Developing a Culturally Specific Emergency Communications Plan for the Disability Community
Final Report
Report Produced by: Women with Disabilities Health Equity Coalition (WowDHEC) Project Investigators: Marjorie McGee, MS, LPC, Sara Beth Weiner, MSW, MPH, Michelle Berlin, MD, MPH, and Roshanthi Weerasinghe, MPH
Table of Contents Page Introduction and Purpose
3
Research Question
4
Methods
4
Demographics
5
Results Current Communication Channels
7
Likely Community Response to Emergencies
9
Community Preparedness Needs
15
Community Communication Plan
18
Recommendations
22
References
23
Appendices A. Tables B. Glossary C. Online Survey Questions D. Focus Group Questions
24 34 36 42
This project was made possible by a contract from the Multnomah County Health Department, with funding from the National Association of County and City Health Officials (NACCHO). Special thanks to: City of Portland, Independent Living Resources, Multnomah County Health Department, WowDHEC Staff and Leadership Team, and the Women’s Health Research Unit at OHSU. For more information or to obtain information in alternative formats, please contact Marjorie McGee at 503-494-2685,
[email protected].
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Introduction and Purpose Each year thousands of people are potentially affected by the type of emergency preparedness and response plans practiced in their communities. Emergency preparedness and planning is an important and complex undertaking that becomes even more complicated when focusing on people with disabilities, who represent 15.1% of the U.S. Population (U.S. Census Bureau, 2006). Emergency preparedness for all people, including people with disabilities (PWD), may involve natural disasters like floods and earthquakes, as well as epidemic outbreaks of diseases such as avian flu. Having a disability and responding to an emergency can be difficult, as demonstrated in catastrophes such as Hurricane Katrina, or the collapse of the World Trade Center on 9/11/01 (White, 2007). These events demonstrated the disastrous results that can occur when communications systems, designed primarily for the majority culture, fail to reach all people affected by an emergency. Emergency preparedness efforts and disaster planning do not usually include input from people with disabilities at the local level (Fox, White, Rooney, & Rowland, 2007). Recent studies produced following Hurricane Katrina recommend the active involvement of PWD in assessing and planning for future emergencies (Fox et al., 2007; Kailes & Enders, 2007; Rooney & White, 2007; Rowland, White, Fox, & Rooney, 2007). This project is designed to include PWD at the local level, and represents an extension of efforts by the Multnomah County Health Department (MCHD) to improve community health through more effective emergency communications with selected culturally-defined communities in Northwest Oregon. The overall goal of this project was to conduct a preliminary, culturally relevant assessment of emergency preparedness in the disability community. Because this project was envisioned as a pilot study, the focus was on gathering information from a broad cross-disability sample, rather than a specific disability sub-community (such as the Deaf or Autistic community) to inform future efforts to improve emergency preparedness among PWD. The research was conducted by researchers affiliated with the Women with Disabilities Health Equity Coalition (WowDHEC), a project of the Center for Excellence in Women’s Health at Oregon Health & Science University (OHSU). The focus group moderators were both women with disabilities (Deaf/hard of hearing). We found this to be a strength in three notable areas: in the recruitment of disabled people1 for the study, in developing the study questions and design, and in the interpretation and analysis of findings. There were several participants who expressed pleasure with the focus groups being led by women with disabilities. The ―insider‖ knowledge of the focus group leaders as members of the disability community lends a unique and valuable perspective to addressing issues such as emergency preparedness. Our overall research goals are to clearly communicate the different perspectives expressed, to honor the voices of members of the disability community, and to facilitate dialogue towards social justice. 1
Like people in other communities, people with disabilities disagree about how they want to be identified. Some people prefer ―People First Language,‖ in which the word ―people‖ always comes first, as in ―people with disabilities.‖ Others prefer to be referred to as ―disabled people.‖ In recognition of these differing views, we have chosen to use both appellations in this report.
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Research Questions Five research questions guided the development and implementation of this project: 1. How do people with disabilities (PWD) prefer to receive important communications? 2. What is the nature of the communication channels frequently used in the disability community? (See Current Communication Channels, p.7) 3. How are people with disabilities (PWD) likely to respond in the event of a natural disaster or a public health emergency resulting from a highly contagious infection or disease? (See Likely Community Response to Emergencies, p. 9) 4. To what extent are participants prepared for an emergency? (See Community Preparedness Needs, p. 15) 5. What are the important components needed for the development of a culturally specific plan for the disability community? (See Community Communication Plan, p. 18)
Methods Online Survey. Our individual and organizational contacts in the disability community were invited by e-mail to complete a web-based survey. The email invitation informed participants that the survey would be completely anonymous (e.g. the survey would not capture names, IP addresses, or other potential identifiers). We first developed a hard copy survey. We used the online survey tool, SurveyMonkey, to create an accessible survey instrument based upon the hard copy instrument developed. The survey included a section to verify eligibility (age and experiencing a disability), followed by a page on confidentiality and consent, and finally the survey questionnaire. The survey questionnaire had 5 sections: (1) general demographics, (2) disability specific demographics, (3) communications/telecommunications, (4) personal emergency preparedness, (5) receiving and communicating emergency information and (6) trusted sources of information in the disability community. Those not able to access SurveyMonkey were given the option of filling out a paper version of the survey (the hard copy instrument mentioned above) either on site at OHSU or Portland State University (PSU), or by mail. Focus Groups. In addition to the survey, two of the investigators conducted six semi-structured, in-depth focus groups. An email announcement was sent to our contacts in the disability community, inviting PWD to join the focus groups. Potential participants were asked to sign up for a focus group, either by email or by phone. Only individuals over the age of 18 with a selfreported disability were allowed to participate in the focus group. Participants were given the option of attending a focus group at a variety of times and locations. All focus groups were held in accessible locations. Additionally, alternate formats (Braille) and accommodations for communication (e.g. sign language interpreter) were provided upon request. Participants were compensated with $4 coffee card. For standardization, guidelines for conducting the semi-structured focus group were developed. The focus group guide, informed by Morgan (2008; 1997), has 5 sections: (1) instructions and 4 | P a g e Emergency Communications Plan for the Disability Community
introductions, (2) receiving and communicating information, (3) listening/following instructions from first responders, (4) having a plan/getting help, and (5) developing a culturally specific plan. The focus groups questions were designed to allow semi-structured discussion about topics pertinent to training, experience with disabilities and travel, and organizational culture. The sessions lasted three hours, with time given for breaks. All sessions were audio-taped and captioned (transcription) for the benefit of the Deaf/hard of hearing investigators. Focus groups with Deaf (signers) respondents were video-taped as well. Group size was intended to be limited to 3-6 individuals with disabilities as a high level of interest in the topic was anticipated, and having a smaller group would allow each participant to participate fully. Based upon what we knew about the ―politically organized disability community‖ in Portland, we expected that participants would be somewhat homogenous in terms of socio-economic status (SES), race, and other personal characteristics. This point will be addressed in the section on recommendations for future research (p. 22). Focus Group Demographic Survey. After reading the Letter of Information (which was used in lieu of a formal consent form as approved by the OHSU Institutional Review Board), participants were also asked to complete a demographic questionnaire intended to collect basic descriptive information about the individuals participating in the focus group. Resources Distributed. Packets given to focus group participants consisted of information about the Voluntary Emergency Registry (VER) and a 20-page American Red Cross publication titled: Preparing for Disaster for People with Disabilities and Other Special Needs http://www.redcross.org/images/pdfs/preparedness/A4497.pdf.
Demographics Participants Online Survey. Between July 16, 2008 and August 31, 2008, the online survey was initiated by 55 people. Of those, 2 were not over the age of 18, and 7 did not have a disability. Two indicated having a disability and being age 18 or older, but did not answer any further questions. Furthermore, a duplicate was suspected and excluded upon running a data quality check, comparing birth month/year to zip codes and to disability status. The final sample size for the online survey was 43. Focus Groups. A total of 22 individuals participated in the six focus groups. Two focus groups, with one person in each group, were held in the manner of a ―one-person‖ focus group (keeping to the same methodology and focus group guide to maintain comparability). The largest focus group had 9 people. The focus groups were held in various parts of Multnomah County including downtown, inner southeast and the Gateway district.
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Demographic Profile The average age of participants was 48.5 for the online survey and 52.2 for the focus groups (see Table 1). Most participants were white and non-Hispanic (see Table 1). All participants indicated English as preferred language, except for 11 Deaf people indicating ASL (9 from the online survey and 2 from the focus groups). Nearly 42% of survey respondents lived in Multnomah County; nearly 70% lived in the larger Portland metro area (see Table 2). Over half the focus group respondents lived in Multnomah County, with the rest living in Washington and Clackamas counties. The fact that many of the participants lived outside of Multnomah County should not be of great concern; the responses for those living in the larger Portland metro area are not likely to differ significantly from those living in Multnomah County due to many of the organizations, public transportation systems and other systems encompassing the tri-county area. In the online survey, all respondents reported that they lived in a house or apartment, with 53% living with another person, usually another adult(s) (see Table 3). Half of the focus group participants and 44% of the online survey respondents reported having more than one disability (see Table 4). Half of all participants overall (combining both online and focus group respondents) reported having a physical/mobility disability (see Table 5). Deaf people accounted for 30% of all survey participants. (Due to significant cultural differences, persons who identified as hard of hearing were not combined in the analysis with those identifying as Deaf—see Table 5.) Representation across “communities” within the larger disability community . As this study was intended to be a ―cross-disability‖ study, there was diversity in the number and type of disabilities reported by each respondent. This diversity makes it difficult to calculate statistical significance because of the small size of sub-groups and the fact that many people had more than one disability. Thus caution must be exercised in interpreting this data. There is also the problem of selection bias, since those who are not active in the disability community may not have heard about this survey. While we did offer a print alternative for the online survey format, we did not offer individual interviews or other formats in lieu of the focus groups. This limitation may have resulted in certain groups being under-represented. These groups include those with the following type of disabilities: deaf-blind, hard of hearing, autistic, speech, learning, and cognitive.
