Emergency Registries

Updated     01.22.26

People who advocate for support of emergency registries for people with disabilities, understandably, want quick and simple solutions. Registries ignore the complexity of emergency planning and response. It is tokenistic, disingenuous, and irresponsible to urge people who may need disaster help to rely on registries. Real solutions emerge from specific, actionable, tested, and sustainable responses, rather than theoretical or fantasy-based plans.
June Isaacson Kailes, Disability Policy Consultant

New

June Kailes’ Comments for The City of Los Angeles Commission on Disability 6/12/25 Public Hearing: Emergency evacuation policies, procedures, and services for people with disabilities in Greater Los Angeles (pdf)

Public Comment Opposing Disability Disaster Registries and Advancing Real Solutions, Partnership for Inclusive Disaster Strategies 9/12/25

Purpose

The focus and context of this page are life-threatening disasters* that overwhelm local resources, rather than 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.

Definitions used:

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 exceed 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-caused (war, terrorist attacks)) or technological (power outages, cyber-attacks).  Common to all definitions of disaster: the disruption overwhelms the affected communities’ ability to cope with their resources.

Symbolic planning involves guesses based on untested, undocumented, or unsuccessful practices. Symbolic plans lack specifics of who, what, where, when, and how. This type of planning is also known as magical thinking.

Major Issues

Registries are promoted as good practice and model interventions, but registries are anything but straightforward, 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
• believing registry disclaimers are sufficient when they are ignored (even when they come with educational efforts and clear disclaimers) gives people a dangerously false sense of security and weakens and diverts the individual energy needed to strengthen personal preparedness plans.
• the bulk of attention focuses 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

Data and Planning Information

 Planners who don’t see an easy alternative to getting realistic planning data sometimes turn to registries.

Registries do not provide accurate data about the demographic and geographic distribution patterns of a jurisdiction.  Underestimating data leads to false confidence and wrong decisions.

Registries are not the way to define needs.  Some better tools and resources 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.  This 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.

Reports, Tools, Articles, and Presentations

Access and Functional Needs Emergency Registry Assessment Tool intended for any 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

Beyond Registries: Better Solutions for People with Disabilities (2023)

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.

Emergency Registries: A Misleading, Harmful & Non-inclusive

• 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 the government as disaster response and planning tools. These registries typically consist of databases of individuals who voluntarily sign up and meet various eligibility requirements for receiving disaster response services based on need.
• The panel takes a deep look at clarifying the layers, cutting through the rhetoric, and examining the dis, mis, and flawed information regarding registries. The pane also explores the hard work needed to build resource capacity and operationalize, embed and sustain viable assistance.

• Part 1 Emergency Registries: A Misleading, Harmful & Non-Inclusive
• Part 2 Emergency Registries: A Misleading, Harmful & Non-Inclusive

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

Archives

Presentations, Reports, Research needed, Registry Websites, Stakeholder Opinions, Webinars