VIEWS: 149 PAGES: 36 POSTED ON: 10/22/2010
Feature Issue on Disaster Preparedness and People with Disabilities Published by the Institute on Community Integration (UCEDD) · Research and Training Center on Community Living Volume 20 · Number 1 · Spring/Summer 2007 From the Editors When disasters occur people with disabilities are often among those most in harm’s way. In many cases this is because the planning and processes in place to respond to disasters and emergencies haven’t made adequate provision for people with disabilities. In this Impact issue we seek to address that need for greater inclusion of people with disabilities in disaster preparedness, response, and re- covery efforts by providing strategies, stories, and resources that we hope will be of use to disability service providers, advocates, indi- viduals with disabilities, families, and policy- makers. Through personal stories, reflections on lessons learned from previous disasters, Willy Martin stands in the home he owns as it’s being reconstructed following Hurricane Katrina. With him is his Personal Care Attendant, Lyndelle Casby (middle), of Volunteers of America of Greater New Orleans, with whom reviews of what works and doesn’t work in Willy lived for a year after the storm, and Angela King, from VOA’s national office. See story on pages 6-7. policies and procedures, and a variety of pre- paredness checklists we hope to give readers information they can use to evaluate and im- Katrina: A Story of Survival and prove disaster preparedness where they live, Papa Joe’s New Community work, and participate in their communities. Whether it’s doing personal emergency plan- by Jeff Ridgeway ning, organizing neighbors into a circle of support for one another in case of an emer- The night that people along the Gulf Coast entered the shelters, evacuating cities in gency, ensuring that local and state disaster the path of Katrina, no one could possibly have known the carnage and devastation planning agencies include input from people this storm would bring to their lives. To say that Katrina was a monster of a storm would be sugar-coating it. When daylight came and the storm was over it was time to with disabilities, or evaluating the disaster begin the process of finding who was dead and who was alive, and what was still preparedness of the agency or organization standing, if anything. in which we work, we can each take steps to A few days after the storm, when the full effect of what was lost was truly being make sure that when the next disaster or realized, I got a call asking if I could possibly get up to Tuscaloosa, Alabama the next emergency occurs, no one is left behind. day (I live in Mobile) where some of the evacuees were. Upon arriving in Tuscaloosa I was met by the advisor of People First of Alabama, Vicki Turnage, who began to fill What’s Inside me in on what People First had already started to do. People First members, with sup- port from the Arc and Ability Alliance, had already obtained funds for the folks to Overviews visit a local mall to shop and have lunch. But there were many other immediate needs Profiles for our new friends. Resources One of the first things we did was to meet at a church that had opened their doors to the group. Almost every agency involved in the relief effort, the minister from the church, and representatives from agencies providing supports for individuals with dis- abilities came to the meeting. We asked evacuated self-advocates, staff, and their [Ridgeway, continued on page 34] 2 Overview Including People with Disabilities in Emergency Planning: How Are We Doing? by Hilary Styron Nationwide Plan Review Findings Hurricanes Katrina and Rita left more all persons impacted by the storm, and than 1,300 dead in their wake, caused reported real-time information specifi- In June 2006, DHS and the U.S. Depart- more than $80 billion in damage over cally related to people with disabilities to ment of Transportation released the 90,000 square miles, and forced mass Department of Homeland Security Nationwide Plan Review Phase 2 Report evacuations from five states along the (DHS) and Federal Emergency Manage- detailing the results of the review of Gulf Coast. An estimated 600,000 house- ment Agency (FEMA) officials.1 The urban and state emergency preparedness holds were displaced from affected areas SNAKE teams returned to Washington, nationwide, including findings on emer- and 50,000-100,000 remained in tempo- D.C. on September 14, 2005, and the gency planning in relation to people with rary housing six months later. As a following day President Bush asked the disabilities. The DHS review revealed result, 44 states and the District of DHS to conduct a review, in cooperation major fragmentation, inconsistencies, Columbia received millions of evacuees, with local counterparts, of emergency and critical gaps throughout the plans. providing them with care and shelter plans in every major city in America. In Few plans demonstrated in-depth plan- response to President Bush’s call for a na- ning and proactive thinking in preparing tionwide plan review, Secretary Michael to meet the needs of people with disabili- Chertoff further ordered that reviews ties before, during, and after emergen- Although strides are being made include a rigorous examination of how cies. Most plans delegated critical communities plan to prepare, inform, responsibilities to third parties or other toward fully integrating people with evacuate and care for people with dis- governmental entities without adequate abilities. As part of that effort, the DHS coordination, oversight, or assurance of disabilities in community life, Office of Civil Rights and Civil Liberties resources, and contained no indication (CRCL) led a team of subject-matter that a delegated function would be ex- substantial improvement is experts who used a detailed assessment ecuted in a timely and effective manner. tool specifically designed for the purpose More specifically, most plans failed to do necessary to integrate people with of assessing the level to which states and the following: urban areas are taking actions to address • Address evacuation for persons with disabilities in emergency planning. requirements associated with integrating disabilities; people with disabilities into the emer- • Meet the need to keep together gency planning process. people with disabilities, family mem- In addition to these efforts, on Sep- bers, caregivers, and durable medical over an extended period. These events tember 29, 2005, Congress, in the Con- equipment; tested the nation’s ability to respond to ference Report on H.R. 2360, DHS catastrophic events and demonstrated Appropriations Act of 2006, indicated • Establish tracking procedures that the importance of ensuring the effective- the importance of having plans in place will assure reunification; ness of federal, state, and local plans and to deal with catastrophic events and the • Acknowledge that traditional emer- the ability to quickly synchronize inter- need to include people with disabilities gency notification and communica- governmental efforts. in emergency management planning. tion methods are not accessible for Congress emphasized that it is impera- people with certain disabilities; tive that states and urban areas ensure • Ensure that the local or regional Red Launching a Nationwide Review sufficient resources are devoted to devel- Cross is equipped with adequate dis- Following Hurricane Katrina, the oping plans for the complete evacuation ability-related knowledge, experience, National Organization on Disability of all residents, including people in hos- training, and resources to serve (N.O.D.) Emergency Preparedness Initia- pitals and nursing homes, and residents people with disabilities who seek shel- tive (EPI) deployed four Special Needs without access to transportation, in tering at mass care facilities; Assessment 4 Katrina Evacuees (SNAKE) advance of and after such an event. • Require that communication in mass teams into the Gulf region to evaluate care shelters be accessible to people conditions for people with disabilities in who are deaf, deaf-blind or hard of mass care settings. Our teams witnessed hearing, those who are blind or who first-hand the human crisis unfolding for Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Overview 3 have low vision, and individuals with the following (U.S. Department of We Watch the City cognitive disabilities; Homeland Security & U.S. Department • Ensure that shelter personnel will not of Transportation, 2006): We watch the City fall down separate individuals with disabilities • States should designate a specific But we pick it up. from their service animals (a practice state agency that is responsible for The Cost of Freedom generally prohibited under the Ameri- providing oversight and ensuring ac- We pick it up. cans with Disabilities Act) or clarify countability for including people with that service animals are not pets; disabilities in the shelter operations Nothing said • Include a way to re-integrate people process. We pick it up with disabilities from these shelter • The federal government should de- We watch the City fall down facilities back into a more integrated velop a consistent definition of the setting at the earliest appropriate We pick it up term “special needs.” opportunity; and Because of Freedom • The federal government should pro- We walk hand in hand • Illustrate better planning for the vide guidance to state and local gov- smaller percentage of persons who ernments on incorporation of disabil- God Save America are medically fragile. ity-related demographic analysis into We pick it up. The review revealed that across state emergency planning. We watch the City fall down. and urban emergency plans, “disability” • Federal, state, and local governments was inconsistently defined and often should increase the participation of We pick it up. treated as a sub-group of the umbrella of people with disabilities and disability See the Capital standing strong. “special needs,” “at-risk,” or “vulnerable subject-matter experts in the develop- Because of Freedom populations.” The term “special needs” ment and execution of plans, train- We pick it up. often referred to an extremely broad seg- ing, and exercises. ment of the population, including people • Federal, state, and local governments We are Americans. with disabilities, minority groups, people should work with the private sector to We pick it up. who do not speak English, children, and identify and coordinate effective Because of Freedom the elderly. In practice, the term also in- means of transporting individuals We pick it up. cluded people who live in poverty or on with disabilities before, during, and public assistance; people without private Long live Freedom after an emergency. transportation or who rely on public We pick it up. • The federal government should pro- transportation; people who rely on care- Long live Freedom vide technical assistance to clarify the givers for assistance in daily living and We pick it up. extent to which emergency communi- would need similar assistance in an cations, including public information emergency; and people who live indepen- Raise the flag associated with emergencies, must be dently or with caregiver(s) in homes, We pick it up in accessible formats for persons with assisted living housing, nursing homes, disabilities. This assistance should ad- Across the nation supervised group homes, hospitals, and dress all aspects of communication, We pick it up. other health care facilities. These groups including, for example, televised and obviously represent a large and complex other types of emergency notification We watch the City fall down variety of concerns and challenges in and instructions, shelter announce- We pick it up relation to emergency planning and ments, and applications and forms With the grace of God response. In addition, few plans incorpo- for government and private disaster rated state or urban area disability demo- We pick it up. benefits. graphics documenting the prevalence of persons with disabilities in their commu- As the findings illustrate, until emer- - by Chester Finn, Self-Advocate from nities. And few plans recognized that the gency planners understand and address the prevalence and needs of persons with New York state and local governments have legal obligations to those residents under the disabilities in their states and communi- Americans with Disabilities Act and ties, as well as their commensurate fed- Reprinted with permission from We Watch the other authorities. eral civil rights obligations, inadequate City: Stories in the Shadow of 9/11 video and In response to these shortfalls in preparation and implementation will booklet produced by the Research and Training emergency plans nationwide, the report continue to be the norm. Center on Community Living, Institute on presented recommendations, including [Styron, continued on page 35] Community Integration, University of Minnesota. 4 Overview Nobody Left Behind: Consumer Experiences of Emergency and Disaster by Catherine Rooney As part of the research project titled, out a plan of escape, or left at stairwells no one came. Finally, I just struggled, Nobody Left Behind: Disaster Prepared- or elevators while others are escaping to and I used pure fear to get myself ness for Persons with Mobility Impair- safety. Other frightening and sometimes down the stairs and outside. It was ments, conducted at the Center on Inde- life-threatening situations occur when scary just to realize that there are not pendent Living, University of Kansas, an infrastructures fail. These include electri- really any procedures in place to help online consumer survey was adminis- cal power outages for extended periods someone like me in an emergency. tered on the study’s Web site. Anyone of time and non-accessible transporta- – Los Angeles , CA who had experienced a disaster or emer- tion, shelter, and temporary lodging. The • My wheelchair ramp washed away in a gency situation and has a mobility im- disaster recovery efforts for persons with flood and my house was left with three pairment was eligible to fill-out the sur- disabilities are often not seen as a prior- feet of mud everywhere. It was hard to vey about his or her experiences. For the ity of others involved, thus placing per- use my electric wheelchair. I had purposes of the survey, a person with a sons with disabilities at risk of losing money to pay for a ramp, but couldn’t their independence, mobility, and hire anyone, as they were busy else- health. The Americans with Disabilities where. – Texas Act (ADA) has been in existence for more • We had a fire at work and the evacua- We had a bomb threat at work, than 15 years, yet disaster-related ser- tion plan didn’t work to get me out. vices can still be found to be inaccessible Even so, management refused to which was very scary. Everyone and disaster-related personnel unin- change the plan. – Oklahoma formed of the needs of persons with evacuated, but I was still left on the disabilities and how to assist them. • At the temporary shelter I couldn’t get to the bathrooms, as you had to walk 3rd floor by the stairwell for the What Consumers Have Said up stairs. – Northridge , CA • The disaster volunteer was not trained firefighters to come get me. The following are consumer survey par- on accessibility issues. He said that the ticipants’ statements recorded on the shelters should be accessible since the But, no one came. Nobody Left Behind research study’s law requires it. He didn’t understand Web site as of May 15, 2005: the impact of me getting there [dur- ing the hurricane] only to discover • I ambulate with forearm crutches and that they were in violation of the law. my leg stamina is limited. As a social mobility impairment was defined as – Alexandria, VA service provider in NYC, I am in tall someone who has moderate to complete • My only accessible route was on fire at buildings often and [in] one in par- difficulty in walking, or moderate to my home. I had to escape via a non- ticular they had an evacuation drill. complete difficulty moving around using accessible route. The fire destroyed There were no plans or equipment to equipment. our home. – Hagerstown , VA assist me. They told me to ignore the Feedback from the survey included drill. I felt very vulnerable because I • Disabled persons have the same free- personal descriptions of the circum- attend regular work meetings in this dom of choice as any other American. stances that persons with mobility im- building. – New York City The paternalistic attitude was fright- pairments found themselves in during a • [After a hurricane] I did not use the ening beyond belief that I experienced disaster or emergency situation. These shelters because they were not wheel- [while trying to access disaster ser- powerful statements provide insight into chair accessible, and had no provi- vices and information after an earth- the shortcomings of the many current sions for my service dog. – Miami,FL quake]. – Glendora , CA emergency management and response systems in the United States. • I have Juvenile Rheumatoid Arthritis • We had to move out of our house for Overall, participants reported that and use a wheelchair. We had a bomb several weeks to have it repaired [after evacuation plans in public areas are often threat at work, which was very scary. an earthquake]. All the places that not addressing the evacuation needs of Everyone evacuated, but I was still left people referred us to were not acces- persons with mobility impairments, as on the 3rd floor by the stairwell for sible to me in my scooter. they are at times being left behind with- the firefighters to come get me. But, – Los Angeles , CA Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Overview 5 • It is really difficult to get the utility lated or real and being left in a stair- gency team arrived. They eventually company to understand power is a well because no one knew what else to carried my chair and me separately need, if disabled. – Knoxville , TN do. – Sacramento , CA upstairs. – Glendora , CA • The able-bodied community MUST • At my apartment building [during a • New directions should include plan- get the message that it is critical to blackout], I could not get upstairs un- ning for services by emergency pre- think through and develop a plan to til the electricity came back on or until paredness personnel, as they tend to evacuate people with disabilities. I could get some people to carry me ignore that we exist right now. – New York , NY up. I waited in the lobby with my wife – Knoxville , TN and another spinal cord injured The following are additional con- neighbor and his girlfriend for several sumer survey participants’ statements hours. Eventually, the superintendent Conclusion taken from the online survey: and a doorman carried me and some- More participants’ statements on prob- • There were no evacuation plans for one else carried my wheelchair. Un- lems and issues encountered during persons with disabilities who use helpful was a girl who worked in the disasters or emergencies, lessons learned, wheelchairs at the City Mall during an building management office, who told and recommendations on future direc- evacuation of the mall [due to a bomb me that I would not be carried up- tions for exploration to assist persons threat]. There were no personnel stairs because that would expose man- with mobility impairments to survive around to assist me. They all evacu- agement to insurance liability in case disasters and emergencies can be found ated and left me there. The elevators anything happened. – New York, NY on the Nobody Left Behind Web site at were shut off during the evacuation. I • [During a power outage after a hurri- www.nobodyleftbehind2.org. To address had nightmares for several months. cane hit] I was unable to use my home these problems described by survey par- – Silver Springs , MD oxygen machine, CPap machine, or ticipants, changes need to be made, cre- • [Disaster personnel after an earth- electric bed, and I was trapped in my ative solutions explored and developed, quake] did not know whether any of apartment building as the evaluators and existing ADA regulations reinforced. the options were wheelchair acces- were down with no electricity, and I These efforts will most assuredly make an sible or if they had electricity to keep use a wheelchair. When I called for improvement in the health, safety and my ventilators running and batteries help, the [disaster volunteer] worker well-being of all Americans and help charged if the power outage lasted said I would have to go to the hospital assure that nobody is left behind in a beyond my ventilators’ battery life. or a shelter. He didn’t know if the disaster or emergency situation. • There were no disaster preparations shelter was accessible or how I would Note: The report from which this was taken was created by the Re- for the work fire, no evacuation plan, get home after power was restored. search and Training Center on Independent Living at the University of Kansas by a grant from the Centers for Disease Control and Prevention or escape options except to walk …My health declined without the use through the Association of Teachers of Preventive Medicine, TS#-0840. down three flights of cement stairs, of my equipment. When my legs be- which is not an option. I was left at a gan swelling due to fluid problems, I Adapted and reprinted with permission from stairwell because no one knew what called the paramedics. The issue be- “Report #1: Consumer Survey Quotes” (May to do. – Sacramento , CA came whether to go to the hospital 15, 2005), by Catherine Rooney, published and then the shelter and worry about • Management refused to change by the Nobody Left Behind project of the how to get back home or stay at home. evacuation plans [after a fire in the Research and Training Center on Indepen- I had to sign a release [with the para- workplace], even though they didn’t dent Living, University of Kansas, Lawrence. medics] to stay at home, as they work. Buddies at work and family Retrieved June 6, 2007 from www2.ku.edu/ wanted to document the choice in never confronted the shortfall. ~rrtcpbs/findings/consumer_survey.shtml. case I died from congestive heart fail- – Toledo , OH Catherine Rooney is Project Coordinator of ure. The reason I stayed was I couldn’t • It was very frightening going back up the Nobody Left Behind project, and may be get to my car or use the para-transit or into the building [after a fire caused reached at 785/864-4095, 785/864-0706 public transit as I have to be able to by a bomb explosion] as I had waited (TDD), or by e-mail at email@example.com. get to the curb. – Alexandria , VA on the 8th floor for 4 hours for the • I was in a basement meeting when the fireman to come and carry me down earthquake hit. Everyone walked up- even when the fire was out, but