Access and Functional Needs Emergency Registry Assessment Tool
By June Isaacson Kailes and Alexandra Enders
Access and Functional Needs Emergency Registry Assessment Tool
Registries are often pointed to as a simple, common sense solution for assisting people with disabilities and others with access and functional needs in emergencies (see WNYC story). Many refer to their potential usefulness, without any accompanying evidence or guidance. Paul Hewett (Organizational Networks and Emergence. During Disaster Preparedness: The Case Of An Emergency Assistance Registry, 2013) raises question about the effectiveness of registries:
“For more than 20 years, public policy and research coming from both the disaster and disability domains has recommended that governments use some form of emergency assistance registry to pre-identify people with disabilities or access and functional needs within their communities. Shortly after the ADA was enacted [in 1990], special preparedness programs (e.g., FEMA’s Radiological Emergency Preparedness and Chemical Stockpile Emergency Preparedness programs) and planning guidance (e.g., Civil Preparedness Guide 1-8 and State and Local Guide 101) began calling for community emergency managers to identify and locate their special needs populations and consider them when planning. Yet, it was not until after the particularly devastating hurricane season of 2005 that the emergency management community began paying real attention to the issue. Between 2006 and the present, the U.S. DOJ, the U.S. Centers for Disease Control (CDC), FEMA, the AARP, the National Council on Disability (NCD), and the National Organization on Disability (NOD) published guidance or reports recommending the use of registries. During the same period, Florida and Illinois passed laws requiring local jurisdictions within their states to establish registries for “persons with special needs” (Registry of Persons with Special Needs, Title XVII Florida Statutes § 252.355) or “persons with disabilities or special needs or both” (Illinois Premise Alert Program (PAP) Act, 430 ILCS 132). The unstated assumption that the recommendations and mandates make is that registries are somehow helpful.” (Hewett, 2013, pp3-4)
Hewett goes on to say that “…. there is little empirical or practice-based research supporting that assumption. Practitioners and researchers have yet to evaluate and assess the usefulness, effectiveness, or impact of emergency assistance registries. In fact, throughout the same 20-year period, researchers and policy interest groups have challenged the usefulness of registries, highlighting the limitations of self-identification, monetary and staff cost, and responder access (NCD, 2005; Tierney et al, 1988).”
Registries bring into play the complex relationship between registrant expectation and responder capacity; between the civil rights of the registrant and the responsibilities of jurisdictions and civil authorities; between resource investment versus anticipated outcome; between symbolic planning and real actionable planning. Registries are anything but simple.
Registries continue to be recommended, and in some places, required. Until objective research is available, we have drafted criteria to help your jurisdiction evaluate if a registry will achieve the desired objectives, and to assist you in deciding where and when a registry could be effective. In developing these criteria, we drew on the format in the GAO report: Disaster Response: Criteria for Developing and Validating Effective Response Plans, GAO-10-969T, Sep 22, 2010
and Functional Needs Emergency Registry Websites for examples of
variation in existing registries.
Audience: any jurisdiction or potential registry sponsor considering the development or continuation of a registry as part of its emergency management tools.
for a successful registry flow directly from a
set of clearly defined expectations that closely match response
resources. The most important issue to clarify is the purpose of the
functional needs registry. What are
developers trying to accomplish with this tool? Everything else flows
issue. It is essential that all stakeholders agree.
If there are multiple objectives for using a
registry, there are additional issues of whose perspective is driving
system. A registry viewed from a public
health and emergency management planning perspective may look quite
and have a different emphasis, than a registry viewed from the
responders perspective. (See discussion
is a Registry?”)
Before completing this instrument, it is important to clearly state the purpose/objective(s) for developing your registry tool. You will be referring back to this section about your identified intent, purpose, and objectives while filling out the assessment sections.
1.1 What are you trying to accomplish with the use of a registry?
Examples: registry will be used as a tool for: enhancing responder effectiveness and integrated with the 911 response databases; community evacuation; communicating alerts; priority power shut off warnings.