Results 1. Current Communication Channels Research question #1: How do people with disabilities (PWD) prefer to receive important communications? The choice of communication modes changes by the type of impairment (or disability).
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TV was identified by 81% of survey respondents as the preferred method for receiving information in the event of an emergency (see Table 6). However, this was not true for everyone. Those who identified as Deaf, for example, ranked family and friends (53.8%) higher than TV (46.2%) as a preferred source for receiving important health information. This can be explained by the often inaccessible or unreliable modes of communication for people who cannot get effective information via audio means (e.g. lack of captioning on ―breaking news‖ stories on TV, phone services with automated menus). From the focus groups we learned that there was a preference for ―first hand information,‖ often garnered via personal data assistants (PDAs) that allow access to e-mail and/or the internet. For people who are legally blind or have low vision, TV presents challenges as a mode of communication. A theme that emerged from the focus groups pertained to the lack of audio accompanying ―breaking news‖ scripts running at the bottom of the TV screen. This and other communication barriers are explored more in the ―special concerns‖ section of this report. Among focus group respondents (few of whom were Deaf), friends, family and neighbors emerged as preferred contact people while the phone (landline or cell) was the preferred way of contacting them (see Table 7, 8). The category of friends encompassed life-long friends, friends from church, from the disability community, from other communities (such as the amateur ―ham‖ radio community), and people living in the same building. The lifeline service (emergency button) was mentioned as a preferred way to ask for help, as well as the “person in charge,” who could be the building manager or an office manager in a clinic, for example (see Table 7). Several individuals (most of whom had vision loss) indicated they would visit the ―person in charge‖ (as opposed to calling). Community leaders and disability-related organizations did not come up initially as a source of information in the context of emergencies; however, when focus group respondents were asked about organizations that are well-known and trusted for having good information (not necessarily emergency preparedness information), respondents listed many disability-related organizations. Research question #2: What is the nature of the communication channels frequently used in the disability community? Communication channels used and preferred by people with disabilities are diverse, with the type of disability having a direct effect on the communication mode or device used regularly. The diversity of the disability community can be seen more clearly in Tables 6-8. Commonly-used communication modes include American Sign Language (ASL), Braille, captioning, and other communication modes not utilized by dominant culture (see Table 9). The diverse communication modes require different types of telecommunications as well. For example, 92.3% of Deaf respondents surveyed use a PDA/cell for texting (see Table 9). TTY and Texting. For people who identified as Deaf, the traditional TTY (text telephone) appears to have been largely replaced by PDA type of cell phone, such as the Sidekick or a Blackberry, which can be used for texting (see Table 9). These devices also often have the 7 | P a g e Emergency Communications Plan for the Disability Community
capability of a TTY built in, and can access the relay system (see Appendix B: Glossary). Additionally, the TTY is more limited when going through a relay system to connect with agencies that use automated telephone systems with extensive menus. In the questions asking about ―Telecommunications Devices‖ (at home or at work), the fact that only five Deaf people reported using cell phones at home may mean they viewed cell phones as different from text messaging devices (see Table 10 and Table 11). Thus, the data in those two questions should be viewed with caution. Other devices used commonly by Deaf respondents included TV captioning, videophone, and the relay (video or other). For more information on communication devices, see the glossary in Appendix B. High-Technology Communication Modalities. Many of the communication channels favored by people with disabilities, particularly those with hearing loss, are now ―high tech,‖ requiring electric or battery power. Technology now makes it possible for many people with disabilities to retrieve information ―first hand‖ instead of having to rely on friends and family members. Television - Being Digitally Ready. Given the dependence upon TV, we had a question in the survey to assess the proportion of those who are ready for the change to digital TV. Nearly 70% of those responding (who have a TV) indicated readiness for digital TV (see Table 12). Amateur “Ham” Radio as Source of Communication. Several focus group participants who have low vision/are blind are part of an active community of Amateur ―Ham‖ Radio users. Many ―Ham‖ Radio operatives have participated in training about how to get information out in case of an emergency. Therefore, Amateur ―Ham‖ Radio operatives may be an under-utilized resource for emergency response. Other alternative communication channels that may be underutilized include: Lifeline, Building Managers, and ―Person in charge.‖ Community leaders and disability organizations are underutilized in providing information relating to emergencies. This is likely due to the fact that traditionally people with disabilities and disability organizations have not been seen as a resource in the context of emergency preparedness. Summary – Communication Channels/Methods The choice of communication modes changes by disability type. Family, friends, and neighbors are important sources of information. Alternative communication channels that may be underutilized include: Ham Radio, Lifeline, Building Managers, and ―Person in charge.‖ Power outages will seriously impact communications, particularly for those using cell/PDAs and other devices for texting. This is a serious concern for PWDs, such as Deaf people, who may not be able to get key information from the TV, radio, and neighbors/friends who do not know ASL.
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2. Likely Community Response to Emergencies Research question #3: How are people with disabilities (PWD) likely to respond in the event of a natural disaster or a public health emergency resulting from a highly contagious infection or disease? Listening to / Following Instructions. TV and Fire/EMS personnel ranked highest when survey respondents were asked to whom they were most likely to listen and follow instructions in the event of an emergency. Social services agencies and the 211 information referral line were ranked last for all online respondents (see Table 13). For Deaf respondents, friends and family were rated equally with TV and Fire/EMS personnel (Table 14). This is not surprising given communication challenges such as lack of ASL interpreters accompanying EMS personnel or inconsistent captioning on the TV. None of the Deaf respondents selected radio or 211 as sources for getting information or to listen to or follow instructions. Also, local disability organizations were not chosen as places to listen to/follow instructions. Another barrier mentioned was automated phone menus, which are inaccessible to people using the relay service, because often by the time the deaf person responds via interpreter, the system has hung up. Urgent Care. Just under 30% (2 of 22) survey respondents indicated they would follow instructions from the health department or health providers (see Table 13). This low percentage may reflect a lack of awareness of possible health emergencies (such as severe acute respiratory syndrome [SARS]). Among focus group respondents, barriers that would make it more difficult to get urgent medical care included needing to have proof of insurance or coverage, limitations by health plans that limit access to urgent care on weekends, inaccessible information on health plan coverage, transportation, cost (co-pays, no insurance), and transportation (especially for those who don’t drive and depend on the Tri-Met Lift or other forms of transportation). Many of the focus group respondents stated a preference for urgent care centers and other alternatives to the emergency department. Some attributed this to the recognition that the emergency department is for the most critical cases. However, several people mentioned the importance of building relationships with front desk staff at health care facilities, and how past positive experiences with staff would play into their decision on where to go for urgent care in the event of an emergency. The lack of ASL interpreters on site at hospitals was also cited as a challenge: “First of all, I think for Deaf people, it‟s not going to happen that you are going to get an interpreter in an emergency…Because what are they going to do? Call an agency (to) try to get an interpreter? ...In the meantime this poor Deaf person is sitting there waiting and waiting and waiting.”
