Slide 1 
Emergency Management and Preparedness Session.
“Registries: It’s Not About the List!” 
The Session is scheduled to begin at 2:00 pm ET
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Slide 2 
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Slide 3
Listening to the Webinar, continued
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Slide 4 
Listening to the Webinar, continued
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Slide 5 
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Slide 6 
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Slide 8 
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Slide 9 
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Slide 10 
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Slide 11:
“It’s Not About the List” – Some Research Derived Thoughts Regarding Emergency Assistance Registries
Dr. Paul Hewett
Center for Integrated Emergency Preparedness
Decision and Information Sciences

Slide 12:
The not hidden agenda
Some background on “Special Needs” registries
A case study
What the case study tells us

Slide 13:
What is an “Emergency Assistance Registry”
A list or set of lists of individuals that a community uses to plan for and direct emergency services to its enrollees. 

Usually, there is an organization responsible for coordinating or providing disaster services maintains the list.

The list’s data elements consist of:
enrollee names, addresses, and contact information
enrollee disabilities or access or functional needs selected from a community-generated set of characteristics.

The registry may take the form of indexed card decks, spreadsheets, tables, electronic databases, or complex geographic information systems.

Slide 14:
Why registries?
Graphic showing List of reasons:
ADA
Court Cases
State Statutes
Disability Organizations
Policy and Interest Groups
Researchers

Slide 15:
Who are you registering?
Diagram depicting why registries are used.   Lists Access and Functional Needs:  Communication,  Medical Care, Independence, Supervision and Transportation.   Shows that one can have an access and functional need without having a disability.

Slide 16:
What the research says about registry use in the U.S. – Target population
People with special needs
People needing evacuation assistance
Children home alone
People with medical needs
People with social (e.g., C-MIST) needs
Economic disadvantage
Language and literacy
Individuals who require access to electricity
The frail elderly

Slide 17:
What the research says about registry use in the U.S. - Purpose
Providing enrollees warning and other emergency information
Checking on enrollee status pre- and post-event
Providing evacuation or transportation assistance
Targeting preparedness efforts
Identifying enrollee locations for planning

Slide 18:
What the research says about registry use in the U.S. – Responsible agency
Emergency Management Agency
Utilities (collecting information)
Fire Department
Paratransit Agency
Department of Health

Slide 19:
What the research says about registry use in the U.S. – Registration methods
Forms or cards (Return mail, email, or fax)
Online (Web-forms)
Telephone
Service provider registrations
“Lists-of-lists”

Slide 20:
What the research says about registry use in the U.S. – Information storage
Purpose designed GIS
Crisis information management systems (e.g., WebEOC)
Business software spreadsheets or databases (e.g., Microsoft Excel or Access)
Agency created databases
Card decks

Slide 21:
What the community did… The case study
Calhoun County, Alabama
Documented method of establishing the registry (Metz et al. 2002)
10 years of episodic and running archives
Specific technological hazard plus all natural hazards.
Used multiple registration methods
Used single organization and an organizational network to operate the registry.
Image of map showing location of enrollee's circa 2001

Slide 22:
What the Community Did…
Determined the registry’s purpose
Set up the registry’s administration and information collection processes
Collected information
Compared information with primary hazard
Determined what services would be provided
Determined individual accommodations based upon reported needs
Follow-up

Slide 23:
Registration methods
Emergency management research recommends return mail surveys, web-based survey, service provider referral, and list-of-lists as registration methods. 
All methods were attempted at some point during the period examined
Organizational network members indicated they had a larger role in registration than supported by registry data.
Beliefs about HIPAA caused service providers to not share their lists or do referrals.
No web-based registrations during the three years it was available

Slide 24:
Outcome: Ten-year enrollment trends
Initial registration in 2000 was 3021
50% turn-over each year
Registrations trended downward linearly each year, so that by 2010 there were only 1632 registrations.
Reasons for not reregistering were tracked:
2004 to 2007: 39.5% no longer need assistance / 29.4% deaths.
2008 to 2010: 4.7% no longer need assistance / 68.0% deaths
Focusing service efforts on preparedness works

Slide 25:
Enrollment as a percentage of the population
Table showing enrollment as a percentage of the population:

Census Year 2000:  General population 112,249; Disability Population 25,861; Enrolled Population 3021; Enrolled Population as a percentage of the general population 2.69%; Enrolled Population as a Percentage of Disability Population 11.68%
Census Year 2010:  General population 117,641; Disability Population 21,295; Enrolled Population 1632; Enrolled Population as a percentage of the general population 1.39%; Enrolled Population as a Percentage of Disability Population 7.66%

Slide 26:

The importance of purpose
How will the information be used?
Influences registry administration and delivery of services
How will it aid in the planning for and delivery of services?
Can the information be obtained another way?

“My first question is what’s the purpose [for the registry]? What’s the purpose? What are you telling these folks when you register them?”

