Accepted Manuscript

Enhancing individual and community disaster preparedness: Individuals with

disabilities and others with access and functional needs

Judy Kruger, PhD, Cynthia F. Hinton, PhD, Lisa Bundara Sinclair, MPH, Brenda
Silverman, PhD

PII: S1936-6574(17)30229-7
DOI: 10.1016/j.dhjo.2017.12.005
Reference: DHJO 663

To appear in: Disability and Health Journal

Received Date: 14 July 2017

Revised Date: 30 November 2017
Accepted Date: 5 December 2017

Please cite this article as: Kruger J, Hinton CF, Sinclair LB, Silverman B, Enhancing individual and
community disaster preparedness: Individuals with disabilities and others with access and functional
needs, Disability and Health Journal (2018), doi: 10.1016/j.dhjo.2017.12.005.

This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to
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 ACCEPTED MANUSCRIPT

Title: Enhancing individual and community disaster preparedness: Individuals with disabilities
and others with access and functional needs.

Authors: Judy Kruger PhD1, Cynthia F. Hinton PhD2, Lisa Bundara Sinclair MPH2, Brenda
Silverman PhD1

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1
Applied Science and Evaluation Branch, Division of State and Local Readiness, Office of
Preparedness and Response, Centers for Disease Control and Prevention, 1600 Clifton Road NE,
Atlanta, GA 30329 (JK: 404-639-2371; ezk0@cdc.gov and BS: 404-718-1124; exv9@cdc.gov)

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2
Disability and Health Branch, Division of Human Development and Disability, National Center

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on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention,
4770 Buford Highway MS-E88 (CH: 404-498-3994; ceh9@cdc.gov and LS: 404-498-3019;
lvs4@cdc.gov)

Correspondence to: Judy Kruger

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Health Scientist, Applied Science and Evaluation Branch
Division of State and Local Readiness
Office of Preparedness and Response
Centers for Disease Control and Prevention
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1600 Clifton Road NE, M/S D-18

Atlanta, GA 30329
404-639-2371 (Work phone)
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ezk0@cdc.gov (Work e-mail)

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Journal: Disability and Health Journal (DUH)

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Type of paper: Commentary

Word count: Abstract: 147; Manuscript body: 1,943; References: 36

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Keywords: Community, Disability, Disaster Preparedness

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Funding: There were no sources of funding, direct or indirect, for other authors in regards to
this report.

Conflicts of Interest: The authors declare no conflict of interest. The authors have not made
prior presentations or abstracts at meetings regarding the material within this report.

Disclaimer: The findings and conclusions in this report are those of the authors and do not
necessarily represent the official position of the Centers for Disease Control and Prevention.
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Title: Enhancing individual and community disaster preparedness: Individuals with disabilities
and others with access and functional needs.

Journal: Disability and Health Journal (DUH)

Type of paper: Commentary

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Word count: Abstract: 147; Manuscript body: 1,943; References: 36

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Keywords: Community, Disability, Disaster Preparedness

Funding: There were no sources of funding, direct or indirect, for other authors in regards to

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this report.

Conflicts of Interest: The authors declare no conflict of interest. The authors have not made
prior presentations or abstracts at meetings regarding the material within this report.

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Disclaimer: The findings and conclusions in this report are those of the authors and do not
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necessarily represent the official position of the Centers for Disease Control and Prevention.
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Abstract

Preparedness planning is essential to minimizing the impact of disasters on communities and

individuals. Attention to the needs of people with disabilities is vital as they have additional

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needs before, during and after a disaster that are specific to the disabling condition. In this

Commentary, we emphasize national guidelines on disability inclusion in emergency

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preparedness. We examine some potential areas of planning and response that need attention

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as suggested by preparedness data for people with self-reported disabilities (also referred to as

access and functional needs) and highlight selected resources (e.g., tools, trainings, and online

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webinars) to enhance whole community preparedness and disability inclusion efforts. This
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Commentary intends to bridge the gap between those various facets of preparedness, at all

levels of government and among individuals, with the aim of ensuring that the whole
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community is prepared to adapt, withstand and rapidly recover from disruptions due to
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disasters.
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Background

United States (U.S.) efforts to prepare for disasters has been a major focus to ensure that entire

communities and individuals are prepared. Efforts range from developing legislation and

guidelines; funding emergency planning and response systems; collecting data; and developing

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resources to support communities and individuals. Multiple federal agencies share

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responsibility for administering these programs, including data collection and analysis, and

resource development. This Commentary discusses federal emergency preparedness efforts in

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the context of disability inclusion with the intent to enhance and broaden the combined use of

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these efforts and resources.
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Preparedness is a shared responsibility at the national, state, local community, and

individual level, and is a critical public health investment. When an emergency strikes,
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communities must be ready to respond, and resources need to be in place so national, state
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and local community partners can ensure that individuals are able to be mobilized during an
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evacuation or have sufficient supplies to shelter-in-place until the emergency has passed (1-3).

