Experts urge focus on special needs

Experts say both the emergency response and special needs communities are unprepared for disasters.

BY P.J. HELLER | ALBUQUERQUE, N.M. | June 11, 2007


Deaf section for Hurricane Katrina evacuees at the Houston Astrodome.
Credit: FEMA

A resident of a New Orleans nursing home is assisted to a bus going to a shelter during Hurricane Katrina.
Credit: FEMA

First the flood waters came up to the porch of her New Orleans home. Then they flowed into her house. As they continued to rise ever higher, the wheelchair-bound woman was floated toward the ceiling.

She was finally able to get to some steps on a second floor landing as high up as she could get and managed to grab a telephone to dial 911 for help. She explained to the operator where she was and that she needed assistance. The operator's advice was for her to get up even higher.

The woman looked at the telephone in her hand and at the rising water, then told the operator, "'Honey, I can't get me no higher.'"

Tony Cahill likes to tell that story as a way of emphasizing the point that people with disabilities are as unprepared to deal with a disaster as disaster responders are to help those with special needs.

"It's not just a one-way street of emergency managers not knowing about disabilities," said Cahill, a senior research scientist and director of the division of disability and health policy at the Center for Development at the University of New Mexico. "Disability organizations know almost nothing about the emergency preparedness process. The disability community knows so little.

"One of the most amazing things that's been found is just how little personal disaster planning there is among people with disabilities," he added. "And it's not because the materials aren't there . . . but too few people with disabilities use it.'

In Houston, for example, only 500 people have signed up so far this year on a special needs registry for services in the event of an emergency or evacuation. The previous year one year after Hurricanes Katrina and Rita about 3,000 people signed on. In Anchorage, only 400 people out of an estimated 4,000 to 10,000 eligible residents have signed up for the disaster registry in that Alaskan city. Other states and counties offer similar registries for people with special needs to voluntarily sign up.

Joe Laud, a spokesman for the Houston Emergency Center, said it was unclear why so few people had registered.

"We're hoping that the message will still get out there," he said. "We're hoping that people will catch on. It's very important."

Nearly two years since Hurricanes Katrina and Rita put the spotlight on exactly how unprepared both the emergency response and special needs communities are, experts say much still needs to be done.

"I think there's a tremendous awareness of the need," said Carl T. Cameron, president of the Disability Preparedness Center in Washington, D.C. "Most people will talk about it and indicate that they recognize that it's an issue. I think where we still have a lot of work to do is in terms of actually doing something."

Cahill agreed and said what was needed was more dialogue between the response and special needs communities.

"Very few emergency management agencies on the local level have established links with disability organizations," he said. "That leads to some real problems.

"Emergency management communities and disability communities far too frequently do not talk to one another before an event," Cahill added. "They do not share information. They do not work together to share plans . . . The emphasis here is getting local disability organizations with emergency management together when nothing is happening to talk about what the needs are, what the functional supports are."

Waiting until there is a disaster to address those issues is too late, he said.

Scotty Raymond of the San Juan Center for Independence in Farmington, N.M., and a activist for the disabled, said it was essential for the disabled, their caregivers and the response community to work together.

"We must commit ourselves to the obligation of trying to educate and preparing for the next disaster to strike," said Raymond, who has limited mobility due to cerebral palsy. "Whether it be another national disaster or a localized crisis, the direct impact will be greatly multiplied for the disabled if we do not keep the disabled in any and all emergency plans.

"We cannot overlook them," he said. "There's too many of us out there."

According to government statistics, about 19 percent of the U.S. population, or an estimated 53 million Americans, are living with disabilities.

Laura M. Stough at the Center for Disability and Development at Texas A&M University, cited a 2006 study that reported nearly 50 percent of the U.S. population had special needs. Included in that category were the disabled, the elderly, people with mental health issues, the visually and hearing impaired, single heads of households, children 15 and under, and non-English speakers.

"The 'special needs' population is often viewed as a homogeneous group," said the study, Moving Beyond Special Needs: A Function Based Framework for Emergency Management and Planning. "This practice, although understandable, is dangerous given this group’s significant size.

"Lumping groups together and using an ambiguous special needs label translates into vague planning, which results in response failures," it said. "Continuing to use special needs does a disservice to every group included and greatly weakens the chances of planning for specific needs and providing an effective, comprehensive response."

Cameron said that until recently, the emergency response community did not take into account many of the people with special needs and, as the study suggested, viewed the population as being very homogeneous.

"It's only been in the last few years that finally everybody is starting to realize that the population is very diverse," he said.

Stough and others stressed that rather than focusing on the definition of special needs, attention needed to shift to the specific support needs of those individuals, including such things as transportation, communication, special diets, service animals, medications and mobility.

"All of these things must be addressed," said Raymond, who spent eight weeks in New Orleans and Dallas with the American Red Cross after Katrina. "All these things must be considered."

"By thinking about their support needs, that corresponds more directly to what you need to do in order to support people with disabilities during a disaster," Stough said.

Emergency response organizations that look at a disability as a condition or a diagnosis "are running into everlasting difficulty in terms of emergency management, services and procedures," Cahill said.

Rather than the diagnosis being the critical issue, Cahill said emergency response groups should look at the concept of a functional definition, "which simply means what kinds of assistance is necessary for an individual to function independently or as independently as possible in an evacuation, response or the recovery phase."

In Florida, Gov. Charlie Crist has announced plans to construct three hurricane shelters for people with special needs. He also said he planned to appoint a Governor's Commission on Disabilities to focus on legislation, policies and other issues that impact people with disabilities.

Experts stressed that the disabled should be brought into disaster response planning.

"My feeling is that we need to be more active in terms of actually integrating people with disabilities and special needs into other organizations, making it a part of the operations," Cameron said.

Cameron and others said Katrina helped drive home the point that emergency response needed to better focus on people with special needs. In New Orleans alone, 21 percent of the population nearly 250,000 people described themselves as disabled in the 2000 Census.

"I think it (Katrina) has made a real difference," Cameron said. "We all saw it. We saw it on CNN. We saw real people, people that were too heavy to get into boats, people who didn't know where to go, people who couldn't figure out how to do things, elderly people who couldn't because they didn't have the physical capability of doing things. We saw it in living color.

"All of a sudden we saw this was real people and they were very different from a lot of the people watching TV," he said. "They didn't respond the same way. Looking at the convention center down there [in New Orleans] was an eye opener for a whole lot of people. These people didn't think the same way. They didn't think about the issues in the same way as somebody in Kansas thought about them. All of a sudden you had to deal with that. And that’s helped a lot to open our eyes. We have to do it together, we have do it a lot of different ways."

 

Related Files:

Houston Registry Form (2006).pdf


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Related Links:

Disability Preparedness Center

Texas A&M Center of Disability and Development

Report: Moving Beyond 'Special Needs'

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