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Vaccine. Focus group respondents clarified that for getting vaccines and other forms of medical care that they did not consider urgent, they would be more likely to go to their doctor, the health department, or stores (e.g. Fred Meyer) that provide vaccines. Sixty-two percent of survey respondents said they would get a vaccine if asked to do so (see Table 14). Survey respondents identified the following reasons for not getting a vaccine: prefer own doctor, allergies, thought to be unnecessary, or would want full information why and for what purpose the vaccine was being recommended (see Table 14). First Responders & Fear of Being Left-Behind. Focus group respondents’ feelings about the Federal Emergency Management Agency (FEMA) and the American Red Cross were mixed. Some of the respondents have participated in training by the American Red Cross and would listen to Red Cross staff and get information from them. However, based upon the past experiences with Katrina, some mentioned lack of trust as a barrier. The fear of being left-behind is a particularly strong theme that emerged from the focus groups, particularly when talking about listening to and following instructions and about help with evacuation. For example, one focus group respondent said: “..I always thought if I was having a problem with (being among) a bunch of people I would be the last person to get help. Because maybe I‟m in a crowd of 50 people and I‟m the only one that is disabled. Sometimes I feel like I would be the last one that they would be concerned of. They wouldn‟t know what to do. I mean, she‟s in the wheelchair. We don‟t have nothing for her. What do we do for her?” Embedded in the concerns about being left behind is the fear that in an emergency, there would be disorganization and chaos, which lessens trust in first responders: “I have to say in a really large disaster or emergency, I am not sure I would trust any of them (first responders). Because from what we‟ve seen with Katrina and the mock disaster drill here [The US Office of Homeland Security Top Officials Exercise (TOPOFF)], I would be fearful I would be talking to someone who wasn‟t in authority and didn‟t have a clear picture of what was going on. I would be afraid they would all have their own pieces, and it would not be well organized.” Describing her experience in the TOPOFF emergency drill held in October of 2007in Portland, another respondent revealed similar fears: “By me being in this experience, it just amazed me. The real police people that were there and the real firefighters that were there, they were so overwhelmed. I thought, is this what these people are really going to do if something happens in a real disaster?...What really upset me about that day…they helped the normal people first. And they kind of put all us disabled people over here. That really upset me. But that‟s how it was.” Responding to this comment, another participant said: “I agree with you that that most likely does happen. And it‟s discrimination basically in an emergency situation. Because they can deal with more people quicker, which isn‟t it about
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saving lives? Yes, that‟s true. But a person with a disability has a life also. And I would be curious to find out in some of the disasters such as the World Trade Center, Katrina and others, were people with disabilities . . . basically put to death by not having proper emergency preparedness?” Physical Obstacles Limiting Response. Another important theme emerging from the focus groups had to do with the fear of not being able to contact others for help due to physical obstacles. Several of the participants, mostly those with physical disabilities, feared not being able to get to the phone if bookcases fell down, or that their personal care assistant might not show up since they have their own families. One participant mentioned the issue of being in a building, where if the power is out, the elevator would not work. Transportation also emerged as a theme throughout the focus groups. This issue is not limited to those with physical or mobility disabilities, but also to those with other disabilities (e.g. blind/low vision and cognitive disabilities). Many of the respondents did not know how they would transport themselves, for example to a shelter or a hospital. Many guessed that the local lift service would not be available. Accessible Shelters. The issue of accessible shelters came up as a theme from the focus groups, even though we did not ask directly about this subject. Among focus group respondents, some concerns emerged in the context of emergency shelters: Service / guide animals – would shelters be set up so that someone with a service animal would be able to stay in the shelter? Feeling of being the ―the invisible person amongst the crowd,‖ (which was related to the fear of being left-behind.) Not being able to understand /hear the instructions within a shelter. Use of ―sighted language that is more appropriate to people with vision.‖ Not being able to follow the instructions, or to orient oneself within a shelter (knowing where the restrooms and exits are, etc.). Preference for one-on-one communication, which respondents feared might be impossible in a shelter. In discussing these concerns, one participant suggested the use of video relay in a shelter: “…for example in a shelter if they have a big screen TV, we could use VRI [video remote interpreting] services. And the deaf-blind people could get up close or the Deaf could interpret for (the deaf-blind).” Underutilization of Strengths and Skills. The suggestion above relating to VRI also alludes to using the strengths of other people in the shelter, in this case, the deaf people who could interpret for the deaf-blind people. Concern was voiced that because of the tendency by nondisabled people to perceive disabled people as needing help (and thus not able to help), skills of disabled people would be underutilized in the event of an emergency. For example, one participant mentioned that shelter personnel might not utilize his skills in interpreting in several languages.
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Guide / Service Dogs. One participant noted the importance of her service dog: “I would want to make sure that my dog would be with me. That would be my first concern, next to my husband. Actually, my dog would be almost before him in that case.” A variety of concerns and questions came up in regard to service animals: Are first responders trained in dealing with service animals? While most first responders understand the importance of not separating the dog from the person, others may not. Will first responders know to get/look for the service dog, if assisting someone in evacuation? Will shelters accept dogs? Will they have provisions and space set up to accommodate service animals? For deaf-blind participants who use ASL, it was noted that many in the Deaf community do not understand the issues related to having a service animal, and that many in the blind community do not understand the issues related to ASL and interpretation needs. Streets littered with glass and other debris may not be safe for the service animal. Training for first responders emerged as a need from all the focus groups. In this context, training would help assure that responders knew and understood how to deal with service animals. “I think all of these personnel (first responders) I would be more comfortable if I knew they had training to deal with my dog. Because unfortunately it has been the experience of many that when there‟s a medical emergency that occurs, for example, and you take your dog with you, the medical personnel just about have a serious coronary themselves for fear (of) that dog. I don‟t know what they think he‟s going to do.” What if there’s no power? This question came up almost immediately in all the focus groups. This is a particularly important question for those dependent on electricity in various forms, including those who use cell phones because of the need for charging batteries. This question certainly must be addressed with members of the disability community and strategies must be developed. The fact that one can buy a radio that works on batteries alone did not come up often in the focus groups. Cell phones are particularly problematic since they do not come with extra battery packs. Also, TTY’s are more easily affected than land lines by power outages. Communication Issues – Deaf. Below are some of the communications issues touched upon by Deaf participants. Keep in mind that our sample size for this population in the focus groups was quite small, and thus the full range of issues is likely not represented. For example, we did not have any hard of hearing individuals or deaf individuals who do not use ASL. Captioning on TV. The lack of reliable captioning on TV for live stories or ―breaking news‖ came up in one focus group. Many of the local news stations use a teleprompter to provide the captioning, which does not help when a live story is reported on TV news (or in press conferences).
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Text Messaging/PDAs/Pagers. Blackberries, Sidekicks, and other cell phones with an Instant Messaging/text messaging feature are the primary communication modes for Deaf people when communicating with colleagues and friends who also have these devices. Some cell/PDAs have the capability for global positioning systems (GPS) and e-911 (wireless 911), while others do not. This technology has the added advantage of being able to connect via the relay to hearing people who do not have similar technology or comfort with using these devices. Finally, many of these devices also have the ability to connect to email and the internet depending on the calling plan. Interpreters. The question of whether first responders would have an interpreter (ASL for Deaf people, Tactile for deaf-blind people) came up a few times. Presence of interpreters definitely will impact the ability to get information out and to direct people who use ASL or Tactile interpreters. One Deaf respondent, when asked from which first responders she would prefer to receive information, responded by saying: “My first reaction to all of those is like the first person I can think of is an interpreter. I need an interpreter with any of them.” Communication Issues – Blind or Low Vision. Inaccessible or inaccurate information makes it difficult, particularly for people with visual impairments, to listen to or follow instructions in event of an emergency. “Well, one thing they would do is (say) „over here, over here.‟ „Go down there.‟ …” Another participant (also blind) chimed in: “Go to the „green door.‟ I love it.” The first participant continued: “So they need to know how to give the proper instructions. Like for orientation.” Another focus group respondent mentioned the importance of having a way to immediately identify first responders: “Make sure there is a definite quick way for visually-impaired people, especially those of us who are totally blind, to identify police, firefighters, EMT's, any of these emergency workers or neighborhood association people if we don't know them.”
The issue of TV being inaccessible, with the lack of audio description or voicing (for breaking news on running captions) is another strong theme that emerged. In regards to descriptive audio on TV, one participant explained how audio description on the TV news would be helpful: “When I watch a video it tells me exactly what the people are doing. Like for instance, „now, he is sitting…now, she is waking or whatever”. And if they were going to have the emergency broadcasted on TV, you know, I would want them as a blind person to tell me, „now, she is sitting at her desk giving you information on what to do.‟ Or „now, he is doing, the firemen are going to go to downtown Portland‟ or whatever they are saying. I would want it described. As a blind person, this is my personal opinion…I think they are going to be scared because they are not going to see what is happening. They are going to hear all the 13 | P a g e Emergency Communications Plan for the Disability Community
commotion, whatever. But we are not going to be able to see it so it (the descriptive audio) would make you calmer.” Attitudinal Barriers / Respect. Respondents reported a variety of concerns that are rooted in experiences of caretakers taking over or being patronizing to people with disabilities. For example, one respondent commented: “There was fire in a building, disability housing…and somebody said, stay in your rooms. And that's not logical to me . . . The people that were more self-assured left (their rooms). And the people that were disabled or taught not to do things for themselves or something, the people that were taught to wait for directions kind of died and had more problems than people that just took a disaster into their own hands and left and did stuff.” Below is a somewhat lengthy dialogue that took place between participants that illuminates this theme more clearly (the names below are aliases): Marissa: What it always comes down to every time we have any of these kinds of discussions…is that we people with disabilities have to educate them. We have to say what we need. We have to be comfortable in our own skin. We have to be comfortable being authoritative and comfortable enough with our disabilities to say here [is] what I need…” Cat: And sometimes you have to be firm [about what you need]. Sometimes people think you are being mean and angry, when you are being firm. But being firm is, „I know what I mean. Do it.‟ Mark: If you have to start from a place where you have to combat their assumptions in order to get to a place where they are open-minded enough to listen to you. In a disaster situation, there‟s no time to deal with their assumptions. Cat: Because I guarantee you, they will take over. They won‟t listen to you. They won‟t care what you have to say. They will take over. Marissa: Especially with [people who have] speech impairment… Mark: My problem is that I can‟t get the bus driver to help me strap in because he‟s a minute and a half late on his route. What happens when there‟s a fire and I can‟t get anyone to listen to me? Cat: That‟s the main issue that we have as disabled, is people think we don‟t know our own bodies. And they know better than we do. Carol: Amen to that. Cat: It‟s so frustrating. Carol: It is, it is.