there stairs leaving me in the basement as was still a lot of smoke. Now, I recom- the elevator won’t function. One brave mend that every floor have an evacua- man came back downstairs and we tion chair. I fear being in a similar di- positioned [ourselves] in as safe an saster and not knowing if it is simu- area as we could until the quake emer- 6 Overview Experiences of Direct Support Professionals During Hurricanes Katrina and Rita by Sheryl A. Larson and Angela King On August 29, 2005, Hurricane Katrina ported to safety. The evacuation, ex- family members. An additional 24% struck, directly impacting every staff pected to last just three days, stretched evacuated alone, and 13% evacuated with member of, and person supported by, for months as large parts of New Orleans family members but no people with dis- Volunteers of America (VOA) of Greater and surrounding communities became abilities. Some DSPs, who evacuated New Orleans. In May 2006, the Univer- uninhabitable. alone or with family, after checking in sity of Minnesota interviewed Direct The individuals receiving Supported with VOA, learned they were needed and Support Professionals (DSPs) from two Living Services in their own homes or in joined up with an evacuated person in of VOA’s programs – Supported Living their family homes followed individual another city. Services (offering family and semi- evacuation plans, leaving with family DSPs packed three days of clothes and independent living supports to adults members, VOA staff, or on their own. personal supplies for themselves, family and children with disabilities) and They were scattered throughout the members, and the people they supported. Community Living Services (offering southern United States in Mississippi, When the evacuation was extended, DSPs group homes for adults and children with Florida, Texas, Tennessee, Arkansas, and who provided supported living services developmental disabilities) – to learn other parts of Louisiana. Accommoda- purchased food, clothes, and supplies for what happened during the hurricane, tions were difficult to secure, and they the people they supported. Some DSPs stayed in cars, shelters, hotels, trailers, or kept receipts and were reimbursed, while with other family members. Some con- others just absorbed the expenses. DSPs tacted VOA affiliates and were assisted in were thankful that VOA had made ar- Many DSPs found it difficult or securing temporary living arrangements rangements to directly deposit paychecks in unused transition or group homes. into their bank accounts throughout the impossible to meet the demands of work Some had to move again when Hurricane evacuation. Rita hit. DSPs experienced stress, trauma, and find time to secure new housing or For the residents and staff of the anxiety, and confusion. In the beginning group homes, the evacuation included 50 they didn’t know where family members benefits for themselves. But, many said, DSPs and 75 individuals with disabili- were, if they had evacuated or even if ties, along with administrators and bus they had survived. They heard unsub- “If we don’t work the hours, who will?” drivers, leaving in three buses and three stantiated stories of dead bodies hanging vans. They, along with family members from trees, devastation of their homes, of staff, stayed in a Houston hotel for a loss of their personal belongings, shoot- week, then evacuated to the Astrodome ings, and lootings. DSPs were unable to what worked and did not work in the for one day, finally ending up in dorms at connect with friends, family, and neigh- evacuation, why they returned to New the Lakeview Methodist Conference Cen- bors to confirm these reports due to the Orleans, and suggestions for the future. ter in Palestine, Texas for 64 days. When breakdown in the communication infra- Some of the findings are shared here. the flood waters receded, 69 individuals structure. In the early stages of the disas- with disabilities remained at Lakeview ter, cell phones would not work because with only 12 DSPs from New Orleans. of failure of the telephone service in the Background To fill the staffing gap, VOA recruited New Orleans area code. VOA had an 800 Before Katrina hit, VOA New Orleans temporary assistants from affiliates number set up in the Alexandria, Virginia employed 180 Personal Care Attendants around the country. office and fielded a large number of calls who supported 122 individuals living in from staff, family members, and other their own homes or with family, and 100 people supported. Direct Care Staff who supported 75 The Katrina Experience As some DSPs left to attend to their individuals living in 12 group homes. On Of the DSPs interviewed, 52% evacuated families, those who remained supported August 26, when administrators realized with one or more individuals from VOA, additional people. DSPs worked 24 hours Hurricane Katrina was going to hit with including 41% who left with individuals a day, 7 days a week, with little or no time life-threatening intensity, an evacuation with disabilities and their own family off. Some family members were hired to was initiated and the organization began members, and 11% who left with indi- work as DSPs, and others worked for free moving staff and the people they sup- viduals with disabilities but not with so that the DSP could get a break. DSPs Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Overview 7 Lessons and Recommendations • Have a national toll-free number, had little opportunity to reflect on what was happening, talk about it, and grieve One lesson learned from the New staffed 24 hours a day and housed the multitude of losses they were experi- Orleans VOA experience was how diffi- outside the disaster area, so staff can encing. Their focus was on doing the cult it is for an organization, during a call for assistance during evacuations. work and helping their family members large-scale disaster, to not only find shel- • Provide technology for DSPs to com- get through each day. DSPs worked ter, food, and clothing for the individuals municate with management during a months at a time with little personal pri- it supports, but also help employees meet crisis, such as pre-paid cell phones. vacy or freedom, working with strangers, these same basic needs. VOA affiliates • Develop an emergency per diem for and cohabitating with multiple families around the country provided relief staff staff and the people they support. and the people with disabilities whom at their own expense, incurring costs well Direct deposit this into their accounts they supported. Many DSPs were only over $200,000 in payroll and travel. Had so that staff do not have to worry beginning their grieving and healing pro- VOA not been a large non-profit agency about food, housing and transporta- cess at the time of the interviews. that could solicit donations it would tion receipts in the midst of trauma. never have survived these and other costs. FEMA did not recognize these ex- • Provide personal, individual thank The Recovery Experience you’s to each staff member during penses. VOA paid the Lakeview confer- When the DSPs returned to New ence center from donations it raised; and after the disaster. Orleans, housing was in short supply. FEMA would not pay Lakeview because a • Provide some type of “disaster pay” Some lived in group homes or in trailers county official in Palestine refused to des- with additional money for each hour in the yards of group homes, and some ignate their site as an official shelter. This worked, in addition to regular pay. stayed with friends or families. In many indicates how badly the system is broken; • Create a national pool of relief staff. instances, the DSPs, their families, and even the Texas state Katrina office could • Ensure that critical information about the individuals they supported lived not override this single person. Medicaid people supported (e.g., medications, together because they could no longer only allowed VOA to submit its regular support plans, health needs) is avail- afford the rents being charged in New billing for the group home clients and able via the Internet or at a central Orleans. They lived in crowded condi- some slight increases in hours for its location so it’s available anywhere. tions with multiple families sharing supportive living services. Clearly, there small spaces; sleeping on the floor, in a are large systemic issues that must be • Provide company vehicles to evacuate bathroom or under a sink; sharing hard- addressed. staff and people with disabilities to-secure FEMA trailers; or living apart Additionally, the DSPs interviewed rather than requiring staff to use from their families so they could con- made recommendations, based on their personal vehicles. tinue working. Many found it difficult or experience, for service providers to con- • Work with FEMA and other federal impossible to meet the demands of work sider when making disaster response agencies to plan for and make avail- and find time to secure new housing or plans. They include: able staff housing during disasters. benefits for themselves. They had homes • Create an open dialogue with DSPs. that needed gutting and repair, but did Listen to and act upon their concerns. Note: The study reported here was funded by the U.S. Department of Health and Human Services, Centers for Medicare and Medicaid not have time to begin, let alone finish, Services, Contract to Volunteers of America, Sponsor Award 95-P- • Provide staff with credit cards or pre- 92225/3-01. such daunting tasks. But, many said, “If paid cards that they can activate if we don’t work the hours, who will?” evacuations last over three days. Sheryl A. Larson is Senior Research By May 2006, 72 individuals receiving services from VOA had returned to six • Have a long-term accommodation Associate with the Research and Training New Orleans area group homes sup- plan so that, in the event of longer Center on Community Living, University of ported by 50 DSPs. An additional 78 evacuations, staff have a place to go to Minnesota. She may be reached at 612/ people were receiving services in their with the people they support. 624-6024 or firstname.lastname@example.org. Angela own homes, temporary shelters, or the • Give staff identification cards so they King is Director of Program Development homes of 76 Personal Care Attendants. can “prove” they have an official role with Volunteers of America, Alexandria, By May 2007, more DSPs have returned in the lives of people they support. Virginia. She may be reached at 817/860- to the area and to their jobs at VOA. • Obtain out of state emergency contact 1559 or AMKing@voa.org. The full report More have gotten FEMA trailers and names and phone numbers for all from the VOA study, “You Know That It’s some have found permanent housing. staff. In an emergency these individu- Got to Be Dedication That I am Still Here,” Two disaster recovery assistance grants als can be contacted about the where- is published online at http://rtc.umn.edu/ have provided resources to assist both in- abouts and well-being of the DSPs docs/NOLAFinalReport.pdf. dividuals with disabilities and VOA staff and the people they support. to return to homes in the area. 8 Overview Personal Emergency Preparedness: Who Are Your People? by Lynda Kahn and Jack Pearpoint Most of us use planning processes to set planning: It’s all about relationships. We What If...? directions in our lives: to help us think need people. First and foremost, we need What if we act on approaches that con- about our work, and where and how to think about our circles of support and nect us? Our isolation from one another we’ll live, learn and try new things. We the people, connections, and relation- creates profound loneliness and despair. also need to think about and plan for the ships in our lives. Now is the time to rec- This is the greatest disability for any of unthinkable – for emergencies, disas- ognize if your circles (and the circles of us. What if we reframe and reorganize ters. We need to do it now, and we need people we support and care about) need our energy? What if our actions engage to do it with our people. to be strengthened. If so, don’t wait. and support folks with disabilities to Accept the challenge and nurture, build, share their gifts, including their capacity and expand your relationships. to bring people together? Here’s our sug- gestion for a quick start. How about organizing “Our Big Systems and Personal Networks How about organizing “Our Neigh- borhood Emergency Planning Coffee & Neighborhood Emergency Planning Building connections will really make a Brownie Party”? Make it a fun event. difference to safety and to life. This could Invite everyone; get to know each other. Coffee & Brownie Party”? The not only enrich people’s lives with more The strategy is simple. In an emergency, and deeper connections and relation- we can take care of each other better strategy is simple. In an emergency, ships, it could save lives as well. than any “system” on the planet, espe- We all want to believe that “Katrina” cially if we know each other. Having re- we can take care of each other better will never happen again, at least not to lationships with your neighbors is the us. Well, it may not be a hurricane, but ultimate security blanket. Within the than any “system” on the planet, chances are actually loaded in the other first 24-48 hours, before bigger systems direction. Life happens to all of us, and might even reach you, the people who especially if we know each other. for almost all of us, we will need some will make the difference are your neigh- help at some point. Thus the question is bors; personal contacts and connec- how will we deal with life circumstances tions; members of your local place of that will be out of our control, without worship; and folks you know through We all need to make “personal pre- being consumed by fear and just hiding belonging to clubs, classes or other paredness plans.” The practical litera- under our beds. memberships. They will make the differ- ture agrees. Booklets, brochures, guides There are choices we can make that ence. We need to be good neighbors! and resources from the Federal Emer- will offer degrees of security. The range This needs to be the core of our plan. It gency Management Agency (FEMA), the and complexity of the potential answers is an emergency preparedness strategy, Red Cross, the National Organization on is bewildering, but in the thumbnail and it’s simply a good idea. Disability (N.O.D.), and more give great sketch there are two extremes: We can Following the good neighbor strategy information and summarize a few key depend on “big systems” to take care of you can also join your local neighbor- steps. These steps are the core of each of it for us, or we can build and strengthen hood watch, or neighborhood safety our personal emergency preparedness our own personal networks of support. group. If there isn’t one, you or someone plans (FEMA, 2004; N.O.D., 2005): Clearly, both are necessary, but the rev- you support could be the catalyst to get • Be informed elations about recent disasters are deci- one started. Think of this as a commu- sive: Big systems don’t do well taking nity engagement strategy. Become an • Make a plan care of the “little” guy or gal. Thus, while active contributor to your community. • Assemble supplies and a kit we all work to repair and strengthen the That’s security. If you are a stakeholder • Create a personal support network systems so they will serve us better, the with your people, and they with you, we • Practice with your network and team smart money would be to get to work to- will do what it takes to take care of each day building and strengthening our own other. This is much more than “who is • Maintain your plan and kit personal networks and working together your emergency contact?” It’s really the There is, however, one fundamental with them to create our personal pre- opportunity to engage in a series of con- concept underlying all preparedness paredness plans. versations with your neighbors and Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Overview 9 friends about how we get along together second scenario, after the fall, the actor will be part of your personal support net- – and how we will take care of each asked for help, and a few responded. In work in the event of an emergency? other. Don’t think of this as a single the third, the actor asked people to “dial Those trusted individuals and folks are “meeting.” There may be one “event,” Dr. X at hospital X.” People responded the people you invite to be part of your but if we think about this as a series of with a clutch of cell phone dialing! Many planning process (the coffee party). They neighborly conversations that get richer of us want to help, but without appropri- can assist you during an emergency. If we over time, we are on a more secure foun- ate cues, we become passers by. notice that these circles or relationships dation. Each simple encounter and con- In disasters, it is the same. Most of us are thin, then we have identified impor- versation becomes a moment to appreci- are willing to help (at least a little) but we tant work to do. We need to build our ate, but equally a piece of the strategic are paralyzed by our lack of understand- circle of community connection. plan to have people in your life (a mutual ing about what to do, and then we move None of this exempts us from doing obligation) who will help each other out on. When we know someone, when we the complex work of improving emer- every day, and in an emergency. have shared a cup of coffee, worshipped gency response systems so they are sensi- together, etc., we have a little knowledge tive to the individual needs of people about a real person and what might be who are likely to require a little extra Waiting or Mutual Caring? assistance in an emergency. In fact, vigor- helpful. If asked, and given a few clues, Some may wonder about the relevance of many, if not most of us, would be willing ously joining in that planning is critical this “take charge of your life” approach to reach out and give a hand to a fellow so the real needs of people do not get put for people who need various kinds of human. So the good news is that if we on the list last. Reaching out and engag- supports. Unfortunately, we have hard reach out and connect to people around ing with public and private sector sys- evidence from Hurricane Katrina, other us, build a network of relationships tems is one of the key community con- disasters, and history that people with (perhaps even a few friends), there will be nections that each of us can make. But disabilities are too often left until “last.” people who, if a crisis occurs, will think there is a second layer of organizing that The dramatic death toll from Katrina for about helping each other out. They won’t each of us can do beginning today. We people with disabilities is brutal testi- wait for instructions from a bureaucracy need to be “regulars” in our local places mony. People waited for “big systems” that is itself in crisis. They will be able to people gather for recreation, worship, to take care of them. Too often it didn’t figure out that someone who needs assis- social events. We need to join things, happen. Big systems were struggling to tance to get around or to eat will likely meet people, be present; and we need to cope themselves. Communications need a hand. They will show up with be there before a crisis happens, so if failed. Transportation collapsed. Inter- lunch and an extra blanket. No waiting something happens, friends and col- agency struggles consumed valuable time required. We will just get on with taking leagues will notice our absence and take and resources. We all know stories. The care of each other. If the cell phones are action immediately. And we can start point is that in an emergency, unless we down and the power is out, it still works today. We can build relationships and are very lucky, big systems are also in because we know each other. We know networks of support, and the good news emergency mode and many of the where we live, we know likes and dislikes, is that we begin one conversation at a people we know and care about will not we know dozens of personal anecdotes time – perhaps over coffee and brownies. survive until the big systems reorganize about each other that help us to know/ References and get back into action. And even then, guess what to do in a crisis, because we FEMA (2004). Preparing for disaster for people with disabilities and other too often, people with disabilities will be care about one another. special needs. Washington, D.C.: Author. Retrieved April 24, 2007 from www.redcross.org/images/pdfs/preparedness/A4497.pdf. low on the priority list for attention. N.O.D. (2005). Prepare yourself: Disaster readiness tips for people with So, do we sit and wait for someone to developmental or cognitive disabilities. Washington, D.C.: Author. take care of us when the evidence sug- Building Our Circles of Support Retrieved May 16, 2007 from www.nod.org/emergency. gests it is chancy? Or, do we take charge Efforts in emergency preparedness are and invest in making, renewing, and re- aligned with the core values of commu- Lynda Kahn is a co-leader at Inclusion Press energizing our own personal networks nity inclusion and membership. We are International in Toronto, a faculty member that will make our daily lives more inter- prompted again through these prepared- of the University of Massachusetts Depart- esting, and give as much real security as ness efforts to take stock of the very ment of Family and Community Medicine, there is for any of us in a serious emer- questions at the heart of individualized and advisor to the Emergency Awareness/ gency of any kind? planning with people. Who is in your Preparedness Initiative at the University’s A frightening piece of research from circle of support? Who’s in the inner Eunice Kennedy Shriver Center. Jack New York City affirms this strategy. In a circle? Who can you count on, at least Pearpoint is founding Director of Inclusion controlled experiment, an actor fell in “three deep” (at least three people in each Press and the Marsha Forest Center, the street with classic heart attack symp- important location), in the different Toronto. They may be reached at 416/658- toms. Most people walked by. In the places where you spend your time. Who 5363 or email@example.com. . 