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The challenges faced during emergencies and disasters by individuals with special needs must be addressed in every phase of emergency preparedness. The information in this document is provided to support the efforts of local jurisdiction planners in addressing these issues. The information has been compiled from a wide variety of public, private and advocacy organization web sites and documents. Information has also been gathered from both “best practices” and “lessons learned” testimony, articles and documents.
Overview of Registries for Special Needs Populations
Registries are voluntary and are developed and maintained at the local level. The general purpose for registries is to make the local emergency authority aware of the individual’s presence and special needs. Some jurisdictions employ registries only as a means of pre-emergency outreach (providing planning and other useful information, such as how to compile an emergency kit or develop a support network). Others use registries to alert registrants of impending emergencies; this allows individuals with special needs to begin emergency preparations and/or evacuation. Still others rely on registries to assist in evacuations or to provide emergency services such as transportation, sheltering or health care during a disaster. While variability exists in how a registry will be used, local county officials are responsible for responding to emergencies. Typically, counties work collaboratively with local Emergency Management officials, and often with public and private human services agencies and non-profit organizations, to decide the purpose of the registry, what entity will assume administrative responsibility, the mechanics of how the registry will work (e.g., what data goes in and how the data is dispersed and to whom during an emergency), and who will develop privacy and security guidelines. All registries that have been reviewed deal in some manner with privacy, confidentiality and data security. Most registry forms state which emergency response entities will be provided with the registrant’s information. Some forms list specific response entities and others are less specific, stating, for example, “emergency responders” will be provided with the information. The registration application states that by signing the application (or by submitting the application online) the registrant is agreeing to this use and disclosure of personal information. Many registration sites also include HIPAA compliant authorizations and/or other specific use and disclosure agreements. Many sites indicate that the information will be kept on a secure database, but offer few details. All registries encourage registrants to keep their information updated. Beyond that request, significant variability exists in methodologies for updating data. The jurisdictions that actively pursue registrants (making periodic phone calls, for example) to verify that data is current and accurate are likely to have volunteers dedicated to this activity. In one North Carolina County, for example, Retired and Senior Volunteer Program (RSVP) volunteers provide this service. EPOC Vulnerable Populations Workgroup 6/24/2008 1
A Texas County encourages annual registration. A Wisconsin County sends a renewal notice to registrants in March of each year asking that they complete a re-application. By law, registries must be updated annually in Florida; some counties employ a Special Needs Coordinator to manage such tasks. Registration guarantees neither immediate nor preferential treatment during a disaster. Most Special Needs Registry sites stress this fact, and many note that registration does not replace the responsibility of individuals to have their own emergency plan. It is generally believed, however, that a registry will enhance the ability of emergency management and local officials to meet the emergency needs of individuals with special needs. No matter how comprehensive a registry may be, not all people with special needs will register. In June 2007, for example, in the disaster prone area of Carolina Beach, North Carolina, only 14 residents were registered to receive special assistance; the community is performing outreach to enhance registration. Any registry should be considered only a guide in an emergency, and not a definitive or exhaustive list. There does not appear to be a specific means of funding registries, and costs are not clearly defined.
