PREPAREDNESS, THE ESCALATOR,  AND YOU

BY LAURA GEORGE, EMDL

A WAYS TO GO: "While emergency preparedness may not yet be 100% accommodating of everyone with a disability, I still remain hopeful that emergency preparedness and response will continue to evolve in a positive direction."

How do you help a person in a wheelchair go up an escalator? For those of you reading this, the answer is obvious. Yet, it was actually a question I had to ask at a shopping mall years ago. The topic of emergency preparedness is much like an escalator. There are processes, safety concerns, and appreciation for its creation.

Yet, emergency preparedness for persons of all ages and types is much like this escalator question. The question will remain unchanged, regardless of the season, although our approach to it may need to be forever evolving.

When I first brought up the topic of emergency preparedness, back in 2006 at a hospital discharge planning for my husband new to paralysis, the team had no answers for hurricane preparation. I was told to abandon my spouse because he was disabled while we were expecting our first child. Then, politicians, non-profits, medical professionals, neighbors, and more were called, in the hopes of receiving a better answer. No matter who I called, the answers were always the same: "We don't have time for him;" "We have no room for him;" "In a disaster, people like him take time from others who really need assistance;" and more. It hurt so deeply to know that society could be so mean, especially having been brought up with the concept that all life is created equal and worthy.

The hurt turned into anger (Never mess with a pregnant mother!), and I wondered what I could do to change those thoughts. The first call went to a well-known spinal cord support organization where I asked them what they were doing to address the topic that I could offer support for. Of course, I had to tell them my story. "But you are in Florida! How can you tell this story?"

"But you are in Florida! How can you tell this story?" "I know. I am embarrassed. What did I do that was wrong?" I quickly learned that I did not do anything wrong. Instead, I learned we were subject to indifference, ignorance, and lack of edu cation, all because my husband was paralyzed. Very quickly, I realized it was important to find the words to raise awareness, and I did that by attending any meeting I could find in my community addressing the topic and asking questions.

• What are your plans for people in wheelchairs who have pregnant spouses and need to seek shelter?

The people in wheelchairs take too long to take care of and they must be left at home.

• What assistance do you have for people in wheelchairs at the shelter?

We have limited assistance, and their caregivers are not allowed to come with them. No, we don't help them into their cots.

• How long does the registration process for your "special needs" shelters take?

Six months. That bypasses an entire hurricane season.

• What do we do for the current season until formally registered?

Get prepared, like everyone else does.

Not letting my anger get the better of me, I changed course and realized that if this was happening to my family, there were many more out there. Advocacy would become important. Meetings became a podium to voice my questions and concerns publicly. Attending the community emergency preparedness meetings, and political forums, would present important opportunities to voice questions and learn that the responses would be met with glares, stares, and fears. For the next several years, I met with local, county, state, regional and national organizations on both sides of the discussion, especially with first responders and representatives of the disability community. At the same time, stories were piling up and being collected that were as alarming as my own:

• An adult member of the autism community was told to take shelter with a can opener. After the storm and three days later of not eating, it was learned that they were not told specifically to use a manual can opener.

• A 17-year-old girl with pulmonary arterial hypertension, and always needs an oxygen tank, was shorted her regular delivery supply and spent the storm with her panicked parent watching

• In order to gain shelter during a hurricane, a quadriplegic would put on his winter coat, get into his van, close the windows, turn on the heat and wait until his temperature was 104 degrees. Then, he would drive himself to the hospital and ask to be admitted for his high temperature. 

• An experienced sign language interpreter found himself as intermediary between the county emergency management who did not feel there was anyone in a home destroyed from a tornado (due to no response from door knocking) and a family with parents who were deaf who lived in the home (found in the home moments later). Had the interpreter not been there, the children who could speak and hear would have had to interpret the news of their uncle's death in the tornado to their mother who was their uncle's sister.

• Countless lives were lost in many disasters when people with disabilities who were living independently on disabilities who were living independently on their own were sent to nursing homes, never to regain their independence again.

My questions to the emergency design planners became more expansive. Why? That word became a favorite question or tool. As I attended more meetings and became better known, people started to approach me on a regular basis, thanking me for asking the questions I posed that raised their awareness levels. In drills, I was thanked for participating and inserting injects. An inject is exactly that; a situation that is, with or without warning, inserted into the drill for the role players to address and solve during the drill. Those were always intriguing and no one ever knew what I would come up with. A simple example: at a shelter, an adult who is paralyzed in a wheelchair has come in without their caregiver at the last minute. The adult can be transferred to the cot with light assistance, and the shelter has the cot at the appropriate height. But the paralyzed individual is legally blind and has a decubitus (bedsore) wound. The role players in the drill would have to figure out how to accommodate the person on both situations.

