Disaster%20Preparedness%20and%20Response%20for%20Persons%20with%20Mobility%20Impairments:%20Results%20of%20the%20Nobody%20Left%20Behind%20Project

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Disaster Preparedness and Response for Persons
with Mobility Impairments Results of the Nobody
Left Behind Project

• Michael H. Fox, Sc.D., Glen W. White, Ph.D.,
• Catherine Rooney, M.A., Jennifer Rowland, Ph.D.,
  P.T.
• Research and Training Center on Independent
• Living at the University of Kansas
• Governors Public Health Conference
• Wichita, Kansas
• April 11, 2006

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Nobody Left Behind

• http//www.nobodyleftbehind2.org
• Three year grant, TS-08040, awarded the KU
  RTC/IL by the Association for Teachers of
  Preventive Medicine and the Centers for Disease
  Control and Prevention
• Glen White, Ph.D., KU, P.I.
• Michael Fox, Sc.D., KUMC, Co-P.I.
• October, 2002 September, 2005
• AIM To understand county level disaster
  preparedness and response around needs of persons
  with mobility impairments

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Persons with Disabilities in the U.S.

• 50 million people with a self reported disability
  represent 19 of the 257 million people gt age 5
  in the civilian non-institutionalized U.S.
  population
• Within this population, Census 2000 found
• 9.3 million Americans with a sensory disability
  involving sight or hearing.
• 21.2 million with a condition limiting basic
  physical activities, such as walking, climbing
  stairs, reaching, lifting, or carrying.
• 18.2 million of those 16 and older with a
  condition that made it difficult to go outside
  the home.

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Nobody Left BehindThe Nature of the Problem

• Typically, disaster preparedness and emergency
  response systems are designed for non-disabled
  persons, for whom escape or rescue involves
  walking or running.
• In addition, many plans do not appear to
  specifically address the transition needs back to
  pre-disaster conditions that are required for
  persons with mobility impairments.

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The True Scope of the Issue

• 90 of presidential declared disasters result
  from natural phenomena in which flooding was a
  major component
• Annually, the U.S. averages 100,000 thunderstorms
  
• Galveston Texas hurricane in 1900 killed more
  than 6,000. Death toll from Katrina still
  unknown, but exceeds 2,000.
• Average of 22 killer tornados each year.
• About 13,000 earthquakes of various magnitudes in
  the U.S. each year

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Katrina Federal Disaster Funds - 62.5 Billion
Washington Post, 9/9,2005
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Cost to People with Disabilities
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Cost to People with Disabilities

• Special Needs Assessment 4 Katrina (SNAKE Teams)
  National Organization on Disability (NOD)
• Recommendations
• Disability and aging organizations involved in
  the Katrina response effort report their budgets
  are depleted.
• No use or under-use of disability and aging
  organizations
• Need for participation of disability groups in
  planning process
• Emergency information needs to be in accessible
  format

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Nobody Left BehindResearch Activities Overview

• Focus Area 1
• County Programs, Policy, and Practice
• Focus Area 2
• Assessing Risk
• Focus Area 3
• Assurance and Policy Development

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Focus Area 1 COUNTY PROGRAMS, POLICY, AND
PRACTICE

• Objective
• To determine whether counties that have
  experienced a disaster during 1998 - 2003 have
  systems of workplace, home, and community
  disaster preparedness and emergency response in
  place for residents with mobility impairments.

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Focus Area 1 COUNTY PROGRAMS, POLICY, AND
PRACTICE

• Research Questions
• Have disasters facilitated changes in disaster
  preparedness and emergency response policies and
  practices for persons with mobility impairments?
  If so, how?
• Has the disaster preparedness and emergency
  response planning process included community
  stakeholders representing people with
  disabilities? If so, what has been their
  involvement? With what outcomes?

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Focus Area 2 ASSESSING RISK

• Objective
• To evaluate surveillance systems in place at the
  county level that can identify morbidity and
  mortality frequency and prevalence for persons
  with mobility impairments exposed to a disaster

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Focus Area 2 ASSESSING RISK

• Research Questions
• Are counties able to assess prevalence of persons
  with mobility impairments who reside or work in
  their jurisdictions and are at risk of disaster
  exposure (calculating the denominator)?

