How to make sure you, your family and caregivers are prepared for the unexpected
Emergency situations present real challenges for individuals affected by neuromuscular diseases. For example, in February, when the Oroville Dam threatened to fail in California, downstream residents were given just one hour to leave their homes. Local news reported that a resident with a disability was left behind for hours due to lack of accessible transportation.
By preparing an emergency plan, you’ll be in the best position to protect yourself, your family and personal care assistants when the unexpected happens. Vance Taylor, chief of the Office of Access and Functional Needs in the California Governor’s Office of Emergency Services, recommends starting your plan by making sure you have what you need whether you have to evacuate or stay put.
• A prepared go-bag for each person that includes medication, medical information, toiletries and contact information for family, friends and neighbors. The information can be kept on a thumb drive. Check it for accuracy every six months when you change your smoke alarm batteries. If you have room, pack playing cards, coloring books, etc., to help pass the time while you’re waiting in a safe place.
• A list with your go-bag of last-minute items you need.
• A plan to get out of your home and get to a safe place. If you need help, keep a list of at least four different people you can call on, since not all are likely to be available when you need them.
• A list of accessible emergency transportation and shelter options. Call your local emergency services department and ask them about evacuation plans for individuals with disabilities and amenities at local shelters. For example, where can you go if you need an accessible bathroom or power supply for a wheelchair or respirator?
Sheltering in place
• Bottled water (three days’ worth for each person)
• Non-perishable food
• Flashlights and extra batteries
• Radio or computer for news and official updates
• Ability to charge phones and power necessary medical equipment. You may need a generator or be able to connect your computer battery to small device chargers with a USB cable.
MDA volunteer Frances Kiperman has been active in emergency response since she was 19 years old. She currently serves as a Community Emergency Response Team (CERT) volunteer in her local community. Even though myasthenia gravis (MG) has slowed her down, she is still active in teaching CERT skills. “As for me, I have two go-bags,” Kiperman says. “One has all the necessary essentials if I had to stay in a shelter, and I keep this one in my hallway closet and update my kit right before hurricane season. I also keep a small go-bag in my vehicle.”
There’s a very human desire to hope that the situation won’t get as bad as “they” say. If you are told to evacuate, “sooner is better,” says Taylor, who was diagnosed with muscular dystrophy as a child and uses a power wheelchair. From a comfort standpoint, you’re likely to get better lodgings if you’re one of the first to arrive. From a safety standpoint, having complex physical needs often means getting out takes longer than it does for others. And, as Taylor warns, when you’re dealing with the unexpected, “you have to accept that things are going to go wrong.”
Once an emergency or disaster strikes, it’s too late to plan. Take time now to ensure you and your loved ones have the very best chance of staying safe and sound.
Donna Albrecht is a writer and speaker in Northern California.
Make Your Family Emergency Plan
In the event of a fire, gas leak or other emergency, you, your family members and caregivers may need to leave your house immediately. Create a Family Emergency Plan that determines which people are responsible for dependent family members and pets. Don’t forget these two essentials:
Get together. Designate a nearby (like across the street) meet-up spot to be sure everyone got out of the house safely. But disasters don’t always wait for your family to be together. In the case that some of you are at work, school or elsewhere, designate a meeting place like a local church or school. Also, have a designated check-in person — perhaps an out-of-the-area family member — who can be called if some family members are not able to get to the meeting spot right away.
Practice. Sometimes the best laid plans don’t work as expected. Vance Taylor, chief of the Office of Access and Functional Needs in the California Governor’s Office of Emergency Services, and his family designed what seemed like a fail-proof plan to evacuate their home. When Taylor called an emergency practice, the kids, pets and his wife gathered across the street — but the plan hadn’t ensured someone was responsible for getting Taylor and his wheelchair out. Giving your plan a run-through is the best way to work out the kinks.
Watch and Learn
MDA’s Emergency Preparedness Webinar for Individuals with Disabilities explores how important it is for individuals with disabilities or with access and functional needs to create an emergency plan for themselves and their families so they are prepared and empowered to handle any kind of emergency or disaster. Vance Taylor, chief of the Office of Access and Functional Needs in the California Governor’s Office of Emergency Services, led the presentation.
MDA Is Ready to Help Families
Following local weather emergencies, MDA actively tries to reach all individuals it serves in the affected areas to assess their well-being and offer assistance. If you have evacuated to a different area and need MDA services (including help with durable medical equipment or visiting an MDA Care Center), find the nearest MDA office by going to mda.org and entering the ZIP code of your current location. Also, be sure to contact the MDA Resource Center at 800-572-1717 or firstname.lastname@example.org. MDA’s trained resource specialists are available Monday through Friday, 8 a.m. to 5:30 p.m. Central time. They typically are able to answer questions within 24 hours of a request (or on the next business day). Find more resources on MDA's Emergency Resources page.
Looking for More?
Be sure to visit these archived Quest articles to learn more about preparing for emergencies: How To Get Personal Care Assistance in Emergency Shelters and Floods, Emergency Prep and Me.
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MDA Resource Center: We’re Here For You
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 800-572-1717. If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.