Examples of Registries for Special Needs Populations
Tarrant County, Texas The Special Needs Assistance Program (SNAP), which encourages online enrollment, provides Fort Worth’s emergency responders with vital information about residents with permanent disabilities, both adults and children. The elderly population is also targeted. Residents are encouraged to register annually with the Office of Emergency Management. The program began in the mid 80s, on paper, and has evolved into a secure database which is ADA compliant. The database includes name, gender, age, weight, address, primary language, emergency contact, and handicapping condition. Other information includes use of aids such as a walker/cane, crutches, wheelchair, guide dog, oxygen, or life support system. Whether equipment requires an intermittent or continuous electrical supply is also noted. Space is provided for additional comments. Linn County, Iowa In Iowa, the Linn County Emergency Management Agency (EMA) developed a special needs registration program to gather information about the needs of persons with disabilities who live in their homes, not in a group home or residential care setting. Because confidentiality laws prohibit EMA officials from obtaining this information from social service agencies, they must rely on voluntary registration. EMA collected this information by phone and through mailed registration cards. The information was then entered into a special EMA geographic information system database. Florida Florida requires, by state law, that each county have a Special Needs Registry that its residents can voluntarily join. To assist the local emergency management agency in identifying such persons, state agencies and other organizations serving special needs clients are required to EPOC Vulnerable Populations Workgroup 6/24/2008 2
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Registries for Special Needs Populations Planning Considerations
This document identifies issues to be considered in the development of registries for special needs populations. The information has been compiled from a wide variety of public, private and advocacy organization web sites and documents, but is neither exhaustive nor equally applicable to all situations. Authority, Purpose and Support • • • • • The registry system has been approved or mandated by local authorities. The purpose of the registry is established (“special needs” is defined). Expectations and benefits are defined and have been communicated to stakeholders. Potential users (e.g., emergency responders) have indicated that a registry would be helpful to them and have committed to using the data. Costs have been established, and a funding source is identified. The effort is sustainable.
Administrative Decisions • • • • • • The administrative entity is identified. The decision is made on where the registry will be housed. The decision is made on what entity maintains the registry. The decision is made on whether or not the registry is implemented countywide. The decision is made on who owns the data. The decision is made on who is responsible, and on what schedule, for keeping the data current and accurate.
Design and Operations • • • • • • • • Based on the defined purpose of the registry, decisions are made on eligibility criteria for registrants. A registration application is developed based on eligibility criteria. The decision is made on whether the registry will be paper-based or maintained on a database. The decision is made about tying the registry in with any existing automated system. Decisions are made on how potential registrants will be recruited. Decisions are made on registration procedures (e.g., apply on paper/online, notification to registrant). The methodology for notifying emergency responders is established. The registry has been tested or utilized in an actual emergency.
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Privacy and Security • • • Federal and state privacy and confidentiality laws have been researched to ensure compliance with legal mandates in the development of the registry and in how data is disclosed/re-disclosed. The types of disclaimers registrants need to acknowledge (e.g., use and disclosure of data, understanding that registration is not a guarantee of assistance, HIPAA) have been defined. Safeguards are in place to protect the privacy of registrants and the confidential information they provide.
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Resource Listing for Special Needs Registries
Albany County, New York, Special Needs Registry Program (registry, transportation) www.albanycountysheriff.com/emergcomm.html Brevard County, Florida, Special Needs Program (registry, shelters, transportation) http://embrevard.com/special_needs.cfm Carolina Beach, North Carolina (registry, transportation) http://www.carolinabeach.org/site_new/pages/welcome.html (scroll down to document) http://www.carolinabeach.org/site_new/pages/documents/specialneeds_000.pdf Fairfax County, Virginia (medical needs registry, medical shelters) http://www.fairfaxcounty.gov/specialneeds/medicalneedsregistry.htm Florida Department of Health, Chapter 64-3, Special Needs Shelters (registry, shelters) http://www.floridadisaster.org/SpecialNeeds/Documents/2007/DOH%20643%20SpNS%20rule%20Nov%2007.pdf Indian River County, Florida, Comprehensive Emergency Plan 2007 (registry, shelters) www.irces.com/Emergency_Management_Division/CEMP.pdf Linn County, Iowa, Special Needs Registration http://www.linnema.com/ (click on Special Populations) Monroe County, Florida, Special Needs Registry (registry, transportation) www.monroecounty-fl.gov/Pages/MonroeCoFL_Social/specialneeds/?textPage=1 Palm Beach County, Florida, Special Needs Program (registry, shelters, transportation) www.ci.highland-beach.fl.us/index.asp?nid=202 Polk County, Wisconsin, Special Needs Registry http://www.co.polk.wi.us/emergency-mgmt/special_needs.asp Tarrant County, Texas, Special Needs Assistance Program Registry https://www.fortworthgov.org/applications/snap/ Utah Special Needs Registries (one for individuals and one for facilities) www.specialneedsutah.org/
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