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Focus Area 2 ASSESSING RISK

• Research Questions (continued)
• Are counties able to determine how many persons
  with mobility impairments are affected by
  disasters?
• Among counties that have surveillance systems in
  place, what are prevalence rates of disaster
  exposure for persons with mobility impairments,
  and what factors appear to influence these
  rates?

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Focus Area 3 ASSURANCE AND POLICY DEVELOPMENT

• Objective
• To recommend modifications to county disaster
  coordinating agencies to address the health,
  safety, and survival needs of people with
  mobility impairments

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Focus Area 3 ASSURANCE AND POLICY DEVELOPMENT

• Research Questions
• What surveillance systems appear most effective
  in assessing risk for people with mobility
  impairments exposed to disasters?
• How can counties use surveillance systems to
  better manage their risk for persons with
  mobility impairments?

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Focus Area 3 ASSURANCE AND POLICY DEVELOPMENT

• Research Questions (continued)
• What county policies, practices, or programs are
  exemplars of best practices that can be emulated
  by counties around the U.S.?
• How can these policies, practices, and programs
  be incorporated in county disaster plans?

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Nobody Left Behind- Methods

• Identify Federal Emergency Management Agency
  (FEMA) declared disasters between 1998 - 2003
• Select a random sample of 30 counties or
  equivalent units (i.e., boroughs, reservations,
  etc.) across each of the ten federal regions
• Interview these county emergency managers
• Evaluate their disaster plans in place at time of
  occurrence and more recently for actions
  targeting persons with mobility disabilities
• With assistance of national advisory panel,
  identify best practices
• Administer on-line consumer survey

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Nobody Left BehindMethodsWhat did we ask?

• Examples of survey questions
• Does your current emergency management plan have
  a protocol to assist people with mobility
  impairments during an emergency?
• To your knowledge, were people with mobility
  impairments included in the process of developing
  these protocols?
• If no written formal protocols exist to assist
  people with mobility impairments, to your
  knowledge what do emergency services personnel do
  to assist people with mobility impairments during
  an emergency?

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Representative County Selection

• Selection of state level disaster occurrences so
  that each of the ten federal regions is
  represented
• REGION I Connecticut, Maine, Massachusetts,
  New Hampshire,
• Rhode Island, Vermont.
• REGION II New York, New Jersey, Puerto Rico,
  Virgin Islands.
• REGION III Delaware, Maryland, Pennsylvania,
  Virginia, West
• Virginia, District of
  Columbia.
• REGION IV Alabama, Florida, Georgia, Kentucky,
  Mississippi,
• North Carolina, South
  Carolina, Tennessee.
• REGION V Illinois, Indiana, Michigan,
  Minnesota, Ohio,
• Wisconsin.
• REGION VI Arkansas, Louisiana, New Mexico,
  Oklahoma, Texas.
• REGION VII Iowa, Kansas, Missouri, Nebraska.
• REGION VIII Colorado, Montana, North Dakota,
  South Dakota,
• Utah, Wyoming.
• REGION IX Arizona, California, Hawaii, Nevada.
  
• REGION X Alaska, Oregon, Washington, Idaho.

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Summary Research Tables Corresponding to
Research Questions for Nobody Left Behind
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Research Questions 1 Have disasters facilitated
change for people with mobility impairments?

• Table 1. Reasons for Modifying County Disaster
  Plans
• Using Chi-squared tests, none of these 2x2
  relationships are statistically significant

N30 Revisions prompted by disaster? Revisions prompted by disaster? Revisions prompted by people with disabilities? Revisions prompted by people with disabilities? Revisions prompted by federal mandates? Revisions prompted by federal mandates? Revisions prompted by other concerns? Revisions prompted by other concerns?
County disaster plan revised since disaster? Yes No Yes No Yes No Yes No
Yes (n29) 27.6 72.4 6.9 93.1 58.6 41.4 6.9 93.1
No (n1) 0.0 100 0.0 100 0.0 100 0.0 100
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Research Questions 2 Were people with
disabilities included in the planning process?