Because disasters can have an especially adverse effect on people with disabilities who may
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require access to service providers, caregivers, or are dependent on medical equipment or

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other assistive devices (4-6), including people with disabilities in preparedness efforts is critical.
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For the purposes of this Commentary, disability is defined as having some type of disabling

condition, such as vision, hearing, developmental and intellectual challenges, mobility,

emotional or psychological impairments. Adults with disabilities represent 20% of the U.S.

population (7).

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Several emergency preparedness and response provisions address the needs of the

disability population. In August 2006, the U.S. Department of Justice finalized a rule that

extended authority for the inclusion of people with functional and access needs in all aspects of

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preparedness plans through the 1990 Americans with Disability Act (8). This provision aimed to

make emergency preparedness and response programs inclusive of people with disabilities at

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the state and local levels. The 2006 Pandemic and All-Hazards Preparedness Act (PAHPA) (9)

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and 2013 Pandemic and All-Hazards Preparedness Reauthorization Act (PAHPRA) (10) called for

the U.S. Department of Health and Human Services (HHS) to integrate the needs of people with

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disabilities in all levels of disaster planning. Further guidance came from the HHS Assistant
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Secretary for Preparedness and Response (ASPR) (11), the HHS Assistant Secretary for Planning

and Evaluation (ASPE) Office on Disability (12), Federal Emergency Management Agency
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(FEMA) (13), and the Public Health Emergency Preparedness (PHEP) program (14) administered
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by the Centers for Disease Control and Prevention (CDC).

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In addition to national guidelines, community preparedness requires adequate data to

identify and understand the particular preparedness needs and behaviors of people with
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disabilities (15) and to integrate those needs into community emergency plans. Such data are
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useful for supporting national plans such as Healthy People 2020 (16), which now includes
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objectives on general individual and household preparedness [PREP-8 through PREP-13], as well

objectives for school districts and states to include children and those with access and

functional needs [PREP-5.3 and PREP-20.3] in emergency planning efforts.

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National Data on Disaster Preparedness: Adults with Disabilities

There is a shortage of data on adults with disabilities and emergency preparedness, planning,

and response (17). To the best of our knowledge, FEMA is the only organization that routinely

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collects national data on individual preparedness behaviors and beliefs for people with

disabilities. A 2014 report entitled Preparedness in America: Research Insights to Increase

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Individual, Organizational, and Community Action provides insight to increase community

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resilience (18). Findings in Preparedness in America are based on FEMA’s National Survey,

which is administered at regular intervals (e.g., every other year or annually). The survey

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questions have been fielded since 2007 and were initially administered by an applied research
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and consulting firm using a computer-assisted telephone interviewing system. Survey

participants are recruited via random digit dialing from a list-assisted sampling frame, and data
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are weighted to be nationally representative using the American Community Survey

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distributions according to geography, age, gender and race/ethnicity. The sampling frame
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represents non-institutionalized civilian adults aged 18 years or older who reside in the 50

states and District of Columbia, and live in households equipped with landlines or cellular
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telephones in each of the 10 FEMA regions. Accordingly, this sample includes adults with self-
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reported disabilities (18). The Preparedness in America report does not include statistical
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differences or trend data, however, the report’s findings may assist planners at the state and

local level to focus on gaps in preparedness and tailor preparedness efforts using a whole

community approach.

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Specifically, the Preparedness in America report provide insight into the types of

community efforts needed to ensure that households that include adults with disabilities are

prepared for potential disasters, and highlight support provisions that might be needed after a

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disaster. Estimates revealed that adults with disabilities perceived themselves to be at risk for a

natural disasters, hazardous material accidents, disease outbreaks, and terrorist acts, and

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believed that the disaster impact would be severe. For example, 69% of adults with disabilities

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believed preparedness helps in their ability to respond to a weather emergency, and similarly,

61% felt they were capable of responding to such an emergency. Forty-three percent of adults

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with disabilities felt preparing would help them respond to a terrorist attack, but only 25% felt
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they were capable of responding. Overall, 15% of adults with disabilities considered

preparedness as a way of life; 17% were working on being more prepared; and 22% had
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awareness of the need to be prepared. However, 46% of adults with disabilities were not
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thinking about emergency preparedness.

