Approaching Inclusive Disaster Planning

From Service Dog Training

Coordinating the expertise of disaster planners and disability advocates

This is the text of a talk given at CrisisCamp Philadelphia in October 2009 examining the relationship between disaster preparedness personnel and the disability community. It discusses how disaster planners and disability advocates can enhance their relationships in the disaster planning process, and how disaster planners can use available tools and technologies improve their communication with the disability community.

The first thing both disaster planners and disability advocates must realize when approaching inclusive disaster planning is that everyone has the same goals, namely that in a disaster situation everyone wants as many people as possible to survive with a minimum of morbidity and to minimize the overall effects of the disaster on the community.

The friction sometimes felt between disaster planners and disability advocates during preparation and planning lies in the fact that each group approaches their policy development from a different perspective. First responders are primarily concerned with prioritizing; their goals in disaster planning are focused on how to save the most salvageable patients with the resources which are likely to be available in any given situation. The primary focus of the first responder and disaster planning community is on the here-and-now…what equipment and training do we have available right now and how do we utilize it to ensure maximum survival.

Disability advocates and the disability community are concerned, justifiably so, about discrimination in disaster situations and being considered lower priority patients simply because of their disability. The primary focus of the disability community tends to be equality and the long term effects of disasters on the disability community…how will a person manage after a disaster if no effort is made to evacuate their $30,000 wheelchair with them?

Disagreements and misunderstandings between disaster planners and disability advocates often arise because these groups of professionals tend to speak different languages, one of priority and the other of equality. All too often, these groups lack shared experience; very few experienced disaster planners and first responders have a disability, and very few people with disabilities have the background and training of the disaster planning professional. Disability advocates often do not understand the sometimes harshly practical reasons behind disaster planners’ decisions, and disaster planners do not understand the daily discrimination and challenges faced by the disability community.

This issue can be illustrated by a quick case study on a fairly recent break down in communications between disaster planners and the disability community. When the pandemic flu triage guidelines were released in May of 2008, I skimmed them and saw nothing shocking. They seemed to me to be essentially an extension of generally accepted disaster triage guidelines tailored for a pandemic flu situation, however the disability community saw these guidelines through a very different lens. The breakdown occurred, as if often does, when the triage guidelines were filtered through the media before being received by the disability community. Needless to say, the media sensationalized the guidelines and only released the parts that were shocking. The entire report, as a journal article, is not easily accessible to the general public. As far as I can tell, no one in the disability community made any attempt to reach out to the disaster planning community, and vice versa.

From the AP article: “…hospitals should designate a triage team with the Godlike task of deciding who will and who won't get lifesaving care…Those out of luck are the people at high risk of death and a slim chance of long-term survival. But the recommendations get much more specific, and include:

• -People older than 85.
• -Severely burned patients older than 60.
• Those with severe mental impairment, which could include advanced Alzheimer's disease.
• Those with a severe chronic disease, such as advanced heart failure, lung disease or poorly controlled diabetes.”

Now we have the reaction of the disability community as seen in these three representative quotes:

Rebecca Swan @ JFA Blog: “Nobody gets to play God here and get by with it. People ought to prepare for a pandemic by working on eliminating the cause of it - not by deciding who to throw over the side of the boat.”

Kevin Frindik @ JFA Blog: “OK, I know the Nazi Comparison is over-used, but who doesn't remember they sent the infirm up the smokestacks first for "humanitarian reasons", to end their "un-needed suffering".”

Gatogorras @ Age Of Autism: “I remember that triage announcement made last year about how, in the case when hospitals might be overrun in a pandemic, children and adults with cognitive disabilities could be refused medical care, presumably in favor of "normal" children and adults.”

It is interesting to note how the disability community assumes they are considered less worthy of life-saving care by the emergency community than the rest of the public. It is clear that instead of interpreting these guidelines as something that would ensure everyone got equal treatment, as they were intended; the disability community read these guidelines as giving emergency responders the right to decide who had a life worth saving and sanctioning the refusal of care based on disability.

How did the emergency prep community respond to these misconceptions? They didn’t. No effective communication took place between the general disability community and the disaster prep community. Despite a fairly strong response from the disability community, each group communicated only within itself.

Why does this matter? Public opinion can make the difference between a disaster situation being a stressful, intense, but controlled scene, and out of control chaos. A first responder will not find cooperation from a community that thinks the responder is trying to kill all of them. Since estimates have shown that as many as 10% of Americans live with a disability, this community comprises a large segment of the population. Once you factor in the family and close friends of people with disabilities, it forms a huge segment of the population the disaster response community cannot afford to alienate. What’s to do then? It is essential for disaster planners and disability advocates to consider the cultural differences between the two communities when sitting down to work on disaster plans. This can be difficult because of the historical lack of communication between the two communities.

There are certain predictable problems that tend to happen when these two diverse groups try to coordinate disaster planning. Often both groups lack specific, defined priorities, or have only vague priorities to guide their planning philosophies. Both groups also tend to stick to their guns on issues important to them and refuse to consider any other viewpoint.

Here are a few tips for both disaster planners and disability advocates when approaching the issue of inclusive disaster planning: -Do your homework before meeting, and insist the other group prepare effectively as well. -Always be willing to explain why something is the way it is. Just because something has always been done one way is not a sufficient reason to keep it that way. -Find where you actually disagree with the other group and which disagreements are simply differences in terminology or a breakdown in communication. -Everyone must be willing to listen.

Once plans have been put into place, the disaster planning and disability communities still must be responsive to the public response to published policies. It is important for the disaster preparedness community to watch and listen for negative reactions to their policies. It is important to word things as unambiguously as possible. If the purpose or intent of the policy has been sensationalized or distorted by the medial, make effective use of press releases directed towards organizations with large audiences in the target populations. As in almost all things these days, the internet can be a disaster planner’s best friend or worst enemy. The disability community has a huge internet presence, and it is important for the disaster planning community to effectively use this medium to reach the disability community. The disaster planning community must make use of all the available online mediums, including blogs, facebook, and twitter, or whatever else becomes available.