Emergency Registries for People with Disabilities and Others with Access and Functional Needs

Emergency Registries

The focus and context are life-threatening disasters* that overwhelm local resources versus local emergencies, which usually and effectively use available response resources to deal with house fires, downed power lines, and vehicle accidents.

The resources below aim to clarify the layers cut through the rhetoric, and examine the dis, mis, and flawed information regarding registries. The term registries, used here and sometimes referred to as “special needs” registries or registries for disabled people,” are a disaster response and planning tool.

These resources expand on June Kailes’ efforts, along with colleagues, to broaden the thoughtful, thorough, and honest analysis of the actual value of emergency registries.

Registries are promoted as good practice and model interventions, but registries are anything but clear, simple, and compelling.

There are huge differences between:

registrant expectation and responder capacity
good intentions and harmful consequences
available needs and resources
the belief that people with disabilities are easy to locate because they are homebound versus the reality that knowing where people live doesn’t tell you where they are! The inherent medical model registry bias negates this diverse population, like everyone else: works, volunteers, plays, prays, shops, eats, and travels. Thus registries can lead to wasted calls, trips, and time for overstretched, scarce responders.
the public perception that help will arrive quickly (911, 311, 211 will work) versus the reality that local resources will be overwhelmed and state and federal help takes significant time to organize, respond, and arrive!
offering a registry as the solution, when registries divert the time and resources of registrants, planners, responders, and community-based organizations from the hard work of developing the real work of planning response capacity
that registry disclaimers are sufficient when they are ignored (even when they come with educational efforts and clear disclaimers), give people a dangerously false sense of security and weaken and divert the individual energy needed to strengthen personal preparedness plans.
the bulk of attention focused on the mechanics of how a registry operates, how confidentiality is maintained, how information is collected and shared, versus how the response connections are made and on resource availability
magical and symbolic planning*and real actionable planning
anticipated outcomes, and the evidence
the belief is that registries are a good planning tool when they only include a small fraction of the population with potential needs
promotion of registries versus holding the government and other organizations accountable by speaking out, pushing back, and insisting on impact and outcome data

Planning Information:

Planners don't see an easy alternative to getting realistic planning data, so they turn to these registries

Registries do not provide accurate data about the demographic and geographic distribution patterns in jurisdiction.

underestimates of data, contribute to false confidence in wrong decisions.

Registries are not the way to define needs. There are better tools and resources that exist or can be refined/developed with the appropriate involvement of subject matter experts with experience with disability and disaster.

If the number of people you are planning for is underestimated, i.e. the numbers are too small:

The needs will be greater than the resources. Which will result in being overwhelmed when responding.
You won’t be planning for an appropriate level of resources to meet actual needs.
You will not be working on developing the actual level of resources/assets needed for response or recovery.
You risk mistakenly believing you have met all the needs when in fact you have not, and there continue to be people in danger.
Your plan is just symbolic, and not actionable.

Definitions:

An emergency is an urgent, sudden, and serious event or an unexpected change in conditions that needs immediate action to resolve harm or prevent imminent danger to life, health, or property.

An emergency is usually a small-scale, local incident that is handled quickly using local resources.

* Disasters are severe disruptions to the functioning of a community that exceeds its capacity to cope using its resources.A disaster is a large-scale, widespread event that may cross geographic and political boundaries. A disaster requires coordinated action across multiple entities and levels of government to resolve; it may be natural (floods, wildfires, or human-cause (war, terrorist attacks); or technological (power outages, cyber-attacks). Common to all definitions of disaster: the disruption overwhelms the ability of the affected communities to cope using their resources.

**Symbolic planning refers to guesses based on untried, undocumented, or unsuccessful practices. Symbolic plans lack specifics of who, what, where, when and how.

Emergency Registries: A Misleading, Harmful & Non-inclusive Fix, Part [1] 9/8/22 & Part [2] 10/13/22

In this 2-part discussion, the broadly used term registries, is narrowed to refer to registries for disabled people, sometimes referred to as” special needs” registries.
These registries are used primarily by government as disaster response and planning tools.These registries typicallyconsistofa databaseofindividualswhovoluntarilysignupand meetvariouseligibilityrequirementsfor receivingdisaster responseservices based on a need.
The panel will take a deep look at clarifying the layers, cutting through the rhetoric, and examining the dis, mis, and flawed information regarding registries. The panel will also explore the hard work needed to build resource capacity and operationalize, embed and sustain viable assistance.

Panel: Moderator: Shaylin Sluzalis, Co-Executive Director, The Partnership for Inclusive Disaster Strategies

Alexandra Enders, Consultant
June Isaacson Kailes, Disability Policy Consultant
Marcie Roth, Executive Director, World Institute on Disability

The panelists will review and explore:

Registries and disasters
Harm they can cause
Better options
Evidence
Tools
Research needed

Recordings:

Emergency Registries - an expanded discussion of emergency registry content and recommendations covered in Getting it Wrong: An Indictment with a Blueprint for Getting It Right (2018). Covers the challenges and shortcomings of existing emergency registries with examples from recent hurricanes in Texas and Florida, as well as other disasters. Recommendations focus on the need to look beyond emergency registries to the new, ubiquitous technologies that more easily connect people with disabilities and others with access and functional needs to the supports and assistance they need in their communities before, during, and after a significant emergency.

These resources expand on June Kailes’ efforts, along with colleagues, to broaden the thoughtful, thorough, and honest analysis of the actual value of emergency registries.

Emergency Registries for People with Access and Functional Needs

By June Isaacson Kailes and Alexandra Enders

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 with disabilities and others with access and functional needs (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.

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.

Part 1. Purpose and Scope
Part 2. Assessment of Registry Viability
Part 3. Assessment of Registry Operational Elements

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