Emergency Preparedness

Emergencies and disasters can happen at any moment, and it's important to be ready to act quickly, whether that involves evacuating or finding a safe place to stay. For the thousands of Americans living with ALS, situations like fires, floods, or natural disasters can be especially challenging. That’s why having a good plan is so important to keep you and your loved ones safe.

Emergency Preparedness for Individuals Living with ALS

Being prepared for emergencies and disasters is crucial, especially for people living with ALS. Alisa Brownlee, ATP, CLIPP, CAPS, WSP, CEAC/Mastery, recorded the following video to explain how you can prepare for emergencies. Follow these guidelines to ensure you and your loved ones are ready in case of unexpected situations like fires, floods, or hurricanes.

Notify Local Emergency Services

Contact First Responders: Inform your local fire department and other first responder organizations that someone living with ALS resides in your home.
Specify Medical Needs: Provide detailed information about any specific medical requirements, such as the use of a tracheostomy, ventilator dependency, feeding tube, or mobility assistance.
Enable Disability Notices: By sharing this information, the 911 system can add a "disability notice" to the Computer Aided Dispatch (CAD). This alert ensures that responders are immediately aware of the additional attention needed at your residence during an emergency. Your address will also appear on EMS computers during 911 calls for added awareness.

Prepare for Power Outages

Backup Power Solutions: If you rely on medical equipment like ventilators or cough assist devices that require electricity, consider investing in a backup generator with an adequate fuel supply.
Maintain Backup Batteries: Ensure that all backup or portable batteries are fully charged, and tested and that you are comfortable operating them in case of a power loss.
Plan for Safe Relocation: Remember that backup batteries are designed to provide temporary power, giving you enough time to reach a safe location with reliable electricity if an outage occurs.

Register with Your Electric Service Provider

Notify Utility Companies: Contact your local electric service operator to register your household as one that requires electricity for essential medical devices.
Provide Necessary Documentation: Be prepared to submit documentation verifying the medical necessity to ensure priority assistance during outages.
Register in Advance: Complete this registration process as soon as possible, well before any potential disaster strikes, to ensure timely support when needed.

Understand Emergency Shelter Options

Plan Ahead: In the event of a hurricane or severe flooding in our area, consider staying with family, and friends, or at a hotel outside of the evacuation zone before opting for a public shelter.
American Red Cross Shelters: If other options are unavailable, the American Red Cross provides safe shelter locations. Note that cots and blankets are typically provided only after hurricane conditions have subsided.
Food and Dietary Needs: While food is usually available at shelters, specialized items for restricted diets may not be provided. Plan accordingly by bringing the necessary food items with you.
Limitations of Regular Shelters: Be aware that standard emergency shelters may lack the electrical services and additional staff required to support power wheelchairs or other medical equipment needing electricity. Shelters will have typical food (hot dogs, pizza, etc.) and do not have enteral nutrition (tube feeding) options. People using a feeding tube will need to bring their own supplies.

For those who need hoyer lifts or any other equipment to help with toileting, shelter bathrooms will not have those available. People will need to use diapers if they can’t access the bathroom.

Always verify the accommodations available at each shelter before arrival.

Emergency Preparedness