This document is a guide for advocates and allies to educate and spread awareness about the harms and ineffectiveness of registries for people with disabilities in disasters. 

For more detailed explanations and additional resources, please see Resources at the end of this document. 

When considering emergency registries as a “solution” for filling gaps in response ask: 

• Is there a general emergency registry for the whole community (like smart911)?

[Note: smart911 is a system for everyone in the community where people can opt-in to designate what they want responders to know for smaller emergencies like a house fire. It is not “special” or for a specific group of people, it is meant for the whole community in local response.] Learn more about smart911 here.

• • If so, why would we need a “special” registry for disabled people?

• Is this registry intended to be used for planning purposes or response? 
  • If planning – consider there are many other ways to plan.
  • If response – consider there are many other ways to respond, and many issues with this approach.

Emergency registries for disabled people are:

• Misleading

• • Makes disabled people think the government knows they need help.

• Create a false sense of security

• • Makes disabled people think they are prepared and someone will help in a disaster. 

• Harmful / deadly 

• • The false sense of security/preparedness registries create for disabled people can lead to injury and death.
    • People with disabilities are 2-to-4 times more likely to die or be injured in a disaster than non-disabled people.
• Symbolic, unproven, wishful thinking

Issues with registries: 

• Perception / Purpose

• • Just because you know where people live – does not mean you know where they are during a disaster. 
  • What is the goal you’re aiming to achieve by having a registry? 

• Maintenance

• • Expensive and time consuming 

• Operations

• • Answers to the below questions typically show the use of “registries” are not realistic.
    • Who will contact people on the list?
    • How would you prioritize the registrant’s needs over others?
    • How would you get help to the people identified on the list?
  • Privacy concerns
  • Capacity 

Alternative Solutions:

• Partnerships with disability-led and community-based organizations, and disability provider entities (ex. Centers for Independent Living, Developmental Disabilities Councils, Protection and Advocacy Agencies. Meals on Wheels, paratransit, home health providers, area agencies on aging, developmental disability service providers)
  • Meaningful partnerships with clear contractual obligations
  • Effective actions toward the goals of building response capacity and intended outcomes
• Regular stakeholder planning and response meetings with the whole community
• Planning WITH - not “for” disabled people

Resources:

• Emergency Registries by June Isaacson Kailes, Disability Policy Consultant
• National Council on Disability (NCD): Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters (Pg 52)
• The Partnership’s 2017-2018 After Action Report - Getting it Wrong: An Indictment with a Blueprint for Getting It Right (2018) (Section 7 - Emergency Registries - Pg. 96)
  • Updated version of Emergency Registries by June Isaacson Kailes - an expanded discussion of emergency registry content and recommendations covered in Getting it Wrong: An Indictment with a Blueprint for Getting It Right (2018).
    • This resource covers the challenges and shortcomings of existing emergency registries with examples from hurricanes in Texas and Florida and 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 we need in their communities before, during, and after a significant emergency.
• Domestic Preparedness: Beyond Registries: Better Solutions for People with Disabilities by June Isaacson Kailes