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Marissa: So the first thing we would want to teach all of those rescue workers is to listen to the people they‟re rescuing. Respect the people they are rescuing. Other Suggestions of Note: Central Clearinghouse. A suggestion emerged for a ―central clearinghouse‖ where people could call in to check on people with disabilities they were concerned about. One respondent suggested having an information registry at every neighborhood fire station for people with mobility impairments living in the vicinity. "… if I can't communicate with anybody, how (could) somebody call in and say, 'my son uses a wheelchair and I'm concerned that he was not able to get to a shelter'... But the problem is getting to a shelter. So when I'm at the shelter, there is probably ways already established how I can contact my family and all that stuff. But if I am in my house and the street is torn up, how am I going to get to the shelter?" Flash Cards. Three participants (in two focus groups) suggested it would be helpful for blind, or deaf-blind people to have special flash cards with Braille for communicating with firstresponders as a way of showing what type of disability he or she has. It was suggested that it could be handy for first responders to have these cards on hand: “ (if) police or fire department (responders)..had a series of cards ready, and they get to pull it out and hand it to me, or if I had something,(suppose) I‟m choking…gas line broke…I could figure it out quickly through the Braille and hand it (the card) to them, and they could read the back (of the card).” Summary – Listening / following instructions in event of an emergency. It’s important to provide information using diverse communication modalities. Transportation will be a particular issue for those who depend on public transportation. Lack of power would be a serious barrier to having people listen to and follow instructions. This is particularly true for those who are limited to visual communications via text messaging, email and/or internet. The fear of being left-behind is real, and may hinder efforts by first responders.
3. Community Preparedness Needs Research question #4. To what extent are participants prepared for an emergency? There is much opportunity to improve the level of preparedness among all respondents. Nearly 75% of the online survey respondents reported feeling a little prepared or not prepared at all for a public health emergency (see Table 15). Nearly 70% (26 of 38) of the online survey respondents who indicated they would need an accessible shelter did not know where an accessible shelter is located (see Table 16). 15 | P a g e Emergency Communications Plan for the Disability Community
Having a Plan. We asked 5 questions on the online survey in order to gauge the degree to which people have a plan (see Table 17). We gave an option for respondents to indicate that if they were not prepared and thus could not answer affirmatively to any of the 5 questions. Below are the results: Nearly half of the respondents knew how to contact other people for help, and 44.2% knew how to contact family members 11.6% either had a written list of contacts or knew where to meet their family members in case of an emergency One person had a written plan. These results resonate with the focus group responses as well. Table 17 also illustrates a pattern: those who knew where to meet their family in an emergency, also often knew how to contact their family members and others for help. However, having a written contact list did not seem be associated with knowing where to meet family members (or having a written plan). Nearly one third of the online respondents indicated they did not have important information written and readily accessible in event of an emergency (see Table 18). The low percentage of those having important written information, such as family members’ contact information (51%), health providers’ contact information (46.5%), insurance information (41.9%), list of medications (37.2%), and other information leaves opportunities for improved emergency preparedness (see Table 18). We noted the following themes from the focus groups about having a plan: In the focus groups, many respondents did not have a plan. A few cited ICE (In Case of Emergency) on cell phones as the extent of their planning. Changing life situations (disability, moving, etc) caused emergency plans to be outdated. Go-Kits. Over 75% of the respondents reporting not having any type of emergency kit or ―gokit‖ (see Table 19). Seven of the 8 respondents who had a kit reported having both flashlights and radios in their go-kits (see Table 20). One person reported having a 14-day supply of medicines. Two reported having sharpie pens in their kit. Three of the eight (37.5%) reported having food and water in their kits. There were many challenges, barriers, and suggestions mentioned by focus group participants about what makes it harder or easier to have some type of ―go-kit‖ (which some called a gopack and others an emergency box). Below is an example of the challenges expressed by one participant: “When I read all the stuff that needs to go in there (go-kit), it‟s enormous. I can‟t go anywhere with that on my back . . . When I add the stuff for the dog . . . water . . . food . . . bedding, which is all this heavy stuff . . . Who has spare cash . . . if you are disabled, to be putting in a go pack . . . credit cards is not going to work . . . Ask the doctor can you give me extra medicines to[be] putting [in] my go pack? They look at me crazy . . . Some of the list I understand . . . But in reality it‟s impossible in real life to do all this.”
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Some participants had attended trainings in which they were given lists of what to include in a go-kit. For some that has been helpful. It was notable, however, that a few respondents who had attended such trainings still did not have a go-kit at home. One respondent suggested it would be helpful if there was an activity where people with disabilities came together to assemble their kits to take home: “Just have a meeting in a big room or like here's the stuff, take one of everything. … Like maybe get it quality controlled looked at. Then when you're home, you put your personal stuff in it like your own medication. Then it would be done.” We noted the following themes from the focus groups about having a ―go-kit‖: A few respondents have supplies for 3 days (food, water, etc). Many of these individuals either had training, or have experienced being ―stranded‖ or in a disaster before. People with mobility disabilities, people who have many medications, and/or people who have a service animal/guide dog, have additional items to think about for their go-kit which can make preparing a go-kit daunting. Changing life situations (e.g. changes in disability status requiring different equipment or medicines) caused go-kits to become outdated. Space for storage of the go-kits and money/resources for securing items for the go-kits were commonly raised as barriers. For some respondents it was helpful to get a list of what to put in a go-kit along with other planning information. Many felt additional training or assistance in putting together an emergency plan and gokit would be helpful. ICE and Lifelines. ICE (In Case of Emergency) and lifeline buttons emerged as well as a strategy for a few of the respondents. Gas/Water. Nearly 2/3rds of the respondents did not know how to turn off the gas or water mains in case of an emergency (see Table 21). Voluntary Emergency Registry (VER). The Volunteer Emergency Registry, a joint project of the City of Portland and the Multnomah County Division of Aging and Disability Services, is a disaster registry for persons with disabilities and activity limitations. It has been in place for nearly a year and is still relatively unknown among both online respondents and focus group respondents. Half of the Multnomah County respondents did not know about the VER (see Table 22). Of those who did, 37.5% reported being registered (see Table 23). This result accords with the focus group results as well. From the focus groups, we learned that nearly everyone supported the concept of the VER. Suggestions included developing a systematic outreach plan to ensure that everyone knows about this system. Barriers to registration mentioned by respondents included the following: Lack of internet access Lack of awareness of the VER Inaccessible website for people who are blind or have low vision Fear of giving private information to ―big brother‖ Fear of computer hackers getting into the registry and getting their information 17 | P a g e Emergency Communications Plan for the Disability Community
Fear of being labeled or categorized as disabled– and then being ―hassled‖ by emergency responders. Summary – Community Preparedness Needs Barriers were identified that hamper respondents’ abilities to prepare for an emergency: Lack of financial resources to buy the supplies for the go-kits, for food, batteries, etc. Insufficient space to put the go-kits in small housing units. Lack of information about the Voluntary Emergency Registry (VER). Not having (or knowing about) something similar to the VER in Clackamas or Washington County. Lack of information on what to put in a go-kit in accessible formats and clear language.
