My eldest daughter participates in Special Olympics. At one of her practices, parents around me opened up about their greatest fear: what would happen when they died or couldn’t care for their adult children with intellectual disabilities?
One mother didn’t know anyone she trusted to care for her son. Another worried because her husband didn’t want to think about writing a will. Many wondered how to pay for increasingly costly medical expenses.
Yet none of us pondered what we would have done if a disaster that day had separated us from our children. How would we ensure first responders could help a family member who can’t answer “Where do you live?” or “What hurts?”
Shelly Robertson, of American Fork, Utah, has considered that eventuality. One of her children is extremely allergic to dairy products and another is autistic.
“My biggest concern is what happens to my kids if something happens to me and [my husband],” she said.
Ready.gov suggests three steps people with special access and functional needs and their families should take.
First, make a kit. In fact, Ready.gov suggests you make two kits: one for sheltering in place and another, lightweight one, if you need to evacuate.
“It is crucial that you and your family think about what kinds of resources you use on a daily basis and what you might do if those resources are limited or not available,” Ready.gov said.
Ready.gov lists supplies you might need here.
However, add supplies based on yours or your family member’s individual needs.
If your insurance will allow it, keep a few extra days’ medication on hand. If not, Robertson keeps her family’s medication near the front door so they can grab it on the way out. Plan for medicines that require refrigeration.
Pack appropriate food. Account for family members’ food allergies and food likes and dislikes. Remember comfort snacks like small candies for behavior concerns. Robertson included dairy-free, easy-to-clean food that her children like, including applesauce pouches and New Millennium emergency bars.
Robertson also keeps chargers for her children’s tablets, because the tablets have movies and games to keep them occupied in chaotic situations.
Carry insurance cards and information about all your assistive devices, like serial numbers and manufacturer’s phone numbers. Label everything. If you require powered devices, be sure to have a way to charge them or a backup device like a manual wheelchair. My daughter required breathing assistance overnight for many years. When we went on vacation, we took her huge machine (nicknamed for a Star Wars robot), but we also took oxygen canisters. We kept a sign on our door for first responders indicating oxygen in the home.
Ready.gov has more information for other needs here.
Second, make a plan. Then, share it with family, friends and emergency responders.
Plan for all sorts of contingencies: if you’re separated when disaster strikes; if you need to shelter in place; if you need to quickly evacuate. Arrange for helpers and teach them how to deal with your needs. Robertson is including a family photograph and information about her children’s special needs in each child’s emergency backpack. She worries because her autistic son wanders.
“How do I pass on the fact that my kids have special needs? I know what to do. Does someone else know what to do?” she asked.
Third, be informed. Keep a portable radio. If you or a family member struggles to communicate, carry laminated cards with common phrases and pictures.
If possible, get involved in community emergency planning.
“People with disabilities often have experience in adapting and problem solving that can be very useful skills in emergencies,” Ready.gov said.
At the Special Olympics practice where parents were talking about planning for their children, I had to leave mid-conversation. A group of rugby officials started practicing, and their whistle-blowing was driving my daughter into a panic. I keep shooting headphones in my car because she’s sensitive to sound, so I was quickly able to appease her. Emergency preparedness comes in handy even when there’s no emergency.