Contents:

• Comments from diverse disability communities
• Comments from emergency planners, managers and responders
• References
• Feedback
  

 

The value of registries that focus on people with disabilities and people with other access and functional needs in emergencies is the topic of extreme, passionate, ongoing debate within and among emergency managers, planners and responders and the disability communities. Opinions vary from appreciation and ardent advocates to vocal opponents who voice grave concern and condemnation. [5 p.33]

Confidentiality, privacy, misuse of information, bias, preferential service and who has access to the data are areas of disquiet. These comments that follow from the literature and from personal communication with audiences and participants in a range of workshops, presentations and discussions, over the last two decades, represent and illustrate the diversity of these perceptions and debate.

Comments from diverse disability communities:

• Express concern that registries give people a false sense of security, even when they come with educational efforts and clear disclaimers.
• State repeatedly that it is "a lot about us without us," meaning the intended users are not included in the planning for or managing the effort.
• Question the rigor applied to the critical effort of keeping data current and accurate given the short self-life and perishable nature of registry data.
• “…they are expensive to build; difficult to maintain; and communicate the message that responders are coming to help you, when in mid- to large-scale disasters that is often not the case.” [5 p.5]
• Claim registries are inadequate approaches authorized by emergency managers who do not comprehend the complexity of disability-related emergency services.
• Registries reinforce learned dependency versus active and empowered thinking and actions, and can get in the way of developing a personal preparedness plan.
• Registries appear and disappear often due to competing funding and labor force priorities, and question the reality and the actual ability of the registry to carry out their planned response.
• In Florida some endorsed their registries, and have been complimentary of the registries regarding their effectiveness for pre-hurricane evacuations.
• Direct quotes from personal discussions:
  

• “Registries are often undertaken as a "reflex response" and a misguided and “easy planning fix" to the disability "problem."
• “I want them to know where I am and I want to be rescued.”
• “No how, no way.”
• “Is this the genocide list?”
•  “What about confidentiality, privacy, misuse of information, and who has access to the data?”
•  “What happens to the many who do not register?  Do only people who register get preferential service? “

 
Comments from emergency planners, managers and responders:

• “…. 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 …” [1 pp.3-4]
• California reports detailed serious problems in keeping registries current as well easily and quickly retrieving the data and responding when needed.  Individuals in charge of registries were unable to access the list because of power outages and lack of access to work sites. Lists provided to local fire stations were irretrievable because they were locked in cabinets, and all fire fighters were out fighting the fires. [5 p.]
• Helped to identify individuals who require specialized assistance in emergencies and provide immediate information to responders. [5 p.71]
• Enabled advance communication and education with vulnerable populations and may facilitate interagency collaboration [5 p.71]
• If not maintained regularly registries are ineffective in crisis. [5 p.71]
• “We have an informal registries through our community services such as Home Health Care rosters, Adult Protective Services, Public Health Nursing Staff, Public Authority, Senior Nutrition Program (clients who receive home delivered meals), and California Children’s Services for vulnerable individuals.” [5]
• “We intend to develop a database of organizations, agencies and other community stakeholders to respond with local government (identification, notification, communication, transportation, sheltering). We also intend to develop a database of facilities (skilled nursing facilities, Assisted Living facilities, etc.) where groups who may be expected to require additional assistance reside.” [5]
• “The act of creating a registry does not increase response capacity, but focusing on integrating community stakeholders in response does.” [5 p.]
•  “Resources to evacuate those with special needs and challenges will be limited during an actual incident, just as will resources in general in response to a fair size disaster. A concern is people may rely more on being evacuated than understanding their first “line of defense” should be to have their own evacuation plan with friends, caretakers, or others.” [5]
• “Local government should direct their focus away from developing plans based on knowing where individuals are, and integrate disability service providers, both community based organizations and government agencies, in planning and assisting during disasters and recovery. The integration of these organizations and agencies provide access to existing databases, which can remain under their control.”  [5]
• Registries have been established in communities across the United States, but respondents report that they have usually yielded mixed to negative results. [5 p.5]
• Registries don’t work because people don’t want to give their information and it’s too difficult to maintain (Dan Varner, Special Needs Program Coordinator, Arizona DEMA, Phoenix, Arizona). [5 p.6]
• “There are people in residential facilities licensed by the state, people who can afford private care, and they are on no one’s registries. Emergency management needs to not use a registry. It’s a nightmare to maintain and gives a false sense of security.” (Bill Vogel, Disaster Services Section, California Department of Social Services, Sacramento, California).[5 p.6]
• When laws require that counties have them you lose the voluntary aspect of the registry. When you have that requirement it strikes me as a round up. There are privacy issues there. [5 p.5]
• I am the keeper of the registry. Registration for the registry had to take thousands of calls when Gustav was in the Gulf. So the problem was we weren’t able to coordinate the right type of transportation for everyone because of the new registrations. (Evangeline Franklin, MD, former Director of Emergency Preparedness and Special Projects, New Orleans, Department of Health). RESEARCHER NOTE: As of this interview, there were no plans or resources for maintaining the registry beyond a message on 311 where, after following a phone tree, residents can register themselves. When we called 311, the opportunity to register was one of the last options on the phone tree.” [5 p.5]
• You have to set up a system that is realistic. Registries don’t work. That sets up the feeling that government is going to come rescue you, but that’s not happening (Richard Devylder, CALEMA, Sacramento, California) [5 p.5]
• “According to research with persons with disabilities who evacuated during Rita from Galveston], we found that the most vulnerable people knew they were vulnerable but didn’t take a proactive stance to do something about it. People were unable to leave their homes without assistance. Most were receiving some kind of services, but didn’t proactively enroll and they didn’t enroll in a registry. They knew they were going to be a problem, but they didn’t do anything [Registries] don’t work.” (Gretchen Stone, PhD, Educational Psychology, University of Texas Medical Branch, Galveston, Texas). [5 p.6]
• People don’t register. We had over 3,000 who needed help with evacuation and only 300 registered [in Galveston]. Researcher [5 p.6]
• Respondents were asked to discuss their experience with registries. Every respondent withregistry experience listed problems with registries and most reported that registries just were not working.  [5 p.5]

References

1. Hewett, P. 2013. Organizational Networks and Emergence During Disaster Preparedness: The Case of an Emergency Assistance Registry (Dissertation)
2. Governor’s Office of Emergency Services, Report on California Registries, Office for Access and Functional Needs, May 2008, http://www.calema.ca.gov/ChiefofStaff/Pages/Report-on-California-Registries.aspx  last accessed 11.5.13   
3. Kailes, J. 2008. Southern California Wildfires After Action Report, prepared in partnership with the California Foundation for Independent Living Centers and Center Disability Issues and the Health Professions at Western University of Health Sciences, Pomona, CA., jik@pacbell.net.  Formats: PDF, Text]] add link here
4. Norwood, F. Promising Practices for Evacuating People with Disabilities, National Institute on Disability Rehabilitation and Research, Washington, DC. Jan. 2011, http://www.disabilityevacuationstudy.org/Application1.html last accessed 11.5.13
5. Transportation Research Board, Communication with Vulnerable Populations: A Transportation and Emergency Management Toolkit, TCRP Report 150, 2011. http://apps.trb.org/cmsfeed/TRBNetProjectDisplay.asp?ProjectID=2611 last accessed 11.5.13

 

Feedback:

 
This is a work in progress designed to evolve based on new learning and continuous feedback. You are encouraged to refine its content, by providing additional resources, as well as feedback. Please include “Registry feedback” in the subject line of your message to jik@pacbell.net