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Emergency Registries for People with Access and Functional Needs

By June Isaacson Kailes and Alexandra Enders

© 2014

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Emergency registries may seem like an easy and logical answer for addressing what are perceived as “special needs” for a small segment of the population.  In reality, registry issues are complex, and the needs when  functionally defined, are not special, and are not limited to just a small group of people (Kailes and Enders, 2007).

We continue to discuss emergency registry issues, and aren't quite ready to write a peer reviewed journal article. But we have developed so much material over the last decade that we decided it was time to make some of it available online.

We are including a flowchart and assessment tool for making decisions about using a registry; a compilation of opinions about registries;  background discussion on what registries are, and the types of registries used in emergency management; links to some of the existing registries, so you can see the variation that exists.

We are still compiling additional registry materials such as: a registry evaluation tool useful to consumers and community organizations; alternatives to using registries; technology approaches in public and private sectors; whole community planning strategies which fully integrate people with access and functional needs, and registry research needed.

These pages represents our work in progress, discussions, drafts of articles and content presented at
workshops and webinars. We encourage you to help refine its content, identify additional resources, and provide feedback about what works, doesn’t work, or needs work.  Please include “Registry feedback” in the subject line of your message to jik@pacbell.net.

To generate discussion and to avoid symbolic planning (i.e. planning which cannot be fully operationalized to achieve even the most well intentioned objectives) several resources are posted here to assist in thinking through the implications of using a registry as the sole or primary answer to addressing access and functional needs in an emergency, especially when considering its use for all hazards, scales, and warnings, or as a planning tool.
 
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Access and Functional Needs Emergency Registry Assessment Tool is intended for any jurisdiction or potential registry sponsor considering the development or continuation of a registry as part of its emergency management tools.

Flowchart: Deciding to Use an Access and Functional Needs Emergency Registry This flowchart depicts part 1 (purpose and scope) and part 2 (assessment of viability) of the registry assessment process, described in the registry assessment tool.

Stakeholder Opinions of Access and Functional Needs Emergency Registries reviews feelings about registries that focus on people with disabilities and people with other access and functional needs in emergencies among emergency managers, planners and responders and the disability communities.

Emergency Registries: Research Due to scarce and piecemeal research on registries, there is a lack of data for organizations contemplating creating and maintaining registries.  Much of the available guidance is hypothetical and untested, especially in large scale emergencies. There is little to no documented evidence that when activated emergency registries for people with disabilities and others with access and functional needs have made a difference in protecting people’s life, health, and safety.

 
What is a Registry? Though the focus is on people with access and functional needs, it is important to remember that the word registry is also used for other types of emergency management tools. This section describes a broader context for registries, including inclusive models and alternatives.
 
Access and Functional Needs Emergency Registry Websites provides links to some examples of the registry websites.
 
Papers, Presentations, Webinars and Resources includes additional resources on access and functional needs emergency registries.
 
Feedback:

This is a work in progress designed to evolve based on new learning and continuous feedback as new methods and tools become available.  You are encouraged to refine its content, by providing additional resources, as well as feedback about what works, doesn’t work, or needs work.  Please include “Registry feedback” in the subject line of your message to jik@pacbell.net 


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© 2014 June Isaacson Kailes, Disability Policy Consultant, All Rights Reserved.
Created1/1/14 |  Updated 07.10.14