• Four of the six best practice sites had people
  with disabilities included in the process. This
  question was only answered for six counties
  engaged in the planning process (Question 14)
• Of the total survey only 4 out of 30 sites (13)
  had people with disabilities included in the
  disaster planning process

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Research Question 3Are sites able to assess
prevalence based upon adequate surveillance?
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Table 2. Reported Surveillance of Counties Experiencing Disasters Counties Counties Frequencies Frequencies Data Validity
Measure Category Count
people with mobility impairments in county 13 lt 75 4(13) Database-5 Census-3 Estimate-5 Good Fair Poor
people with mobility impairments in county 13 300-400 2 (7) Database-5 Census-3 Estimate-5 Good Fair Poor
people with mobility impairments in county 13 3,000-10,000 6(20) Database-5 Census-3 Estimate-5 Good Fair Poor
people with mobility impairments in county 13 gt10,000 1(3) Database-5 Census-3 Estimate-5 Good Fair Poor
persons injured in disaster 30 30 None 27(90)
persons injured in disaster 30 30 lt100 1(3)
persons injured in disaster 30 30 100-300 1(3)
persons injured in disaster 30 30 10,000 1(3)
persons killed in disaster 30 30 None 26(87)
persons killed in disaster 30 30 1-5 3(10)
persons killed in disaster 30 30 2,749 1(3)
persons with mobility impairments killed 30 30 None 28(93)
persons with mobility impairments killed 30 30 1 1(3)
persons with mobility impairments killed 30 30 Unknown 1(3)
persons with mobility impairments rescued 30 30 None 17(57)
persons with mobility impairments rescued 30 30 2-15 4(13)
persons with mobility impairments rescued 30 30 25-100 4(13)
persons with mobility impairments rescued 30 30 gt100 5(16)
persons with mobility impairments rescued 30 30 Unknown 1(3)
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Research Questions 4 5 Were surveillance
systems in place that allowed estimates of
prevalence of people with mobility impairments at
risk in a disaster?

• No way to determine prevalence rates based upon
  surveillance systems in place.
• However, we may want to test this further with
  our site in Coffey County. Where there are
  accurate voluntary data registries, this measure
  could be possible.

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Research Question 6 Surveillance systems that
appear most effective possible best
practices.

• Six counties identified as possible best
  practices (out of 30) based upon two criteria
• Having in place guidelines for persons with
  disabilities and
• Identifying operating procedures in place that
  follow the guidelines
• Best practice sites included the following
  counties/jurisdictions Dubuque County, Iowa
  Brooklyn-New York City, New York Coffey County,
  Iowa Maricopa County, Arizona Norton City,
  Virginia Lincoln County, Nebraska.

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Table 3. Differences Between Disaster County
Sites Identified as Best Practices and All Other
Sites All mean differences were tested using
ANOVA and Mann-Whitney for between group
differences.
Disaster County Characteristic Best Practice Site (6) Other Disaster Site (24) Significance, p-value
Mean Total Population 571,266 217,711 .285
Area in square miles 2,248 2,436 .932
Persons per square miles 205 1,783 .575
urban area 67 58 .721
White 91 76 .097
Median household income 36,577 38,914 .568
above median income 33 29 .849
below poverty 13 14 .610
with Center for Independent Living 50 63 .429
persons with physical disability gt 5 8.4 9.7 .392
people with disabilities 5-64 years old 5.1 7.2 .141
people with disabilities gt64 years old 29.1 30.7 .551
t with employee who took FEMA course 17 42 .271
knowing how many people with disabilities live within district 100 29 .001
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Nobody Left BehindWhat did we find out?