4. Community Communication Plan Research question #5. What are the important components needed for the development of a culturally specific plan for the disability community? The Disability Community. One of the questions that frequently arises when talking about the disability community is whether there is such a ―community.‖ This issue is particularly relevant in regards to developing a culturally specific plan. Nearly three quarters of the survey respondents (31 of 43) said they did identify as a member of the disability community (6 said ―no‖, and 6 did not answer the question). Of those, 65% (n=21) went on to indicate that they identified with a specific sub-community within the disability community. One person who said ―no‖ to being a member of the disability community, indicated membership in the Deaf community. This response actually reflects one of the cultural nuances within the Deaf community, where many Deaf people define themselves as members of a cultural linguistic community—not as members of the disability community. While our sample is limited, representing mostly those already connected to the disability community, this concept of a ―disability community‖ cannot be discounted. For many, there is such a community, which could be a valuable resource for emergency planners and first responders. Support for a Culturally Specific Emergency Plan. Respondents provided enthusiastic support for having a culturally specific emergency plan for the disability community. Nearly 80% (34 of 43) of the online survey respondents said ―yes‖ to the question: ―Do you think we should have a specific communications plan for the disability community?‖ No one said ―no.‖ Four indicated ―not sure.‖ One of the respondents who responded ―not sure‖ clarified his/her comment by saying: ―depending upon the disability type, many of the disabled can successfully get their information about disasters/emergencies in the same way [as nondisabled people].‖ An example of a supportive comment is the following: “I‟m definitely in agreement because number one, a lot of times we‟re already on the exclusion list on a lot of groups to access, and number two, everyone being able to participate in group meetings, neighborhood meetings are not always in Braille, and they don‟t have services for disability folks...this would at least give everyone, I believe, an equal opportunity to survive in emergency situations rather than being left behind.” 18 | P a g e Emergency Communications Plan for the Disability Community
One respondent also believed such a plan would help to create community: “I see it as actually a way to develop community and a stronger connection…And I think that through volunteerism that you can actually strengthen your community for a very noteworthy cause.” Support for a Culturally Specific Community Connectors. When asked if we should have culturally specific first responders or Community Connectors in the disability community, the response was also very positive, and respondents provided a few suggestions for how such a project could be implemented. “The point person also could meet with the organization who's putting out the information. …[the point person could-or direct others to] pick you up, something like that. So this whole thing could be organized. I think point people are very, very valuable . . . The point people are grass roots. And come from a community that's going to trust them. And they could also offer information.” Trust is another issue that came up repeatedly in the focus groups in various contexts. In regards to having a point person or Community Connector, one person verbalized a key aspect of this issue: “… there are people in the disability community who are highly respected. They may not be exactly leaders, but they're highly respected and trusted by the rest of the community…we need people whose integrity is not questionable. Because we need people that we know and that we know are going to be trusted. That way if we trust them, you know, whatever that she says or he says is accurate.” There was also support for having Community Connectors who can communicate in ASL: “Definitely for the Deaf people themselves to contact who can communicate these messages in ASL...or on the TTY or on a video log or something so it it‟s written in ASL so the Deaf people can understanding. The hearing people might look at it and be puzzled, but the Deaf people can understand.” Contacting Someone in the Disability Community. Less than a quarter of survey respondents (n=9, 20.9%) answered ―yes‖ to the question: “Is there someone/some organization in your disability community you would go to/contact in case of an emergency?‖ (Table 24). This suggests that, for some people with disabilities, a focus on disability organizations will not be sufficient in developing an effective communications plan. Trusted Organizations and Spokespeople. Case managers in organizations providing service, as well as leaders and representatives, were viewed as trusted spokespersons. Trusted organizations included both disability advocacy organizations and other advocacy/service organizations that are not specific to people with disabilities. At least three categories of organizations/individuals appear to have a role in outreach efforts:
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1. Disability service providers/organizations. For some people with disabilities (e.g. the newly disabled, people with mental illness, the blind), individuals and organizations that provide services to people with disabilities are a key source of information. Examples include: Cascadia Behavioral Health Center, Independent Living Resources, MS Society, Northwest Human Services Connections Program, Oregon Commission for the Blind, and INCIGHT. 2. “Politically Organized” Disability Organizations. These organizations tend to be focused upon advocacy, rather than the provision of direct services. Examples are: ADAPT (www.adapt.org), American Association of People with Disabilities, Autistic Self Advocacy Network, Consumer Voices are Born (CVAB), National Alliance on Mental Illness (NAMI), Portland Citizens Disability Advisory Committee (City of Portland), Portland Impact, Project Access of Northwest Oregon & Washington (Project Access NOW), and the Oregon Association of the Deaf. 3. Mainstream Organizations. Other types of organizations mentioned by respondents as trusted sources of information included mainstream organizations that provide services to the larger community. Respondents’ examples included: Ecumenical Ministries of Oregon (EMO), Portland Rescue Mission, and Jewish Family Services. Neighbors / Neighborhood Associations. Neighbors and neighborhood associations emerged from the focus groups as a potentially important asset to consider in developing a culturally specific communications plan in the disability community. We believe this is in part because of how Portland is organized, with a strong system of neighborhood associations. In addition, many of the focus group participants named their neighbors as key people from whom they would seek assistance in an emergency. Below are comments representative of this strong theme that emerged in nearly all focus groups: “One thing that some of the communities in the Portland area do . . . once a year they have what they call their night out. Where they meet with police, fire and those kinds of workers. And they kind of formulate a plan for like crime, if certain crimes happen what to do and who to go to. And they usually make a party out of it. We used to do that when I lived in (Name of neighborhood in Portland). And they blocked off the streets. And the people would bring food. You know, it was kind of neat.” Another participant said: “I picked neighborhood representatives as in there are neighborhood associations for every neighborhood in Portland. And each neighborhood has an association of people in the community and I, in my mind, would see setting up neighborhood information based through each neighborhood association.” Additionally, the intersections of neighborhoods and the disability community was a theme that emerged from the focus groups.
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“…and I would make it (the culturally specific plan) neighborhood-based though. Where do you primarily live? work? . . . I would hope when they establish the emergency plan, they build it around the community model. Make sure of the community centers as much as possible. Where is the fire station you were talking about? Where is your local hospital? What surrounds you in your neighborhood support structure that you could potentially call on? And how many people really know that?” Training. While training came up as a prominent need for nondisabled emergency personnel, respondents also felt that people with disabilities needed training and increased awareness. Three training needs are described further below. 1. Traditional First Responders. Not only is training helpful in facilitating communication during an emergency, but the knowledge that first responders have been trained to work appropriately with people with disabilities can help reduce fears and concerns on the part of disabled people. For example, if first responders (and accessible shelters, etc.) know how to deal with service animals, this will reduce anxiety, and facilitate better outcomes in the event of an emergency. Training will help also in developing trust. As one respondent commented, “I would probably trust fire fighters and police. But I just want to know that they have the training.” Another person related training to trust and fear: ―…a big barrier to all of this is just the fear... I get a first responder coming who doesn‟t know what to do because they don‟t have training, and I am afraid they don‟t know what to do. So it‟s all just broken down already.” 2. Community Connectors/First Responders in the Disability Community. The positive response to this idea makes sense given the diversity in the disability community, the many modes of communication, and issues that are uniquely related to a given impairment. A clear message from the focus groups was the need for cross-training among people with disabilities so that the individuals involved as responders would be knowledgeable of communication or accessibility needs of other people with disabilities beyond their own disability group. 3. Training/Information Desired to be Better Prepared for Emergencies. The top three topics of interest for future trainings are: food and water storage (83.7%), putting together a survival kit (74.4%), and preparing an escape plan (67.4%) (Table 25). Earthquakes, fire proofing, epidemic outbreak, severe storm, power outages and terrorist attacks were the next six topics about which respondents wanted more information, in order of frequency (Table 26). Factors that may undermine efforts to develop a plan: Attitudinal Barriers / Respect. Although this was mentioned before, the lack of respect and regard and other attitudinal barriers is a very serious issue. Involving people with disabilities at ―the big table‖ with the decision-makers and other first responders will be helpful in demonstrating respect. Underutilization of Strengths and Skills. The skills of disabled people may be underutilized in event of an emergency. These skills and strengths can be of tremendous help, but will go 21 | P a g e Emergency Communications Plan for the Disability Community
unnoticed if people with disabilities continue to be viewed only as clients or people to help, and not as helpers and partners. Rich Diversity. Many participants commented that while some people with disabilities might be extremely knowledgeable about the needs and issues associated with their particular impairment, they may not know about the needs of other people with disabilities. For example, one participant noted how Deaf people often do not understand the issues associated with using a service animal. Another participant stressed the importance of training, even for people with disabilities. Sighted people with disabilities are, after all, still sighted, and may not understand the need for clear, concise communications, for example. People with mobility impairments may not understand about the role of texting in the Deaf community. Conversely, people with sensory disabilities may not understand the ramifications of a power outage, making it impossible for a person using a mobility device to use the elevator to evacuate from an apartment. While it may be challenging, it will be important to recognize that in order to be fully inclusive, there will be a need for a cross-disability focus and cross-disability training, even among people with disabilities.
Recommendations Further research. Given the exploratory nature of this project, our findings need to be understood within their limitations. The formats we employed (focus groups and online survey) may have resulted in excluding members from certain disability populations, and/or result in questions not being understood or completed. Exploration of our findings with community forums and discussion groups will be helpful, particularly in those disability sub-communities that were not well represented in the survey and focus groups. Additionally, future research should be designed to evaluate the issues that face people of color with disabilities, and who experience other axes of diversity. Communication Pathways to Explore and Develop. Responses from survey and focus group respondents point to four main communication pathways among people in the disability community. These pathways will be important to explore and develop further for emergency communications planning: 1.
Neighbors / Neighborhood Associations. Neighbors and neighborhood associations emerged from the focus groups as a potentially important asset to consider in developing a culturally specific communications plan in the disability community. Many of the focus group participants identified their neighbors as people from whom they would seek assistance, if needed. Additionally, the intersections between neighborhoods and the disability community was a theme that emerged from the focus groups. It would be useful to bring together members of the neighborhood associations and members of the disability community to maximize the strengths and resources of both communities.
2. Disability service providers/organizations. For some people with disabilities (e.g. newly disabled, mental health, blindness), individuals and organizations that provide services to people with disabilities are key sources of information.
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3. “Politically Organized” Disability Organizations. These organizations tend to be focused upon advocacy, rather than the provision of direct services. 4. Mainstream organizations. Other types of disability organizations mentioned by respondents as trusted sources of information included organizations that provide services to the larger community. Development of a culturally specific communications plan should incorporate the following key messages from participants: Develop a communications plan that creates a unified, accessible system, conveys respect, and does not patronize people with disabilities. Take a cross-disability approach and ensure that the communications plan is inclusive of all people with disabilities. Develop and ―grow‖ Community Connectors from the disability community. Involve these Community Connectors and other leaders from the disability community as equal partners with other first responders. Plan in advance to ensure an effective, organized, community-wide system. Outreach broadly, in an accessible and systematic manner. Provide ongoing training for three populations: traditional first responders, Community Connectors in the disability community, and other people with disabilities. Training needs to be available in more than one medium (e.g. written, audio, visual). Cross-disability training will be important to ensure inclusiveness.
