By June Isaacson Kailes and Alexandra Enders
Kailes, J. and Enders, A. (2014)
Subject matter experts
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). Other parts of this website include 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.
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. Opinions, personal experiences, and anecdotal accounts lack objective research, science and systematic documentation. 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.
“There is little empirical information about the utility or the participation levels in registries. We do not have a systematic review of the use of registries in the literature nor do we have evaluation studies on customer satisfaction, usage, or feasibility. I would like to see some hard numbers or comprehensive case studies of effective registries. We can write about them and describe them, but as researchers, it is hard to promote them when we know so little about their effectiveness.” (L. Stough, personal communication April 1, 2014)
Mary Donny in her 2013 paper “Do Special Needs Registries Make a Difference to Emergency Managers in their Decision-making?” describes the problem emergency managers have had knowing how many people with disabilities and others with access and functional needs were in their communities. “In order to address this gap and locate community members who have functional or medical needs, emergency managers across the nation created “Special Needs Registries” which may also be called functional, medical or vulnerable needs registries. Registries are now found in small and large cities, rural and urban settings. The question arises as to the effectiveness of the registries. Are the registries making a difference in emergency management decision calculations? Are emergency managers using the information found in the registries prior to, during or after emergencies? Are their decisions informed by the information contained in the registry?” 
Literature reviews in existing reports demonstrate the paucity of research on the effectiveness of registries. The few that exist are quite basic. For example, in 2008, the California Governor’s Office of Emergency Services Office for Access and Functional Needs surveyed 58 county emergency mangers regarding the use of registries in planning for persons with disabilities; and the University of Texas School of Public Health at Brownsville in “Medical Special Needs Assessment of Lower Rio Grande Valley” estimated that 350,000 people, about 1 in every 4 Rio Grande Valley residents require transportation assistance for evacuation, but only 11,000 have registered. A commentary which will be published in the July APHA journal “Using Medicare Data to Identify Individuals Who Are Electricity Dependent to Improve Disaster Preparedness and Response” reports that 15 of the 611 people in the study had registered in the city’s special needs registry. Norwood (see Opinions, personal experiences, and anecdotal accounts ) raised many questions in “Promising Practices for Evacuating People with Disabilities”.  Donny surveyed emergency managers in three states where registries had been established, focusing on use by emergency managers for decision-making purposes. She raises the question: Are registries an asset or a liability for emergency management planning? 
Hewett’s 2013 doctoral dissertation “Organizational
Networks and Emergence During Disaster Preparedness: The Case Of An
Registry” describes how “registries often
are recommended as the most useful, primary means of locating such
prior to, during, or after disaster. However, scarce empirical or
practice-based research supports this recommendation as practitioners
researchers have not evaluated and assessed the usefulness,
impact of emergency assistance registries.”
He suggests that “implications for
future practice include the need for (1) further research into
service provider registration, (2) recognizing the inherent contract
registry establishment, (3) emergency managers aligning provided
the hazards and associated risk registrants face, and (4) tailoring
disaster-related service delivery to meet individual registrant needs.”
There appears to be more information on how to develop registries versus why develop registries. Registries have diverse and complex elements which include funding, response capacity, administration, focus, recruitment of potential users (registrants), enrollment, disclaimers, education and outreach efforts, data management (information collected, privacy, refreshing-maintenance, storage and retrieval), response force commitments, and integration with other response systems.
activities should always clearly identify the
purpose(s) of developing and using any registry.
Ambiguous research is a waste of time and
resources. The issue of registry
purpose: “why is the registry being developed?” is central to any
investigation. All other questions flow
from this essential, but frequently overlooked issue. If
there is lack of clarity about what the
registry is supposed to be
doing, then it is impossible to evaluate its effectiveness or how, if
this tool is achieving its objectives. There
are additional questions such as:
What are the implications of developing a
registry for planning purposes, for operational response purposes, or a
combination of the two?
- What gets left out or overlooked?
- Are registrants clear about what they registering for?
What is the current status of the use of emergencies registries in the U.S. and internationally.
- How many registries are in place? In use? In development? What are the initial, ongoing, and projected costs?
- Which state or local entities have laws/regulations/policies on the use of registries? Are they mandatory or recommended? (These supporting documents should be complied in a database.)
- Are there requirements for local jurisdictions to maintain a registry in order to get emergency management funds? What is the implementation status and impact of such policies?
- How many people are included in each registry? What are the inclusion/exclusion criteria?
- Comprehensively examine, from the developer’s and activator’s side, registry elements such as costs and sustainability; effectiveness (successes and failures); geographic coverage; event specific and scale of event specific issues; and the essentials of promising practices.
- Is there evidence for promising practices?
- Examine issues related to registry performance from the perspective of the people who are included in the registry (registrants), and the people who will use the registry in emergency response (responders).
