly to epilepsy and its treatment. The following are just some of the epilepsy-related factors that can affect school performance:
 
  • Seizures – Seizures can result in missed information, particularly if the seizures are brief and not noticed by teachers. They can also disrupt memory function so that information provided prior to the seizure is not properly stored.
  • Postictal Effects – The period after some seizures can be associated with memory dysfunction, sleepiness, and confusion…all of which can interfere with learning.
  • Interictal Epileptiform Discharges – Abnormal electrical activity in the brain that takes place between seizures can cause temporary changes in cognitive functions like alertness and processing speed.
  • Structural Brain Abnormalities – The effects of intractable epilepsy on a region of the brain called the hippocampus can result in problems with memory and other cognitive functions. In addition, underlying structural abnormalities responsible for the epilepsy are often the primary cause of learning problems.
  • Medication Side Effects – Any antiepileptic medication has the potential for cognitive side effects. Such effects are more likely in children on high doses or multiple medications.
  • Sleep Disruption – Epilepsy and its treatment can interfere with sleep. Not getting enough high-quality sleep can have a major impact on cognitive function.
  • Depression and Anxiety – Both depression and anxiety disorders are more common in children with epilepsy than the general population. Both can affect concentration and other cognitive functions, and both can reduce a child’s motivation and confidence.
 
These epilepsy-related effects are easily overlooked by school staff. They are often attributed to lack of motivation because the child’s learning difficulties are not obvious or consistent. Parents often need to be strong advocates to ensure that the impact of epilepsy on school performance is well understood by school personnel and taken seriously.
 
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