AAC-RERC Webcast Series
Disaster Preparedness for Persons with Complex Communication Needs: 
A Personal Perspective

Pamela Kennedy

Slide 1: The AAC RERC Webcast Series

Slide 2: New Orleans, 2005 
       In 2005, Hurricane Katrina brought massive flooding to the Gulf Region. Many lives were lost, and many communities destroyed. 
       The impact of this disaster was felt acutely by people throughout the Gulf region, however the consequences were especially severe for individuals with disabilities, including those with complex communication needs. Being unable to communicate during a disaster is life threatening. This catastrophe reminds us that any emergency situation, whether it be a flood, a fire, an earthquake, a tornado, ice-storm or the loss of electrical power, puts people with complex communication needs at risk. In many cases it can threaten their ability to survive. To avoid a catastrophe, you need to prepare in advance.

Slide 3: Disaster Preparedness for Persons with Complex Communication Needs: A Personal Perspective
       Pamela Kennedy, is an individual with complex communication needs who uses augmentative and alternative communication to interact with others. She  served on the USSAAC planning committee for ÒAAC and All that JazzÓ, attended that conference, and the first ever  Emergency Planning meeting of professionals, people who rely on AAC, and Emergency Preparedness personnel in New Orleans in February 2008. This webcast is taken from her presentations to Emergency Preparedness personnel, AAC practitioners, manufacturers, and administrators.
       
Slide 4: Pamela Kennedy Introduction
       Good morning ladies and gentleman. Mere words cannot possibly express how honored I feel to begin our conversation concerning emergency preparedness and disaster relief issues specifically related to people with complex communication needs.
       
Slide 5: Pamela Kennedy
       I'm Pamela Kennedy, a very active member of the augmentative and alternative communication field and community. I work for the Rehabilitation Engineering Research Center on Communication Enhancement as a participant of the Writers Brigade project.
       
Slide 6: USSAAC
       I'm a member of the United States Society for Augmentative and Alternative Communication, commonly called USSAAC.
       
Slide 7: Video
       To get our discussion started, please allow me to relate my own experience as a refugee. In nearly everyone's life, there are pivotal moments that causes one to re-examine decisions, take action and alter the course of his or her life. April 19, 1997 happens to be one of those moments in my life.
       
Slide 8: Preparation
       Almost everyone living in the Red River region knew Grand Forks, North Dakota was going to flood at least two full months in advance, myself included. Therefore the city began building a dike and developing action plans and community networks before disaster struck.
       
Slide 9: Committees
       I served on some planning committees and was well known by Emergency Management and Pat Owens, the mayor. However, I thought the area in which I lived was safe. Therefore, I didnÕt prepare. As a result, I suffered.
       
Slide 10: The Dike Breaks
       The dike was breached on April 19, 1997 in the middle of the night about 2:00 a.m. When the sirens awoke me, I was terrified because there wasnÕt anyone there who could get me up. As a result, I was stuck in bed until 10:00 or 11:00 that morning until my aide came via boat with the National Guard in a truck 15 minutes behind her. We barely had enough time to get me in my chair, grab my medication, computer with text-to-speech softwareÉ
       
Slide 11: Jessie
Éand Golden Retriever Assistance Dog, Jessie before the Guard arrived.
       Because my vital evacuation information was in the registry, the rescue team knew who Jessie and I were even though none of us had met. Thankfully, my assistant told them I could communicate by writing, indicating yes and no by traditional means, text-to-speech software, sign language and gestures.
       
Slide 12: The flood
       By the time we left, the water was more than four feet deep, so everybody took me to the entrance with high concrete steps and loaded me on the truck from the top step.
       
Slide 13: The flood
       I was horrified as we maneuvered through the flooded streets. My anxiety increased exponentially when I was told I couldnÕt be evacuated to the same shelter as my friends and family because of my complex communication needs. When I asked what shelter I would be in, someone replied ÔThe makeshift nursing home we set up at the army baseÕs elementary school in the special education room. ItÕs too noisy for us to put people with speech impairments anywhere else. Besides, we donÕt want to separate you from Jessie.Õ
       
Slide 14: The flood
       Until that moment, I didnÕt consider myself to be that disabled. The waves of grief that washed over my soul seemed far more destructive than the flood waters around me. Suddenly, the possibility of losing my possessions didnÕt seem as painful anymore. The only thing I wanted was to be with my friends and family.
       