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Preparedness beliefs and perceptions vary based on experiences, risks and personal

situations. Since belief in one’s ability to prepare may not translate into preparedness behavior,
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it may be necessary to enhance the capacity of households and individuals to take protective
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preparedness actions. For example, even though 61% of adults with disabilities believed that
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they were capable of preparing for a weather emergency, only 55% reported having disaster

supplies at home. Only 39% of adults with disabilities had developed a household plan and

discussed it with family, 45% signed up for community alerts and warning systems, and only

15% had participated in a home evacuation or shelter-in-place drill in the previous year. The

data presented in the Preparedness in America report (18) are consistent with previously

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published findings that people with chronic health conditions are less prepared for emergencies

than people without chronic health conditions (19).

In addition, many experts agree that self-sufficiency in one’s ability to prepare and

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respond, and their readiness or ability to engage in preparedness activities will be needed in

the first 72 hours post-disaster (15, 20). The data presented in the Preparedness in America

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report found that a large proportion (61%) of adults with disabilities planned to rely on family

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members following a disaster, they also identified the need to rely on resources external to

their own home (18). Expectation of community support in the first 72 hours post-disaster from

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adults with disabilities included the following: 51% would rely on fire police and emergency
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personnel, 46% would rely on non-profit organizations, 44% would rely on neighbors, 44%

would rely on faith-based communities, and 38% would rely on state and federal governmental
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agencies.
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The Preparedness in America report offers a snapshot of preparedness behaviors and

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highlights support areas where targeted efforts to enhance preparedness exist. Schools,
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workplaces or community organizations are effective channels to increase preparedness

behaviors in the general population. These venues plus volunteer organizations, were noted
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social networks that motivated a greater number of people to take active preparedness
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behaviors (e.g., developing personal plans and practicing them with family, friends, and

caregivers) (18). However, 55% of adults with disabilities reported not being active in the work

force (21), which could indicate the need to establish alternative sites for training to encourage

preparedness behaviors among people with disabilities.

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Resources for Preparedness

In addition to data, existing resources need to be consistently utilized to enhance individual and

community disaster preparedness. FEMA and the CDC PHEP program provide extensive

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guidance documents, recommendations, and requirements for state and local emergency

planners that relate to integrating people with disabilities into planning, exercises, and trainings

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(14, 22). These programs have increased the visibility of people with disabilities and stressed

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the need for inclusion and assessment of people with access and functional needs (23-25). As

part of their guidance, federal partners have invested in the development of tools (e.g.,

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developing a family plan, community coalition models to mitigate the impact of natural
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disasters) (15, 20, 23), trainings (e.g., online response plans, guidance on personal

communication strategies) (26-30), and supported online webinars (e.g., development of a

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disaster kit) (31, 32). The CDC Disability and Health Program has also established an online
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catalogue of resources (27) that describes how states can use different resources, including the
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Behavioral Risk Factor Surveillance System (BRFSS), registries, and state-level surveys to inform

communities of the local needs of people with disabilities. BRFSS data can help community
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planners gain a basic understanding of disability and health, as well as emergency preparedness
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in states where this module is administered. The Pacific ADA Center offers a webinar, with
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archived episodes that promote partnership approaches to maximizing inclusion of people with

disabilities and others with access and functional needs into preparedness planning (33).

Local examples of successful community coordination exist. For example, the St. Louis

County Department of Health outlined an efficient way to dispense medication to people with

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functional and access needs during a public health emergency (24). The report highlights the

importance of collaborating with community organizations and providing appropriate

sensitivity training to responders, and illustrates the need for all levels of government to

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prepare for, protect against, and respond to a wide spectrum of events (34). Success stories

found in the grey literature are notable examples of community action to enhance whole

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community preparedness (29, 35).

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It is essential that emergency preparedness programs integrate people with disabilities

into their preparedness planning. This will better position agencies to tailor resources and

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training to meet individual and community preparedness needs, develop appropriate
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motivational messaging, expand partnerships, and strengthen communication between

emergency planners and the individuals they serve. Localities and states can look to the applied
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experience of South Carolina (36) as to how communities can engage people with disabilities,
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and establish practices that lead to improvement in the health and safety of the whole
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community.
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Conclusion

Disability status is an important demographic element to survey to develop disaster planning,

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preparedness and response priorities in efforts to enhance whole community preparedness. At

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the core of a resilient nation are people who know what they can do to protect themselves

during disaster emergencies, and have the resources to do so. Opportunities exist to strengthen

community resilience, and broader inclusion of people with disabilities into preparedness

planning, training, and exercises. Coordinated planning and channeling of resources to meet

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the local needs will strengthen community-level emergency planners capacity to minimize the

impact of disasters on the entire community.

