We don't always know what people with disabilities need - but they do.
"When the power went out, I called 911 and they wouldn't come and get me," complained a disabled man to JoAnne Knapp.
That's because it's not an ambulance crew's responsibility, she explained. But his neighbor or a buddy should have helped him, she said, and as emergency preparedness coordinator for the Maryland Governor's Office for Individuals with Disabilities, she's out to spread the word.
"One thing at least some disabled people don't understand is that 911 is not going to come and get them unless it's a life-or-death matter," she said. "We need to set up a network - a neighbor-helping-neighbor network - that puts in place a plan on how to get that person across town if they need to evacuate."
Knapp wants to create a communications network for disabled people, she said, "through training that would encourage individuals with disabilities to become volunteers within their communities and talk about preparedness."
Knapp spoke Friday at the Maryland Voluntary Organizations Active in Disaster (VOAD) quarterly meeting. A VOAD is a coalition of faith-based and community-based groups that respond to both short- and long-term needs in the wake of disasters. VOAD chapters are in place in the majority of states, with a national umbrella VOAD that links them together.
Knapp wants to get more disaster responders involved in helping disabled people prepare for disasters. "What I'm talking about is a buddy system. It doesn't need to be complicated."
The idea is to encourage disabled people to help their peers - and themselves - before and during a disaster. "Let's face it," Knapp said. "We don't always know what people with disabilities need - but they do. They are survivors.
"Most people with disabilities want to be empowered. They will take that ball and run with it."
More awareness among businesses and communities would also help, she added. "Let's say my business has five floors. How am I going to evacuate people from the fourth floor?"
Working with the National Organization on Disabilities (NOD) and other agencies, Church World Service, United Church of Christ (UCC), Lutheran Disaster Response, and other faith-based response groups have been actively developing ways to better prepare disabled people for disasters.
A survey by NOD found that 58 percent of people with disabilities said they do not know whom to contact about emergency plans for their community in the event of a terrorist attack or other crisis.
It also showed 61 percent of people with disabilities said that they have not made plans to quickly and safely evacuate their home. And, among those who are employed full or part time, 50 percent say no plans have been made to safely evacuate their workplace, according to the survey.
Rita Fiero, a UCC volunteer, is personally trying to spread the word as much as possible. Fiero, disabled herself from a spinal injury in a car accident, said her main concern is making sure first responders have proper training in order to work with the disabled.
"There are such holes in the delivery around the response in disasters to people with disabilities," she said at a past national VOAD meeting. "Everyone's attitude is, 'Somebody else is doing that kind of education.' Everyone thinks they know everything about disabilities, so why should they attend a workshop? What we don't have is the two sides talking to each other." In seminars with emergency workers, Fiero has seen where the gaps in practical knowledge are. When she asked a class how a person on a respirator should be evacuated, the only response she got was, "I never thought about that."
It's not a new problem, she said. Her first personal experience was in the early 1990s, when she heard of a disabled man who was evacuated from his home during a flood. He was forced to leave his lifesaving medication behind. But after he was evacuated, workers realized they had a serious problem on their hands, because the medication was not easy to come by. Eventually they got it from a hospital in Pennsylvania.
All that trouble and worry could have been avoided, Fiero said, if first responders had the training to know that the "leave everything behind" rule had a definite exception in this case. "This is something that has haunted me," she said. "Knowing that stuff is not getting done, that nothing is getting to the people who need to know it the most."
With funds from NOD, Knapp is working with other experts in the field to develop a national conference on the subject, to be held in September. "We are still forming the agenda," she explained.
Regional conferences will also be held this fall.
Knapp has been working with governmental and private organizations on emergency preparedness for individuals with disabilities.
In a couple weeks, the Maryland Governor's Office for Individuals with Disabilities will officially be renamed the Maryland Department of Disabilities. Knapp, whose efforts have been funded by grants, will become a state employee.
"We need to get the message out about this important issue," she said.
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