Registries for Special Needs Populations

Preface

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.

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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
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provide registration information to their clients. By law, the registries must be updated annually.
The registration program gives persons with special needs the option of preauthorizing
emergency response personnel to enter their homes during search and rescue operations if
necessary to assure their safety and welfare during disaster.

Monroe County, Florida

As noted above, each local emergency management agency in the state must maintain a registry
of disabled persons located within the jurisdiction of the local agency. Individuals are eligible to
be registered with the Monroe County Special Needs Registry if they are 60 years of age or
older, frail, elderly, medically needy, and/or disabled and are not served in or by a residential
facility program. Eligible clients must complete and sign the Special Needs Registry Application
and HIPAA forms before they are placed on the registry. The Registry site states, “If you have
registered with Social Services and requested transportation assistance, you will be contacted by
phone in advance of evacuation. When we call, you will need to decide whether you will be
evacuating and let us know at that time. We will not be able to call you back. If you decide to
evacuate, we will give you an approximate time we expect to pick you up. You must have your
belongings and supplies packed and ready to go.”

Albany County, New York

The Albany County Special Needs Registry is a voluntary registry of individuals who would
require assistance in the event of an emergency. This assistance could be as simple as advising
emergency responders of a patient’s medications if called to a medical response or of those who
need evacuation assistance in the event of an emergency. The registry alerts emergency
responders as to resident locations and gives them the vital information they need. All
information is strictly confidential and used only for emergency purposes.

Utah
Utah has a Special Needs Registry for individuals and a separate Special Needs Registry for
facilities. The Registries are administered by the State, and the resulting database is maintained
by a State contractor. Each county or town has access to only its own data in the database. In
addition to basic information (location, contacts, etc.), the facilities registry requests information
on the average number of residents in specific categories (e.g., ventilator-dependent, requiring
oxygen, dependent on life sustaining medications), and the total average number of residents in
the facility.

Fairfax County, Virginia

The Medical Needs Registry is an emergency preparedness tool that will be used by County
officials for communicating with people with medical needs, pre-event emergency planning, and
for evacuating and sheltering during actual emergencies. The information is available to
emergency planners. By submitting their information, registrants authorize the County and its
agencies to use the information in accordance with the Medical Needs Registry Privacy Policy.
While registrants do not need to complete a new application every year, they are contacted on an
annual basis to re-certify their need for the program.

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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%2064-
3%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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