1.2 Have you identified the registry’s purpose solely as a planning tool?
Stop here and identify what you are planning for. Are you planning for response? for preparedness measures? for communication alerts? Unless you are clear on this issue, and you can communicate that purpose to potential registrants, your planning is likely to be symbolic, not actionable.
A registry will not be effective if it is used as the primary planning tool for populations with access and functional needs. A registry may be one of many tools for implementing an emergency plan. If your stated purpose for developing a registry is to have an effective planning tool for including people with access and functional needs into all emergency planning activities, you should stop here, especially if it’s the only tool you intend to use for this purpose. A registry cannot provide complete data about the demographic and geographic distribution patterns in your jurisdiction. A voluntary registry is not an effective planning tool as there is little likelihood that everyone, or even most individuals, that need to be included in the planning process will ever register, making your analysis inaccurate. For example, consumer generated information used solely for planning purposes could more easily be collected through questionnaires using reliable survey methods. You will need to clearly identify why you need register people when there are better tools and resources available for planning, such as Census data, program administrative data from human service agencies, GIS (geographic information systems) tools, etc.
1.3 If this registry is hazard specific, list which hazards it be used for?
1.4 If this registry is specific to scale of hazard, identify which scales (small, medium, large, catastrophic) it will be used for?
Criteria in Part 2 focus on whether, when, and if a registry tool is your best option, and include: acceptability, feasibility, adequacy and flexibility, interoperability and collaboration, and completeness.
2.1.1 Registry can be implemented and maintained within the costs and time frames that senior officials and the public can support, and is consistent with applicable laws.
2.1.2 Registry development and maintenance has an identified ongoing funding mechanism.
188.8.131.52 List funding source(s) and level of funding commitment for each
2.1.3 The funding level is adequate to cover initial acquisition of hardware, development of software and content (registrants information)
2.1.4 The funding level is adequate to cover ongoing maintenance of hardware, software, updating content, outreach, and training.
2.1.5 The funding mechanism is sustainable – will be in place over time; not a onetime start-up, or dependent on fluctuating grant funding;
2.2.1 Registry meets the requirements of anticipated hazards.
2.2.2 Registry complies with applicable planning guidance, planning assumptions are valid and relevant, and the concept of operations identifies and addresses critical tasks specific to the registry’s objectives.
2.2.3 Registry’s critical tasks can be operationalized with the assets available internally or through mutual aid to meet projected demand at identified hazard and scales
184.108.40.206 Response capabilities are accessed in terms of characteristics and numbers of registrants, i.e. available resources to deliver on a specific promise within a specific time frame, distance, location, etc.
220.127.116.11 The required personnel and resources are available and sound plans are in place regarding how those will be deployed, employed, sustained, and demobilized.
18.104.22.168 Immediate need for additional resources from other sources are identified in detail and coordinated in advance, and procedures are in place to integrate and employ resources effectively from all potential providers.
22.214.171.124 For hazards, scale, and scope where registry will not be activated, describe the alternative tools which will be used. Describe if and how alternatives integrate with registry tools.
2.3 Adequacy and Flexibility
2.3.1 Registry accommodates the scale and scope of identified hazards.
2.3.2 Capabilities are integrated and synchronized to accomplish critical tasks to meet objectives.
2.3.3 Limitations and criteria for use are clearly delineated and described. Breaking points --conditions under which registry is not likely to be effective, because of type of hazard, scale, timing, resource availability, infrastructure, communication, etc. -- are clearly identified.
2.3.4 Situations when registry will and will not be deployed are clearly described; and method for communicating this to the public, and to responders is clearly detailed.
