Emergencies and disasters can happen at any time or place. With the changing climate, they may be happening more frequently and intensely than in the past. These situations can result in power outages and limited access to medical attention, medications, and needed supplies. They can also lead to the spread of infectious diseases in places where they have not circulated before. All families should have an emergency plan; families of children and youth with complex healthcare needs (CYSHCN) will need an emergency plan that additionally addresses their child’s unique care. This guide will help you create this emergency plan and help prepare your family for potential disasters and emergencies.
Develop an Emergency Plan
Even the best efforts cannot always prevent emergencies from happening. What you can do is plan.
Your Home
- Check your home (inside and out) for materials and items that might be dangerous during a disaster (e.g., loose items on a shelf, large windows, gas lines).
- Find your utility controls, such as gas, water, and electricity, and learn how to turn them on and off.
- Have backup power banks available for cellular devices and phones.
- Install a working smoke detector in each bedroom and major living area of the home.
- Have a functioning carbon monoxide detector on each level of your home, especially near sleeping areas. Some smoke detectors also have carbon monoxide monitors.
- If the smoke and carbon monoxide detector batteries are replaceable, they should be changed yearly. Detectors should also be replaced once they expire.
- Ensure your home has the necessary resources, such as water hoses, fire extinguishers, generators, etc.
Your Family
- Decide where your family will meet if you must leave home during an emergency.
- Determine who your family members should contact if you get separated. Also, determine a method of communication if the phone lines are down.
- Understand the emergency plan at your child’s daycare or school. Make sure outside caregivers understand when to call emergency medical services (EMS) for your child.
- Work on building up an emergency supply (2-4 weeks) of necessary medications in case of a disaster.
- Post emergency phone numbers somewhere everyone knows about, and enter those numbers into each family member’s cell phone.
- Post the house address and nearest cross street in a prominent location in your home in case you have a caregiver for your child there.
- Take a CPR and first aid class. Encourage family members to sign up for the class with you.
- Develop a plan with your neighbors for how you will help one another in case of disaster.
- Practice your family’s disaster plan several times when you first develop it and then annually or whenever the plan changes.
- Create a disaster supply kit (see below).
- Talk about disasters and prepare with all your children in a developmentally appropriate way, including visual aids if necessary.
- Make plans for your pets.
Emergency Response Activation
- Locate and plan your route to hospitals that can care for your child in an emergency.
- Check if your area’s EMS providers have training with children (e.g., fire department, paramedics, police station), particularly in rural areas.
- Check how EMS will get to your house and work to remove potential obstacles.
- If your child has a chronic medical condition, visit the EMS providers in your area and make them aware of your child’s special needs. Find out how they respond in emergencies and ask what you can do to help them care for your child in an emergency. This may include a home visit to learn more about your child and their medical condition.
Medical Care Plan in the Event of Disaster
Use this checklist to make sure you have done everything possible to prepare for medical needs if there is a disaster.
Start by discussing emergency preparations with your child’s doctor:
- Ask about special health risks for your child or symptoms that should be watched for.
- Ensure you have 2-4 weeks of supplies and medications stockpiled for your child.
- Ask your doctor for help filling out an Emergency Information Form (EIF) or Portable Medical Orders (POLST) for your child as needed. See below for more information on the EIF.
- Discuss who should have a copy of your child’s EIF or POLST. Think of relatives your child may stay with, EMS providers (fire department, paramedics, police station), and responsible adults at school, daycare, camp, and other places your child may go. It may also be helpful to have the document (or a note stating the document’s location) where EMS can find it if they enter the home, such as on the fridge or by the front door.
- Keep a copy of your child’s EIF in a watertight bag in a freezer to help protect it against fire. Check with your local EMS to see if they have a preferred location to place an EIF. Consider an additional digital copy on a USB drive or saved to a cloud that can be retrieved by family members.
- Review and update your child’s EIF annually or more often as needed.
- Consider developing a limited power of attorney to allow other trusted caregivers to consent to medical care in your absence.
Considerations for Children and Youth with Complex Health Needs
- Discuss whether it is appropriate for your child to wear identifying medical jewelry or tags with health information.
- If your child is dependent on electrical medical equipment, know where the closest fire station is for a source of backup power.
- Provide utilities, especially electrical, with a letter documenting that a CYSCHN lives at the residence and requires priority restoration of services.
- Consider if backup generators or batteries are appropriate and/or feasible at your residence and ensure an adequate fuel supply for several days of emergency power.
- Ensure adequate ventilation of any backup power system.
Infectious Diseases
If there were a viral outbreak or pandemic and family members were infected, they might need to be quarantined while sick to limit exposure to others. It is a good idea to have a plan for where they could isolate themselves. Someone who is medically fragile or has underlying conditions may need to be in the hospital if they are ill. It is a good idea to create a communication plan for them and set up support by video and phone with family.
Emergency Information Form
The Emergency Information Form (EIF) for Individuals with Complex Health Care Needs was created by the American Academy of Pediatrics and American College of Emergency Physicians. The EIF is created by you and your child’s doctor; it is vital to any emergency plan that involves care for a child with complex healthcare needs. Give the completed form to where your child goes regularly (school, daycare, activities, family). The form can be downloaded from the AAP website, printed, or saved on your home computer and easily updated –Emergency Information Form (EIF) for Individuals with Special Health Care Needs.
Note that the form may not be adequate for every child with special needs because the space to list diagnoses and medications is limited. In these situations, you could work with your medical care team to list the most important data (e.g., listing cardiac medications but omitting vitamins) or supplement the form as needed to provide further detail.
Disaster Supply Kit
Preparation is the key to surviving a disaster and managing the chaos afterward. One way to prepare is by making a disaster supply kit. If you’ve gathered supplies in advance, your family can better handle an evacuation or home confinement.
Emergency planning should include a well-stocked first aid kit in your home and car. Talk with your child’s doctor about what you would need specifically for your child when preparing your kit. When putting together your disaster supply kit, think about how you would meet your child’s needs if there were:
- No electricity, phone, heat, air conditioning, or computer
- No water
- No local access to prescription refills or health care products*
- No refrigeration
- Separation from family
- Evacuation to a shelter or safe place
- Confinement at home, shelter in place, isolation, quarantine
- Limited healthcare access
- Lack of transportation
- Limited emergency rescue services
*Prescription medications and monthly home health supplies – many insurance plans, including Medicaid, allow prescriptions to be refilled every 25-28 days. By refilling each prescription as early as possible, over several months, you can build a surplus of medications and supplies to use in an emergency. As always, it is crucial to maintain a system of rotation that allows you to use any medication before it expires or loses its effectiveness. It is also critical to ensure that stockpiled medications are kept in a safe location where they are not easily available to children or pets who might ingest toxic quantities of the medication. Ask your insurance company how often you can refill prescriptions, and talk to your pharmacist about expiration dates and the proper rotation of medications.
In an Emergency
- When an emergency or crisis occurs, it is important to stay calm, especially for your child’s sake.
- Know who and how to call for help. Dial 9-1-1 or your local emergency services number.
- Have your child’s EIF form or Care Notebook available for the EMS response team.
- Comfort and reassure your child. Listen to your child and help them understand what is happening.