Slide 15: Grief
       I had just enough time to see the tears and anxiety that etched peopleÕs faces before Jessie and I were whisked away to the tiny special education room. From that moment forward, I vowed to do whatever I could to assist those who are in need. I remember it like it was yesterday. There was barely enough space for four child sized desks and one for the teacher. I wondered, ÔHow am I going to cope with this?Õ
       
Slide 16: Jessie
       And ran my hand along Jessie's silky fur for comfort. I thought, ÔI'm not alone. I have Jess.Õ The soldier standing beside me said, ÔI know itÕs crammed with some of the desks, but unfortunately you and Jessie will have to share it with one other person like yourself. We hope to get a cot in here so you two can take turns sleeping. WeÕre sharing the generators with the other shelters. That means weÕll have to conserve electricity. WeÕll work out a schedule to plug in your laptop but you wonÕt be able to use your computer voice during peak hours. Did you bring anything else to communicate with like a notebook or board?Õ
       ÒI slowly shook my head, Ôno.ÕÓ ÒIÕll see if we can find something for you to write with in the meantime. Until then, can you and Jess hang tight?Ó I nodded. Being segregated from my friends and family magnified my sense of loss and helplessness. Yet, I forced myself to remember I wasnÕt trapped anymore. After all, I could send Jessie for someone if I needed help.

Slide 17: Video
       ÒWithin the next three hours, another refugee joined me. A cot was brought to us. And, I had a legal pad and pen so I could communicate with the soldiers. Ò ÔOne of first things I said to the soldiers was, ÔThank you for rescuing me and bringing me the legal pad!Õ The soldier replied, ÔYouÕre welcome. Do you think youÕll be able to sleep on the cot?Õ ÒI sighed and said, ÔNo, itÕs too low to the ground. I canÕt transfer to it. IÕll have to recline in my wheelchair.Õ ÒHe answered, ÔWell, at least youÕll be able to eat some of the lovely school cafeteria food.Õ I smiled and nodded.
       
Slide 18: Video
       He was trying to cheer me up, so I didnÕt mention that I had a swallow disorder and could only tolerate soft, mushy foods. I would compensate for it myself. However, talking to my bunkmate was difficult without my computer because he couldnÕt sign or read well. I wished I had grabbed some paper communication pages with symbols on them. This would have enabled me to communicate more easily, and save my shrinking supply of paper. The hours between visits were very lonely.
       
Slide 19: Video
       I felt naked and vulnerable when I couldnÕt use my speech software or paper boards because my interfaces felt like an extension of my body. I longed to see those visual representations of myself because I wanted to feel intact.
       
Slide 20: The Mayor
       Sometime that evening, there was a knock on the door. ÔHello, itÕs Mayor Pat. May I come into see you?Õ The door opened, a look of shock registered on her face. ÔPam and Jessie! What are you guys doing in here?Õ ÒShe turned to the soldier at her side. ÔMajor, we need to put this girl to work! She doesnÕt need to be shut up in here all the time. We need another person to help maintain the registry on the night shift. She can type and it will get her out of here for a few hours.Õ
       
Slide 21: Video
       I worked in the office at night keeping data on all of the evacuees so our families could find us. Those were also the hours I was allowed to plug in my laptop. During the day, I had to go back to the special education room. In those hours, I slept and created boards so I could communicate with my bunkmate. I plan to show them to you in a moment.

Slide 22: Emergency Preparedness
       I was only in the shelter for four days, before someone found people in Mandan and Bismarck to take us in temporarily. Still, that seemed like a lifetime to me because I wasnÕt able to get out of my wheelchair at all. As a result of those experiences, IÕve taken measures in an effort to prevent being unprepared for an emergency. I encourage you to do the same.

Slide 23: Keep a fanny pack of essential items with you at all times
       1. I always wear a waterproof fanny pack that contains a print out of my medical information, insurance cards, paper communication boards, accommodations, emergency contacts, doctors, activities of daily living, charged cell phone, inhalers and pain medication.

Slide 24: Make an emergency kit
       2. I keep changes of clothes, copies of communication interfaces, medication, medical supplies, food and dog food in watertight containers in closets near an exit. That way if I ever need to be evacuated again, I am as ready as I can be.
       
Slide 25: Contact Emergency Departments
       3. When I move to a new area, if Emergency Management doesnÕt have a registry, I call the police department and emergency responders to let them know a person with complex communication needs lives at the following address.
       
Slide 26: Create a personal disaster plan
       4. IÕve developed a personal disaster plan that my network of family and friends know about, so I donÕt have to rely on emergency responders to rescue me unless absolutely necessary.
       