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References Fox, M. H., White, G. W., Rooney, C., & Rowland, J. L. (2007). Disaster preparedness and response for persons with mobility impairments. Journal of Disability Policy Studies, 17(4), 196-205. Kailes, J. I., & Enders, A. (2007). Moving beyond "Special Needs": A function-based framework for emergency management and planning. Journal of Disability Policy Studies, 17(4), 230-237. Morgan, D., L. (2008). Interview questions & Generic focus group introduction. Unpublished Handouts presented in class. Portland State University. Morgan, D. L. (1997). Focus groups as qualitative research (2nd ed.). Thousand Oaks, CA. Rooney, C., & White, G. W. (2007). Consumer perspective: Narrative analyis of a disaster preparedness and emergency response survey from persons with mobility impairments. Journal of Disability Policy Studies, 17(4), 206-215. Rowland, J. L., White, G. W., Fox, M. H., & Rooney, C. (2007). Emergency response training practices for people with disabilities: Analysis of some current practices and recommendations for future training programs. Journal of Disability Policy Studies, 17(4), 216-222. U.S. Census Bureau. (2006). Table S1801. Disability Characteristics Summary Table (Publication. Retrieved May 2, 2008, from U.S. Census Bureau: http://factfinder.census.gov White, G. W. (2007). Katrina and other disasters. Journal of Disability Policy Studies, 17(4), 194-195.
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Appendix A: TABLES Table 1: Age, Race and Ethnicity Age Age 18-40 Age41-54 Age 55-64 Age Range, Mean Race African American/Black White/Caucasian More than one race Prefer not to say/refuse Ethnicity Non-Hispanic Latino / Hispanic Prefer not to say Missing
Online Survey (N=43)
Focus Group (N=22)
N 9 19 15 22-63; M=48.5
% 20.9% 44.2% 34.9%
N % 2 9.1% 9 40.9% 11 50.0% 32-61; M=52.2
1 37 3 2
2.3% 86.0% 7.0% 4.7%
0 22 0 0
0.0% 100.0% 0.0% 0.0%
35 1 2 5
81.4% 2.3% 4.7% 11.6%
18 0 0 4
81.8% 0.0% 0.0% 18.2%
Table 2: County of Residence (Online Survey, N=43) Multnomah Washington Clackamas Tri-County Area Totals Clark (Washington State) Marion (Salem) Other Oregon County Not Clear Total
N 18 6 6 30 5 3 3 2 43
% 41.9% 14.0% 14.0% 69.8% 11.6% 7.0% 7.0% 4.7% 100.0%
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Table 3: Living Status (Online Survey, N=43) Live Alone? (N=43) Live alone Live with others Live with others- Who? (N=23) Adult family member / partner Both adults & children/teens Housemate/friend Missing (did not answer)
N
%
20 23
46.5% 53.5%
15 5 2 1
65.2% 21.7% 8.7% 4.3%
*All but one, who didn't answer the question, indicated living in a house/appt.
Table 4: Number of Disabilities Reported (for each person) Online Survey (N=43) One Two Three Four or more Totals
N 24 10 5 4 43
% 55.8% 23.3% 11.6% 9.3% 100.0%
Focus Group (N=22) N 11 3 5 3 22
% 50.0% 13.6% 22.7% 13.6% 100.0%
Table 5: Disability(ies) Reported by Participants Online Survey Focus Group (N=22) (N=43) N % N % Physical/Mobility 19 44.2% Physical/Mobility 13 59.1% Deaf 13 30.2% Blind/Low Vision 12 54.5% Respiratory 11 25.6% Mental health 8 36.4% Learning (including ADHD) 6 14.0% Other 4 18.2% Mental Health/Psychiatric 6 14.0% Cognitive 3 13.6% Low Vision 5 11.6% Deaf 1 4.5% Other* 5 11.6% Deaf/Blind 1 4.5% Blind 4 9.3% Learning 1 4.5% Cognitive 4 9.3% Hard of Hearing** 4 9.3% Speech/Autistic *** 1 2.3% *These included the following conditions: Hepatitis C, Diabetes, Growth Hormone Deficiency, Fibromyalgia, Sleep apnea, Heart problems. **One person reported being both hard of hearing and having low vision. ***One person reported both speech and autistic, thus combined here.
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Table 6. Preferred Sources for Important Health Information (N=43) All Others* (N=21)
Deaf (N=13)
Vision** (N=9)
N
%
N
%
N
%
TV
17
81.0%
6
46.2%
6 66.7%
Radio Fire / EMS personnel
13 12
61.9% 57.1%
5
38.5%
3 33.3% 6 66.7%
Police Health Provider
10 10
47.6% 47.6%
3 4
23.1% 30.8%
5 3
55.6% 33.3%
Family / Friends County Health Dept
9 7
42.9% 33.3%
7 2
53.8% 15.4%
4 2
44.4% 22.2%
Local disability organization Employer
7 5
33.3% 23.8%
3 3
23.1% 23.1%
1 4
11.1% 44.4%
Local Social Services 211 Information services
3 3
14.3% 14.3%
3
23.1%
1 3
11.1% 33.3%
Missing
1
4.8%
2
15.4%
1
11.1%
* All Others excluded Deaf, blind and low vision respondents. **Vision includes blind (N=4) & low vision (N=5).
Table 7: Focus Group Question # 2: Preferred Categories of Contact N Family /Friends/Neighbors 26 Immediate Family 8 EMS 8 Police 8 Lifeline 5 Building Mgr/Person in Charge 3 Fire 3 Other Person / All 2 Total 63
% 41% 13% 13% 13% 8% 5% 5% 3% 100%
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Table 8: Focus Group Question # 2: Preferred Ways to Contact Source of Information N Phone 33 Cell 12 In person 4 Text Messaging / Pager 4 Email 3 Lifeline 2 Missing 2 Relay 1 TV 1 Family /Friends/Neighbors 1 Total 63
% 52% 19% 6% 6% 5% 3% 3% 2% 2% 2% 100%
Note: Each person listed three ways preferred to get information
Table 9: Communication Modes/Devices Used Regularly (Online Survey, N=29) Deaf/HoH* (N=17)
Pager / PDA/ Cell Phone for Texting American Sign Language Captioning Videophone / Video Relay Relay Large print Screen reader Internet Phone (VOIP) TTY (text teletypewriter) Cap Tel (Captioning Phone) Braille FM / Listening System Missing (did not answer)
N
%
13 13 10 11 6
100.0% 100.0% 76.9% 84.6% 46.2%
2 2 2 1
Blind/Low Vision (N=9)
All Others**
N
N
%
2
6.9%
1
3.4%
1 1 3
3.4% 3.4% 10.3%
3
10.3%
%
5 5
38.5% 38.5%
1
7.7%
15.4% 15.4% 15.4% 7.7%
*HoH=Hard of Hearing. **Excluded 14 who indicated: "My disability does not involve communication." One respondent reported both low vision and hard of hearing loss.
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Table 10: Telecommunications Devices Used at Home (Online Survey, N=43) N
Computer (email and other) Cell Phone Telephone (landline) Video Relay via Internet Video Relay w/ Phone (Landline) Fax Machine Internet Phone (VOIP) TTY/CapTel (w/ landline phone) None
All Reponses %
Mobility (N=19) N %
Deaf (N=13) N %
Vision*(N=10) N %
8 6 8
38 28 24 11
88.4% 65.1% 55.8% 25.6%
19 16 14 1
100.0% 84.2% 73.7% 5.3%
12 5 2 11
92.3% 38.5% 15.4% 84.6%
8 7 6
18.6% 16.3% 14.0%
1 4 4
5.3% 21.1% 21.1%
8 1 1
61.5% 7.7% 7.7%
4 1
9.3% 2.3%
1
5.3%
4
30.8%
88.9% 66.7% 88.9%
*Vision includes blind (N=4) and low vision (N=5)
Table 11: Telecommunications Devices Used at Work (N=29) N Telephone (landline) Cell Phone Fax Machine TTY/CapTel (with landline phone) Video Relay with Phone (Landline) Video Relay via Internet Computer (email and other) Internet Phone (VOIP) Pagers/Text Messaging*
%
17 39.5% 15 34.9% 12 27.9% 4 9.3% 5 11.6% 6 14.0% 21 48.8% 2 4.7% 2 4.7%
Excluded 14 who indicated: "My disability does not involve communication." * This was added later, using comments from survey, thus best to assume undercounting.
Table 12: Television- Being Digital Ready Not Ready: need converter box/digital TV Ready Total
N
%
12 27 39
30.8% 69.2% 100.0%
Note: Excluded 4 respondents who don't have or use a TV.
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Table 13. From whom would you listen to/follow instructions? (N=43) All Others* (N=22)
TV Fire / EMS personnel Police Family / Friends Radio Health Provider County Health Dept Employer Local disability organization Local Social Services 211 Information services Missing*
N 18 17 15 10 13 7 6 5 6 4 3 1
Deaf (N=13)
% 81.8% 77.3% 68.2% 45.5% 59.1% 31.8% 27.3% 22.7% 27.3% 18.2% 13.6% 4.5%
N 7 7 5 7
Vision** (N=9)
% 53.8% 53.8% 38.5% 53.8%
4 30.8% 3 23.1% 3 23.1% 1
7.7%
3 23.1%
N 7 7 6 4 4 4 4 3 1 1 3 1
% 77.8% 77.8% 66.7% 44.4% 44.4% 44.4% 44.4% 33.3% 11.1% 11.1% 33.3% 11.1%
*Two of the Deaf respondents not answering the question indicated internet and pager as means of listening and following instructions.
