Had Shandie Reed of Joplin been alone in her house last May 22, it’s unlikely she'd be alive today.

But Reed’s father was there to go outside and see why the sirens were sounding. When he spotted the tornado in the distance, he ran inside and ushered his daughter, wife and two young nieces into the basement.

On her own Shandie Reed, 28, could not have safely made her way downstairs. Her walking ability is impaired due to the juvenile rheumatoid arthritis, which has fused her ankles and wrists, limited movement in every joint and necessitated three hip transplants.

“My dad just grabbed my arm and dragged me down the stairs and tried to push me to ground,” Reed said.

The next thing Reed knew, she was on the other side of the basement, buried under the debris of another house and screaming for the noise to stop.

“It sounded like a jet engine was on top of my head,” she said.

Though their house was demolished, miraculously, everyone was OK, although her mom required a few stitches in her head.

And if her father hadn’t been there? “I would’ve just dived down the stairs and prayed,” Reed said.

‘Nobody’s going to come save you’

One hundred and sixty people died in Joplin’s category EF-5 tornado, making it the seventh most deadly in U.S. history. That Reed and her family survived was due to sheer luck, she said. They had no plan for shelter, no emergency kit and a history of ignoring sirens.

For people with mobility issues, it’s especially critical to have a plan, according to Guan Hollins, chief operating officer of Paraquad, an agency promoting independence for people with disabilities. Paraquad and other organizations are trying to get that word out to centers for independent living in the bi-state region.

One of the most important facts people with disabilities should know is that waiting for rescue is not an option.

“Nobody’s going to come save you, so you need to be prepared, yourself,” Hollins said.

Even those who have an attendant come in every day need to plan for how to face an emergency alone.

“Your attendant may not be able to come to help, and the emergency workers aren’t going to be able to come to your house to see if you’re OK,” Hollins said. “But if you have a plan you’ve created and worked out with an attendant or agency, you’ll know a place you can get to, to hopefully be safe.”

When it comes to evacuation, people with disabilities are “on the bottom of the totem pole,” according to David Newburger, commissioner on the disabled in St. Louis city.

The reality is that in a fire, first responders first make sure everyone’s evacuated, and only then do they count to make sure no one’s left inside. By that time, the building may be completely ablaze or destroyed.

“The guy on the fourth floor in a wheelchair is sitting there waiting for all that to happen,” Newburger said. “Is that right? Sure, because triage says you protect the greatest number of people you can as quickly as possible.”

Make a plan, make a kit

Most people, including the roughly 200,000 with physical or other disabilities in St. Louis County and city, don’t have an emergency plan or a stash of supplies. Agencies such as Paraquad that serve the disabled train their clients, but only a small percentage in the disabled community are connected with such organizations.

Guidelines for emergency kits and plans can be found on the Red Cross website. Additional guidelines for people with disabilities include the following suggestions by Newburger and Hollins:

• Have a generator on hand if you’re on a ventilator or otherwise depend on battery-driven equipment.
• Store enough fuel to power the generator for several days.

• Have family members, neighbors (or at work, coworkers) prepared to help you leave, if necessary, by evacuation chair or other means.
• On your list of prescription medicines, include dosages and doctors’ contact information as well as information about portable assistive devices such as magnifiers, hearing aids and communication equipment.
• Store assistive devices where you can easily find them in a disaster.
• Include food, water and identification for service animals.

A plan doesn’t have to be elaborate, as long as you have one. Newburger, a paraplegic living on an eighth floor, knows just what he’d do if an emergency forced him to leave.

“We don’t have an evacuation chair but we have some front steps and some back steps and I can crawl down the steps if I have to,” Newburger said.

Preparedness vs privacy

The city of St. Louis has a registry of people with disabilities, older adults, people for whom English is not a first language and others who might need special attention in a disaster. St. Louis County is working on one.

Having a roster makes it possible to send robo-call warnings or updates about shelters and other services during a disaster. But there’s a big problem with such a list, according to Newburger.

“We’ve not marketed this because of privacy concerns,” Newburger said.

Under Missouri law, information collected by the government is available to the public. Privacy laws protect clients of Area Agencies on Aging, so Newburger’s office is encouraging those organizations to list their clients. But people who are disabled, along with others who are not served by those agencies, risk their private information becoming public if they sign up.

Efforts are underway to change the law. But as it stands, the risks to those on the list include being targeted by a direct mail campaign or, worse, a burglar. Even if those scenarios don’t play out, other privacy issues should be considered.

“Many people with disabilities don’t talk about them more than they have to; for some people, it’s embarrassing to admit they have a disability,” Newburger said.

Living with PTSD and no basement

On top of the disability caused by her arthritic conditon, Shandie Reed now suffers from post-traumatic stress disorder. Even though she takes anti-anxiety medication, thunder and lightning can still trigger a panic attack.

Following the destruction of their house last spring, and after a few weeks of what she called "couch surfing," Shandie and her family moved into her aunt’s house, waiting on completion of their new home -- donated by a church -- hopefully, in July.

The three-bedroom, 2,300-square-foot home has a special feature: an inner “safe room, reinforced with steel and concrete.” Her parents have already gathered the weather radio, water and other emergency supplies needed to stock it.

In the meantime, Reed worries because her aunt’s house has no basement. The family’s current emergency plan for tornado or fire is to head out the back door to a ditch about 20 feet from the house, something Shandie feels she can accomplish with assistance or alone.

This time last year, she and her family wouldn’t have had even this simple strategy in their thoughts.

“It would never have crossed my mind,” Reed said. “You just don’t think a tornado is going to hit you.”