As time progressed, there were various conferences to attend and, after a short time, preparedness for persons with disabilities would start to appear on the agenda. Those first presentations would start with the basics of water, food, flashlight, batteries, and can openers. I would not dare suggest that I was the originator of the idea, but after I sat in on several sessions asking some really tough questions, those same sessions would now include such topics as dialysis, dementia, and making sure that the service dog followed with the person, as opposed to being left behind. Preparedness classes would start to become accessible and inclusive, allowing for people with disabilities to also participate and help others after disasters.

Established organizations such as the Federal Emergency Management Agency (FEMA) and some local chapters of the Community Emergency Response Team (CERT) would design some creative methods to be inclusive—through technology by including American Sign Language (ASL) in their classes, or by having the group led by a professional who has experience in working with people with autism and teaching them how be a part of a CERT team. Even county emergency fairs would change to include vendors that would address the needs of the elderly, children, indigent, second language communities, and the disabled, in terms of disaster preparation.

Requests for presentations started to include more challenging questions from the host organizers, such as addressing the culture and communication of those with disabilities. Through meetings, it would be learned that shelters were receiving technology, supplies and cots that would assist people with disabilities and others. More ASL interpreters would be seen during community-news leader weather briefs. Educational materials on preparedness would be printed in multiple foreign languages, including Braille.

Police and other first responders were now asking for, and being trained in appropriate response skills when working with those with autism, developmental disabilities, and post-traumatic stress disorder (PTSD). Additional shelters were now being designed to keep the elderly with their dogs, for comfort to ease anxiety. For people with low incomes, at times of disaster, vouchers are used to augment their lost income and replace items. This in turn creates the opportunity to return to work faster and regain financial independence. As seen with COVID-19 and other infections such as MRSA, SARS, and sepsis, a wider variety of accessible resources are being issued in different formats to ensure quick distribution of medical information.

Community disaster planning committees are now starting to reach out to Independent Living Centers and homeless shelters to include their expertise in accommodating their consumers in disaster planning. Special diets (hypoglycemic, diabetics, celiac, immune compromised) and sensory processing disorders (lights, noise, activity levels) are just now being added into emergency preparedness planning. Let us not also forget the creation of laws waiting to be voted and approved on such as REAADI (Real Emergency Access for Aging and Disability Inclusion for Disasters Act), which ensures a stronger voice for emergency planning people with disabilities and DRMA (Disaster Relief Medicaid Act), which would ensure access to Medicaid during a disaster.

So, to answer the question of, "How do you help a person in a wheelchair go up an escalator?" You cannot. Instead, you can help by guiding them to the elevator, so they can reach the top independently. While emergency preparedness may not yet be 100% accommodating of everyone with a disability, I still remain hopeful that emergency preparedness and response will continue to evolve in a positive direction. Who knows? Maybe one day you, the reader, will be telling me about the successful improvement to emergency planning that you brought about. •

If you or someone you know wants to get more involved, they can reach out to FEMA, NCIL, Partnership for Inclusive Disaster Strategies (PIDS). Get involved!

READINESS REPORT: GOALS ON THE HORIZON

With knowledge of the progress made so far, this writer passionately hopes for continued inclusiveness in emergency preparedness education, planning and response. The following is just a brief wish list for the future:

• The topic of emergency preparedness and response would be first raised at the hospital upon discharge, where many disabilities are first diagnosed.

• People who are deaf/hard of hearing would have unrestricted access to information on upcoming or immediate weather, man-made, chemical, biohazard, or environmental situations.

• In all emergency operation centers, people who have disabilities would work side by side with emergency management to successfully help them help anyone they would encounter with a disability.

• In all forms of security, officers (regardless of rank) would learn how to successfully and calmly work with people who have PTSD, autism, or other mental health concerns.

• A better mask design would be developed, so that we can see each other's faces to access the verbal and emotional aspects of communication that we so badly need to get along.

• Shelters and hospitals would never separate the last trimester pregnant mother from the husband pre-, during, and post-disaster.

• Accommodation of rare disorders during a disaster, would not be dismissed and instead be included in planning.

• All neighborhoods would have a complete, inclusive community-preparedness committee where they can address the challenges, first hand, that are faced in their own neighborhoods. (An example of this might be a home owner association.)

• Properly-documented service dogs would be accepted as workers with their persons, without question, during a disaster.

• All websites and social media relating to pre-, during, postpreparedness, would be completely accessible for those with blindness/low vision issues, as well as those who are deaf/hard of hearing.

ABOUT THE AUTHOR:

Laura George, EMDL (Emergency Management Disability Liaison) has a long history of providing education and advocacy towards the improvement of emergency preparedness planning of people with disabilities. In addition to being a presenter, she also authored Emergency Preparedness Plan: A Workbook for Caregivers, People with Disabilities, the Elderly and Others. She received her Bachelor's Degree from Nova Southeastern University, and has assisted in many disasters for the past several years, and has received many awards and accolades for her work. Her spare time is spent with her daughter (PANS/MCS) and dog. For more information, you can find her website at laurageorgeemdl.com