• Findings - Emergency Managers
• People with disabilities either were not
  represented or had minimal representation in the
  emergency planning process
• The G197 FEMA Emergency Planning and Special
  Needs course pertaining to people with
  disabilities appears useful in increasing county
  awareness, though only 27 of county emergency
  managers reported completing it
• Only 20 of the emergency managers reported
  having specific guidelines in place to assist
  people with mobility impairments during
  emergencies

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Nobody Left BehindWhat did we find out?

• Findings - Emergency Managers
• Surveillance efforts to identify persons with
  mobility impairments are weak
• 57 of county managers did not know how many
  persons with mobility limitations lived within
  their jurisdiction
• Of those who claimed to know, most gave broad
  estimates based on unreliable sources
• 27 of counties used Census or self-reported
  registries to identify this figure more
  accurately

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Nobody Left BehindWhat did we find out?

• Findings- Emergency Managers
• 20 of emergency managers reported having
  specific guidelines in place to assist people
  with mobility impairments during emergencies
• Among 24 (80) of jurisdictions that did not
• 38 (9) identified transportation accommodations
  that they have in place
• 17 (4) identified accessible shelters and other
  educational programs that sought to reach out in
  some way to persons with disabilities

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Nobody Left BehindWhere are we now?

• Findings of Emergency Managers
• Among jurisdictions not having specific details
  or guidelines in place, all (24) told us that
  they were important to have
• Every persons life is important.
• I have never seen a publication that would
  address many of these impairments.
• We have it, just not in our particular
  plancovered in council on aging and human
  resource protocols.
• Its a fact of life. They are out there, they
  need assistance, and youve got to address it.

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Nobody Left BehindWhat did we find out?

• Findings - Emergency Managers
• 97 (29) of disaster management plans had been
  revised since the time of the county disaster we
  asked about
• But among these, only 2 (7) revised their plans
  owing to disability related concerns
• Other reasons driving revisions of plans
• Annual review (72)
• Federal mandates (59)
• State mandates (24)
• Disaster (28)
• Other factors (34)

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Nobody Left Behind - Findings

• Among jurisdictions not having specific
  guidelines in place (24), 5 (21) told us they
  were planning to develop them. 19 (79) told us
  they were not. Reasons why not
• If need is brought to our attention, we will
  accommodate
• We are trying to focus on special needs as a
  whole
• It is covered in other plans
• We dont need to be any more specific than we
  already are..
• Confidentiality issues limited local
  authority
• We are overwhelmed with the demands of Homeland
  Security
• My office is only staffed by one volunteer.

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Nobody Left Behind Findings

• Sites reporting no specific guidelines stated the
  following resources were needed to develop them
• 67 financial resources
• 33 knowledgeable and trained personnel
• 17 greater education for the public
• 25 a FEMA/State/or County mandate
• Among reporting sites, who told us they were
  planning to develop the guidelines
• One told us the idea originated with our
  interview, another started with discussions of
  the needs of non-English speaking residents, one
  mentioned particular advocate associated with
  university

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• Consumer Survey
• Do you have a personal disaster experience to
  share?
• We want to hear from persons with mobility
  limitations who have experienced a disaster.
• Please complete our on-line survey at
•  
• http//www.nobodyleftbehind2.org
• Click on Consumer Survey

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Nobody Left BehindConsumer Survey Findings

• There are inaccessible escape routes
• Few people know how to use the adaptive escape
  chairs for wheelchair users
• There was no accessible transportation after
  the disaster event to get around in the
  community
• Very slow response in helping citizens with
  disabilities return to their homes (e.g.,
  rebuilding ramps, moving debris, etc.)

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Nobody Left BehindConsumer Survey Findings

• Shelters, including bathrooms, were not
  accessible for wheelchair users
• During extended power outages, persons were
  unable to use assistive equipment and medical
  devices
• Power outages disabled elevators, forcing persons
  with mobility limitations to be dependent upon
  neighbors or emergency workers

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Nobody Left BehindConsumer Survey Findings

• It is really difficult to get the utility
  company to understand power is a need, if
  disabled.
• I ambulate with forearm crutches and my leg
  stamina is limited. As a social service provider
  in NYC, I am in tall buildings often and one in
  particular had an evacuation drill. There were
  no plans or equipment to assist me. They told me
  to ignore the drill. I felt very vulnerable
  because I attend regular work meetings in this
  building.

