Emergency Preparedness for People with ALS

Emergencies and disasters can strike quickly and without warning, forcing people to leave or be confined in their home. For the thousands of Americans with ALS, emergencies such as fires, hurricanes, floods, and other acts of nature present a real challenge. It is important that people with ALS and their family members make plans to protect themselves in the event of a disaster. This needs to be addressed not only at home, but also when away from home, such as at work or on vacation.

*IMPORTANT NOTE: If you are hospitalized and have difficulty communicating, you have specific protected rights under the law. Please go here to learn more about how to ensure that your personal and medical needs are met when in the hospital if you are unable to communicate.

First Step: Make the conscious decision to be prepared. It takes work, but it is worth it! The more you do, the more confident you will be that you can protect yourself when the time comes.

Second Step: Make a plan. The plan should include:

1) Know what kinds of disasters (especially weather/natural disasters) could happen in your area and consider what your environment might look like after one occurs. Sign up for alerts from FEMA or local weather sources. These alerts can be directly texted to a cell phone, a Facebook or Twitter account, or your home phone number.

2) Complete a personal assessment and personal support network of family, friends, relatives, neighbors, roommates and co-workers who could assist you at a moment's notice. Keep this list handy at all times.

3) Make an emergency information list so others will know who to call if they find you unconscious, unable to speak, or if they need to help you evacuate quickly.

4) Compile a medical information list that contains the names and numbers of your doctors, your medications, dosage instructions, and any existing conditions. Make note of your adaptive equipment, allergies, and any communication difficulties you may have. It is recommended this be on paper instead of a computer data stick because there may not be electricity to run a computer to retrieve this information.

5) Keep at least a seven-day supply of medications on hand. Ask your doctor or pharmacist what you should do if you cannot immediately get more.

6) Identify evacuation routes and safe places to go during a disaster. Remember that in the event of a natural disaster you may be under mandatory evacuation. Should this occur and you don’t have accessible transportation, call your local police department and inform them of your situation.

7) Keep a disaster supply kit, also known as a “go bag,” in your home, car, workplace or anywhere you may spend your time. Include such items as food, water, a first aid kit, letter or picture board, adaptive equipment, and batteries. If the person with ALS cannot speak, attach a small recorder (like those found on key chains) on the outside of the bag. The recording should say something like “My name is ____. I cannot speak. I communicate by ______. In case of emergency, please call _____.

8) Show others how to operate your wheelchair or other assistive devices.

9) Keep in mind that during an emergency, you may need to explain to first responders and emergency officials that you need to evacuate and shelter with your family, service animal, caregiver, or personal assistance provider so they can provide the support you need to maintain your health, safety and independence.

10) If you cannot verbally communicate, make sure you always have a Rapid Access Communication System in place. This could include a letter board, laser pointer, or other communication system that does not rely on electricity. You can find more information at www.patientprovidercommunication.org.

The third step is to be informed. There are various web sites for preparedness:

Prepare for Emergencies Now: Information for People with Disabilities