Slide 27: Keep aware of potential disasters
       5. Because IÕve lived in multiple flood prone regions, I log on to the National Weather ServicesÕ website for the most accurate and up-to-date weather watches and warnings in my area.
       
Slide 28: Have someone call you
       6. When a watch or warning is issued somebody calls me to see that IÕm OK.
       
Slide 29: Be prepared to evacuate
       7. When flood watches or warnings are issued, I make every effort to be in my wheelchair and with someone so it isnÕt so difficult to rescue me.
       
Slide 30: Emergency preparation
       Hopefully, IÕll never have to institute my evacuation plan. If I ever do, IÕll take comfort in knowing I made every effort to prepare.
       
Slide 31: AAC and All that Jazz
       And, I havenÕt forgotten the promise I made to myself in that refugee shelter. ThatÕs why I asked Sarah Blackstone if I could lend a hand with the ÒAAC and All That JazzÓ Conference.  I want to help make the AAC Restore and Rebuilt Project a continuing success. We are not replacing AAC technologies; we are restoring families and communities and rebuilding lives! Networks only function properly if they remain connected. Even after the conference, I hope to remain involved. To me, doesn't matter that I wasn't displaced in New Orleans. That's just geography. My heart can't read a map! So, I've rolled up my sleeves and I'm in it for the long haul, willing to share whatever I can -- including my boards.

Slide 32: Paper communication systems
       Paper was rationed. As a result, I was limited to four pages. Because the signed alphabet was my first language, IÕve always preferred interfaces that contain text and no symbols. However, my bunkmate needed symbols. So, I created both types. I tried several grid configurations on my computer with my bunkmate and the soldiers. Finally, I settled on an evenly spaced grid with 70 congruent squares on a single page. When talking to an unfamiliar partner with paper communication boards, IÕve found that utilizing a black background works best because the squares are more visible to him or her.
       
Slide 33: Communication displays 
       Now, let me explain themÉMy pages were text based and displayed the alphabet and core phrases.Ê Because of this, they didnÕt require as much context as symbol based boards. The squares on my first page featured the letters of the alphabet,
       
Slide 34: Communication displays
       all single digit numbers, key phrases and objects in the room. This provided convenience, speed and the ability to compose novel messages without adding pages. My core vocabulary included words like: yes, no, need, want, basic pronouns, Jessie, help, seizure, please, thanks, hi, bye, blanket, pillow, paper, pen, eat, drink, soup, sandwich, computer, and the phrase ÔI can't eat that.Õ
       
Slide 35: Communication displays
       The last phrase was essential. The stress of being displaced made my swallowing disorder much worse. To avoid having a food fight with myself, maximize my ability to swallow and reduce my risk of choking, I resorted to having someone feed me. In doing so, I reduced my fatigue and likelihood of seizures.
       
Slide 36: Communication displays
       The boxes on my second page contained related, color coded clusters of words and phrases thatÊmight be used in combination. In the section containing my vital information I listed my name, disability, and strengths. I made sure I could tell them I understood them and to feel free to ask questions when necessary. The next cluster allowed me to state if I was experiencing headaches, seizures, dizziness, nausea, swelling, or double vision.Ê This was critical because the water supply might have become toxic as a result of the sewage and gas leaks in the city. 

Slide 37: Video
       Because I was unable to use the cot, I had to stay in my chair for four days! As you can imagine, I was in terrible pain and extremely spastic.Ê When I asked for something to relieve it, I had to communicate exactly where I hurt.Ê Naturally, I created appropriate squares.ÊÊHowever, I usually prefaced my answer by rolling my eyes and spelling the word Ôeverywhere.Õ Finally, I reserved one cluster to communicate Jessie's needs and to inquire about updates whenÊI was in the office at night.Ê Doing that enabled me to ask if my family had called, and if access roads were stillÊflooded.ÊÊMyÊheart always pounded when I pointed to the phrase, ÔAny refugees found homes since I was on last?Õ
       
Slide 38: Communication displays
       Then, I focused on my roommate's pages. My first priority was to lessen his anxiety. Every time I used my AAC, his gestures and vocalization became exaggerated. Unfortunately, when I showed him text based boards, he became frustrated.Ê So, I loaded common color core symbol sets that depicted the actual concepts on my PC. I watched his reactions when he saw each square.Ê Gradually, he told me which ones he recognized!Ê He knew the symbols for bed, chair, blanket, yes, no, wait, help, want, toilet, drink, eat, sandwich, soup, soda, done, home, basic emotions, good, bad, past, present, and future. I was elated!ÊBy the end of our first day, I created a page of squares that contained groups of related words: foods, objects in the room, body parts, and essential pronouns, and prepositions.ÊÊ I also added the symbols for soldier and flood.Ê
       
Slide 39: Thank you
       When I handed the page to him, he pointed to Ôthank you.ÕÊ I replied.Ê His responses is seared into my memory.
       