“If you are going to establish a registry and have not thought out how you are going to use it, how you are going to maintain it, and how you brought value back to the person who gave you the information it is going to die on the vine…”

Slide 27:
Hazard interpretation affects registry focus
“…honestly, early on, we were kind of thinking we could suit-up first responders and get [the special needs population] out.” 

“When we first ran the special population [planner software] and pulled up that map, and it showed the number of people located in the pink zone, I mean light bulbs started going off immediately and we had a big problem. It was a huge problem. So, we knew we needed to come up with something very unique for those people close in and then take care of the people in the outlying area.” 

Slide 28:
Social contract/obligation
Most registries indicate that there is no guarantee for services
Just like any other government provided service,  it is a social contract/obligation or political promise UNLESS…
The registrant has a disability – then under the ADA the government providing the service MUST provide a reasonable accommodation to achieve same access to the service 
Goes back to purpose
What is being provide to the populations at large, what is the expectation (issue of self-preparedness) 

“When we started getting [registration forms] in, it was kind of interesting, because we had the conversation “ok we identified those special needs people, what are we going to do with them?” Because, now something is expected of us.”

Slide 29:
An organization’s role defines its expectations for the registry’s function within the community
Disaster-centric organizations saw the registry as reinforcing individual preparedness
“A registry was never designed for us to gather all of the information for the government to come and help you.  This is not the 82nd airborne.  We do not have helicopters where people are going to dive in there and rescue you.  [The registries purpose is] to identify potential risks and to provide alternatives so you can help yourself. “ (Public Official)

Service-centric organizations saw the registry as a way for people who cannot help themselves to receive assistance
“I expected [the registry] to be used as in case of emergency they would check to see if [those in need] were taken care of… I kind of believe that the people at that FEMA …  they would have people in the communities  that had signed up for that duty to go and check.” (Individual who raised awareness for the registry)

Slide 30:
For a registry to work everyone must buy into the final product
“If you are going to establish a registry you must let people know how you are going to use it.  You must go out and get buy in from all of those potential support agents.  You have to get buy in from the religious leaders.  You have to get buy in from the city and the political leaders.  You have to get buy in from the first responders and receivers.  You have to get them to buy in that there is value there.   If any one of those four groups don’t buy in the success of that registry being established and being sold may be negated. “

Slide 31:
Need or disability were not the only reasons for enrolling
People put themselves on the registry so they can feel a sense of connectedness to others in the community

“I think a lot of that had to do with they want to be heard.  The residents that registered with us, they wanted us to know that they were there.  A lot of our responders didn’t even know that these residents even had any special needs because there wasn’t an interest there.  When you have a registry of residents like we did and you have the contact that we did then we contact them on a regular basis, they become more than just a number.  They become a person.” (Interviewee who worked on registering respondents)

Slide 32:
Information quality is dependent upon many factors
Much depends upon how the community defines who they are targeting for enrollment.
Words mean something: 
“Can’t see” vs. “Severe Vision Problem” vs. “Blind, Legally Blind, Partially Blind, Night Blind” 
Information provided by surrogates (family member, guardian) often reflects their view of need, not the enrollee’s.
The elderly’s views of self-sufficiency, self-esteem, and pride often lead to non-enrollment:
“Senior citizens don’t necessarily classify themselves as being special needs. They think special needs are that, somebody with a special need.  Just because they are old does not mean they have a special need.  So they were reluctant to put their name on the list because they thought there were other people who needed to be on there.“

Slide 33:
Contact Information
Argonne National Laboratory Logo
Paul L. Hewett Jr., PhD
Deputy Director, Center for Integrated Emergency Preparedness
Decision and Information Sciences Division
Argonne National Laboratory
1301 Beaumont Court
Forest Hill, MD 21050-2408
www.anl.gov
240-426-1266 Office/Mobile
phewett@anl.gov

Slide 34:
Further Resource
 Emergency Registries for People with Access & Functional Needs
http://www.jik.com/d-rgt.html

What is a Registry?  
Emergency Registry Assessment Tool 
Flowchart: Deciding to Use an Access & Functional Needs Emergency Registry
Stakeholder Opinions of Registries
Registry Websites 
Papers, Presentations, Webinars, Resources

Slide 35:
Questions?

Slide 36:
Emergency Management and Preparedness - Inclusion of Persons with Disabilities Webinar Series – 2014-15
ADA Nat’l Network (Pacific ADA Center) teaming with FEMA’s ODIC
Monthly webinars – 2nd Thursday
2:30pm ET, 1:30pm CT, 12:30pm MT, 11:30am PT, 8:30am HT
ADAPresentations.org to signup

Slide 37:
Emergency Management and Preparedness - Inclusion of Persons with Disabilities Webinar Series – 2014-15
Lineup includes:
6 promising practices
6 sessions on important topics
First one will be October 9: Effective Communications for Deaf and Hard of Hearing in Emergencies – Candice Alder, Colorado Commission for the Deaf and Hard of Hearing