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Emergency preparedness for adults with disabilities.

The author began her 40 years of public service to people with developmental disabilities following her graduation from Peninsula General School of Nursing. Over the past four decades, she has served the Division of Developmental Disabilities Services in several capacities, including staff nurse, nurse supervisor, early intervention nurse, training coordinator, regional and, then, statewide director for Community Services. In her current role as Director of the Division of Developmental Disabilities Services, she directs the activities of over 600 employees who serve nearly 3,000 children and adults throughout Delaware. Marianne is also a member of the Governor's Commission on Community-Based Alternatives for Individuals with Disabilities.

Emergency preparedness (EP) has become an important part of everyday life in America! For individuals with disabilities, this has particular resonance. It is commonly known that individuals with disabilities had increased difficulty evacuating the Gulf Coast during Hurricane Katrina in the summer of 2005. This recent historical example has increased awareness of the need to improve EP for people living with disabilities. The Centers for Disease Control and Prevention estimates approximately 50 million adults in the U.S. have disabilities. (1) This figure represents almost 17% of the U.S. population. These people are as heterogeneous as the general population. They live in all types of residences. Many of them live independently without any caregiver or family. They come from all racial, ethnic, and socioeconomic groups. Their uniqueness, as a distinct demographic group, is that individually they have one or more cognitive, mental, sensory (hearing or vision loss), or physical disability. While some of these disabilities appear more obvious than others; each of them creates specific challenges in providing adequate and timely EP. These challenges have been described, by some, as 'special needs'. Delaware refers to them as 'non-typical needs'. Regardless, these 'needs' represent challenges that must be addressed in inclusively when developing EP strategies.

In June 2005, I attended at statewide conference on 'EP and Response for Individuals with Disabilities and Special Needs.' At that conference, the Disability Preparedness Center, an organization that provides EP resources to organizations, presented an 'Inclusive Emergency Planning Cycle' (2) that serves as a guide to programmers as they strive to develop effective EP strategies for adults with disabilities. The 'Cycle' includes eight steps:

1. Locating and Recruiting Individuals with 'Special Needs'

2. Developing Communication Links

3. Sheltering In Place

4. Evacuating

5. Transportation

6. Rescue

7. Recovery

8. Practice/Exercise

While each of these steps is critical, I think that the first two steps should be highlighted. Most individuals living with disabilities are not part of any particular 'service system'. They have independent lives as disperse and varied as the rest of us. At the same time, we realize that there are those individuals with disabilities that do live in nursing homes, group residential settings, and have significant, complex medical needs. Identifying all of these locations and integrating reliable communication systems amongst them and with EP organizations is quite challenging. Additionally, it is important for EP organizations to hear, first hand, from individuals with disabilities as to what it is they need if, in fact, they have to evacuate (or stay-in-place) during a time of emergency. For EP personnel, on the other hand, we have learned that information geared towards aiding individuals with disabilities needs to be concise and straight-to-the-point so that tasks can be effectuated quickly during a time of emergency.

The Center for Development and Disability has developed a pocket-sized, color-coded, flip-chart entitled 'Tips for First Responders'. (3) This field guide is filled with useful and succinct information for first responders as to how they can best help the following groups of people during an emergency situation: those with service animals, mobility impairments, autism, sensory impairment; multiple chemical sensitivities as well as those who are seniors. The tips are divided into various categories which are customized to that group's particular 'non-typical needs'. The section which is dedicated towards assisting those individuals with autism is categorized into three parts: communication, social, and sensory and behavior. It includes the following bulleted points:

1. Avoid using phrases that have more than one meaning such as 'spread eagle,' 'knock it off,' or 'cut it out.'

2. Because of the lack of social understanding, persons with autism spectrum disorders may display behaviors that are misinterpreted as evidence of drug abuse or psychosis, defiance or belligerence. Don't assume!

3. If the person is showing obsessive or repetitive behaviors, or is fixated on a topic or object, try to avoid stopping these behaviors or taking the object away from them, unless there is risk to self or others.

Another section focuses on assisting people who are deaf or hard of hearing. It includes:

1. If possible, flick the lights when entering an area or room to get their attention.

2. Establish eye contact with the individual, not with the interpreter, if one is present.

Such information can make the difference between effective and ineffective communication during a time when it is crucially important. In Delaware, the Division of Developmental Disabilities Services participates in a statewide, multi-agency group called the "EP for Individuals with Non-Typical Needs Workgroup." Members represent various Delaware Health and Social Services' Divisions, the Delaware Developmental Disabilities Council, the Delaware State Police, the Department of Transportation, Delaware's Emergency Management Agency and the Federal Emergency Management Agency (FEMA). The group is working on supporting communication efforts between people with special needs and emergency responders. The workgroup focuses on assuring the accurate, timely, and effective flow of emergency related information to and from people with 'non-typical needs'. Additionally, there is a subgroup working on identifying emergency evacuation needs for all citizens of Delaware and assuring that people with non-typical transportation needs are accounted for and accommodated. (4)

Nationally, there are federal efforts such as the reference guide recently produced by the Federal Emergency Management Agency (FEMA). It outlines access requirements and standards for people with disabilities during periods of disaster. It is entitled 'The Reference Guide for Accommodating Individuals with Disabilities in the Provision of Disaster Mass Care, Housing and Human Services.' The FEMA website states that this guide was developed as a requirement of recent federal law. (5) The National Association of State Director of Developmental Disabilities Services says that this is the first of a series of disability-related guidelines to be produced by FEMA for disaster preparedness and response planners and service providers at all levels. (6) I urge emergency preparedness professionals and policy makers to review this guideline as well as future guidelines that will be forthcoming. Hopefully, these guidelines coupled with integrated, state-supported, and inclusive EP efforts will result in effective emergency responses for individuals living with disabilities during times of natural and man-made disasters.


(1.) Disability and Health State Chartbook: Profiles of Health for Adults with Disabilities. Atlanta, GA: Centers for Disease Control and Prevention; 2006.

(2.) Inclusive Emergency Planning Cycle. Washington, DC: Disability Preparedness Center; 2004: www.

(3.) Tips for First Responders: 2nd Edition. Albuquerque, NM: Center for Development and Disability, University of New Mexico; 2006:

(4.) Emergency Preparedness for Individuals with Non-Typical Needs Workgroup. Dover, DE: Public Health Preparedness Section of the Division of Public Health and the Delaware Developmental Disabilities Council; 2006.

(5.) The Reference Guide for Accommodating Individuals with Disabilities in the Provision of Disaster Mass Care, Housing and Human Services. Washington, DC, Federal Emergency Management Agency; 2007: reference.

Marianne Smith, RN
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Author:Smith, Marianne
Publication:Oklahoma Nurse
Geographic Code:1USA
Date:Mar 1, 2008
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