Table 14: Vaccines Would you get a vaccine at a county clinic? No Yes Maybe Missing Total Reasons for not getting a vaccine* (N=6) Vaccine may make me sick Allergies Prefer own doctor Would want full information first Unnecessary
N
%
7 27 8 1 43
16.3% 62.8% 18.6% 2.3% 100.0%
1 2 1 1 1
*Includes responses from those who indicated "maybe" in getting a vaccine.
Table 15: Feeling Prepared for a Public Health Emergency N % Not at all 10 23.3 A little 22 51.2 Fairly 5 11.6 Very 4 9.3 Missing 2 4.7 Total
43
100
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Table 16. If you need an accessible shelter/temporary housing, do you know: N
%
Knows where to go* 7 18.4% Don't know where to go 26 68.4% Missing 5 13.2% Total 38 100.0% Excluded 5 respondents who indicated NA for this item. *Of those knowing where to go, 4 knew how to get there and three of also had the phone numbers. Table 17: Plan Components Reported by Online Survey Respondents (N=25*) Respondent 1. Written 2. Where to 3. Written 4. Family5. How Contact Number Plan Meet Family Contacts List How Others (N=1, 4%) (N=5, 20%) (N=5, 20%) (N=19, 76%) (N=21, 84%) 1 X 2 X 3 X 4 X 5 X 9 X 7 X 8 X X 9 X X 10 X X 11 X X 12 X X 13 X X 14 X X 15 X X 16 X X X 17 X X X 18 X X X 19 X X X 20 X X X 21 X X X 22 X X X 23 X X X 24 X X X 25 X Questions corresponding to the columns above: 1. Have a written plan, 2. Know where to meet family, 3. Have a written list of contacts, 4. Know how to contact family, 5. Know how to contact other people for help. *This total does not include 16 Persons reported not being prepared, and two with missing data. Two persons who did report being not prepared were not excluded as they had indicated having a written plan, and knew how to contact others.
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Table 18: Information Written & Accessible in an Emergency N
%
Family Members (contact information) 22 51% Health Providers (contact information) 20 46.5% Insurance information 18 41.9% List of Medications 16 37.2% Other people who can help (contact information) 14 32.6% None 14 32.6% Medical conditions 13 30.2% Immunization dates 3 7.0% Assistance needed 2 4.7% Other 1 2.3% Missing** 2 4.7% **One did not answer the questions, but provided text indicating use of cell phone for names/numbers, and medic-alert tags for primary health conditions. Table 19: Have any type of emergency kit of a "to-go" kit N No 33 Yes 8 Missing 2 Total
43
% 76.7% 18.6 4.7 100
Table 20. Items in "Go-Kits" by Respondent ID
# in Kit
% of Items in Kit
1
1
9.1%
2 3 4 5 6 7
3 3 4 8 9 9
27.3% 27.3% 36.4% 72.7% 81.8% 81.8%
1. Meds
2. Health infor
3. Flash
4. Radio
X X X X X X X
X X X X X X X
5. Batt
6. Food Water
7. List
8. Signal Dev.
9. Writing Suppl.
10. Pen
11. Zip Lock
X X X X X X
X X X X X X
X X X
X X X
X X X X
X X X X X
X
X X X X
8 10 90.9% X Totals: N 1 4 7 7 4 3 5 5 5 2 4 (%) (9.1) (50) (88) (88) (50) (37.5) (62.5) (62.5) (62.5) (25) (50) Note: ID= Respondent #; Questions #1 =14 day medical supply, 2= Health Information, 3=Flashlight, 4= Radio, 5=Batteries, 6=Food/Water, 7. List of Important Contacts, 8. Signaling Devices, 9. Writing Supplies, 10=Zip Lock Bags.
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Table 21: Able to (or direct others) Turn Off Gas, Water N
%
2 14 25 41 *The respondents answering yes to gas, did not answer yes to water. Excluded 1 missing answer, and 1 answering "NA".
4.9% 34.1% 61.0% 100.0%
Gas* Water Don't know Total
Table 22: Voluntary Emergency Registry (VERS) By County of Residence Not Aware Aware % Aware Total Multnomah 9 9 50.0% 18 Washington 4 1 20.0% 5 Clackamas 6 0 0.0% 6 Clark (Washington State) 5 0 0.0% 5 Marion (Salem) 3 0 0.0% 3 Other Oregon County 3 0 0.0% 3 Not Clear 2 0 0.0% 2 Total 32 10 23.8% 42 Excluding one missing response from a Washington County respondent.
Table 23: If know about VERS, are you signed up? By County of Residence No/Don't Know Yes/Signed Up % Signed Up Total Multnomah 5 3 37.5% 8 All Others 6 1 14.3% 7 Total 11 4 26.7% 15 Excluded two missing responses (from a Washington and Mult Co. Respondents).
Table 24: Is there someone/some organization in your disability community you would go to/contact in case of an emergency? N No Yes Not Applicable Missing Total
20 9 8 6 43
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% 46.5% 20.9% 18.6% 14.0% 100.0%
Table 25: Emergency Preparedness Topics -More Information Desired Food and water storage Putting together a survival kit Preparing an escape plan Fire proofing your house/apt Making a list of contacts Shelters (accessible, take pets, oxygen, etc)* Others (excluding shelter related)** Missing
N
%
36 32 29 25 22 6 4 1
83.7% 74.4% 67.4% 58.1% 51.2% 14.0% 9.3% 2.3%
*Assume this figure is an undercount as it was derived indirectly from "other." **Includes request for information about communication access (including interpreter, videophones), pets, and securing medical supplies.
Table 26: Information Desired by Type of Disaster Earthquake Fire proofing your house/apt Epidemic Outbreak Severe storm Power Outages Terrorist attack Flooding Hazardous Materials/Spills Other* Missing
N
%
31 30 29 28 27 27 22 20 4 3
72.1% 69.8% 67.4% 65.1% 62.8% 62.8% 51.2% 46.5% 9.3% 7.0%
*Two wanted all information listed; other info requested included about communication access for information during the emergency and about nuclear attack.
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Appendix B: Glossary of terms pertaining to communication devices used by Deaf, deaf-blind, hard of hearing and people with speech impairments TTY stands for Text Telephone which is a special device that lets people who are deaf, hard of hearing, or speech-impaired use the telephone to communicate, by allowing them to type messages back and forth to one another instead of talking and listening. A TTY is required at both ends of the conversation in order to communicate. Relay refers to a free, 24-hour telecommunications relay service that allows people who are deaf, hard of hearing, deaf-blind or speech disabled to communicate via the telephone with a highly trained Communication Assistant (CA). Through the use of specialized equipment such as TTYs or other device that is used to type message, CA facilitates the call for relay users to communicate freely with their hearing parties. The CA reads those messages to the hearing party on the other end of the line – then types the hearing party’s responses for the relay user to read. Video relay is similar to a relay except with web camera to communicate via sign language. The on-screen interpreter then voices to the hearing caller – and signs the responses back to the relay user. This type of method doesn’t need to say ―GA‖ or go ahead after one person finishes his or her turn to speak, like the relay service. Videophone is a telephone with a viewing screen and a built-in camera on a TV or computer monitor. A Deaf user who can make video calls to see and sign with them at the same time uses a videophone. Similar to video relay but a videophone is required at both ends of the conversation. ASL interpreters are trained professionals who provide the necessary communication link between hearing and deaf or hard of hearing individuals. Sign-language interpreters interpret the signed message into spoken English for the hearing individual; they also interpret the spoken message for the individual who is deaf or hard of hearing. Tactile interpreters are similar to ASL interpreters, but work with deaf or hard of hearing individuals who have a visual impairment and receive communication through touch. CapTel (Captioned Telephone) is a telephone technology that allows people to receive wordfor-word captions of their telephone conversations. It is similar in concept to watching close captioned on TV, where spoken words appear as written test for viewers to read. The CapTel phone looks and works like any regular telephone but with captions that are displayed on the phone’s built-in screen so the user can read the words while listening to the voice of the other party on a regular telephone. This is suitable for many people who can voice for themselves, and have some hearing.