- Document the problems that jurisdictions who have created and implemented registries have encountered, as well as the solutions considered in resolving these problems?
- Scale. When and what type of registries are most likely to work? Examine the use of registries in emergencies ranging from small personal emergencies to large disasters; range of hazard types; include geographic spread, duration; warning; infrastructure damage, especially communications and transportation, etc.
Develop an initial set of indicators which will permit objective evaluation of existing or prospective registry. Even if the registry is intended primarily as a planning tool, the criteria should include factors from the perspective of the (registrants), and the people who will use the registry in emergency response (responders).
There are a range issues related to matching expectations with resources and outcomes that would always require active involvement of participants/registrants in any analysis.
- Compare Expectation to Capability. Compare the registrants’ expectations with the responders’ capabilities for each scale, incident, and hazard type used in the analysis. This should be bi-directional: identify what the responder capability would need to include in order to match the registrant’s expectation; identify what a realistic registrant expectations is, that will match response capability; identify discrepancies between registrant expectation and responder capability - the mismatches, differences in resource capacity, timeframes, etc. Look through the range of opinions about registries for further details about perceived mismatch.
- How to effectively include and connect registrants, responders and those who will plan, develop, maintain, update, and support the registry in the registry development and maintenance?
Location at time of event. Residential location produced by typical data collection methods (lists of lists, census data, and registries) does not account for actual location at the time of the event. Many registries operate under the inaccurate bias that most people with disabilities are in a fixed location and easy to locate because they are “homebound.”
- How are transient populations of tourists, visitors, business travelers, for example people travelling through an area via bus, train, plane, and private vehicle) identified and integrated into registry- oriented planning and response?
Not all people with access and functional needs are in human service systems. When using the lists of lists approach how will people not in any service system be included. This was major issue in the New York City class action suit Brooklyn Center for Independence of the Disabled (BCID), et al. v. Mayor Bloomberg, et al. In addition, many people who may not identify as having a disability, but have access and functional needs which would cause them problems in an emergency where these needs have not been otherwise incorporated into whole community planning. These people could create a safety profile in a system like Smart911, which is open to the entire community in any jurisdiction which subscribes to the service, not just a select few categories of people viewed as vulnerable.
Concerns about personal privacy, access to personal data are important considerations (see opinions section). Studies are needed which analyze the legal and ethical issues involved in the balance between individual privacy and security. A recent example includes: U.S. Mines Personal Health Data to Find the Vulnerable in Emergencies, by Sheri Fink, New York Times May 15, 2014 http://www.nytimes.com/2014/05/16/us/us-mines-personal-health-data-to-aid-emergency-response.html?smid=fb-share&_r=1
[H2] Prioritization of response and resources
- Do only people who register get preferential services, either explicitly (stated upfront) or implicitly (defacto, because these are the known people, on lists of lists, etc.)?
- What happens to the many who do not register?
- If only people with certain categories of access and functional needs are included, what about the others?
- Does lack of a two-way communication system (between responder and registrant) put responders at risk (wasted trips and wasted time– when the person may not actually be at that registered location or may be there but may not need assistance?
- Conventional wisdom (and maybe urban myth) describes registries for people who need priority utility restoration, priority snow removal, priority debris removal. More data is needed on if and where these programs exist, and if they do, if they have been used, and found to be effective.
Many registrants view these registries as a promise or guarantee that assistance will be provided no matter how clear and strong the accompanying legal disclaimer. Can registry sponsors legally and morally actually shed responsibility by simply adding a disclaimer?
The implicit contract with registry participants created by the existence of a registry, needs further investigation. This includes legal questions, ethical questions, and practical response questions
The opinions section is fertile ground for developing behavioral research questions.
- Why don’t people register when provided with the opportunity to do so?
- Are disclaimers effective? Do registries offer a false sense of security, even with educational efforts and clear disclaimers?
- Do registries reinforce learned dependency?
- Do registries diminish and divert the energy people should devote to: personal preparedness plans including putting effort into thinking through and taking steps to establish and keep current personal support systems?
The above research issues and questions are based on old concepts, old technology and old medical model biases about people with disabilities and others with access and functional needs.
The most meaningful research approach should look forward by exploring the use of existing and future technology.
- How could newer technologies such as Global Positioning Systems, sensor technologies, and “check in” and “find me” apps that offer two way communication capability help communicate with those who actually need assistance as well as eliminate wasted time and trips by first responders?
- How effectively is or can registry-type data be embedded with / interface with other response systems and planning tools, such as alert and warning systems?
Research budgets and scope should include support for an active subject matter expert panel which includes registrants, responders, and planners in the process throughout the project.
© 2014 June Isaacson Kailes, Disability Policy Consultant, All Rights Reserved.
Created 05.17.14 | Updated 07.10.14