126.96.36.199 Describe how the registry process will be operationalized for the scale and scope of identified hazard. (small, medium, large, catastrophic) //add links with definitions//
188.8.131.52 Describe how registry process will be operationalized based on the timeframe and type of warning:
184.108.40.206.1 Pre warning - slowly developing (e.g. storms, heat, cold, hurricane, floods)
220.127.116.11.2 Short warning (e.g. fire, tornado, tsunami)
18.104.22.168.3 No warning (e.g. earthquake, terrorist attack, chemical spill, nuclear accident)
2.4 Interoperability and Collaboration
2.4.1 Registry identifies other stakeholders in the planning process with similar and complementary plans and objectives, and supports regular collaboration focused on integrating with those stakeholders’ plans to optimize achievement of individual and collective goals and objectives in an incident.
2.4.2 Registry planning process includes all those who could be affected, including potential registrants and emergency responders.
2.5 Consistency and standardization of products
2.5.1 Registry is consistent with and systematically integrated into all appropriate planning documents.
22.214.171.124 Registry is integrated and interoperable with other existing emergency response tools and resources. Including 911 databases, GIS databases, 211, 311, alert warning notification systems e.g. Reverse 911™, and similar services?
126.96.36.199 Agreements are in place and response details are routinely integrated at least annually into all appropriate planning documents: annexes, policies, procedures and processes, protocols and training.
2.7.1 Registry addresses timelines and criteria for measuring success in achieving objectives.
2.7.2 At least annual evaluations are conducted to determine if available resources/assets can meet projected demand at designated scales and warning types.
2.7.3 Testing and improvement
188.8.131.52 Details responsibilities and frequency for testing the registry
184.108.40.206 Describes how registry testing is integrated into table top exercises; drills; exercises; real events;
2.7.4 Describes how results (outcomes, successes, and failures) are documented
2.7.5 Breaking points are reassessed based on evaluations.
2.7.6 Registry improvement work plans, and systematic updating and maintenance plans are detailed.Flowchart: Deciding to Use an Access and Functional Needs Emergency Registry
If Part 2 assessment results indicate that a registry may be a viable option for achieving your stated purpose and objectives, then consider the operational issues involved. These include registrant eligibility; system operations and confidentiality; data collection and updating protocols; content, messaging and outreach/recruitment; public perception, support, public interest; disclaimers/legal sign offs; registrants’ responsibilities.
3.1 Registrant eligibility criteria
3.1.1 Are there eligibility criteria for who can participate in the registry? (E.g. criteria for access and functional needs, geographic restrictions, determination of risk/ vulnerability?
3.1.2 If so, are they clear and specific?
3.1.3 Is the process for making eligibility determination clear and unambiguous?
3.2 System operations and confidentiality
3.2.1 Registry data integration with existing databases (e.g. 911 response database, 211, call center) is clearly operationalized, includes responsibility for input, coding, updating and purging.
3.2.2 System (hardware and software) maintenance and updating. Responsibility for data backup and redundancy is clear.
3.2.3 Clear protocol is in place which includes:
220.127.116.11 Data security and management
18.104.22.168 Frequency of backup, storage and retrieval using multiple methods and locations
22.214.171.124. Privacy and confidentiality, including, when needed, process for HIPPA compliance and monitoring,
3.2.4 Clearly identification of who has access to data (fire, police, transit, CERT, etc), and at what level of confidentiality. For partial access, include who has access to which fields.
3.3 Data collection and updating protocols
3.3.1 Accessible process for registrant completing the initial application, as well as a registrant updating protocol, is in place, which includes:
126.96.36.199 Multiple data collection methods are in place (e.g. mail, phone, internet).
188.8.131.52 Assistance is available for completing the application/registration/update (i.e. via phone, other) .
184.108.40.206 Instructions indicate whether an individual is allowed to register someone else without their knowledge/consent
220.127.116.11 Web site (508 compliant) and social media are accessible.
Improving the Accessibility of Social Media in Government covers agencies’ responsibilities to ensure that digital services are accessible to all people, individuals with disabilities. Includes recommendations for improving accessibility of social media, tips for making: Facebook posts accessible, Tweets accessible, YouTube videos accessible; and resources, training, and how to provide feedback.
