Special Needs Registries

As it is being seen with the recent Hurricanes Gustav and Ike, the Special Needs population creates special requirements for the first responder community, especially law enforcement. For the purpose of this article, Special Needs will be defined using the definition from the Nation Response Framework (NRF):

Special Needs Population:Populations whose members may have additional needs before, during, and after an incident in functional areas, including but not limited to: maintaining independence, communication, transportation, supervision, and medical care. Individuals in need of additional response assistance may include those who have disabilities; who live in institutionalized settings; who are elderly; who are children; who are from diverse cultures; who have limited English proficiency or are non-English speaking; or who are transportation disadvantaged.

In order to better serve the Special Needs community, some jurisdictions have started to create a Special Needs registry to help track those during an emergency or disaster. As good as this idea sounds; there are some serious issues to consider.

First let's look at the positive aspects of a registry: it gives a higher level of visibility and access to those who may need special consideration or assistance. The registry demonstrates to the Special Needs community and general population that government is concerned about those most vulnerable members of society and that they will not be forgotten.

On the downside of the registries is the expectation of a higher level of service that might not be deliverable during a time of need. With this expectation of service, the Special Needs person may not take the proper preparations and planning that they would without the Registry. This creates another possible issue for the government entity that maintains the registry. Are they opening themselves up for legal action if they cannot respond when needed?

Some people who would qualify as a Special Needs case may not think of themselves as a Special Needs person and not register. Others may not register out of fear of loss of privacy or fear of government databases. Would these Special Needs citizens be overlooked if they did not register? Do those who don't register then create an underestimate of the number of people with Special Needs, which in turn would impact the proper planning for a Special Needs shelter?

A person could register online, in person, by mail or by telephone, depending on their local registry guidelines. Once a person registers, how is their information maintained? Some locations require that the registrants update their information on a regular basis, but what if the person moves, dies or just forgets? This could result in a situation where emergency workers could waste valuable resources and be placed in harm's way needlessly while trying to locate a Special Needs person during an emergency.

These obstacles do not necessarily prohibit the creation of a Special Needs registry, as there are several ways some of these hurdles can be overcome.

The privacy issue can be addressed in several ways. One way is to safeguard the information collected by storing it on secure servers under the control of the local government agency. Another way to help maintain privacy is to not collect the specifics of what the special need is but to just collect general data. Some legal opinions state that if a person voluntarily registers, the Health Insurance Portability and Accountability Act (HIPAA) does not apply. Check with your local legal counsel for guidance.

Those who register need to be advised that registration is no guarantee of a higher level of service or a fast response. They also need to be advised that they should be prepared for emergencies just as the general population is instructed too.

Special Needs populations could also be listed in the following three levels that would not disclose anyone's actual need;

Can they make it to the street?

Can they make it to the front door?

Can they get out of bed?

Just answering these questions would help the emergency services know what type of assistance is required.

Another work-around is where a government agency does not maintain the registry, but the service provider does. An example would be the local Meals On Wheels–they know who they deliver to daily. In the event of an emergency, they could help coordinate with the local emergency organization with who may need help.

A benefit of having a Special Needs registry is that it helps determine the requirement of or the need for a Special Needs shelter. If you know the number of people who are on medical devices that require electrical power, you can plan to have an emergency generator there or the proper level of medical care providers to attend to their medical needs.

With this information to work with, you can make the determination if a Special Needs registry is something that should be started in your community.

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