Slide 40: Messages
       He looked out the window and pointed to: Ôpresent, I, home, flood bad.Ê I sad, afraid.Õ My heart sunk.Ê
       
Slide 41: Messages
       Because I had friends who communicated similarly, I understood that he had said, ÔMy house flooded badly.Ê I wish it was over.Ê IÕm so frightened and sad.ÕÊÊ
       
Slide 42: Messages
       I choked back the tears, put my hand on his arm and pointed.Ê ÔYes.Ê You, I sad.Ê Present, flood bad.ÕÊ He indicated, Ôpresent, I want family, friendsÊ Past, flood, bad, done.ÕÊÊ
       
Slide 43: Messages
       I didnÕt have his symbol to indicate I was sorry, so I typed it and hoped my expression conveyed the compassion and empathy I felt.Ê We sat in companionable silence.Ê Sometime later, he indicated, ÔThank you.ÕÊ I smiled and responded, ÔYouÕre welcome.Õ
       
Slide 44: Communication displays
       The following day, we looked through my symbol archive again. Knowing he could construct complex responses, I hoped he knew more of them so we could talk about many more subjects.Ê As we clicked through them, I realized that I didnÕt have most of the pictures in his sets.Ê I compiled the few we had identified and constructed his interface. I took solace in the fact his first page contained enough vocabulary so he could tell our caregivers when he wanted something to eat and drink or to go to bed.Ê
       
Slide 45: Messages
       He could also say, ÔSoldiers, men, women, loud.Ê I head hurt.Ê I want medicine.Õ
       
Slide 46: Messages
       And, Ômore toilet stink.Ê I sick.Õ In other words. ÒThe stench of raw sewage is making me nauseated.Ó
       
Slide 47: Messages
       We used the second page when we were alone because it held key temporal indicators, such as: "who," Ôwhat,Õ Ôwhere,Õ Ôwhen,Õ why,Õ and Ôhow.Õ By doing so, he was able to articulate more complex thoughts like: ÔI afraid when I go home.Ó  ÒHow bad flood my home question.ÕÓ I knew he had said IÕm afraid to go home. How badly is my house flooded? I also added symbols so we could attempt to engage in small talk. However, without more extensive vocabulary and environmental context it was difficult to ascertain which ones he was referring to. Still IÕm glad we had the opportunity to meet and be there for each other when we needed it most.
       
Slide 48: Video
       The four days I spent in the shelter changed my perspective on human suffering. Today, when I hear of an emergency on the news, my heart still pounds in my chest as I wait to hear its toll on families and communities. Thank you allowing me to share my story with you. I really enjoyed doing so and hope you did as well.

Slide 49: ÒAll that JazzÓ
       Nearly a year has passed since I gave the preceding presentation and to the completion of this webcast. I am delighted to say that conference participants did establish a dialogue. This allowed us to achieve our goals and outcomes while we were in New Orleans. The original purpose of the AAC and All That Jazz conference was to rebuild capacity, restore AAC services, and focus on brightening the future along the gulf for people with complex communication needs. As the AAC Action Corps organized the event, we also decide to launch USSAACÕs Restore and Rebuild Project.

Slide 50: Continuing Work
       Thanks to those efforts, AAC and All That Jazz has become a network of people rallying to respond to the needs of people with CCN worldwide and to raise awareness regarding the need for emergency preparedness.
       



Slide 51: Thanks toÉ
       I would like to express a very heartfelt thank you to USSAAC, all ATJ Committee members, sponsors, and contributors. You were the backbone of AAC and All That Jazz. We could not have accomplished so much without you. And finally, I am deeply grateful to David McNaughton, Sarah Blackstone, Sarah Douglas, and Pennsylvania State University for their collaboration on this webcast. I couldnÕt have done it without you. Thank you for allowing me to stand on your shoulders.
       
Slide 52: Additional Resources
       If you would like to learn more, or become involved, please go to USSAAC.ORG and AAC-RERC.COM, or you may email me at pdkennedy416@gmail.com. Thank you, I look forward to hearing from you.