This Commentary features findings from the 2014 Preparedness in America report to

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illustrate that adults with disabilities are working towards implementing preparedness

strategies, and highlights selected resources to enhance disability inclusion efforts. Enhanced

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collaboration among community-level emergency planners and the disability community can

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ensure the safety and security of the whole community and minimize the impact of disasters on

people with disabilities. Several emergency preparedness and response provisions have called

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for implementation strategies that integrate the needs of people with disabilities into all levels
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of emergency planning. Efforts to build such capacity are reflected in the aforementioned CDC

PHEP program as well as some of the online preparedness tools and state examples of
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integrating people with disabilities. Continued guidance and actions from ASPR, FEMA, and CDC
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will encourage this integration.

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References

1. Ablah E, Konda K, Kelley CL. Factors predicting individual emergency preparedness: a

multi-state analysis of 2006 BRFSS data. Biosecur Bioterror. 2009;7(3):317-30.

PT
2. Gershon RR, Kraus LE, Raveis VH, Sherman MF, Kailes JI. Emergency preparedness in a

sample of persons with disabilities. Am J Disaster Med. 2013;8(1):35-47.

RI
3. Smith DL, Notaro SJ. Personal emergency preparedness for people with disabilities from

SC
the 2006-2007 Behavioral Risk Factor Surveillance System. Disabil Health J. 2009;2(2):86-94.

4. Flanagan BE, Gregory EW, Hallisey EJ, Heitgerd JL, Lewis B. A social vulnerability index

U
for disaster management. J Homel Secur Emerg Manag. 2011;8(1):21.
AN
5. Hemingway L, Priestly M. Natural hazards, human vulnerability and disabling societies: a

disaster for disabled people? Rev Disabil Stud. 2006;2(3):57-67.

M

6. Priestley M, Hemingway L. Disability and disaster recovery: a tale of two cities? J Soc
D

Work Disabil Rehab. 2006;5(3-4):23-42.

TE

7. Courtney-Long EA, Carroll DD, Zhang QC, Stevens AC, Griffin-Blake S, Armour BS, et al.

Prevalence of Disability and Disability Type Among Adults--United States, 2013. MMWR Morbid
EP

Mortal Wkly Rep. 2015;64(29):777-83.

C

8. U.S. Department of Justice, Civil Rights Division. An ADA guide of local governments:
AC

making community emergency preparedness and response programs accesible to people with

disabilities 2006 [Available from: http://www.ada.gov/emergencyprep.htm.]

9. Pandemic and All Hazards Preparedness Act (PAHPA), Pub. L. No. Public Law 109-

417(2006) [Available from:

https://www.phe.gov/prearedness/legal/pahpa/pages/default.aspx].

11
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10. Pandemic and All Hazards Preparedness Reauthorization Act of 2013, (2013) [Available

from: https://www.congress.gov/bill/113th-congress/house-bill/307/text].

11. Assistant Secretary for Preparedness and Response. Pandemic and All-Hazards

PT
Preparedness Act (Public Law 109-417): Progress report on the implementation of provisions

addressing at-risk individuals. Washington, DC: ASPR; 2008 [Available from:

RI
https://www.phe.gov/prearedness/legal/pahpa/documents/pahpa-at-risk-report0901.pdf] .

SC
12. Office of the Assistant Secretary for Planning and Evaluation. Office of Disability, Aging

and Long-Term Care Policy (DALTCP) [Available from: https://aspe.hhs.gov/office-disability-

U
aging-and-long-term-care-policy-daltcp.
AN
13. FEMA. Office of Disability Integration and Coordination [Available from:

https://www.fema.gov/office-disability-integration-and-coordination.
M

14. Centers for Disease Control and Prevention (CDC), Office of Public Health and Response.
D

Public health prearedness capabilities: national standards for state and local planning. Atlanta,
TE

GA: CDC. [Available from: https://www.cdc.gov/phpr/capability1.pdf] .

15. Wolf-Fordham S, Shea N. FEMA Promising Practices: Closing Gaps in Local Emergency
EP

Plans and Grassroots Emergency Planning. The Massachusetts Active Planning Project 2015

[Available from: http://adapresentations.org/webinar.php?id=21.]

