Emergencies and disasters can strike quickly and without warning, forcing people to leave or be confined in their home. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present a real challenge. We recognize how important it is that people living with ALS and their family members have the resources they need to make plans to protect themselves in the event of a disaster. We've assembled the following information and resources to help you and your family plan and prepare for this hurricane season.
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. Make a plan. The following resources should be helpful:
PLEASE NOTE: This website has many resources to help you plan before the storm. PLEASE print all relevant information you may need to access in case of an emergency so you are prepared in the event of lost power or internet access.)
Hurricane Preparedness for People Living with ALS and their Families - Webinar Recording, CLICK HERE to view.
Hurricane Preparedness for People Living with ALS and their Families - PowerPoint Slides, CLICK HERE to view.
Contact your local County Emergency Preparedness office. Ideally, families with significant mobility or respiratory challenges have already “registered” with their local county Emergency Preparedness Office, indicating their specific unique needs in the event of evacuation or the need to proactively move to an ADEQUATE shelter (Please Note: ‘Regular’ shelters may not have the electrical service or additional staff required for persons using power wheel chairs or any medical equipment requiring electricity.)
Find local Florida County Emergency Management Offices here: https://www.floridadisaster.org.
People living with ALS using special equipment in home should already have contacted their local electric service operator to ‘register’ the household as having an occupant requiring electricity for medical devices. This may include providing documentation of disability. This is a proactive activity, and the electric service company may not be ‘registering’ new people if they are already under a “Disaster” operating plan. If you have not yet registered, please do so as soon as possible.
There are numerous tools that can help you communicate with and educate first responders about ALS and what to do with someone they are trying to help. The following tools are available to help:
Medical Information Packet - Please complete online and print (or print and complete) a copy of the Medical Information Packet HERE. This Packet allows a person to provide medical information regarding specific issues related to ALS care, and how YOUR issues can most appropriately be addressed: http://www.alsa.org/als-care/resources/publications-videos/medical-information-packet/
Medical Information Pocket “Z” Card - Another helpful tool is the Medical Information “Z” Card provides a brief summary of critical ALS issues, including a mini-letter board, which can be folded and kept in a wallet. http://www.alsa.org/assets/pdfs/Medical-Information-Packet-ZCard.pdf
Rapid Access (low tech) 81/2” X 11” printable letter board - Print this out, even if you don’t think you will need it: Medical Information Packet Printable Letter board, Rapid Access, Low Tech Communication Tool http://www.alsa.org/assets/pdfs/Medical-Information-Packet-EyeGazeBoard.pdf
Key Medical Information Mobile App - The Key Medical Information app provides medical personnel with critical information to care for a person with ALS during an emergency. In addition to medical dos and don’ts, the app provides a communication board and emergency contact fields for users to reference. The app is available in Google Play and the Apple Store and is searchable by “Key Medical Information” or “The ALS Association”. If you have trouble locating the app, please use one of the below links, depending on your brand of phone:
GO BAG - Be sure to put printed information, medications, extra batteries, unique nutrition, and a Rapid Access (low tech) Communication letter board in your “Go Bag”, which should “GO” with you any time you have to leave the home while under any weather or emergency advisory.
International Vent Users Network: For those who have current respiratory support needs, they may find additional information related to urgent medical care environments from the International Vent Users Network:Take Charge Not Chances: https://www.ventnews.org/tcnc
FEMA ALERTS - Sign up for alerts from FEMA or local weather sources, LEARN HERE. These alerts can be directly texted to a cell phone, a Facebook or Twitter account, or your home phone number.
List of Your Network - 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 including names and telephone numbers.
Emergency Information List: 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.
Medical Information List - 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.
Medication Supply: 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.
Identify Evacuation Routes From Your Location - 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.
Disaster Supply Kit - 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, adaptive equipment, and batteries.
Show others how to operate your wheelchair or other assistive devices.
Keep in mind: 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.
FINALLY, BE INFORMED: There are various web sites and telephone numbers for preparedness:
Hurricane Status: http://www.nhc.noaa.gov/
Prepare for Emergencies Now: Information for People with Disabilities: http://www.ready.gov/sites/default/files/FEMA_Disabilities_R-6_web_june2012.pdf
Preparing Makes Sense for People with Disabilities and Other Access and Functional Needs: http://www.fema.gov/medialibrary/media_records/7028
State of Florida Emergency Website: http://floridadisaster.org
General Shelters By County: http://floridadisaster.org/shelters
Special Needs Emergency Info: http://floridadisaster.org/disability/
Special Needs Information by County: http://www.floridadisaster.org/disability/specialneeds/default.aspx
Special Needs Information for Caregivers: http://www.floridadisaster.org/disability/section2.html
Open Shelters-Status: http://floridadisaster.org/shelters/summary.html
Hurricane Hazard Explanation: http://www.floridadisaster.org/EMTOOLS/Severe/hurricanes.html
FEMA-Apply for Assistance: https://www.fema.gov/apply-assistance & https://www.disasterassistance.gov/
Red Cross-Central Florida
Florida's Space Coast - 386-226-1400 - Brevard, Flagler, Volusia
Greater Orlando - 407-894-4141 - Orange, Osceola, Seminole
Mid-Florida - 863-294-5941 - Citrus, Hernando, Lake, Pasco, Polk, Sumter
Southwest Florida - 941-379-9300 - Charlotte, DeSoto, Hardee, Manatee, Sarasota
Tampa Bay - 813-348-4820 - Hillsborough, Pinellas
Red Cross-North Florida
Northeast Florida - 904-358-8091 - Alachua, Baker, Bradford, Clay, Columbia, Duval, Gilchrist, Levy, Marion, Nassau, Putnam, St. Johns, Union
Capital Area - 850-878-6080 - Dixie, Franklin, Gadsden, Hamilton, Jefferson, Lafayette, Leon, Liberty, Madison, Suwannee, Taylor, Wakulla
Northwest Florida - 850-432-7601 - Bay, Calhoun, Escambia, Gulf, Holmes, Jackson, Okaloosa, Santa Rosa, Walton, Washington
Red Cross-South Florida
Broward County - 954-797-3800 - Broward
Florida's Coast to Heartland - 772-562-2549 - Indian River, Okeechobee, Highlands
Florida's Southern Gulf - 239-596-6868 - Collier, Glades, Hendry, Lee
Greater Miami and The Keys - 305-644-1200 - Miami-Dade, Monroe
Palm Beach and Martin County - 561-833-7711 - Palm Beach, Martin