10 Overview When Disaster Strikes: An Emergency Preparedness Checklist for Service Providers The following checklist was developed numbers for emergency use only. Ask medical and/or mobility equipment by United Cerebral Palsy to help com- each staff also to list contact infor- and assistive devices in consistent, munity providers of services for indi- mation for someone out of the area convenient and secured places and in viduals with disabilities to fully engage who could serve the “clearinghouse” working condition. Have a back-up their organization, including staff, vol- function for getting in touch. power plan for durable medical unteers and the individuals they serve, • Volunteers. Develop your own vol- equipment and medications needing in community, organizational and per- unteers, especially to cover in a disas- refrigeration. sonal preparedness for emergencies and ter, and have backups. • Immediate shelter. Identify tempo- disasters. rary, accessible shelters (consider • Locating everyone. Implement pro- cedures to ensure that you will know churches, nearby community cen- Community Emergency Planning where everyone is at all times, utiliz- ters, schools, other residential ser- ing such strategies as a contact regis- vices, etc.). Develop mutual aid Your organization can play an important agreements. try, a master schedule, a “buddy sys- role in community emergency prepared- tem,” wireless telecom devices, etc. – • Make assignments, train and ness through the following: as well as recruiting emergency con- cross-train staff for: • Community Planning. Participate tacts who live at least 100 miles away - Site security. Check and turn off in community emergency planning to act as a clearinghouse for informa- gas, electricity and water if evacuat- efforts. Ensure that both staff and tion on your staff and individuals ing. people with disabilities are fully par- served. ticipating in the community plan- - Fire suppression. Check for and • Important documents. Implement suppress small fires and attempt to ning process and effectively commu- procedures to ensure important notify fire department. nicating the perspective of people documents pertaining to all the indi- with disabilities. - Search and rescue. Ensure everyone viduals you serve are available, utiliz- has evacuated. Quickly search the fa- ing such strategies as putting indi- cility for people who may be trapped Organizational Preparedness viduals’ permanent legal documents, or injured. Help if possible. Note and or copies (birth certificates, immigra- The following are procedures to help record situation for other respond- tion documents, guardianship de- ensure your organization is ready and ers, including names and location. crees, etc.) in a safe, accessible, off- survives an emergency or disaster: site, 24-hour location, and copies of - First aid. Administer first aid to • Your services. Identify the primary other documents (SS cards, Govern- injured persons services you think you will continue ment IDs, Medicaid IDs, Food Stamp • Assisting individuals. Assign staff to provide following an emergency. IDs, prescriptions, DME info, etc.) in to specific individuals who are likely • Basic resources. Identify the critical sealed freezer bags in emergency kits, to need assistance in the event of an material resources necessary to main- with additional copies sent to out-of- evacuation. Be sure they have a desig- tain these operations. area emergency contacts. As a back- nated place(s) to go. up, consider putting everything pos- • Accounting for people. Assign staff • Staff personal/family prepared- sible on a secure Web site. to take a “head count” to ensure all ness. Encourage staff to have a per- sonal, family or home emergency • Emergency kits. Assign and train staff and individuals served have plan to increase the likelihood that staff to ensure that home emergency evacuated, if necessary, or are shel- staff and their families can cope with kit(s) are put together, are in desig- tered at home, if possible. the disaster without outside help. nated place(s), and are checked and • Transportation. Have an emergency updated regularly. transportation plan, including desig- • Essential personnel. Determine which staff should automatically re- • Posting special needs. Post a list of nating accessible emergency vehicles port to work in a disaster, and have individuals you serve and their spe- for people, and others who can carry back-ups. cific needs in an accessible, but pri- equipment and supplies, as well as vate, location. specific destinations. • Staff contact list. Develop and post in a private but accessible place a list • Medications/equipment. Assign • Communications. Have an emer- of staff home and contact telephone and train staff to keep important gency communications plan that Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Overview 11 includes backup systems for remain- home number and the out-of-area Resources for Information ing in contact if traditional commu- contact number. nication systems are unavailable. • “Carry-along” supplies. Assign The following may be useful for further • Organizational “buddy system.” staff to maintain a small kit (fanny information about disaster preparedness Identify neighboring agencies or pack, backpack or bag) of “Carry- in relation to people with disabilities: businesses you can join with to share Along Supplies” that each individual • Support Coordinators Emergency resources in an emergency in order to you serve keeps with them at all maintain a level of operations for times, containing: Preparedness: Best Practices Guidelines both and ensure the ongoing support (www.dhh.state.la.us/publications. asp?ID - His/her health information card. of people you serve. =77&Detail=1193). A resource guide pro- - Instructions on personal assistance • Insurance. Make sure you have the needs and how best to provide them. viding a framework for support coordina- best disaster coverage you can obtain tion agencies to use in designing emer- - An emergency communication card and afford, including indemnity for gency preparedness procedures, and in (For individuals with cognitive dis- payroll and for loss of business or supporting development of individualized abilities, it might say something like: funding, if available. “I cannot read. I communicate emergency plans for individuals with dis- • Government funding. Make an slowly. Please speak slowly to me. I abilities. Developed by representatives emergency agreement with govern- can point to or understand simple ment funders for interim continua- from Louisiana’s support coordination pictures and some words.”) tion of funding during an emergency. agencies and the state’s Office for Citizens - Reduced copies of important docu- with Developmental Disabilities. ments such as Social Security card, Individual Preparedness Medicaid card, government ID, etc. • Higher Ground: The Dedication of - Copies of prescriptions. Direct Support Professionals During and The following are procedures to help After Hurricanes Katrina and Rita. A insure that the individuals you serve are - Flashlight on a key ring. prepared: - Emergency signaling device such as documentary on DVD telling the stories of a whistle, beeper, bell, screecher, some of the heroic Direct Support Profes- • Health information. Have multiple copies of a health information card, flashing light, etc. sionals from New Orleans who, despite with one that stays with each indi- - Small battery-operated radio and long hours, low pay, and tremendous vidual, including information on extra batteries. stress and trauma, continued to provide medications, equipment, allergies, • Practice, practice, practice. Con- support services during and after the sensitivities, communication style, duct periodic drills/practices, with- storms while often not knowing the fate preferred treatment, medical and out fail. Staff and individuals served of their own families. Produced by the care providers, and important con- will turn over. tact people. Research and Training Center on Commu- • Back-ups, back-ups, back-ups. nity Living, University of Minnesota, in • Medication. Have an emergency Have all the back-ups you can, includ- medication protocol that will ensure conjunction with Volunteers of America of ing relief staff, emergency on-call a 7-14 day supply of essential medica- staff, joint staffing agreements with Greater New Orleans. For further informa- tions, maintaining extra supplies, other providers, your own volun- tion go to www. highergroundthemovie. current prescriptions and/or emer- teers, pre-agreements with volunteer org or call 612/624-4512. gency agreements with medical pro- service organizations, etc. viders. • We Watch the City: Stories in the • Equipment. Have an emergency Shadow of 9/11. A documentary on DVD Adapted and reprinted with permission durable medical equipment protocol, relating the experiences of New Yorkers from “When Disaster Strikes: An Emergency including attaching simple handling Preparedness Checklist for Providers of with intellectual and other developmental instructions to all equipment, with Services and Supports for People with disabilities and those who supported copies in emergency kit(s). Disabilities,” published by United Cerebral them in the aftermath of September 11, • Service animals. Have an emer- Palsy (UCP), Washington, D.C. Retrieved 2001. Produced by the Research and Train- gency service animal protocol, ensur- June 6, 2007 from www.ancor.org/issues/ ing Center on Community Living, Univer- ing service animals have animal disaster/UCP_when_disaster_strikes_05- sity of Minnesota. Ordering information emergency kits and current identifi- 06.pdf. For further information call UCP at cation tags, with both the owner’s 800/872-5827 or visit www.ucp.org. available at http://ici.umn.edu/products or by calling 612/624-4512. 12 Overview Employers’ Guide to Including Employees with Disabilities in Emergency Evacuation Plans by Linda Carter Batiste and Beth Loy Interest in emergency evacuation plan- the Occupational Safety and Health Act viduals who are blind may prefer to ning has increased dramatically since the (OSH Act) or under state and local law.3 walk down stairs unassisted. People September 11 terrorist attacks. In turn, Whether mandatory or voluntary, with disabilities are generally in the the Job Accommodation Network (JAN) many employers decide to develop emer- best position to assess their particular started receiving more calls from employ- gency evacuation plans. The following needs. ers requesting information about their provides steps for including employees with disabilities in those plans. The ADA requires employers to keep legal obligation to develop emergency all medical information confidential. evacuation plans and how to include However, first aid and safety personnel employees with disabilities in such plans. Plan Development may be informed, when appropriate, if This article addresses these issues. The first step for including employees the disability might require emergency with disabilities in emergency evacuation treatment or if any specific procedures Legal Requirements plans is plan development. Plan develop- are needed for emergency evacuations. ment begins with identifying accommo- In addition to requesting information Although employers are not required to dation needs. One of the best ways to from employees, employers may want to have emergency evacuation plans under identify accommodation needs is to ask hold evacuation drills to help identify the Americans with Disabilities Act employees whether they have limitations needs that employees are unaware of; con- (ADA), if employers covered by the ADA that might interfere with safe emergency duct hazard analyses to help identify haz- evacuation. The Equal Employment Op- ards specific to the workplace; develop a portunity Commission (EEOC) recently method to identify visitors with special needs; and contact local fire, police, and Since September 11, the Job issued guidance that discusses what infor- HazMat departments for guidance. mation employers are allowed to gather Accommodation Network has when developing an emergency evacua- tion plan.4 According to this guidance, Accommodations received more calls from employers there are three ways that an employer Once accommodation needs have been may obtain information: identified, the employer should choose requesting information about their • After making a job offer, but before effective accommodation options. Often employment begins, an employer may employees with disabilities are a good legal obligation to develop ask all individuals whether they will resource for accommodation ideas. In need assistance during an emergency. addition, employers should contact local emergency evacuation plans and • An employer also may periodically fire, police, and HazMat departments to survey all of its current employees to determine what services they can offer. how to include employees with determine whether they will require Finally, employers can contact other assistance in an emergency, as long resources such as JAN. JAN can provide disabilities in such plans. as the employer makes it clear that specific accommodation ideas on a case- self-identification is voluntary and by-case basis. The following is an over- explains the purpose for requesting view of frequently suggested accommo- the information. dation ideas for emergency evacuation. opt to have such plans they are required • Finally, whether an employer periodi- Additional details about many of them to include people with disabilities.1 Fur- cally surveys all employees or not, it can be found through JAN’s Searchable ther, employers who do not have emer- may ask employees with known dis- Online Accommodations Resource gency evacuation plans may nonetheless abilities if they will require assistance (SOAR) at www.jan.wvu.edu/soar. have to address emergency evacuation for in the event of an emergency. An em- In the area of general accommodations employees with disabilities as a reason- ployer should not assume, however, the following are suggested: able accommodation under Title I of the ADA.2 In addition, employers in certain that everyone with an obvious disabil- • Employers should have emergency industries may have obligations to de- ity will need assistance during an alarms and signs showing the emer- velop emergency evacuation plans under evacuation. For example, many indi- gency exit routes. These alarms and Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Overview 13 signs should be accessible and main- • Employers should install lighted fire accommodation. In this case, another tained in proper working order. strobes and other visual or vibrating form of training for emergency evacu- • Employers may want to implement a alerting devices to supplement audible ation procedures may be needed, for “buddy system” for all employees. A alarms. Lighted strobes should not ex- example providing detailed written buddy system involves employees ceed five flashes per second due to risk instructions. working in teams so they can locate of triggering seizures in some indi- Accommodation ideas for employees and assist each other in emergencies. viduals. Section 4.28 of the ADAAG with respiratory impairments may include: (http://www.access-board.gov/ • Employers may want to designate • Employees with respiratory impair- adaag/html/adaag. htm#4.28) specifi- areas of rescue assistance. Section ments may have limitations exacer- cally addresses alarms. 4.3.11 of the Americans with Disabili- bated by smoke, dust, fumes, chemi- ties Act Accessibility Guidelines • Employers may want to provide alert- cals, and other odors and may benefit (ADAAG) (www.access-board.gov/ ing devices, vibrating paging devices, from products such as emergency adaag/html/adaag.htm#4.3) specifi- wireless communicators, or two-way evacuation hoods, masks, and respira- cally addresses areas of rescue assis- paging systems to alert individuals tors. Using areas of rescue assistance tance. If these areas do not have es- with hearing impairments of the need until emergency personnel arrive may cape routes, they should have 1) an to evacuate. also be an option. operating phone, cell-phone, TTY, • Employers should install tactile • Employees with respiratory impair- and two-way radio so that emergency signage and maps for employees with ments may have breathing difficulties services can be contacted; 2) a closing vision impairments. Braille signage, when walking distances and therefore door; 3) supplies to block smoke from audible directional signage, and pe- have problems descending stairs. entering the room under the door; 4) destrian systems are also available. Employers may want to consider pur- a window and something to write with These products may benefit other chasing evacuation devices, relocating (lipstick, marker) or a “help” sign to people who must navigate smoke- the employees’ workstations, and alert rescuers that people are in this filled exit routes. working with the employee to ensure location; and respirator masks. • Employers may also want to provide availability of adequate medical Frequently suggested accommoda- alpha-numeric pagers or other com- supplies. tions for employees with motor impair- munication devices to individuals After effective accommodations are ments include: with speech impairments so they can chosen, employers should decide who will • To evacuate individuals with motor communicate with personnel in an be involved in implementing the evacua- impairments, employers can purchase emergency. tion plan, commit the plan to writing and evacuation devices. These devices help Suggested accommodations in rela- share it with employees for feedback, move people with motor impairments tion to employees with cognitive disabili- practice the plan to make sure it works, down the stairs or across rough ter- ties include: and modify the plan as needed. rain. If evacuation devices are used, • Employers should consider ways of personnel should be trained to oper- communicating with people who have ate and maintain them. cognitive disabilities. For example, Plan Implementation and some individuals may benefit from Maintenance • Employers should remove any physi- cal barriers (boxes, supplies, furni- pictures of buddies, color-coding of The second step for including employees ture) to insure a barrier-free route of escape doors and areas of rescue assis- with disabilities in emergency evacuation travel out of the building. tance, and information on video/CD. plans is plan implementation. After the • Employers may want to provide heavy Suggested accommodations in rela- final evacuation plan is written, a copy gloves to protect individuals’ hands tion to employees with psychiatric condi- should be distributed to all employees from debris when pushing their tions include: and key personnel. In addition, an evacu- manual wheelchairs, a patch kit to re- ation drill should be performed to make • Employers should consider the effects pair flat tires, and extra batteries for sure all employees are familiar with the of training for emergency evacuation. those who use motorized wheelchairs plan. Finally, it should be integrated into Some individuals with psychiatric or scooters. Arrangements should also the standard operating procedures. impairments benefit from frequent be made to make wheelchairs avail- The final step for including employees emergency drills, but for others prac- able after evacuation. with disabilities in emergency evacuation tice drills may trigger anxiety. Notify- plans is plan maintenance. To insure that Emergency evacuation accommoda- ing employees of upcoming practice accommodations continue to be effective, tions for employees with sensory impair- drills and allowing them to opt out of the evacuation plan should be practiced ments may include the following: participation may be a reasonable and the accommodations updated [Batiste & Loy, continued on page 34] 14 Overview Coping with Disaster: Helping Children with Cognitive Disabilities by Anne F. Farrell and Daniel Crimmins People respond differently to disaster. ing style tends to be all-or-nothing and • Focus on doing. When you demon- Some may appear unaffected, and others teens are especially vulnerable to peer strate caring for yourself and others, show distress, rage, and fear. Children’s influences and failing to consider the you are engaged in coping. It is impor- reactions vary according to many factors, consequences of their actions. As tant to express feelings, but coping is including their ages, abilities, and experi- such, teens may be particularly vulner- also about learning, thinking, and do- ences. The children most directly affected able to impulsive responses. ing. Some specific steps you can take are likely to have the greatest difficulty are the following: coping, but children with prolonged in- - Limit further exposure to trauma. Given direct exposure (including seeing events General Strategies for All Children how immersed we are in unfolding on TV) may also have trouble coping. The following are general strategies to events, assume that children know Children exposed to trauma may promote coping in children: about them. It is important, however, respond in some predictable ways. For • Natural supports work best. Chil- to limit ongoing exposure to the most, these responses will diminish over dren with cognitive impairments, like trauma. For younger children, turn off the next few months, especially if the other children, adapt best in their own the television during the news. Set child did not experience injury, loss of a environments and routines. There is aside some time to look at newspaper family member, or further trauma. Some comfort in the familiar, so allow chil- stories and photographs and answer of the common reactions of children, dren to go about routines of school, questions. For older children, watch including children with cognitive dis- recreation, and play. Consider the the news together. Change channels if abilities, are as follows: community supports you would turn you feel the media coverage is not con- • Very young children (about 2-5): to in any time of need: extended fam- structive. Talk about what you see sleep disturbance, difficulty separat- ily, religious faith, community organi- while you are watching and afterward. ing from parents, fussiness, confu- zations, and recreational activities - Address concerns about safety. Discuss sion, fears about safety, somatic that provide outlets for tension and safety with children. Children will be symptoms (stomachaches), exagger- opportunities to spend time together. assured by knowing steps authorities ated startle to loud noise, and re- Use your support network. Take care are taking to protect the public. Ex- enactment of the events through play. of yourself so that you can be avail- plain in concrete terms how our lead- These reactions will be most evident able when children need guidance. ers are working together to restore in children with greatest exposure to • Education helps. Educate yourself normalcy. Be honest and calm about the trauma and when parents display about the impact of trauma and how risk; don’t promise that nothing like a great deal of distress. it changes over time. Knowing what to this will happen again. Explain that • School-age children (ages 5-11): expect helps you be prepared to pro- most of us will live long and grow old. worries about the safety of loved vide support. For example, expect chil- Reassure children that you will do ones, attention to adult reactions, dren to misunderstand some of the everything in your power to protect withdrawal or hyperactivity, repeti- things they hear and see. Be prepared them. tious play, impaired concentration to learn what they know and supply and academic performance, sleep dis- accurate and timely information. turbances and nightmares, magical Additional Strategies for Children Teach older children that recovery is a ideas about how the disaster might with Disabilities process: it takes time, everyone re- have been averted, and questions sponds uniquely, and there is no Children with disabilities will benefit about why such disasters can happen. “right” way to feel. There are right from all of the strategies listed above. • Adolescents (12 to around 18): sad- ways to act, however, and children Maintaining regular schedules may be ness, outrage, risk-taking behaviors, need good role models. Help them particularly important for children who substance use or abuse, sleep or eat- learn about federal, state, and commu- rely on routine as a coping method. ing disturbances, anger or rage, talk nity leaders whose responses are con- Because of their information-processing of retaliation, increased sense of structive and inspire confidence. Use differences, however, children with cogni- alienation, shifts in peer groups, and reputable resources to guide your own tive disabilities may also require strate- focus on death. The adolescent think- education efforts. gies that address their unique needs: Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Overview 15 • Use language the child under- Use clear examples and repeat yourself ment used in the recovery effort. stands. Speak at the child’s language as needed. If you are aware of miscon- Answer the questions, but remind the level, giving short explanations. Chil- ceptions a child has, you are in a good child that this is a sad time because so dren often ask questions that adults position to help. Gently and carefully many people have died. If an attempt don’t have answers to, such as “Why repeat correct information and be sure to redirect the child does not work, try did this happen?” It’s also okay to the child grasps what you mean. Later, to structure or contain this conversa- admit there are things you don’t know. check in again about the same infor- tion. Provide times and places for the Abstract terms may lead to miscon- mation because misconceptions can child to discuss this with you. Give the ceptions. Avoid statements like “This be hard to shake. For example, one child guidelines for talking to others was tragic and many lost their lives. child came home from school crying. in a sensitive way. Offer “okay” topics One of John’s loved ones passed on in She said the grandparents of three such as the number of rescue person- the collapse.” Instead, say, “There was classmates died in the World Trade nel on the scene or which bridges and a big explosion and many people died. Center attack. Her mother talked to a tunnels have reopened. John’s uncle was killed.” neighbor and learned that the child’s • Look at what might be upsetting. • Check the child’s understanding. teacher talked about the attack. Luck- One child became upset when she Ask often about what children are ily, no one in the class was directly af- heard a television show with gunshots. thinking and feeling. Encourage them fected. The teacher asked whether any She thought that a war had started. If to draw pictures if they are able. students remembered someone dying a child has a strong emotional re- Draw, paint, or color with them. Pro- and three children said that their sponse, look first at the immediate vide choices of emotions they may be grandfathers had died previously. The context. Another child had recently experiencing. Use pictures that repre- child’s mother corrected her misper- done something for which he was sent “sad” or “upset” if they are not ception. Later when her father came scolded. When the disaster of Septem- good at expressing themselves with home, the child repeated the story, ber 11th occurred, he felt that his be- words. Ask open-ended questions like again stating that the grandfathers had ing “bad” had caused it. Guilt can be “What have you seen and heard about been killed in the attack. Two or three inappropriately attached to an unre- the World Trade Center?” Prompt more conversations were necessary be- lated event. them with questions such as “What fore the child grasped the difference. Despite all of the above, some chil- happened next?” Avoid yes/no ques- Gentle repetition reduced her distress dren with cognitive disabilities may de- tions that do not encourage children and made it less likely she would re- velop stress disorders related to their ex- to talk more. peat the story incorrectly. posure to a traumatic event. They should • Expect misunderstanding. Children • Use pictures and talk together. Each be referred to a mental health profes- with language and cognitive disabili- discussion offers an opportunity to sional with appropriate training in both ties may be particularly vulnerable to help children understand and cope. stress disorders and cognitive disability. misconceptions. Multiple television Provide information to more than one rebroadcasts may be confusing and sense at a time, allowing children to Adapted and reprinted with permission children may become afraid that the see, hear, touch, talk, and do. For very from the guide, “Coping with Disaster: attack continues or has started anew. young and elementary-age children, Suggestions for Helping Children with show photos of recovery operations. Cognitive Disabilities,” by Anne F. Farrell • Correct misunderstandings. A news Tell them how the firefighter or police and Daniel Crimmins, published by the report about requests for blood dona- officer pictured is helping. This can be Administration on Developmental tions confused one child who could done many times over the coming Disabilities. Retrieved June 6, 2007 from not understand why someone would days. For older children and adoles- www.acf.dhhs.gov/programs/add/Sept11/ take people’s blood from them. Ask cents, talk about television and news- addcoping.html. Anne F. Farrell is Assistant children about what they hear and paper coverage every day. Expose them Professor in Family Development and tune in closely to their reactions, in- to leaders who appear strong, sympa- Family Studies, University of Connecticut, cluding facial expressions. In this case, thetic, and reasonable. Stamford; she may be reached at 203/251- you might show the child a photo of • Identify the human element of the 8590 or firstname.lastname@example.org. Daniel someone donating blood and tell how tragedy if inappropriate questions Crimmins is Associate Director for the this helps. If you donate blood, show are asked. Some children may want to University Center for Excellence in the child your Band-Aid and explain talk about aspects of the tragedy that Developmental Disabilities at the Marcus that no one hurt you. may seem irrelevant or insensitive. A Institute, Atlanta. He may be reached at • Repeat your responses patiently. child with restricted interests might email@example.com or 404/419-4060. Children may have questions about want to review details about the equip- these events and ask them repetitively. 16 Overview Congregations Who Care - Prepare: Preparing Faith Communities to Assist During Disasters The congregations of America are more Following the terrorist attacks in the This type of coordination and aware of the need to prepare for a fall of 2001 and the recent hurricanes in planning must be very specific. For human-made or natural disaster than the Gulf Region, congregations have ful- example, during and after a disaster, they were prior to September 11, 2001. filled their scriptural mandate to offer one congregation could provide the Through television and other media, the hospitality and help those in need. services of two sign-language inter- nation is powerfully and graphically People of all faiths have contributed mil- preters and store extra hearing aid alerted to hurricanes, tornadoes, floods, lions of dollars and countless hours as- batteries; another congregation, blizzards, earthquakes, terrorist attacks sisting older adults and people with dis- which has a religious education pro- and wildfires, as well as the resulting abilities. Congregations of all faiths have gram for children with mild to severe destruction, homelessness, injury and provided transportation, medical care, disabilities, could offer the services housing, food, clothing and tutoring to of the professionals who staff the Americans with physical, sensory, psy- program; another congregation, chiatric and intellectual disabilities. which operates a shelter for people There are a number of specific steps People of faith from America’s congre- without homes, could offer its wheel- gations continue to make a critical dif- chair accessible restroom and a congregation can take to assist ference in disaster recovery. shower; another congregation with a There are a number of specific steps parish nurse might offer her services; people with disabilities to prepare a congregation can take to assist people and a congregation that provides with disabilities to prepare for a disaster, meals could store the equipment that for a disaster, and to prepare its and to prepare its faith community to children and adults with disabilities assist people with disabilities during a might need, including flexible straws, faith community to assist people disaster. They include the following: adaptive silverware and dishes, • Coordination: A congregation can sodium and sugar-free snacks and with disabilities during a disaster. join with other congregations and beverages, gluten-free products and volunteer groups to assess prepared- tables that can easily be raised to ness efforts in their community and accommodate a wheelchair user. plan for disaster before it happens. • Education: A congregation or a clus- death that follow. Sadly, we have learned This planning, grounded in coopera- ter of congregations could sponsor that children and adults with disabilities tion, will reduce duplication of ser- an Emergency Preparedness Town and their families are more vulnerable vices. Congregations can be guided Hall Day or Awareness Day similar to during and after these disasters. through this planning process by a Health Fair. Resources and materi- People, with and without disabilities, joining National Voluntary Organiza- als to be distributed at these events can reduce the impact of disaster by tak- tions Active in Disaster (NVOAD). A can be found on the EPI Web site at ing precautionary measures to prepare in visit to its Web site at www.nvoad.org www.nod.org/emergency. Likewise, case an event occurs. In November 2001, offers information about the coordi- any time there is a celebratory fair, the National Organization on Disability nating and advocacy services offered congregations can staff a booth with (N.O.D.) launched the Emergency Pre- by NVOAD or an affiliated state information about emergency pre- paredness Initiative (EPI), a program to VOAD member. paredness for people with disabili- address the special concerns of the Also, consult EPI’s Interactive ties, including information about the nation’s disability community and to Map of Disability and Emergency TV and radio Emergency Alert Sta- ensure that people with all types of dis- Preparedness Resources (www.nod. tions and National Oceanic and At- abilities are included in emergency plan- org/EPIResources/interactive_map. mospheric Administration (NOAA) ning at all levels (the Web site of this html). The map houses information weather radios with audible, flashing award-winning program is www.nod. on your regional branch of FEMA, and vibrating alerts. Central to the org/emergency). EPI is the sister pro- your state Citizen Corps and Ameri- message for everyone is that it takes gram of N.O.D.’s Religion and Disability can Red Cross Chapters, as well as more time to evacuate if you have a Program (R&DP), which works with con- links to your state and local Emer- disability or a family member with gregations, national faith groups, and gency Management Agencies, and is disability. seminaries (the R&DP Web site is at a good place to start gathering the in- These events can be publicized www.nod.org/religion). formation most useful to you. using energizing words such as “Get Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Overview 17 Informed,” “Get Involved,” “Create • Personal Planning: A congregation, N.O.D.’s Religion and Disability Pro- Partnerships,” and “Make a Plan.” Be- through its ordained and lay leaders, gram, in cooperation with the Emer- cause congregations are trusted to dis- can make sure members prepare per- gency Preparedness Initiative, is recruit- burse health and safety information, sonally for a disaster. One of the ing congregations to become part of our they are ideally positioned to promote congregation’s leaders, who happens “Congregations Who Care – Prepare” an emergency preparedness message. to have a disability, could lead a semi- pilot project. If you are a congregation • Training: A congregation can sponsor nar on this subject and distribute the currently working with your members to several members for Citizen Emer- N.O.D. Emergency Preparedness Ini- prepare for disasters, and are interested gency Response Training (CERT) that tiative brochure, found on the Web in learning how to incorporate people is offered by the Department of site at www.nod.org/emergency, en- with disabilities into your plans, please Homeland Security’s Citizen Corps titled “Prepare Yourself: Disaster contact us. Similarly, if you are a congre- program (www.citizencorps.gov). Readiness Tips for People with Dis- gation currently working to improve in- CERT is offered nationwide to people abilities.” People with disabilities clusion of people with disabilities, and with and without disabilities who are know best their own abilities and are concerned about disaster readiness trained to understand triage and the needs before, during and after a disas- for your congregation, let us serve you in chain of command following a disas- ter. Using a simple checklist, people your journey toward preparedness for all ter, as well as to do basic search and with disabilities and their families can people! Please contact Rik Opstelten for rescue and first aid. Or a congregation identify resources, make a plan, create further information at 202/293-5960 or could encourage its members to ob- a “ready kit” and a “go kit.” Each per- via e-mail at OpsteltenH@nod.org. tain American Red Cross training son, with and without a disability, can Adapted and reprinted with permission (www.redcross.org). Once again, this decrease the impact of a disaster by from “Congregations Who Care – Prepare,” gives a congregation an opportunity taking steps to prepare before an published by the National Organization on to be informed, involved and pre- event occurs. Disability (N.O.D.). Retrieved June 6, 2007 pared. from www.nod.org/congregationsprepare. Resources for Information on Disability and Disaster The following resources may be useful for to prepare for natural disasters and their Involvement includes checklists, tips, and in- further information about disaster prepared- consequences. Individuals with disabilities formation for families preparing for a variety ness, response, and recovery in relation to and those who work with, live with, or assist of emergencies or disasters. Available in people with disabilities. a person with a disability can use this book- English and Spanish. • The Take and Go Emergency Book let, which contains information and check- • Emergency Preparedness: Taking Respon- (www.dhh.state.la.us/publications. asp?ID lists that can help users organize a personal sibility for Your Safety – Tips for People =77&Detail=1193). A practical booklet for disaster plan. with Disabilities and Activity Limitations use by individuals with disabilities in per- • It’s Not Flu as Usual: What Faith-Based (http://lacoa.org/esppub.htm# Spec). This sonal emergency planning. Includes plan- and Community Organizations Need to guide is for anyone who has trouble walking, ning worksheets to fill out. Developed by Know About Pandemic Flu (http:// hearing, seeing, breathing, understanding, persons with disabilities and their families in healthyamericans.org/reports/flu/ learning or responding quickly. It includes collaboration with the Louisiana Office for brochures/FluBrochureFaith. pdf). A bro- checklists and worksheets for identifying the Citizens with Developmental Disabilities . chure from the Trust for America’s Health areas in which a person might need assis- • Disaster Preparedness for People that includes a checklist for preparing for tance during a disaster, their current level of with Disabilities (www.redcross.org/ and responding to a pandemic, and common emergency preparedness, emergency con- services/disaster/beprepared/disability. sense prevention precautions. tacts, and necessary emergency supplies. pdf; or in print from your local Red Cross • Disaster Preparedness for Families of Produced by the County of Los Angeles Office chapter, item #A5091). This in-depth guide Children with Special Needs (www. of Emergency Management, it’s available in is designed to help people who have physi- fifionline.org/disaster_plan.php) This re- English and Spanish. Additional resources are cal, visual, auditory, or cognitive disabilities source from the Florida Institute for Family also on the Web site. 18 Overview Serving and Protecting: The Role of Disability and Aging Organizations in Disaster Planning by June Isaacson Kailes All too often in emergencies, the con- evident (National Organization on task more efficiently, freeing shelter man- cerns of people with disabilities and Disability, 2005). agement staff for other activities, had seniors are overlooked or swept aside. Although local, state, regional, and they been plugged into the system with In areas ranging from the accessibility of federal government agencies play a major an assigned task and role (National Orga- emergency information to the evacuation role in disaster planning and response, nization on Disability, 2005). plans, great urgency surrounds the need these recent events confirm what has Disaster response commonly reflects for responding to these concerns in all been recognized for decades: traditional no use or under-use of help from disabil- planning, preparedness, response, recov- response and recovery systems are often ity and aging organizations (and some- ery, and mitigation activities. Prior plan- not able to successfully meet many hu- times ignored offers of help). There is ning will help prevent poor performance. man needs. The usual approach to deliv- often no designated entity or individual ering emergency services cannot provide to “own” and coordinate disability and many of the essential services needed by aging issues. Disability and aging Lessons Learned but Not Applied people with disabilities and activity limi- community-based organizations report Lessons documented regarding disability tations (National Council on Disability, difficulty in gaining access to emergency and aging populations during previous 2005; National Organization on Disabil- management authorities to coordinate disasters often don’t get incorporated ity, 2005). response and service delivery. This leads into subsequent planning, preparedness, to well-intentioned but misguided response, and recovery activities, hence The Importance of Disability and actions, only adding to the management Aging Expertise difficulties on the ground (National Organization on Disability, 2005). Disability and aging organizations To correct this situation, disability Disaster response commonly reflects represent a vast array of national, state, and aging organizations must be in- regional, and local human and social ser- cluded as partners in working with local, no use or under-use of help from vice organizations, faith-based organiza- regional, state, and national public and tions, and neighborhood associations private response agencies. And while disability and aging organizations. that are critical to the disaster response structural changes are needed on the part and recovery process. Disaster service of emergency response agencies to bring workers could never adequately replicate this about – such as establishment of a the expertise, skill sets, and resources of point person at the executive level of the they are not learned (United States Gov- these organizations. Disability and aging agency to provide leadership, guidance, ernment Accountability Office, 2006). organizations have unique and credible and coordination of all emergency pre- Segments of disability communities con- connections with the people they support paredness, response, and recovery opera- tinually report problems participating in and experience with delivering services to tions in relation to disability and aging and benefiting from emergency services them. Their unique skills and under- populations – there are also steps that over many decades (National Council on standing are invaluable. But unfortu- disability and aging organizations can Disability, 2005). The 2005 hurricanes in nately, they are an often overlooked take to establish or strengthen that part- the Gulf States reinforced these docu- resource for emergency planning, pre- nership. Three strategies community mented lessons regarding management, paredness, response, recovery and miti- organizations can engage in are 1) cross policy, and training issues identified in gation activities. For example, one shelter training, 2) integration of disaster work many previous large-scale disasters such manager involved in the Katrina response into their missions and funding, and 3) as Hurricane Andrew, the Loma Prieta complained about the length of time it advocating for creation of a state point- and Northridge earthquakes, and the took to locate assistive devices: “…it person position. September 11th terrorist attacks. The would have been nice to have ‘someone’ catastrophic scope and impact on local provide a list of resources in the area, rather than taking staff hours on Cross Training seniors, people with disabilities, and those with medical needs in the Gulf phones all day trying to find equipment.” A first step in increasing partnerships be- States underscores and amplifies the Knowledgeable disability and aging orga- tween disability and aging organizations issues and makes them all the more nizations could have accomplished this and emergency response agencies is to Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Overview 19 share knowledge with each other. Dis- ment services during disasters, partici- Service Teams (FAST), which are corps of ability and aging advocates and service pating in community networking and trained personnel from disability, providers need to strengthen their under- planning (including building relation- aging and other community organiza- standing of emergency management sys- ships with other disability and aging tions who are ready to respond to and tems if they are to have a role in shaping organizations to coordinate efforts), deploy to disaster areas to assist people plans and responding to disasters. To sharing back-up staff and resources with disabilities and functional limita- improve effectiveness they need to par- across agencies during disasters, partici- tions. Creation of such a position in each ticipate in activities that provide orienta- pating in their community emergency state could help to facilitate collaboration tions to emergency management organi- response teams and citizen corps, and between disability, aging, and emergency zations and structure, as well as to the becoming an integral part of the commu- organizations, and keep the partnership roles of traditional recovery organiza- nity response system. Disability and process and momentum going. tions such as FEMA, the American Red aging organizations can also, by integrat- Cross, and other Voluntary Agencies ing disaster preparedness into their Active in Disaster (VOAD). Likewise, missions, be involved in creating and Conclusion emergency managers in government compiling guidance materials for emer- Emergency management systems need agencies need to strengthen their under- gency response agencies on the needs of help with the very specific and often standing of disability and aging popula- people with disabilities, and in develop- complex needs of people with disabilities tions and of the organizations that serve ing and distributing emergency pre- and seniors. Well-intentioned emergency them. Toward these ends emergency paredness materials for people with dis- medical and public service personnel response agencies and disability and abilities, their families, and support staff, cannot adequately address the complex aging organizations should engage in including materials that have disability and additional needs of this population cross orientation, training, and planning specific content and are accessible to without a deep and thorough under- activities. people with limitations in hearing, standing not only of disabilities and of vision, mobility, speech and cognition. aging, but also of the values and goals of And they can help those whom they independent living and self-determina- Integration into Mission serve to develop individual and family tion, and absolute clarity about the hu- A second way in which disability and emergency preparedness plans. man and civil rights of people with dis- aging organizations can be effectively abilities and seniors. Disability and aging involved in emergency preparedness is Advocating for a State Point Person organizations can take steps toward through integrating disaster planning, establishing a collaborative relationship In addition to the previous suggestions, with emergency management agencies to disability and aging organizations can ensure this understanding and clarity ex- advocate strongly for the creation of a ists, and that the concerns and needs of Disability and aging organizations structure in state emergency services that people with disabilities and seniors are ensures inclusion of people with disabili- effectively addressed in times of disaster. can take steps toward establishing ties. One proposal is creation of a state- level position that could be titled Access References and Functional Services Coordinator Kailes, J. I. (April 29, 2007). Access and functional services coordinator: collaborative relationships with California Governor’s Office of Emergency Service proposed deputy direc- within a state office of emergency ser- tor position (Version 3). Ponoma, CA: Center for Disability Issues and the Health Professions, Western University of Health Sciences. Re- emergency management agencies. vices (Kailes, 2007). The position would trieved June 4, 2007 from www.jik.com/disaster.html. provide oversight to ensure that state National Council on Disability (2005). Saving lives: Including people with disabilities in emergency planning. Retrieved June 4, 2007 from and local emergency planning incorpor- www.ncd.gov/newsroom/publications/2005/saving_lives.htm. ates the diverse needs of people with dis- National Organization on Disability (2005). Report on Special Needs Assessment for Katrina Evacuees (SNAKE) Project. Washington, D.C.: preparedness, response, recovery, and abilities and functional limitations in all Author. Retrieved June 4, 2007 from www.nod.org/Resources/PDFs/ katrina_snake_report.pdf. mitigation activities into their missions, preparedness, response, recovery and U.S. Government Accountability Office (February 1, 2006). Statement by along with allocating and seeking fund- mitigation activities. It could facilitate Comptroller General David M. Walker on GAO’s preliminary observations regarding preparedness and response to Hurricanes Katrina and Rita ing to support such activities. By estab- appointments of qualified representa- (GAO-06-365R). Retrieved June 4, 2007 from www.gao.gov/new.items/ tives from disability and aging organiza- d06365r.pdf. lishing disaster activities as a priority, organizations strengthen their position tions to local and state emergency plan- June Isaacson Kailes is Associate Director as a partner in emergency preparedness, ning committees, provide sustained with the Center for Disability Issues and the response, and recovery. They equip funding incentives that allow disability Health Professions at Western University of themselves to be an asset to emergency and aging organizations to integrate Health Sciences, Pomona, California. She response agencies and to engage in disaster work into their missions, and may be reached at 310/821-7080 or through activities such as augmenting govern- oversee Functional Assessment and her Web site at www.jik.com/disaster.html. 20 Overview The Impact of Building Design on Evacuation of Persons with Disabilities by Keith Christensen and Patricia Salmi Individuals with disabilities represent a physical effort, and size and space for ap- should be located in close proximity significant, although often overlooked, proach and use (Story et. al., 1998). The to the inaccessible exits to permit bet- portion of the population in emergency list of suggestions in this article incorpo- ter visibility of individuals who might evacuations from buildings. Americans rates Universal Design principles and can need assistance. with Disabilities Act guidelines require be used by individuals, their families, • Spatial overview opportunities. that provisions for accessible evacuation and service providers to evaluate build- Does the building have spatial over- or exit must be made; however, failures ings for clarity and ease of movement to view opportunities, which are places in meeting the evacuation needs of indi- safety during times of emergencies. where one can “look over” the area. viduals with disabilities continue to Spatial overview opportunities allow occur (Christensen et. al., 2007). These people to gain building information failures may be attributed to evacuation Spatial Organization quickly about various parts of a policy and planning that emphasizes Spatial organization or building layout building, including exits and corri- is critical during building evacuation, dors that lead to exits as well as paths either facilitating or inhibiting move- that lead to destination zones and/or ment to safety, and relates to the Univer- places of shelter within a building, Universal Design is a useful tool sal Design principles of equitable use, and reduce the possibility of errors simple and intuitive, flexibility in use, during exiting. for evaluating and designing and tolerance for error. Key points to • Spatial layout. How is the building look for in spatial organization include: laid out? Is the layout confusing? Is it buildings to better support the • Destination zones. Determine if a easy to get lost? Symmetrically laid larger building or building complex out buildings (i.e., one side mirrors emergency evacuation needs of has destination zones, which are the the other) need clearly differentiated easily-identified areas in a building. sides (i.e., the sides need to be clearly individuals with disabilities. Examples of this might include a food marked in different manners). Con- court in a shopping mall or a cafeteria fusing layouts in which it’s easy to get or central atrium in an office com- lost benefit from the judicious use of plex. Destination zones can be useful color, lighting, landmarks, and helping an individual with disabilities in designating areas for sheltering signage to clearly mark exiting areas adjust to the environment, rather than people within the building and for and destination zones designated as adjusting the environment to accommo- providing orientation points in giving places of shelter. Also helpful in dif- date the individual (Hahn, 1985). During directions; they should be clearly ferentiating spatial layout are archi- evacuations, it is the design of the envi- marked and discussed during emer- tectural features such archways, col- ronment that creates the majority of gency evacuation practices. umns, and windows (and possibly evacuation barriers. For individuals with • Equitable means of accessible exit. doors) that make a particular space disabilities, their families, and service The same options for getting out of a memorable. providers, it is important to evaluate en- vironments for clear and easy movement building should be available for all of to safety during emergencies. the population, including those with Use of Signs Universal Design is a useful tool for disabilities. While it is allowable by evaluating and designing buildings to building codes, providing alternate Signs are useful in communicating neces- better support the emergency evacuation accessible emergency exits can be sary information and are an important needs of individuals with disabilities. very confusing. To avoid confusion, element for emergency building evacua- Universal Design is an approach to make every emergency exit should be acces- tion related to the Universal Design prin- buildings usable by the broadest group sible. If it is impossible to make the ciple of perceptible information. The fol- of users possible, and is based on seven exit accessible, on the second floor of lowing describes building sign place- design principles: equitable use, flexibil- the building for example, safe areas ment and desirable characteristics: ity in use, simple and intuitive, percep- for sheltering people within that area • Placement of signs. Building infor- tible information, tolerance for error, low need to be provided. These areas mation signs, including signs provid- Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Overview 21 ing direction to destination zones, architectural features such as decora- Resources for Information should be clearly visible from the tive columns, archways, or photo- path of travel, above eye level, and lit graphs. The following may be useful for further appropriately. Evacuation signs • Landmarks and signs. Landmarks information about disaster preparedness should appear at regular intervals, should be paired with appropriate in relation to people with disabilities: particularly at decision points, to let signage to convey important infor- • Emergency Evacuation: Safe Egress of people know they’re going the right mation and guide evacuation deci- direction. Persons with Disabilities from Transit sions. • Readability of the information. Systems (www.projectaction.org). This All information signs should be fact sheet provides information for transit readily legible in adverse conditions. Conclusion agencies and for people with disabilities The text of the sign should be large, Exiting a building during an emergency about planning for safe evacuation from easily readable, and have a high con- can be a difficult experience for anyone. public transportation during an emer- trast with the background. The signs By following the recommendations pro- gency. Prepared by Easter Seals Project should be carefully lit to prevent any vided and the principles of universal glare that causes them to be unread- ACTION and the National Organization on design, buildings can more readily ac- able. The text should be paired with a commodate the broadest group of users, Disability Emergency Preparedness Initia- graphic image that is clearly under- to the greatest extent possible. Building tive. stood, a feature that is useful to non- universally designed exit features into • Project Safe EV-AC (http://evac.icdi. readers. Additionally, raised images, environments not only makes good wvu.edu). The Web site of this project at text, and Braille should be incorpo- sense, but also offers the promise of rated in the sign in a consistent man- West Virginia University has resources for increasing the safety and welfare of all, ner. Color should be used only as a including persons with disabilities. emergency responders as well as people reinforcing cue and related to the en- with disabilities and those who support vironment. For example, if there is References Christensen, K.M., Blair, M.E. & Holt, J.M. (2007). The built environ- them. The focus is improving evacuation more than one destination zone and/ ment, evacuations, and individuals with disabilities: A guiding frame- from buildings, vehicles, and other settings or exiting area, use signage that is work for disaster policy and preparation. Journal of Disability Policy Studies, 17(4). 249-254. during emergencies by providing training paired with a graphic and reinforced Hahn, H. (1985). Disability policy and the problem of discrimination. with a color such as orange. The American Behavioral Scientist, 28(3), 293-318. materials on the evacuation and accom- Story, M.F., Mueller, J.L., & Mace, R.L. (1998). The universal design file: modation of people with disabilities. orange color should be obviously Designing for people of all ages and abilities. Raleigh, NC: North repeated in the destination zone as Carolina State University, Center for Universal Design. • U.S. Access Board, Resources on well as the accompanying exit. Emergency Preparedness and Evacua- Keith Christensen is a Senior Research Associate and Landscape Architect with the tion (http://www. access-board.gov/ Landmarks Center for Persons with Disabilities, Utah evac.htm). This Web site on emergency Use of landmarks is important during State University, Logan. He may be reached preparedness includes extensive resources evacuation and provides useful and ac- at 435/797-3997 or firstname.lastname@example.org. on accessibility issues in evacuation plan- cessible building information to people Patricia Salmi is a Research Associate with ning and response. It’s operated by the with disabilities. Desirable characteris- the Research and Training Center on Access Board, a federal agency committed tics of landmarks that help mark a path Community Living, Institute on Community Integration, University of Minnesota, to accessible design, that develops and and make the space memorable include Minneapolis. She may be reached at 612/ maintains accessibility requirements for the following: 625-0171 or salm0054@ umn.edu. the built environment, transit vehicles, • Distinctive landmarks. Landmarks that are distinct in shape, color, and telecommunications equipment, and for appropriately lit are memorable and electronic and information technology can serve to orient people in the under several different laws, including the space, as well as provide an effective Americans with Disabilities Act (ADA). way to direct them to exits. • ADA Checklist for Emergency Shelters • Types of landmarks. Distinct desti- (www.ada.gov/pcatoolkit/chap7shelterchk. nation zones and large artwork can serve as landmarks, especially if they htm). This checklist from the U.S. Depart- are colorful, well-lit, provide an inter- ment of Justice, Disability Rights Section, active feature, and contain distinct evaluates the accessibility of shelters. 22 Overview Emergency Preparedness at Home for People with Disabilities: Guidelines Protecting yourself at home when disas- u Learn what to do for each kind of Prepare a Disaster Kit ter strikes requires planning by both you emergency. For example, if you use a Assemble supplies you might need in an and others who live with you for at least wheelchair, can you access the “safe evacuation. Store them in an easy-to- 72 hours. This checklist can help you get area” for a tornado (usually the base- carry container such as a backpack or started. ment), or do you need to go to an duffel bag. Tailor this kit to your specific alternate place? needs. Your emergency kit should in- clude these items: Get Information u Be self-reliant. Assume responsibility for your safety – even if your building u Battery-powered radio, flashlights, u Find out how you would be warned lighter, candle, matches and extra has a plan that takes into account of an emergency. If the warning is by batteries. your disability. means not accessible to you, suggest or arrange alternatives. u Learn escape routes and how to exit u A first aid kit, medications and copies the building without help if neces- of prescriptions. u Determine aid that might be avail- sary. u Water purifying tablets. able to you in an emergency. u Establish two evacuation routes in u Contact your local fire department or u Change of clothing, sturdy shoes, case the primary one is blocked. and rain gear. emergency management office to see if they maintain a register for people u Practice evacuating the building on u Personal hygiene items. with disabilities so help can be pro- your own as well as in the building’s vided quickly in an emergency. drills. u Special equipment you may need such as augmentative communica- u Determine alternative “safe areas” tion equipment, insulin supplies, with input from the fire marshal. cane, food and water for sight dog, Protecting yourself at home when u Arrange how your family can contact etc. you and how you can contact them if disaster strikes requires planning you must leave your home suddenly. u Hearing aid batteries. u The style and serial numbers of by you and others who live with you u Find a secure place to store things medical devices you use. you may need that can be easily accessed in an emergency. u Blanket and a sleeping bag. u Obtain and use health and informa- u A list of family, physicians, and a Create a Plan tion cards with critical information relative or friend who should be noti- u Talk to your landlord, service pro- such as your ID, people to contact, fied if you re injured, along with a vider, family and/or roommates to and any medical issues affecting you. back-up contact person living outside discuss what plans are in place for the immediate area. u Determine any special aid you may emergencies that might occur. need from emergency responders in u Important documents including u Discuss provisions that have been relation to your disability. contacts, ID cards, and bank account made to assist you in an emergency. numbers, as well as cash. u Acquire a cell phone with a GPS. Pro- u Discuss what preparations you can gram in emergency numbers so they make to prepare yourself for differ- can be activated without speech. Adapted and reprinted with permission ent kinds of emergencies. from “Emergency Preparedness at Home for u Consider acquiring a medical alert People with Disabilities,” published by the u Learn what you will need to know for system that will allow you to call for Center for Disability and Special Needs each of these emergencies (e.g., how help if you are immobilized. Preparedness, Washington, D.C. Retrieved to evacuate or shelter-in-place, where June 6, 2007 from their Web site at emergency equipment is located, www.disabilitypreparedness.org. They may where a designated meeting place is, also be reached at 202/338-7158, x 201. where you will be evacuated to, etc.). Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Profile 23 Getting Ready for an Emergency in Maine: Training By and For Self-Advocates by Kelly Baston and Laurie Kimball People with disabilities are among those approach in the notes, so trainers who most likely to be adversely affected in an could not read would be able anticipate emergency. Yet, when Adult Develop- what was coming up. Trainers reviewed mental Services at the Maine Depart- formats for written information recom- ment of Health and Human Services mended in an emergency, and created (DHHS) wanted to offer emergency pre- their own forms based on one from the paredness training for the people they Red Cross. The result, Getting Ready for serve, they were surprised to find very an Emergency, is a presenter’s manual and little material out there for this audience. PowerPoint slide show for a workshop Believing that people with intellectual co-taught by two trainers, at least one of and developmental disabilities need to whom is an individual labeled with an learn what to do for themselves to be pre- intellectual disability. pared for a storm, flood or even a pan- At the end of each workshop, partici- demic flu, Maine set out to create a co- pants are familiar with the basic aspects trainer model that would meet that need. of emergency preparedness: identifying We knew that people with disabilities an emergency, the importance of being would be the best creators and teachers prepared, listing items important to have of material for our audience, so initially in an emergency, how to decide about A handout from “Getting Ready for an Emergency.” DHHS contracted with Mobius, Inc., an evacuation, and important written infor- agency that supports people with dis- mation to complete. Participants receive On other occasions, participants told of abilities, to work with self-advocates to “go bags” purchased by DHHS to use to times their staff became incapacitated in compile material for the curriculum. evacuate if they need to. They also leave an emergency and they needed to act to Maine’s self-advocacy group, Speaking with a graphic list of selections to put in protect them both. Whether or not Up For Us (SUFU), was approached and a “go bag” or an emergency kit at home. people have staff or full-time support, SUFU members got involved because Training has been conducted in about they need to know for themselves so they they realized the crisis potential if people 15 locations across the state, reaching will be safe and won’t get stuck or be did not know the facts. In Maine there more than 100 self-advocates, family scared. For these reasons, both SUFU and are regular floods, ice and snow storms, members and supporters. The response DHHS would like to expand the audience and power outages. SUFU believes self- at training events has been quite favor- for this training in the coming year and advocates need to know for themselves able, with most participants asking for are currently discussing the best way to what to do when these things happen more opportunities to learn. While it is deliver it to as many people in as many because knowing what to do can provide difficult to gauge the effectiveness of the locations as possible. We anticipate offer- the power that helps people to be safe training at this point because it’s so new, ing workshops at regional SUFU confer- and not panic or be scared. SUFU mem- during a recent storm with high winds, ences, as well as to local self-advocacy bers were asked to identify the important flooding, and power outages the DHHS groups. The curriculum is also being training topics and some possible regional office did not receive the usual made available to others who would like consultants/trainers, and interested deluge of calls asking for help figuring to offer it in their areas. We expect the members were hired as consultants to out what to do or how to get ready. While instructor’s manual and PowerPoint help refine and co-teach the curriculum this is good news, DHHS is looking to slides to be available online for people to with the Regional Training Coordinator other ways to measure and build upon download in Fall 2007 at www.maine. for DHHS. A draft PowerPoint slide show the outcomes of the workshops. gov/dhhs/bh/index.html. was pulled together from available Although the first round of training Kelly Baston is a member of Speaking Up resources on emergency preparedness targeted individuals who live alone, it For Us of Maine, and a co-trainer for the and brought to self-advocacy groups for was clear from the start that everyone curriculum. Laurie Kimball is Training comment. Co-trainers selected one con- can benefit from the information. Some Coordinator with Adult Developmental cept to discuss for each slide, and chose support staff who were present were mis- Services, Maine DHHS, Portland. They graphics that would be meaningful. They informed about what to do, and they may be reached at 207/822-0271 or also created a key, and a consistent were able to learn accurate information. email@example.com. Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. 24 Profile Emergency Preparedness: A New Tool for Assessing State’s Readiness by Charles Moseley and Patricia Salmi In the days and weeks following the devastation wrought by hurricanes Katrina and Rita, state developmental disabilities agencies across the country stepped forward with offers to provide staffing, housing, funding, and other direct assistance to the Gulf Coast states. The National Association of State Directors of Developmental Disabilities Services (NASDDDS) received countless calls and e-mails from members with offers of assistance. A special member- ship teleconference was hurriedly con- vened to inform the state agency officials of the actions they could take to assist their sister agencies. During this call, state leaders learned of the extreme chal- lenges facing the affected states, and began to identify critical emergency pre- paredness lessons that could be learned by all state disability agencies from the The opening screen of the online self-assessment instrument. tragic aftermath of these storms. In the weeks that followed NASDDDS The NASDDDS Emergency Response and federal emergency management began compiling existing state and na- Preparedness Self-Assessment Instrument is agencies, statewide mutual aid compacts, tional emergency preparedness materi- a flexible self-assessment tool for state and national and local authorities; and als, recommendations, and best practice officials to use to determine the extent to (c) it fully addresses the challenges asso- examples to assist member state agency which their agency’s current emergency ciated with protecting disaster victims officials as they assessed their emergency preparedness plans address issues that and potential victims with intellectual response plans and capabilities. While a are critical to the support and protection and developmental disabilities who live great deal of resource material was avail- of individuals with intellectual and de- and work in a wide range of community able, it soon became clear that most of velopmental disabilities during periods settings and situations. the information on preparedness was of of disaster or crisis. The instrument was The organization of the instrument limited applicability to the needs of indi- developed by a partnership between reflects the need for it to be used by viduals with intellectual disabilities and, NASDDDS and the Research and Train- states that have a variety of disaster pre- as a result, of little use to state develop- ing Center on Community Living at the paredness planning approaches. Some mental disability agency officials. In University of Minnesota, under the guid- states, for example, first organize their response, the NASDDDS board of direc- ance of an ad hoc advisory committee planning according to management tors launched an initiative to develop composed of nine state developmental activities, such as preparing, responding new tools to assist member agency offi- disability agency directors and other offi- and recovering. Others plan around cials to design and build state-specific cials with extensive emergency planning operational levels that describe the emergency preparedness plans that experience. The instrument has been de- responsibilities of individuals, service address the unique characteristics and signed with the following characteristics providers, and government entities. And needs of individuals with intellectual and as central features: (a) it is easy to use other states structure their emergency re- developmental disabilities. The outcome and applicable to the range of programs sponse planning around specific content of that work is the Web-based NASDDDS and services furnished by state develop- areas such as collaboration, communica- Emergency Response Preparedness Self- mental disabilities agencies; (b) it fits tion, and transportation. The instrument Assessment Instrument (http://rtc.umn. within the broader context of emergency therefore is structured according the edu/erp/main). preparedness plans developed by state following categories, allowing users to Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Profile 25 directly access the assessment format Areas). They next identify the specific Who’s in Charge? Locating that best meets their needs: areas to be reviewed within those catego- • Management Activities: Preparing, ries. Then, the program generates a se- Emergency Planning responding, recovering. ries of questions regarding the extent to which the various emergency response Agencies in Your Area • Operational Levels: Individual, service provider, local/municipal plans address a particular issue. Users Individuals, families, and organizations authorities, county/regional authori- are asked to indicate whether the topic being described is (a) adequately ad- who want to learn more about emergency ties, state agencies, national emer- plans for their communities, and about gency agencies and entities. dressed by their state’s emergency plan- ning documents, (b) addressed but needs how to have a voice in the planning pro- • Content Areas: Collaboration with improvement, (c) is not addressed, or cess, may find the following resources use- state emergency management agency (d) the user does not know. Users are activities; stakeholder involvement; ful in locating those who are in charge: then able to select one of the following communication and coordination; for each question: “Flag this item for fu- • Ready America (www.ready.gov). This workforce (duties, roles, responsibili- ture action,” “comment about my state’s Web site of the Department of Homeland ties, availability, training needs); readiness to address this issue,” “view Security includes an interactive map that power generation (heat, light, air con- supporting resources for this evaluation leads to state and local government re- ditioning, refrigeration); transporta- statement,” or “make comments.” The tion (before, during, after); identifica- sources with information on preparedness program keeps track of the answers pro- tion and tracking of clients and staff in their areas. vided in the self-assessment and provides members; evacuation; specialized a summary for each specific area as well • National Organization on Disability’s supports for individuals with develop- as an overall summary report. Interactive Map of Disability and Emer- mental disabilities; and shelter. The instrument has been field-tested gency Preparedness Resources (www. In contrast to text-based materials in six states and will be available for ac- nod. org/EPIResources/interactive_map. that provide a single format for all users, cess online by all states in early Septem- ber 2007. Although developed for the use html). This Web resource of N.O.D.’s Emer- the NASDDDS instrument is a Web- based tool that can be easily adapted to of state developmental disability agency gency Preparedness Initiative is an inter- the specific organizational format of a officials, the instrument’s broad scope, active online map of federal, regional, state’s emergency preparedness plans. All comprehensiveness, and ease of use state, and local disability and related survey items are placed in a searchable has earned it high praise from others emergency management resources. Users database that permits users to rearrange involved in the field-testing process, can click on the map to view a list of links the format to best meet their needs. including provider agency officials and other stakeholders. State agencies, com- to disability and emergency preparedness Structuring the self-assessment in this way offers a simple and straightforward munity service providers, and others resources in their states. approach that makes it easier to interested in exploring its usefulness for • Citizen Corps (www.citizencorps.gov). access the information both across and evaluating their emergency preparedness Citizen Corps is the Department of Home- within categories. Rather than having to plans in relation to individuals with intel- land Security’s grassroots effort to provide page through the entire document one lectual and developmental disabilities can find more information, as well as a opportunities for citizens to get emer- section at a time, a user can “click” on a level – “preparing” for example – and be demonstration version of the instru- gency response training, participate in able to access all items pertaining to ment, at http://rtc.umn.edu/erp/main. community exercises, and volunteer to “preparing” across all operational levels support local first responders. These op- and content areas. Users can follow the Charles Moseley is Director of Special portunities are offered through state and questions from one category to another Projects, National Association of State local Citizens Corps Councils. This Web site or navigate to a different section alto- Directors of Developmental Disabilities Services, Alexandria, Virginia. He may be includes links to the local and state coun- gether. Links to relevant resource materi- als are embedded within each question reached at 703/683-4202 or moseley@ cils across the country as well as to part- so that users have immediate access to nasddds.org. Patricia Salmi is a Research ner programs. extensive references and additional Associate with the Research and Training • PandemicFlu.gov (www.pandemicflu. information. Center on Community Living, Institute on Community Integration, University of gov). This Web site of the U.S. Department Users begin working with the tool by selecting one of the three initial organiz- Minnesota, Minneapolis. She may be of Health and Human Services includes an ing patterns (i.e., Operational Levels, reached at 612/625-0171 or salm0054@ interactive map with links to each state’s Management Activities, or Content umn.edu. pandemic planning information and contacts, along with other information. 26 Profile Katrina is Not Over: Stories From the Arc of Mississippi by Matt Nalker I was asked a few days ago if I was happy Today, normal for our local chapter of In another case we were able to help a Katrina was over. The person who asked The Arc in Gulfport Mississippi means family of 11 who fled Louisiana and me that question had no clue what he meeting regularly to discuss the need to evacuated to our city. The mother, son was saying. It was clear to me he was not charge for services they were able to pro- and daughter, along with their 75-year- affected by the storm nor did he have vide for free for 50 years. Although their old aunt, spent three days on the road anyone close to him affected or he would sheltered workshop only sustained mi- sleeping, eating, and barely surviving a never have uttered such an ignorant nor damage, the city of Gulfport and 200-mile journey into the unknown. statement. People lost everything! many, many of its members lost most of When they arrived in Jackson they found A lot of people are still living in FEMA everything they owned. Let that marinate themselves in a hotel for one night and trailers, mucking out their homes with for a minute – “Everything they owned!” then kicked out due to insufficient funds little to no help. People with disabilities The priority of the day for almost a year to stay. They quickly reunited with the are still on extended stays with other or longer for many of these people was rest of their family in another hotel, shar- not disability policy or quality of services ing space with the other six members in for the people we represent, it was food two hotel rooms for the eleven. Just as be- and shelter and basic necessities for all. fore, the management needed them to Some thought a man with Now that was true inclusion. leave due to insufficient funds. Back in I remember a call in the office a few survival mode they met with manage- disabilities wanting to spend months after the storm reporting that a ment to no avail. While in the hotel office man with a cognitive disability and a they met a past advocate of The Arc of his money on camping supplies wheelchair user used his FEMA dollars to Mississippi who was there with her buy camping gear. The well-intended church handing out bottled water. She during hurricane recovery was silly, reporter was aghast that someone in his was told their story and we were called. condition would not use the money to The son was a wheelchair user in dire but seeing looters taking off with better himself in other ways. As a per- need of assistance. You see, they left son-centered organization we went out Louisiana in the middle of the night and others’ sentimental belongings it and actually asked the man what he was forgot his foot pegs for his chair. His feet doing and if we could offer assistance in had been dangling for days and the pres- made perfect sense that he would doing it. He had been in a shelter watch- sure had swollen his feet to basketball ing the news and saw the many reports size proportion. Not being from Jackson, camp out to protect his possessions. of looters taking things from the rubble; and still being in survival mode from he was not going to let that happen to sleeping in the car for days and not him. When we arrived he was deter- knowing about the status of their home mined to camp out at his home-site and back in Louisiana, this family was in dire family members or sister organizations spend his days rolling through the straits. As a mission run person-centered further up state, their homes as they rubble, stacking up pictures, furniture, organization, we were able to help sup- knew them never to be the same. Some clothes and other various stuff that was port this family for 10 months in their of the luckier ones who got only eight his before the storm. He had the need to own hotel room, get them the medical feet of water in their homes are able to protect his stuff and there were people attention the entire family needed, and get back to normal after stripping the who believed that because he had a dis- most importantly make several trips house down to the studs and getting the ability, he should not be allowed to do so. back home to get their home ready for proper inspection then re-sheetrocking In the end, he purchased his camping their return to Louisiana, where they live and insulating and basically rebuilding supplies, and ended up camping out at today. This family and so many others the entire home while living in a FEMA his home and protecting his property – have profoundly impacted the supports trailer in the driveway and, yes, truly just as so many of the other Katrina vic- and services we provide as a primarily considering yourself lucky. Normal life tims did. The only difference in his case advocacy organization. has an entirely new meaning to most and his neighbors‚ was that he was there The purpose of this article is to give a people affected by the storm. with the proper supports who ensured perspective from an agency that has ex- his safety and independence. perienced recurring disaster preparation Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Profile 27 and recovery, and to tell about the les- looters taking off with others’ sentimen- and that we were able to partner with sons learned that could benefit other tal belongings, it made perfect sense many agencies to experience the out- agencies. My lesson is to always be per- that he would want to camp out to pro- comes we all wanted for the people we son-centered and find out for yourself tect his possessions. Some may assume still get to represent. what the real issues are so you can help that 10 months is far too long to stay in a Katrina is NOT over and we are still make proper decisions to help with the hotel when your home was damaged, learning lessons from it. situation. Some thought that a man but until you visit the devastation and wanting to spend his money on camping see for yourself what thousands of Matt Nalker is Executive Director of The supplies during hurricane recovery was homes still look like, you cannot under- Arc of Mississippi, Jackson. He may be silly, but driving down the demolished stand. I’m glad we were able to be hon- reached at 601/982-1180 or by e-mail at streets of Bay St. Lewis and seeing the est about what we were able to provide firstname.lastname@example.org. FIVES: Facility Information, Vacancy, and Evacuation System for Long-Term Care Facilities in Texas When Hurricane Katrina came ashore in worked at an acceptable level, it was evacuation plan. During an evacuation Louisiana in August 2005, it left hundreds of extremely labor-intensive, and, because of event, it is the responsibility of each facility to thousands of Louisianans homeless. Many of time constraints, facilities were contacted use FIVES to do the following: those displaced by the storm ended up in only once daily, except in unusual situations. • Update its vacancy data. Texas shelters, in what the Federal Emergency Once the worst of the crisis was past, DADS • Identify potential partners that are able Management Agency (FEMA) called “the staff reviewed their response efforts to see to accept evacuees. largest relocation in American history.” Many how the job might be done better in the future. One area in which the need for • Make arrangements with those partners others, some of whom were medically fragile, improvement was glaring was communi- to transfer residents. ended up in hospitals and nursing homes. Less than a month later, Hurricane Rita cation with, and collection of information • Update their evacuation status when the came ashore on the Texas-Louisiana coast. from, long-term care facilities. facility is evacuated. This time, hundreds of thousands of Texans As part of the effort to streamline agency- DADS expects long-term care facilities to evacuated, but with shelters and health care facility communication, DADS developed a become familiar with the FIVES system facilities already filled with displaced people Web-based “Facility Inventory, Verification, before the next hurricane or emergency from Louisiana, available space was at a and Evacuation Status (FIVES)” application. occurs, and to practice using it by entering premium. While state emergency responders, FIVES is designed to help long-term care their current number of vacancies. Although local jurisdictions, and response organiza- facilities help each other during large-scale DADS has not yet used FIVES during an tions like the Red Cross worked together to disaster events that require facilities to evacuation event, DADS incorporated FIVES develop shelter space for the general public, evacuate their residents. (See http://fives. into a functional hurricane exercise in June employees of the Texas Department of Aging dads.state.tx.us/). 2007, and more than 600 facilities accessed and Disability Services (DADS) worked day Using FIVES, providers can record their the site and entered their facility data. and night to locate appropriate shelter for vacancies as well as information related to evacuees in need of long-term care. their evacuation status. Users can generate Contributed by Bo Platt, Disaster Coordinator with DADS’ employees called thousands of long- online, real-time FIVES reports showing Texas the Texas Department of Aging and Disability term care facilities daily to determine their vacancies by provider type, county, city, and Services, Austin, Texas. He may be reached at 512/ status. Staff called facilities near the coast to other variables. With this information, 438-5744 or at email@example.com. ensure that they had viable evacuation plans, providers that need to evacuate their facilities and inland facilities were polled to find can easily identify other facilities that have vacant space that was appropriate for use by the capacity to accept evacuees. evacuating facilities. While this procedure Each facility is responsible for its own Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. 