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Nobody Left BehindConsumer Survey Findings

• I have juvenile rheumatoid arthritis and use a
  wheel chair. We had a bomb threat at work, which
  was very scary. Everyone evacuated, but I was
  still left on the 3rd floor by the stairwell for
  the firefighters to come get me. But, no one
  came. Finally, I just struggled and I used pure
  fear to get myself down the stairs and outside.
  It was scary just to realize that there are not
  really any procedures in place to help someone
  like me in an emergency.

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Nobody Left BehindNew Directions

• Received 162,000 funding from the National
  Institute on Disability and Rehabilitation
  Research to conduct research on two tasks
• Identify barriers and gaps that Centers for
  Independent Living personnel have experienced
  concerning people with disabilities in the
  recently affected hurricane areas and relocation
  centers
• Identify barriers and gaps that emergency
  personnel have experienced concerning people with
  disabilities in the recently affected hurricane
  areas and relocation centers

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Current Research

• Early February, 2006
• Visited with CIL staff and consumers from
  Southern Mississippi and visited Katrina affected
  areas in Gulfport and Biloxi
• Late February, 2006
• Visited with CIL staff and consumers from
  Southern Louisiana conducting interviews in Baton
  Rouge and visiting Katrina affected areas around
  New Orleans (e.g., 9th Ward, Arabi, St. Bernard
  Parrish)
• March, 2006
• Visited with CIL staff in Alabama

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Consumer Reports

• Fear
• Dense darkness
• Safety (looters)
• Unknown (where to go? What to do? When can I go
  back, if ever?)
• What will my life be like now?

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Consumer Reports

• Resignation
• The system is broken and will not help me.
• There is nothing I can control or do.
• I have invested my whole life in my home and now
  it is gone.

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Consumer Reports

• Anger
• FEMA stands for F Every Mississippian Again.
  
• The response of authorities at all levels was too
  little too late.
• When we stayed with family after the disaster
  there was lots of tension (When you going to
  leave?)

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Centers for Independent Living Reports
Question MS CILs S. LA CILs
Anyone with DP training at your CILs? No Yes, limited
Before Katrina, did your CIL have a plan to provide services in the event of a disaster? No Yes, limited
Did your Center have an informal or formal relationship with first-responders before Katrina? No No
How many PEOPLE WITH DISABILITIES from your county had to relocate following Katrina? Thou-sands 35 K

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Centers for Independent Living Reports
Question MS CILs S. LA CILs
What were your CILs most significant accomplishments during the shelter and recovery phase? Finding consumers getting well over 100,000 of equipment to consumers Continuing to provide services post-Katrina
Based on your Katrina experience how can CILs be more effective in helping pwd in future disasters? Train, train, train for DP both staff and consumers work more closely with DP specialists Locate, evacuate, pre-assess, move to CIL-contr. shelter

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Much remains to be done

• People with disabilities must be treated as a
  separate group with separate needs and not
  combined with special needs. Such designations
  only widen disparities.
• The overwhelming response of people with
  disabilities affected by Katrina is that they
  dont want to be forgotten
• Exemplary disaster preparedness and emergency
  response procedures and annexes need to be
  developed and used to help get people with
  disabilities out of harms way

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• Mission to promote emergency preparedness
  inclusion, research, education, awareness and
• planning for people with disabilities at the
  local, state, and national level through a
  variety of means.
• The Consortium consists
• of the American Association on Health and
  Disability (AAHD), the University of Kansas
  Research and Training Center on Independent
  Living, and the University of New Mexico Center
  for Development and Disability.

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Additional Sources of Information

• www.nobodyleftbehind2.org

Findings submitted to Journal of Disability
Policy Studies  in response to Call for Papers
 Disaster Preparation and Emergency Response for
People with Disabilities Research, Policy and
Practice