Section 508 of the Rehabilitation Act requires access to electronic and information technology procured by Federal agencies.
Web Accessibility Initiative (WAI) Web provides accessibility strategies, guidelines, resources.
18.104.22.168 Plain language guidelines are used
Examples: this registry is for use in small emergencies like house fires” as opposed to this registry is for common every day events; this registry is for people who cannot walk versus this registry is for people who are not ambulatory. For guidance regarding easy to understand materials see: How to Write Easy-to-Read Health Materials
3.4 Content: data about registrants
3.4.1 Data relevance. Identify the necessary amount of data to collect from each registrant-- not too much or too little -- that will meet the stated objectives of the registry tool.
Examples: use questions that will result in critical functional information versus a disability label or diagnostic category, such as multiple sclerosis or cerebral palsy that will not communicate functional needs. For instance answers such as “I use a motorized wheelchair and have no vehicle or other options for evacuation. I’ll need evacuation assistance via a lift or ramp equipped vehicle”; “I am deaf, use ASL (American Sign Language) and do not read or speak”; “I use a communication device because my speech is not understood by most people”; “I am blind and have a service dog.”
3.4.2 Identify how you will test the registry’s data elements and questions so the answers you are getting are what you are actually asking for.
3.4.3 Identify and communicate to registrants why each data element is needed. For example: if a physician's statement is required, state why.
3.4.4 Protocol for updating information is clearly detailed.
3.4.5 Identify how records with incomplete data and/or data records which have not been updated, will be handled.
3.5 Messaging & Outreach/Recruitment
3.5.1 Detailed plan for registrants’ identification and recruitment. If you plan to use a “list of lists” approach based on service agencies client lists, there is also a process in place to identify how you will include people who are not involved with any human service agency.
3.5.2 Outreach methods: communicating clearly, accurately, accessibly
22.214.171.124 The information is clear and understandable, at no more than a 3rd grade reading level.
126.96.36.199 The application uses plain language, not medical or legal jargon (see 188.8.131.52 above)
184.108.40.206 Training on outreach process is available for staff involved with data collection, or assisting registrants with application (e.g. using a sign language interpreter, a language line, clear simple language, etc.)
3.5.3 Public perception, support, public interest
220.127.116.11 Accurate marketing and messaging does not oversell the registry’s capabilities or make ambiguous promises about response capacity
18.104.22.168 A clear statement communicates the registry’s purpose. See Part 1. Purpose and scope.
3.6 Disclaimers/legal sign offs
3.6.1 The registry has been reviewed by legal counsel.
3.6.2The application form and /or accompanying FAQ clearly:
22.214.171.124 States whether or not participation guarantees help will be available prior to, during and /or immediately after an emergency.
126.96.36.199 Explains whether or not registrant will receive preferential treatment as a result of participating. If priority is given, details how this is established and operationalized.
188.8.131.52 Explains under what conditions and types of emergencies the registry will be used, as well as when it will not be used.
3.7 Registrants’ responsibilities
3.7.1 Describes if, when, and how the registrant should communicate need for assistance.
3.7.2 Describes how and when personal information should be updated.
3.7.3 Describes how registrant can opt-out of the registry at any time.
3.7.4 Includes instructions which explain how and when to sign up for and use other systems integrated with emergency planning, response and recovery efforts. For example, alert warning notification systems such as Reverse 911™ ; priority power shut off warnings, and other services.
3.7.5 Provides information on how to participate in emergency preparedness education such as how to: collect supplies, go kits, medications, important documents; establish support teams; prepare to shelter-in-place and/or be on your own for up to seven days See: Individual Emergency Preparedness for People with Disabilities, Their Families and Support Networks
3.7.6 Explains whether participation in education programs is voluntary or mandatory; pre-requisite to registration, etc.
© 2014 June Isaacson Kailes, Disability Policy Consultant, All Rights Reserved.
Created1/1/14 | Updated 07.10.14