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Appendix C: ONLINE SURVEY QUESTIONS A. General Demographical Information 1. Are you older than 18? Circle One: Yes/ No 2. Do you have a disability? Circle One: Yes/ No
If you answered “No” to either #1 or #2, please STOP here. You must be age 18 or older and have a disability to participate in this survey. 3. Month and Year of Birth: _ _/_ _ _ _ 4. What is your race? (check all that apply)
African American / Black Asian / Pacific Islander Native American / Alaskan Native White / Caucasian Don’t Know
5. What is your ethnicity? Non-Hispanic Latino / Hispanic Don’t Know 6. Is English your preferred language? Circle One: Yes/ No 6.a. If no, which language do you prefer to receive important information in? Spanish Russian Vietnamese Other: _____________ 7. Do you live in a:
Family home/apartment Group home Nursing home School Housing Other___________ 8. Do you live alone? Circle One: Yes/ No 8a. If not, who lives with you? (Check all that apply) Family Roommate/friend(s) Children Personal assistant Other____________ B. Disability- Specific Information 1. What is your type of disability or impairment: (Check all that apply) Vision/ Sight Deaf / Hard of Hearing Physical / Mobility Learning Mental Health/Psychiatric Intellectual
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Traumatic brain injury Autistic Other Disability_______________ 2. What communication modes/devices below do you use regularly? (Check all that apply)
Braille Large print Screen reader on your computer American Sign Language (ASL) Another form of sign language: __________________ Captioning Pager / PDA / cell phone for texting messages Video Relay Relay (Oregon Relay, 711) TTY CapTel (phone) FM / Listening System Other communication device ______________ Not applicable / my disability does not involve communication 3. What assistive devices below do you use regularly? (Check all that apply) Manual wheelchair Power wheelchair (or scooter) Walker, crutch(es), brace(s) or other orthotic/prosthetic device(s) Standing Frame(s) Service Animal / Guide dog Hospital bed Ventilator or Respirator Other: ______________ Not applicable / No Assistive Device Used 4. Do you use assistance for personal care? Circle One: Yes/ No 4.a. If so, how often? (Check one) 1-2 times/week 3-6 times / week Daily 4.b. Who provides most of that personal care assistance? (Check one) Family Friend Other: ______________ C. General Communication / Telecommunications 1. Check all of the following telecommunication devices used at HOME (if any): Telephone (landline) Cell Phone Fax Machine TTY or CapTel -with phone (landline) Video Relay-with phone (landline)
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Video Relay-via Internet (computer) Computer (email and other) 2. Check all of the following telecommunication devices used at WORK (if any): Telephone (landline) Cell Phone Fax Machine TTY or CapTel -with phone (landline) Video Relay-with phone (landline) Video Relay-via Internet (computer) Computer (email and other) Not applicable—do not work outside the home, or work does not use or require me to use these devices. 3. Do you use a computer at home or work for: (Check all that apply): Email Video Relay Not applicable-do not use/have computer at home or work 4. If you use the TV at home, is your TV digitally ready when analog TV goes away in February 2009? (Check one) No----Need to get converter box or digital TV Yes---Have converter box, or digital TV Not applicable / Don’t have or use the TV D. Personal Emergency Preparedness 1. How prepared do you feel, you and your family are, in case of an emergency? Not at all prepared A little prepared Fairly prepared Very prepared 2. If there were an emergency do you: (Check all that apply): Have a written plan? Know where to meet your family? Know how to contact your family? Know how to contact other people who can help you (such as a friend, personal care assistant)? Have a written list of people to contact? 3. Do you have any of the following health information written down, and easily accessible in case of an emergency? (Check all that apply) Names and phone numbers of doctors/health providers Names and phone numbers of family members Names and phone numbers of other people you can call on to help you such as personal care assistants, neighbors, and/or friends Insurance information A list of your medications Medical conditions (e.g. allergies, blood type) Immunization dates Assistance needed
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Other (specify) __________________________________________ NONE: I don’t have any of these items ―ready to go‖ in an emergency. 4. If you were asked to get a vaccine against a contagious disease at a county clinic, would you get it? Circle One: Yes/ No 4.a. If no, please explain: I am not worried about contracting a contagious disease I am afraid the vaccine might make me sick Other (please explain) 5. Do you have any type of emergency kit or a ―to-go‖ kit that you can pick up at a moment’s notice and take with you? Circle One: Yes/ No 6. If so, are any of the following in a prepared and available ―to go‖ kit: (Check all that apply) 7 day supply of medicines Health information (eg. Health care provider, insurance information, list of medications, medical conditions, immunization dates) Flashlight Radio Batteries (for flashlight, radio) Food/Water List of important contacts (e.g. Family, Emergency Shelter, Red Cross) Signaling device (e.g. whistle, flashing light) Writing supplies (e.g. Pen, paper) Sharpie Pen (permanent marker) Zip lock bags (to hold batteries, food, etc) 7. Are you aware of the Multnomah County Volunteer Emergency Registry (VER)? Circle One: Yes/ No 7.a. If so, are you signed up in the Registry? Circle One: Yes/ No 8. Do you know how to (or can direct others) to turn off the: (Check all that apply) Gas? Water? Not applicable-I don’t live in an apartment or house. 9. If you need an accessible (e.g. Wheelchair accessible, oxygen) shelter or temporary housing in case of an emergency, do you know: (Check all that apply) Not applicable—would not need an accessible shelter/housing Where to go? Phone number(s)(e.g. for the nearest accessible shelter)? How to get there? I don’t know where to go 10. What information would you like to have in order to be more prepared in an emergency? (Check all that apply) Information about preparing an escape plan Information about establishing a plan to communicate with friends and relatives out of state Information about how to put together a survival kit (flashlight, whistle, food, etc) Information about fire proofing your home
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Information about food and water storages Other (specify) _______________________________________________ 11. Which type of disaster situations do you want more information about –in order to be better prepared? (Check all that apply) Earthquake Terrorist attack Severe storm Fire Flooding Power Outages Hazardous Material / Spills Epidemic Outbreak (e.g. Avian flu) Other (specify)
E. Getting and communicating emergency information 1. In case of a health emergency, from whom would you prefer to receive important health information? (Check all that apply) Television (Which stations): _________________________________ Radio (Which stations): ___________________________________ Local social services (list) ____________________________________ Local disability organization (list):______________________________ Fire or emergency response personnel Police 211 information services County Health Department Health Provider Employer Family / Friends Other (specify) _______________________________________________ 2. From whom would you listen to/follow instructions in the event of a natural or man-made disaster (e.g. Earthquake, flooding, storm): (Check all that apply) Television (Which stations): _________________________________ Radio (Which stations): ___________________________________ Local social services (list) ____________________________________ Local disability organization (list):______________________________ Fire or emergency response personnel Police 211 information services County Health Department Health Provider Employer Family / Friends Other (specify) _______________________________________________
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F. Developing a culturally specific communications plan for the Disability Community. The disability community can be defined in any way you want. For some people, that may mean the Autistic community or the Deaf community. 1. Do you identify with the disability community? Circle One: Yes/ No 1.a. 1.b.
Do you identify with a specific community within the larger disability community? Circle One: Yes/No If so, please name or describe: _____
2. Do you think we should have a specific communications plan for the disability community? Yes No Not Sure If no or not sure, please explain why: ____________________________ 3. Is there someone or some organization(s) in your community (specific to the disability community) that you would go to or contact, in case of an emergency, who is in close contact with the police/fire and other emergency responders? Circle One: Yes/ No/Not Applicable a. If so, who: (name/describe):________________________________________ 4. How would you contact this person or organization? (check all that apply) Email Cell Check website Visit Check email (e.g. listserv) NA-Wouldn’t contact anyone in the disability community 5. Which disability organization(s) in your community is/are well known and respected for having information about important topics affecting people with disabilities? (Can list more than one) 6. Which disability email lists/ listservs in your community are well known and respected for having information about important topics affecting people with disabilities? (Can list more than one)
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Appendix D: FOCUS GROUP QUESTIONS A. Getting/receiving (contact) information 1. List up to three ways that you prefer to get information about how to respond in an emergency. Please be as specific as possible…such as radio, TV, Internet, text messages, and so on. Rank the three ways with number 1 being your first preference. 2. List up to three categories of people that you would want to contact, such as family, coworkers, police, neighbors, firefighters—don’t use actual names of the people—just the categories, and next to them write how you would contact them, being as specific as possible. Rank the three categories with number 1 being your first preference. 3. What helps or makes it harder to communicate with others during an emergency? B. First Responders- listen/follow instructions 4. Are there any organizations/first responders that you prefer to get information or to follow instructions from? 5. What would make it easier or more difficult to follow instructions from public officers or other ―first responders‖ in case of an emergency? C. Having a Plan/Getting Help 6. Do you have a plan in case of an emergency? For example—where you’d meet your family if you couldn’t get in contact with them…or where the accessible shelter is? One by one— around the table, please take a minute to describe your plan if you have one… 7. What helps or keeps you from being prepared in case of an emergency? 8. If there was an emergency—and you needed to get urgent medical care, where would you go? (hospital, health department) 9. What would make it easier to get urgent medical care? 9a. What would make it more difficult to get urgent medical care? 10. If you do know about VERS—and are NOT registered…what are some of the reasons why you did not register? D. Culturally specific plan 11. Do you think that we should have ―first responders‖ or certain ―point people or organizations‖ from the disability community to coordinate information and assistance efforts? Explain briefly why or why not. 12. What do think or imagine would be some of the issues or challenges in developing or having a culturally specific plan for the disability community in our area? 12a. What would be some strategies to overcome these challenges? 13. What shouldn’t be a part of a broad culturally specific plan for the disability community-something that would cause the people with disabilities to not use the plan? 14. Who are the LOCAL disability leaders or organizations that are well known and respected for having information about important topics affecting people with disabilities? 15. Who would be a good spokesperson for the disability community? E. Wrap-up- approximately 16. Communication issues—getting information or being in contact with people you need to reach in case of an emergency. 17. Listening and following instructions from ―first responders.‖ 18. Developing a culturally specific emergency plan for the disability community.
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