C

16. Healthy People 2020 [internet]. Washington, DC: US Deparmten tof Health and Human
AC

Services, Office of Disease Promotion; [Available from:

https://www.healthypeople.gov/2020/topics-objectives/topic/preparedness.]

17. Krahn GL, Walker DK, Correa-De-Araujo R. Persons with disabilities as an unrecognized

health disparity population. AJPH. 2015;105 Suppl 2:S198-206.

12
 ACCEPTED MANUSCRIPT

18. FEMA. Preparedness in America: research insights to increase individual, organizational,

and community action. 2014. [Available from: https://www.fema.gov/media-library-

data/1409000888026-

PT
1e8abc820153a6c8cde24ce42c16e857/20140825_Preparedness%20in%20America_August%20

2014%20Update_508.pdf.]

RI
19. Ko JY, Strine TW, Allweiss P. Chronic conditions and household prearedness for public

SC
health emergencies: Behavioral Risk Factor Surveillance System, 2006-2010. Prehosp Disaster

Med. 2014;29(1):13-20.

U
20. Basolo V, Steinberg LJ, Gant S. Hurricane threat in Florida: examining household
AN
perceptions, beliefs, and actions. Environ Hazards. 2017;16(3):1-23.

21. Stevens AC, Carroll DD, Courtney-Long EA, Zhang QC, Sloan ML, Griffin-Blake S, et al.
M

Adults with One or More Functional Disabilities - United States, 2011-2014. MMWR Morbid
D

Mortal Wkly Rep. 2016;65(38):1021-5.

TE

22. FEMA. Guidance on planning for the integration of functional needs support services in

general population shelters. 2010. [Available from:

EP

https://www.fema.gov/pdf/about/odic/fnss.guidance.pdf]

23. Ivey SL, Tseng W, Dahrouge D, Engelman A, Neuhauser L, Huang D, et al. Assessment of
C

state- and territorial-level preparedness capacity for serving deaf and hard-of-hearing
AC

populations in disasters. Public Health Rep. (Washington, DC : 1974). 2014;129(2):148-55.

24. Zod R, Fick-Osborne R, Peters E. A functional needs approach to emergency planning.

isaster Med Public Health Preparedness. 2014;8(4):301-9.

13
 ACCEPTED MANUSCRIPT

25. Webster E. Emergency planning for people with disabilities and others with access and

functional needs to insure inclusiveness. J Emerg Management. 2014;12(3):211-8.

26. Centers for Disease Control and Prevention (CDC). Planning for an emergency:strategies

PT
for identifying and engaging at-risk groups. A guidance document for emergency managers: first

edition. Atlanta, GA: CDC; 2015. [Available from:

RI
https://www.cdc.gov/nceh/hsb/disaster/atriskguidance.pdf].

SC
27. Centers for Disease Control and Prevention. Emergency preparedness: including people

with disabilities [Available from:

U
https://www.cdc.gov/ncbddd/disabilityandhealth/emergencypreparedness.html].
AN
28. FEMA. Disability [Available from: https://www.fema.gov/disability].

29. Centers for Disease Control and Prevention. Real Stories: Special Needs and Emergency
M

Preparedness [Available from: https://www.cdc.gov/childrenindisasters/real-

D

stories/index.html].
TE

30. Department of Homeland Security, FEMA. Individuals with disabilities and others with

access and functional needs [Available from: https://www.ready.gov/individuals-access-

EP

functional-needs].

31. FEMA. Emergency Planning Exercises [Available from:

C

https://www.fema.gov/emergency-planning-exercises].
AC

32. Portlight Strategies I, ,. Inclusive emergency management 101: integrating the disability

community into planning and response [Available from:

http://www.disasterstrategies.org/index.php].

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 ACCEPTED MANUSCRIPT

33. Pacific ADA Center. ADA Presentations: Emergency Management and Preparedness,

Archived Webinars. [Available from: http://adapresentations.org/archive.php].

34. Rowland J, Fox MH, White GW, Rooney C. Emergency response training practices for

PT
people with disabilities: analysis of some current practices and recommendations for future

training programs. J Disabil Policy Stud. 2007;17:216-22.

RI
35. San Jose State University. Assisting people with disabilities [Available from:

SC
http://www.sjsu.edu/emergency/procedures/disabilities/].

36. McDermott S, Martin K, Gardner JD. Disaster response for people with disability. J

U
Disabil Policy Stud. 2016;9(2):183-5.
AN
M
D
TE
C EP
AC

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