Now that schools are reopening across the country, it’s important that all youth after epilepsy surgery have plans in the event of an emergency even if their epilepsy is well controlled. Emergency plans include emergency medical plans (such as seizure action plans) and emergency evacuation plans. Your child may need more than one plan.
If your child is at transition age, remember that the focus shifts to the future. This is the time to start to imagine different scenarios your student will be in when they leave school (such as college classes, workplace, day programs, community settings, and other settings where a primary caregiver is not present). If they are able, they can participate in developing new plans that would be appropriate for different settings.
Your child should be able to explain to a roommate what an emergency would look like (such as a seizure or shunt failure), create a medical binder with their recent imaging, medical history, rescue medications for seizures with instructions on how to administer medications, etc.
If training will be needed in different settings to prepare for emergencies and support your child’s medical needs, then put a plan in place to make that happen. If your child is unable to complete these tasks independently, then appropriate supports must be put in place in their postsecondary settings.
All youth with healthcare needs should have an individualized healthcare plan (IHP) that is part of their IEP or 504 plan that outlines their medical conditions, daily medications, emergency procedures, seizure action plan, seizure rescue medications, or any other related needs. If your child does not have an IHP, the team should still develop emergency plans for the student. Ensure that these plans are included in your child’s IEP or 504 plan and referred to throughout document (not just attached.)
Your student may also require an emergency evacuation plan to protect their health and safety in a variety of emergencies. Some students may have difficulty with the noise of alarms during a fire, may not be able to independently navigate crowded hallways during an evacuation, or need access to medications that may be forgotten in a rush. All scenarios should be considered and a plan should be outlined.
Emergency Evacuation Planning
– the basics (adapted from the Ready California Emergency Resource Guide):
Request a copy of the school’s emergency and evacuation plan(s) for different types of emergencies at the school site. If the school’s plan for an active shooter is “drop everything and run,” consider barriers that could create for a wheelchair user or someone with vision or mobility issues when backpacks now litter the hallways. Use this level of questioning and problem solving for every type of emergency your child may face at school (fire, air quality/smoke, earthquake, tornado, hurricane, lockdown/active shooter, etc.) and different types of drills they might practice (such as quietly hiding under a desk or evacuating in case of a fire).
- Ask about accommodations or modifications and other considerations for children with disabilities or other healthcare needs. Find out how your child will access food, medication, change of clothes, diapers, communication devices, or rescue medications in the event of an emergency.
- Find out the school’s reunification plan and what the plan is to communicate with your child during an emergency.
- Find out who will assist your child in the event of an emergency and the plan for the staff or others who may be unfamiliar with your child’s needs to access their medical information or other relevant needs.
- Find out how your child will be reassured or comforted. For nonverbal children especially, state how your child communicates, comforting phrases or songs, what they like, and how to make them comfortable.
- Ask for support in preparing for emergencies at home
- things you can do to prepare your family for an emergency at home
- things you can practice at home so that your child is prepared if there is an emergency at school (imagine different scenarios, use social stories, etc.)
Once you know your school’s safety plan, you can develop an emergency plan that is unique to your child. Ensure that this plan is accessible to all staff at all times (generally that means it goes with the student – think about how that will happen). Emergency plans should include information such as:
- The student’s name and date of birth
- Insurance information
- Medical information (such as surgical history, medications taking, shunt setting, blood type, allergies, etc.)
- Emergency contacts (parents should always be notified of any incident, accident, or emergency for their child during the school day)
- Names of key medical providers and where the student should be taken, which may vary by emergency. For a shunt failure, the neurosurgeon and neurologist should be contacted, for other emergencies, the pediatrician or emergency room may be more appropriate.
- Child Neurology Foundation SAP (fillable)
- Child Neurology Foundation SAP for school (fillable)
- Child Neurology Foundation Plan de accion para en caso de convulsiones (fillable, Spanish)
- Child Neurology Foundation Plan de accion para en caso de convulsiones en la escuela (fillable, Spanish)
- Epilepsy Foundation: Using Rescue Medications
- Epilepsy Foundation: Seizure Action Plans (multiple languages)
- Epilepsy Foundation SAP (fillable)
- Seizure Action Plans website: resources
- Seizure Action Plan Coalition SEP (fillable)
- Seizure Tracker SAP (mobile app)
About the author
Audrey Vernick is the Director of Patient and Family Advocacy for The Brain Recovery Project. She is the parent of a child who had hemispherectomy for seizures caused by stroke and holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates.