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									                                                                                                                   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 ( 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.
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
    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 ( 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- 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
                                                 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
                                                 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
                                                                          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 ( 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 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 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
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 ( 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/
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
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

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

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 ( 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                                                     ( 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       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            available at
                                                                                          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
        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 ( 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:
 • 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) (                 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
 • 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 ( 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-
  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 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 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               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                                              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 ( 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, 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 (                   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
   tain American Red Cross training                  son, with and without a disability, can       Adapted and reprinted with permission
   ( 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

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-
( 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       ( 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               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 (               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- 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 ( 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
                                                     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-
                                                     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
      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
                                                     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
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 ( 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
• Readability of the information.                                                                                             Systems ( 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                                     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.
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                                       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@                                                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-
    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,                                                                                    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 ( 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.              
Retrieved from the Web site of the Institute on Community Integration, University of Minnesota ( 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 ( 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 ( 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 (
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          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 Patricia Salmi is a Research      ner programs.
extensive references and additional            Associate with the Research and Training
                                                                                              • (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                                           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 ( 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                

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                                                        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
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 ( 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 ( 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
  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 ( 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                                                 ( 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 (
       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, 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.; 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
       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 ( 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                                                 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 (
   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 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
   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
   Retrieved from the Web site of the Institute on Community Integration, University of Minnesota ( 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,
      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
      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             
                                                                                                                                                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
          When I left, the kids were in school,                      accommodation.html.                                               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                                                                                           
     Retrieved from the Web site of the Institute on Community Integration, University of Minnesota ( 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
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 (

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
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
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 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                                             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 ( 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].
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Minneapolis, MN 55455                                                                                                        Permit No. 155

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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
                                                                                                  Impact is available in alternative formats upon
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