Disaster preparation for special needs families: 8 simple things to do

It's that time of year when I worry about hurricanes. It's impossible not to, given that Sandy temporarily displaced us, Irene destroyed our basement and we're smack in the middle of Atlantic hurricane season.

September is National Preparedness Month, sponsored by the Federal Emergency Management Agency (FEMA). As much as the mere basics of day-to-day living consume me, I know we need to  prepare for the worst, especially as a family that has a kid with special needs. I had few clues about exactly what to do until I spoke with Marcie Roth, director of the Office of Disability Integration and Coordination for the Department of Homeland Security/FEMA. Marcie, in fact, has insider scoop: She is is mom to two children with disabilities, "and proud of it," she says.

We talked about simple things parents could do to make sure their families are ready for disasters, whether a hurricane, tornado, flood or man-made one. As she said, "Parents think that they can leave emergency preparation to the experts, or that it's too hard to adequately prepare. But it is entirely possible to take steps to be well-prepared." Check out her tips, and download the government's Family Emergency Plan PDF, a simple form for recording critical info with wallet-size cards to fill out.

1. Have an emergency stash at home.
Besides the basics—water (assume one gallon per person per day, with a three-day supply), a flashlight and a battery-powered radio—you want to have extras of hygienic products (like wipes, diapers and feminine hygiene stuff), foods (nursing supplies, formula, pre-packaged baby food and canned food, dried nuts and other non-perishables), medical needs (fever reducer, rash ointment), comfort items (like stuffed animals) and activities for kids (books, puzzles games). If you're like me, you might also require an emergency stash of chocolate. I keep all this stuff in a gigantic plastic bag in our basement.

2. Prepare a go kit.
Consider keeping it in your car. The best way to put one together: "Take inventory of what you use on a daily basis, from the minute you get out of bed in the morning till you go to bed at night," says Roth. Make a list on your smartphone or a notepad. "Depending on your family's and children's needs, there may be stuff a lot of other people wouldn't need in an evacuation situation to take to a shelter—and for your family, that could make all the difference between being able to maintain health, safety and independence and needing to be in a much more medical setting." Some families, she notes, "might need a whole lot of Velcro! It could make dining utensils work for a child if adaptive ones aren't around. Or if a child has autism and that child spends a lot of time with electronic equipment or toys, you'd want to make sure you have lots of batteries, and crank charger if that's an option—things that will make it possible for kids to soothe themselves. Or a child with sensory issues might need seamless socks and noise-blocking headphones or rope and sheets to create a private area in a shelter."

3. Let your child help plan
"It's really critical to engage your child to plan with you, so it's not just for him," says Roth. "Putting stuff into a kit can help give a feeling of safety and security. And it helps kids begin to share responsibility for family safety."

4. Make plans for meds 
"This is true for both kids and adults, something I personally spend a lot of time focusing on," says Roth. "I take thirty meds a day, some of them life-sustaining, and one needs to be refrigerated." In case there's no power, you want to have a printout with lists of medications and prescriptions and a flash drive with the info (keep them in your go-bag). "I email updates to my gmail account, so I can access them from there," says Roth. "Given that insurance companies typically won't allow you to have an 'extra' amount of meds, you could build up a buffer! Say every couple of years you or your child have a procedure and don't need to take meds that day, or you otherwise skip a day or you have extra left over from a leap month. Start to build up meds! But you don't want to just collect them in a container, or they'll expire. I regularly add a new day of meds and use up one dose. Replenish it as best you can."

5. Make plans for medical equipment, supplies and assistive devices, too
"If your child uses any or all of these," says Roth, "you'll need a plan for bringing what is absolutely needed, and making do with what isn't critical. For instance, what is your plan for evacuating with your child's power wheelchair, augmentative communication device, bath chair or nebulizer? Don't forget chargers! And if you absolutely can't bring the 250-pound power chair, do you have a folding or lightweight manual chair?" Even if you have to leave everything behind, she continues, "if your child has a cushion or molded seat that helps them maintain sitting or prevents pressure sores, bring it. And if pressure sores are a concern, get a piece of egg-crate cushioning for your go-kit to use over a cot, on the floor of a shelter or even a hotel room or relative's home. If your child uses a feeding tube or catheter, bring a supply as you may not have access at all, or access to the type or size that works best."

6. Identify emergency shelters in your area 
Every town has some kind of Office of Emergency Management, so contact yours for information and check out the emergency shelter info at DisasterAssistance.gov. Consider dropping by your local shelter with your child, so he won't be as scared if and when your family needs to go there. It's also good to inform experts about your child's special needs. For example, if you have a child with sensory issues, "while you won't be able to reduce the din of the crowd at the shelter, having a quiet zone cordoned off by a sheet could help reduce visual stimulation," notes Roth. Consider getting involved in planning, too, she urges: "As parents of kids with disabilities, we are absolute experts in problem-solving, thinking on our feet and making significant changes unexpectedly. They need us at their planning tables!" Note: While there's no harm in identifying yourself to the local electric company if you have a child with medical equipment that requires power, "you need to be well aware that is not a reliable solution," says Roth. "You might think you're on the list for priority restoration, but what if that priority is every neighborhood?"

7. Ask how your child's school or childcare are prepared
Inquire whether they have a written plan for evacuating kids and moving them to safe locations in event of disasters and a written plan for notifying parents in case of emergency and reuniting parents of children. If your child is an inclusionary program, ask about a written plan for children with special needs. Then make sure they have the materials needed. "Our school tells us to send in a day's worth of stuff," says Roth. "That's great for bad weather and one potential overnight, but we need to be thinking far longer. I personally prepare for two weeks! If your child needs life-sustaining things, you want to make sure all the environments your child is in are also adequately prepared."

8. Consider volunteering a young adult
Feeling Safe, Being Safe (FSBS) provides tools and resources for young men and women with intellectual and developmental disabilities to participate in personal, family and neighborhood emergency preparedness, and also trains leaders as certified preparedness trainers. "When youth get involved, they get their parents to be more prepared, too," says Roth. "A young person with autism might have a particular job—say, going to the community center to do a task. And then, if there's ever a need to evacuate, he will be in a familiar setting."

One last FYI: A free app called Group Me lets you instantly conference or text a pre-selected group of family and friends, to make sure everyone's safe.

For more information, visit FEMA's Ready site and the Emergency Preparedness section on disability.gov. The Disaster Resistant Communities Group has an excellent video on preparedness for families of kids with special needs.

UPDATE: Save the Children has free printable Contact Cards you can fill out with information about your child (including allergens) and key contact info, should you ever become separated during an emergency.

This is the second post of a series on disaster planning for special needs family that I'm running this fall. See the previous post to find out how your state's schools and daycare centers rate for disaster planning.