28 Profile Responding to Disaster: Lessons From Louisiana’s Disability Services System by Kathy Kliebert On August 27, 2005 as Hurricane Katrina touch with providers. Agencies did not The State Agency Response threatened the southeastern coast of have adequate tracking systems to At the Office for Citizens with Develop- Louisiana, developmental disability ascertain the current location of people. mental Disabilities the challenges we service providers felt prepared for the People who went to shelters often moved faced in responding to these storms were storm and began implementing evacua- to other locations before we were able to overwhelming. First, we quickly recog- tion plans. Less than a month later, Hur- assess, take action, and track these subse- nized our essential functions during this ricane Rita hit the southwestern coast. quent moves. The lack of available com- disaster were very different from our tra- Our developmental disabilities agencies munication and the inability to track and ditional ones, and entirely new roles were had significant experience and practice in coordinate program participants, provid- established for almost every employee in hurricane evacuation and had disaster ers, and staff significantly impaired the our office. Our staff ’s efforts became plans that were considered comprehen- ability to reconnect people to the sup- focused on the following: sive and effective. These plans included ports and services they needed. Almost a • Location and relocation of people week after the initial hurricane, we were with developmental disabilities. still unable to locate over 75% of people • Reconnection of people to services. receiving waiver services and 50% of What neither the developmental those receiving ICF/DD services. Four • Management of prolonged evacua- months later, we still had not accurately tions of large institutions. disabilities services system, identified locations of 13% of waiver • Receipt and distribution of donations. participants. • Reestablishment of local offices. nor most of Louisiana’s citizens, People who were not receiving ser- • Distribution of emergency resources. vices or who had limited family support were prepared for was the struggled both in the evacuation process • Crisis response to those in shelters and in the aftermath. Transportation for who have disabilities and mental aftermath of the two storms. people with physical disabilities was health issues. severely lacking, resulting in people My personal efforts were focused on remaining in homes with tragic conse- directing these activities, as well as work- quences. People without identification ing with our Medicaid bureau and coor- were transported to unknown destina- dinating with federal agencies on emer- detailed procedures regarding staff tions; many were unable to provide infor- gency rules, policy exceptions, and other responses and multiple assurances for mation to assist with their identification administrative tasks to ensure people health and safety of people receiving ser- and service provision. People were trans- could continue to receive services and vices. What neither the developmental ported without necessary medical sup- providers could continue to be paid for disabilities services system, nor most of plies and adaptive equipment. People services. The disaster made it impossible Louisiana’s citizens, were prepared for were placed in nursing homes because of to follow previously established rules, was the aftermath of the two storms. the lack of more appropriate shelter. and exceptions were made on almost a Efforts to move people out of shelters daily basis. Louisiana is fortunate that the were stymied by expensive or unavailable Medicaid agency is in the same depart- After the Hurricanes housing. Accessible housing was no ment as our agency, so we were able to Following the storms, communication longer an option. Over 20 months later, work collaboratively to devise creative from almost every source failed, making we still have people with developmental solutions to assure access to care and the it virtually impossible for people to con- disabilities living in other states who continuity of services. No statewide dis- nect to their family members and the out- desperately want to return to Louisiana; ability service system had ever been faced side world. Important information that however, they are unable to obtain hous- with such extensive dispersion of people, needed to be dispersed to people with ing. No agency or system in Louisiana loss of direct support staff, extended disabilities, their families, providers and was prepared for the enormity of the shelter stays, loss of infrastructure, non- others could not be relayed. Support co- disaster and our ability to respond was functional communication, extended ordinators could not get in touch with often slow and frustrating. evacuations, and loss of providers and participants; participants could not get in housing. Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Profile 29 What We’ve Learned • Effective Transportation and Shelter center (serving 242 people) which was The experiences of Katrina and Rita Access. An effective system response located in the “Red Zone (Critical taught us that we must have a compre- must assure that wheelchair acces- flooding zone)” to a community based hensive disaster response system that can sible transportation is immediately operation that serves 32 people in sup- address each of the realities listed above. available to assist in evacuation from ported living and community homes. We recognized that there are at least affected areas. People with disabili- Review and consideration of relocat- seven essential components of this com- ties must be able to immediately ac- ing residential sites that are high risk prehensive response: cess living situations such as shelters for significant disaster is an excellent or other temporary living environ- preventative strategy to consider. • Policies and Procedures. One of the key ments. Evacuation sites that can be elements of an effective response is to • Workforce. The issue of our dwindling easily accessed and utilized for direct support workforce becomes have policies and procedures that extended periods of time are being clearly delineate and require specific even more critical in disaster situa- designed in Louisiana and should be tions. Response plans should include responses by our developmental dis- a part of any effective plan. ability state and local governmental carefully planned disaster pay sched- entities, providers, support coordina- • Tracking System. An efficient data sys- ules as well as recruitment and reten- tors, family members and advocacy tem that can track and locate people tion strategies when the workforce agencies. Every stakeholder in the sys- for reconnection to family and ser- leaves the area or is unable or unwill- tem must take responsibility for some vices is essential to a viable, success- ing to remain in an evacuation site. part of the response effort in order for ful plan. We are working to develop an innovative tracking system that This list is not all-inclusive; it is just an it to be effective. As we have moved overview of those elements we found forward in our recovery phase, we di- will track people from place to place in a non-intrusive manner and will critical based on our experiences. rected a statewide effort of individuals with disabilities, family members, work for those that have limited com- providers, advocates and state em- munication. Conclusion ployees to re-vamp our disaster strate- • Repatriation Options. The ability to It is important to note that this article gies by utilizing our “lessons learned.” have emergency contingency plans does not refer to the damaging winds or These groups have developed best for community based options in time extensive flooding that were part of this practices manuals for providers and of disaster must be addressed. It is particular disaster. Louisiana’s disaster case managers. They also developed a critical to have access to emergency really occurred because of the destruc- “Take and Go Emergency Booklet” for waiver or other community living op- tion of infrastructure. Such destruction people with disabilities and their fami- tions so that people can utilize those could happen anywhere and from a num- lies. We revised our statewide agency when family and community support ber of causes. Our developmental dis- procedures to include all the things we systems disintegrate in the face of di- abilities services system sustained signifi- learned about the many failures in saster. The lack of those options will cant impact, and we are working to communication systems, tracking sys- ultimately mean unnecessary utiliza- rebuild it and improve our disaster re- tems, records management, billing tion of nursing homes and large sponse, in the midst of a long-term care systems, rules and regulations. Addi- facilities. Additionally, the ever- reform effort. While these challenges tionally, revisions of our new response expanding barrier of accessible and seem overwhelming, Louisiana is fortu- system have required increased moni- affordable housing is an issue that nate to have a committed group of stake- toring of individual and provider di- must be faced if we are to be able to holders that includes public and private saster preparations in order to assure have a realistic plan for moving providers, self-advocates, advocacy that new procedures have incorpo- people back into disaster areas which groups, and dedicated state employees. rated newly established best practices. have sustained significant loss of We know that they can be relied on to • Communication Systems. It is critical housing. work with us to not only rebuild our sys- that the response plan include proce- • Location of Residential Settings. Our tem, but also to make it stronger and dures which will provide immediate disaster planning now includes a more responsive to people. communication methods that are critical review of the areas in which practical and effective for stakehold- state funded public and private resi- Kathy Kliebert is Assistant Secretary of the ers. We established new communica- dential settings are located in order Office for Citizens with Developmental tion strategies to include more of the to assure not only safe evacuation, Disabilities, Baton Rouge, Louisiana. She satellite, Internet and text-messaging but also health and safety in the after- may be reached at 225/342-0095 or systems since these worked well dur- math. This planning resulted in the firstname.lastname@example.org. ing the storms. conversion of a large developmental 30 Profile Improving Disaster Preparedness: Strategies from California’s Disability Services System by Carol Risley There is no single best approach to are licensed facilities, at least 22,000 • California has just completed a com- addressing the needs of people with dis- people receive supported or independent prehensive review of existing emer- abilities in preparing for, responding to, living services, thus they may not be with gency preparedness plans in the devel- and recovering from a disaster. There is other people 24 hours a day. For those opmental services system and identi- much to do because of the historic lack individuals there is an urgent need to fied many best practices as well as ar- of attention – so much that the task become personally prepared for an emer- eas that require additional attention. often appears overwhelming, leading to gency and able to either support them- Working with the regional centers, lack of any action at all. And the larger selves in a shelter-in-place situation or to best practices will be shared among the population, the more daunting the transport to a shelter. For those living in centers and providers, and guidance task. Nonetheless, it is not a matter of if licensed facilities, there is a need for will be developed to assure plans a disaster will occur, but when. Thus, it’s those facilities to ensure the prepared- address all key areas needed to maxi- not a question of what to do, but rather ness of those they serve and their staff. mize coordination, readiness, re- the need is to begin to do something to In response to this range of needs, sponse, and recovery. Because of the help people prepare themselves, and to California is pursing several strategies: vast size and population of California help existing emergency response sys- it is essential that plans address coor- • To improve communications within dination between centers in the event tems to modify themselves to meet the and between the state and local one or more centers are rendered needs of people with disabilities in our services systems, the developmental inoperable, so others can assume communities and states. services system is becoming part of responsibility for supporting the con- an existing automatic emergency alert sumers during the recovery process. system currently in place for public health emergencies. This system will • Working with the California Office of To improve communications within provide for timely and updated emer- Emergency Services, for the first time gency/disaster alerts, both from state consumers with physical, sensory and and between the state and local and local support systems. A key cognitive disabilities are becoming benefit in joining this network is that part of the Standardized Emergency services systems, the developmental it will allow for alerts coming down Management System (SEMS) working from the State to local entities, but committees, thus integrating their services system is becoming part of more importantly for alerts to be needs and input into existing plan- issued from local government to the ning and response efforts. an existing automatic emergency network of non-profit regional cen- On the local level, many consumer ters, thus incorporating the develop- alert system currently in place for mental services system into local organizations, regional centers, and pro- viders are engaged in a variety of activi- emergency response systems. As all public health emergencies. emergencies are local, integration of ties addressing the eventual emergency/ disaster that will impact their lives. Re- the system of services supporting gional centers, in cooperation with local people with disabilities will have the first responders, are sponsoring emer- effect of bringing more attention to gency preparedness meetings for con- California’s Department of Develop- their needs in local planning and re- sumers and providers, thus bringing the mental Services provides supports and sponse activities. Further, the system emergency response systems into conver- services to 212,000 people with develop- is adding communications technology sation with people with disabilities. As mental disabilities, all of whom (but for to enhance the effectiveness of com- available and accessible transportation is 2,800) live and receive services and sup- munications when traditional systems a key to evacuation in any disaster, some ports in a wide range of community set- are not functioning. In addition to cities are conducting planning meetings tings. Each person has a service coordina- land lines, cell phones, and e-mail, with people with disabilities to better tor provided through a network of non- California is adding satellite tele- understand their needs and identify profit regional centers, along with direct phones and will be exploring options available transit resources. These conver- service providers to support them. While for use of HAM radio networks. sations have enlightened both sides as to some of the services and support settings Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Profile 31 what might be expected from traditional tion in an emergency. Plans must be Resources for Information transit systems and promoted the devel- developed by and with consumers to The following may be useful for further opment of creative strategies. Use of be realistic and ensure ownership, transit system data to identify riders is and then they must be practiced so information about disaster preparedness one potential way to address the concept they become routine. in relation to people with disabilities: of registries for people with disabilities • The availability of “to go” kits to • Disaster Resources for People with without having to develop new, costly assist with sheltering-in-place or shel- Disabilities and Emergency Managers and controversial systems. Some provid- tering elsewhere for people living in ers, as part of their service design, are (www.jik.com/disaster.html).This Web independent situations. History discussing emergency preparedness and site from disability policy consultant June shows that staff who normally sup- assisting consumers to better under- port consumers often will not be Isaacson Kailes provides extensive re- stand the issues and how to prepare. available or able to provide supports sources on individual preparedness; legal Areas in which further widespread during an emergency situation, thus issues and disability rights; planning, work is needed include the following: consumers may be on their own for policy, and training; and the role of com- • Development and distribution of some period of time. Consumers munity organizations. It also includes a consumer-friendly written and video should have kits with essential sup- working document on creation of state materials for use in thinking about plies and information about the indi- and creating a personal plan to en- vidual and their needs; the kits will level coordinator positions for facilitating sure safety and security, and to assist serve as tools to maintain their inclusion of people with disabilities and consumers during an emergency or health and safety and enhance the disability organizations in all areas of disaster. Implementation of con- likelihood of appropriate treatment emergency planning and response. sumer readiness planning needs to by emergency personnel. One of the greatest barriers in assuring these • PrepareNow.Org (www.preparenow.org). occur with assistance from peers, kits meet the needs of consumers is This Web site of PrepareNow Partners, an related to maintaining an up-to-date, alliance of San Francisco Bay Area groups adequate supply of necessary phar- supporting the needs of vulnerable people Working with the California maceuticals. Most consumers use in disaster preparedness/response, has an Medicaid or Medicare to address information library of practical tips in Office of Emergency Services, for their medical needs and California English and Spanish for use by service pro- needs to explore how that system can the first time consumers with become more flexible and allow for viders, advocates, individuals and families. these essential kit items. It includes tips for people with specific physical, sensory, and cognitive This is by no means a comprehensive types of disabilities. report on all the activities being pursued • Gender and Disaster Network (www. disabilities are becoming part of at many levels to enhance the readiness, gdnonline.org). This Web site contains survivability, and recovery for people the Standardized Emergency with disabilities when the next emer- extensive international resources on the experiences of women and girls in disas- gency hits California. It is, however, an Management System (SEMS) indication that the issue has become a ters, ways in which they often experience priority, and with continued consumer additional vulnerability (including gen- working committees. leadership and support from the service der-based violence), and gender inequal- system will become part of our way of ity in disaster planning and recovery. It life, not just remembered after each also includes stories of women’s leader- event occurs. families, service coordinators, advo- ship in recovery efforts. cates, service providers, and friends • National Organization on Disability Carol Risley is Chief of the Department of so that each person has a personal Developmental Services, Office of Human Emergency Preparedness Initiative emergency preparedness plan. It is Rights and Advocacy Services, Sacramento, (www. nod.org/emergency; 202/293- not enough to simply gather and dis- California. She may be reached at 916/ 5960). The Web site of this N.O.D. initiative tribute commercially prepared mate- 654-1888 or email@example.com. rials about emergency planning, has extensive resources for people with hang them on the refrigerator and ex- disabilities, community leaders, emer- pect understanding and implementa- gency managers/planners, and disability service providers. 32 Profile Establishing Information-Sharing Partnerships: The Connecticut Approach by Daniel A. Micari and Dennis J. Mitchell The events of September 11, 2001 emergency planning efforts. Registries dences and day programs operated or focused public attention on existing are also used to alert citizens of impend- funded by DMR. The plan has been tested emergency preparedness, response, and ing emergencies. Additionally, emergency during local, state and federal emergency recovery practices. Government entities responders use registries to identify and management exercises. Some key compo- across the country were asked to review, prioritize emergency service efforts, such nents of it are: and if necessary, develop and/or revise as evacuation, transportation, sheltering, • Emergency Individual Fact Sheet with their response to a catastrophic event. In and health care during and following a di- critical information about the person, Connecticut, the governor asked each saster. Community emergency manage- should they need to be evacuated and/ state agency to develop comprehensive ment personnel in Connecticut consider or relocated. It includes the names and plans to address such events. such registries an extremely useful tool. addresses of the individual, their phy- The Connecticut Department of Men- sician, and their pharmacy; as well as tal Retardation (DMR) provides services critical dietary, medical and other in- and supports to over 19,000 individuals formation. In addition, a Medication Innovative and balanced strategies and their families through a network of Administration Record (e.g., Kardex) public and private providers. DMR real- is transported with the individual at that respect the individual’s right to ized early on that our support role, in the the time of relocation. event of an emergency, could include the • Individual Identification Badge to be privacy, while addressing their needs sharing of clients’ Protected Health Infor- attached to the individual’s clothing. It mation with state and municipal emer- is a reduced copy of the Emergency in a time of crisis, can be arrived at. gency response personnel. Additionally, Individual Fact Sheet with the person’s and perhaps more importantly, it would photograph. The badge contains infor- be essential for state and local emergency mation necessary to insure their safety responders to have access to such infor- should they be in the care of others People involved in emergency pre- mation prior to an emergency event. who do not know them. paredness and response must appreciate Emergency management officials’ ability the likelihood that many community to access and analyze this information • DMR’s Emergency Management Data- members may have cognitive disabilities would be essential to the development base containing essential emergency that might diminish their ability to un- of local emergency plans that would be information regarding clients of the derstand or respond to an emergency. responsive to the needs of all citizens. department and service providers. It is With so many community members To bridge any information gaps about a means for DMR to establish and having a disability that may impact their the special needs of our clientele in an maintain operational communications ability to independently execute appro- emergency, DMR and DEMHS estab- and continual access to vital informa- priate self-preservation actions, planning lished a collaborative relationship in tion during a widespread emergency or for emergencies and their aftermath is a 2002. Since then, DMR has participated significant disaster that could threaten challenging undertaking. In support of in over a dozen DEMHS emergency drills the health and safety of those we serve. this effort, many of Connecticut’s 169 associated with nuclear safety, homeland It is updated monthly, and certain towns, supported by the state’s Depart- security, and natural disasters. At each, information shared monthly with ment of Emergency Management and DMR brings to the attention of state, lo- DEMHS, who shares it with municipal Homeland Security (DEMHS), have de- cal, and/or federal emergency personnel emergency management directors. veloped or are considering developing a the emergency management needs of the Additionally, DMR, with the support Special Needs Registry. clients of the department. Additionally, a of DEMHS, has surveyed municipal emer- A Special Needs Registry represents a DMR Emergency Management Liaison gency management directors as to what method whereby people indicating their Team is continually present at the information about people they might need for special support during an emer- DEMHS Emergency Operations Center need to plan for and execute emergency gency voluntarily list themselves, inform- during emergency management events. evacuation and relocation. Survey results ing the local emergency authority of their Also in 2002, DMR developed a Spe- will help shape information release forms presence. Towns employ such registries cial Operations Plan for Emergency Relo- to be signed by department clientele, as an information source to support pre- cation for persons served in group resi- authorizing DMR to release information [Micari & Mitchell, continued on page 34] Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Profile 33 Preparing for Pandemic Flu: A Minneapolis Congregation’s First Steps by Bill Weir In 2006, the First Unitarian Society of pare for a possible bird flu pandemic. Circles regarding how they can best Minneapolis created a standing commit- It is also a place to share articles and work with our ministers in reaching tee on emergency preparedness, which I information about pandemic influ- out to help affected members of the chair. The committee believes that the enza. (The list sign-up is at http:// congregation if a pandemic comes. principal threat for which most people lists.muusja.org/mailman/listinfo/ Caring Circles is a group of people are not prepared is a pandemic influenza birdflu). who are an adjunct to the minister in outbreak, commonly called “bird flu” or • One of our members, Peter Raynor providing visits, phone calls, cards, “avian influenza.” Because of this con- who is also a professor of Public transportation, and so on at times of cern, the task force has two main goals: Health, has drafted a Pandemic Flu loss and other types of life chal- 1) to protect the people in our First Uni- Planning Overview, which continues lenges. tarian Society community from the risk to be reviewed, updated and circu- • We share information with the con- of bird flu, and 2) to explore ways to lated for comment within our com- gregation on an ongoing basis about serve our members in the event of a bird mittee and to interested others via the simple steps people can take to keep flu pandemic. e-mail discussion list. The overview themselves and their neighbors in the identifies steps the congregation congregation healthy during any cold could take at each of five phases: 1) and flu season, as well as year-round. pre-pandemic (now), 2) circulating We, for example, include in our The committee believes that the animal virus in state/region with po- congregation newsletter reminders to tential human risk, 3) single or lim- prevent the spread of colds and flu principal threat for which most ited cases in humans in state or region by covering your cough, washing with no human-to-human transmis- hands regularly and thoroughly, and people are not prepared is a sion, 4) single or limited cases in hu- so forth. mans in the U.S. with low human-to- pandemic influenza outbreak. human transmission, and 5) wide- It would take much more space to spread cases anywhere with high share the many more details on how human-to-human transmission. congregations and their members with and without disabilities can prepare for • Members of our committee and con- and respond to a possible pandemic. What is the threat? If pandemic flu gregation have participated in emer- We’d invite people to visit the resources develops, the Minnesota Department of gency preparedness activities in the posted on our Bird Flu E-mail Discus- Health projection in a worst-case sce- wider community. For instance, we sion List and to consider joining the nario is that 1.25 million Minnesotans had a representative on the statewide discussion (http://lists.muusja.org/ could become ill, with 20,000 deaths advisory group for CodeReady, the mailman/listinfo/birdflu). We all hope a (Hull, 2006). The number of sick would public information campaign rolled severe pandemic never comes, but ex- significantly overwhelm the healthcare out in May 2007 by the State and its pert scientists, especially epidemiolo- system. In light of that, our key concern many private-sector partners to im- gists, are concerned that it may come is how to best help our congregation of prove readiness to cope with all haz- soon and may be devastating, especially people with and without disabilities ards, including pandemic flu, to those who fail to prepare. become adequately prepared, and to throughout the state (for more infor- encourage preparedness within our References mation see www.codeready.org). An- denomination. Among the steps we’ve Hull, Harry. (2006). Avian flu is coming! Minnesota Medicine, 89. other member attended a conference Retrieved 5/29/07 from www.mmaonline.net/publications/ taken toward that end are the following: MNMed2006/January/avian-Hull.htm. titled “The Church and Pandemic Pre- • Our committee originated a Bird Flu paredness” hosted by Central E-mail Discussion List that has been Lutheran Church in Minneapolis, Bill Weir is a member of First Unitarian publicized throughout our denomi- and reported back to our committee Society of Minneapolis and chair of its nation as a place where participants about the information shared. Committee on Emergency Preparedness. can discuss how congregations and He is a retired minister with a Masters in • Our committee has been in conversa- individual members can better pre- Healthcare Administration. He may be tion with our congregation’s Caring reached at firstname.lastname@example.org. Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. 34 Continuation [Ridgeway, continued from page 1] codes to see if emergency action plans are required and what ele- families what they needed. They were all hated to use day programs, but it was ments are necessary. ages, from grade school to senior citi- what we had, and sometimes we have to 4. Fact Sheet on Obtaining and Using Employee Medical Information as Part of Emergency Evacuation Procedures, http://www.eeoc.gov/facts/ zens. They numbered 65. Twenty-five use what’s out there, especially during evacuation.html. were from group homes and apartments, this emergency.) The church is not a and ten staff and their families were home, but we are trying to embrace our Adapted and reprinted with permission from St. Bernard Parish in New Orleans. new neighbors in our community and from “Employers’ Guide to Including In that meeting I saw something happen advocate for them to have their homes Employees with Disabilities in Emergency that I don’t know if I’ll ever see again. In back and support them in their steps to Evacuation Plans,” by Linda Carter Batiste a meeting of 24-28 people all represent- the rebuilding of their lives. and Beth Loy, published by the Job Accom- ing their own version of government, While it was most certainly tragic modation Network (JAN), West Virginia and members of the local and state that so many lost homes, jobs, even University, Morgantown. Retrieved June 6, People First groups (who actually called loved ones to the storm, what was sense- 2007 from www.jan.wvu.edu/media/ the meeting), the red tape book was less, irresponsible, even on the brink of emergency.html. A checklist for use by thrown over in the corner. We focused on torturous, was the poor response from employers can be found with the online the immediate needs with one mind and officials because of bureaucratic red version of the report. The report was funded voice. I’m glad the Good Lord let me live tape. Today I call on every member of under a contract supported by the Office of long enough to see that. Congress to go forth and call for a dras- Disability Employment Policy of the U.S. After all the assignments were divided tic reduction in red tape in getting help Department of Labor. up, everyone chipped in from their de- to the people who need it when they partments, offering computers, clothes, need it and where they need it, without [Micari & Mitchell, continued from page 32] information on loved ones, beds, cigars/ the breakdown of communications and about their emergency management cigarettes, jobs, apartments and homes, delay of help. Let’s not let another needs to local and state emergency per- fax machines, copiers, and e-mail access. American die waiting. sonnel. This form will indicate the infor- After that day we met in small meetings, mation will be updated at least monthly but still kept working on welcoming our Jeff Ridgeway is Past President of People by DMR, and that recipients of the infor- new friends to the community and sup- First of Alabama, and originally wrote this mation must keep it secure and ensure it porting them to begin to rebuild their article in December 2005. He can be is used only for the purpose of emergency lives. Boxes began to arrive with clothes, reached at 251/414-5364 or by e-mail at planning and response. Status of indi- shoes, school supplies for the kids, and email@example.com. vidual release form information will be much more. Ladies from the community maintained by DMR in the emergency brought food. A van was loaned to the management database. [Batiste & Loy, continued from page 13] evacuees for transportation to places like We, as service providers, must actively Wal-Mart to get the things they needed periodically. In addition, a system for reporting new hazards and accommoda- ensure the emergency management needs right away. of those we serve are addressed. This in- I met a lot of the survivors. One par- tion needs should be developed; a rela- tionship with local fire, police, and cludes establishing partnership and infor- ticular man named Joe, “Papa Joe” every- mation-sharing relationships between body called him, stands out. People First HazMat departments should be main- tained; and new employees should be people with special emergency manage- had put together a survey to find out just ment needs and government entities. We what folks needed, both immediate and made aware of the plan. Finally, all ac- commodation equipment used in emer- have found that innovative and balanced long-term. I noticed that on the “want” strategies that respect the individual’s question he wanted a brown hat with a gency evacuation should be inspected and maintained in proper working order. right to privacy, while addressing their wide brim, so I asked Vicki to stop by a needs in a time of crisis, can be arrived at western store on the way home. The next Notes through ongoing dialogue between day Papa Joe got his brown hat with a 1. Title I of the ADA applies to private employers with 15 or more em- ployees, state and local government employers, employment agencies, people with disabilities, service providers, wide brim. How could I not make sure he labor unions, and joint labor-management committees. Federal em- and emergency management personnel. ployers are covered by the Rehabilitation Act of 1973. Both laws pro- got his hat – this man had just lost every- hibit employers from discriminating against people with disabilities in thing he had except the clothes on his regard to any employment practices or terms, conditions, and privileges of employment. Daniel A. Micari is Director of the Division of back. The smile on his face when he 2. Title I of the ADA requires employers to provide reasonable accom- Quality Management, and Statewide Emer- opened up that box was worth 10 million modations to the known limitations of employees with disabilities. For additional information on reasonable accommodation, see gency Management Director, for DMR. He bucks to me. Enforcement Guidance: Reasonable Accommodation and Undue may be reached at 860/418-6081 or daniel. Hardship Under the ADA at http://www.eeoc.gov/policy/docs/ When I left, the kids were in school, accommodation.html. firstname.lastname@example.org. Dennis J. Mitchell is some of the people were in day pro- 3. The OSH Act does not require that all employers have emergency Statewide Emergency Management Coordina- action plans; however, the Act does require that employers from par- grams, and some had jobs so they didn’t ticular industries have emergency action plans (e.g., metal, chemical, tor for DMR. He is at 860/418-6105 or and grain handling facilities). Employers must check particular industry have to sit doing nothing. (We really email@example.com. Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Continuation 35 [Styron, continued from page 3] same opportunity to survive natural • Ensure comprehensive medical Additional Findings and human-made disasters. approaches that address the health As DHS and others have found, while • Emergency workers can be provided care and medical needs of individu- most Emergency Operation Plans the tools, equipment, and training to als with disabilities across the life- (EOPs) make scattered references to maintain the independence of per- span of an emergency event. people with disabilities, sorely lacking is sons with disabilities in an emer- any consistency of approach, depth of gency event. planning, or evidence of safeguards and Conclusion • Persons with disabilities can develop effective implementation. Most jurisdic- One of the most important roles of gov- a realistic and successful emergency tions significantly underestimate the ernment is to protect its citizenry from plan through educating themselves amount of advance planning and coor- harm, including helping people prepare and emergency workers on how to dination that is required to effectively for and respond to emergencies. Making best help them during an emergency. address the integration and accommo- local, state, and federal government dation of individuals with disabilities. A • All transportation, reception emergency preparedness and response 2004 survey of emergency managers centers, shelters, and medical ser- programs accessible to people with dis- conducted by EPI revealed that 76% do vices can be accessible for all people, abilities is a critical part of this responsi- not have a paid expert on staff to advise and all people can maintain dignity bility. People with disabilities through- on special needs issues and 73% said and self-respect. out the country will continue to risk that no funding had been received to Some recommendations for imple- suffering and death in disproportionate address and plan for special needs issues menting these principles include: numbers unless we dramatically im- (N.O.D. & Harris Interactive, 2004). The • Increase the rate of participation of prove disability-related emergency plan- 2004 survey also revealed that 42% of people with disabilities in emergency ning processes and readiness. emergency managers had preparedness planning. materials for people with disabilities; Notes: • Increase the rate of participation of however, only 16% of those 42% had 1 Special Needs Assessment 4 Katrina Evacuee (SNAKE) Report and people with disabilities in emergency findings are available at www.nod.org/emergency. those same educational materials avail- 2 The NRP/NIMS is currently under review and special needs are being preparedness, response, and recovery able in an accessible format. In addition, fully incorporated into these guidance documents. drills and exercises. 3 The Federal Communications Commission has established the Com- SNAKE team findings revealed that mercial Mobile Service Alert Advisory Committee (CMSAAC) to ad- 85.7% of community-based organiza- • Direct DHS funding to promote the dress these issues (http://www.fcc.gov/pshs/cmsaac.html). tions that provided services to people full integration of people with dis- abilities in all aspects of emergency References: with disabilities and seniors in areas National Organization on Disability (N.O.D.) & Harris Interactive affected by Hurricane Katrina did not preparedness, response and recovery. (November 30, 2004). Emergency preparedness survey: Final report. Washington, D.C.: N.O.D. Retrieved July 25, 2007 from www.nod.org/ know how to access their emergency • Ensure that during an emergency, resources/harris2004/episurvey_rpt.pdf. management system prior to the storm. Telecommunications Relay Services U.S. Department of Homeland Security & U.S. Department of Trans- portation (June 16, 2006). Nationwide plan review phase 2 report. Although strides are being made to- (TRS) personnel, Public Safety Available at http://www.disabilitypreparedness.gov/comm/ npr_phase2.pdf. ward fully integrating people with dis- Answering Point (PSAP) personnel, abilities in community life, substantial and captioners can travel to and from improvement is necessary to integrate their designated facilities to provide Hilary Styron is Director of the Emergency people with disabilities in emergency continuity of services for persons Preparedness Initiative of the National planning and readiness. with hearing and speech disabilities. Organization on Disability, Washington, • Integrate the needs of individuals D.C. She may be reached at 202/293-5960 with disabilities into the National or firstname.lastname@example.org. Additional information Principles for Improvement regarding the content of this article is Response Plan (NRP) and National To increase the effectiveness of emer- Incident Management System available by visiting the EPI Web site at gency preparedness in relation to per- (NIMS).2 www.nod.org/emergency. For specific sons with disabilities, individuals who information or to speak with someone • Coordinate evidence-based federal re- have disabilities, their families, service about issues surrounding special needs search into the effectiveness of audio, providers, and advocates, as well as their preparedness planning in your community, visual, and/or tactile protocols and communities as a whole and govern- please contact EPI at 202/293-5960. technologies related to emergency ment leaders at all levels, must recognize preparedness, alerting, warning, and and act upon the following principles: response for individuals with dis- • Through personal and community abilities.3 planning, all people must have the Retrieved from the Web site of the Institute on Community Integration, University of Minnesota (http://ici.umn.edu/products/impact/201/default.html). Citation: Moseley, C., Salmi, P., Johnstone, C. & Gaylord, V. (Eds.). (Spring/Summer 2007). Impact: Feature Issue on Disaster Preparedness and People with Disabilities, 20(1). [Minneapolis: University of Minnesota, Institute on Community Integration]. Non-Proﬁt Org Institute on Community Integration U.S. Postage 109 Pattee Hall PAID 150 Pillsbury Drive se Minneapolis, MN Minneapolis, MN 55455 Permit No. 155 Address Service Requested In This Issue... Feature Issue on Disaster Preparedness and People with Disabilities • Including People with Disabilities in Emergency Volume 20 · Number 1 · Spring/Summer 2007 Managing Editor: Vicki Gaylord Planning: How Are We Doing? Issue Editors: • Nobody Left Behind: Consumer Experiences of Chas Moseley, National Association of State Directors of Developmental Disabilities Services, Emergency and Disaster Alexandria, Virginia Patricia Salmi, Research and Training Center on • Experiences of Direct Support Professionals Community Living, Institute on Community Inte- gration, University of Minnesota, Minneapolis During Hurricanes Katrina and Rita Christopher Johnstone, Global Resource Center, Institute on Community Integration, University • Serving and Protecting: The Role of Disability and of Minnesota, Minneapolis Aging Organizations in Disaster Planning Impact is published quarterly by the Institute on Community Integration (UCEDD), and the Research and Training Center on Community Living, • Personal Emergency Preparedness: Who Are Your College of Education and Human Development, People? University of Minnesota. This issue was supported, in part, by Grant #90DD0579 from the Administra- tion on Developmental Disabilities, US Department • Congregations Who Care - Prepare: Preparing Faith of Health and Human Services; and Grant #H133B031116 from the National Institute on Communities to Assist During Disasters Disability and Rehabilitation Research, US Department of Education. • Emergency preparedness tools for individuals with The opinions expressed are those of the authors disabilities, families, employers, service providers and do not necessarily reﬂect the views of the Institute, Center, University, or their funding sources. For additional copies or information contact: • Stories, strategies, and resources from around the Institute on Community Integration, University of country Minnesota, 109 Pattee Hall, 150 Pillsbury Dr. SE, Minneapolis, MN 55455 • 612/624-4512 email@example.com • http://ici.umn.edu. Impact is available in alternative formats upon request. The University of Minnesota is an equal You May be Wondering Why...you’ve received Impact. We mail each issue to our regular opportunity employer and educator. subscribers plus others whom we think might be interested. If you’d like to receive every issue of Impact at no charge, call 612/624-4512 or e-mail us at firstname.lastname@example.org; give us your name, address, e-mail and phone number, and let us know whether you’d like a print copy or e-mail version. Impact is also published on the Web at http://ici.umn.edu/products/ newsletters.html.
Pages to are hidden for
"201 _08-34_"Please download to view full document