By June
Isaacson Kailes and Alexandra Enders
© 2014
Kailes, J. and Enders, A. (2014)
Contents:
Introduction
Needed
Research
Subject
matter experts
Emergency
registries may seem like an easy and logical
answer for addressing what are perceived as “special needs” for a small
segment
of the population. In reality, registry
issues are complex, and the needs when
functionally defined, are not special, and are not limited to
just a
small group of people (Kailes and Enders, 2007). Other parts of this
website
include a flowchart and assessment tool for making decisions about
using a
registry; a compilation of opinions about registries;
background discussion on what registries are,
and the types of registries used in emergency management; links to some
of the
existing registries, so you can see the variation that exists.
Introduction: Access and
Functional Needs
Emergency Registry
Access and Functional Needs
Emergency
Registry Assessment Tool
Symbolic Planning and
Access and
Functional Needs Emergency Registries
Stakeholder Opinions of
Access and
Functional Needs Emergency Registries
Emergency Registries:
Research
Access and Functional Needs
Emergency Registry Websites
Papers, Presentations,
Webinars
and Resources
Due
to scarce and piecemeal research on registries, there
is a lack of data for organizations contemplating creating and
maintaining
registries. Much of the available
guidance is hypothetical and untested, especially in large scale
emergencies. Opinions,
personal experiences, and
anecdotal accounts lack objective research, science and systematic
documentation. There is little to no documented evidence that when
activated
emergency registries for people with disabilities and others with
access and functional
needs have made a difference in protecting people’s life, health, and
safety.
“There
is little empirical information about the utility or the participation
levels
in registries. We do not have a systematic review of the use of
registries in
the literature nor do we have evaluation studies on customer
satisfaction, usage,
or feasibility. I would like to see some
hard numbers or comprehensive case studies of effective registries. We
can
write about them and describe them, but as researchers, it is hard to
promote
them when we know so little about their effectiveness.”
(L.
Stough, personal communication April 1, 2014)
Mary
Donny in her 2013 paper “Do Special Needs Registries
Make a Difference to Emergency Managers in their Decision-making?”
describes
the problem emergency managers have had knowing how many people with
disabilities and others with access and functional needs were in their
communities. “In order to
address this gap and locate
community members who have functional or medical needs, emergency
managers
across the nation created “Special Needs Registries” which may also be
called
functional, medical or vulnerable needs registries. Registries are now
found in
small and large cities, rural and urban settings. The
question arises as to the effectiveness
of the registries. Are the registries making a difference in emergency
management decision calculations? Are emergency managers using the
information
found in the registries prior to, during or after emergencies? Are
their
decisions informed by the information contained in the registry?” [1]
Literature
reviews in existing reports demonstrate the
paucity of research on the effectiveness of registries.
The few that exist are quite basic. For
example, in 2008, the California
Governor’s Office of Emergency Services Office for Access and
Functional Needs
surveyed 58 county emergency mangers regarding the use of registries in
planning for persons with disabilities; and the University of Texas
School of
Public Health at Brownsville in “Medical
Special Needs Assessment of Lower Rio Grande Valley” estimated that
350,000
people, about 1 in every 4 Rio Grande
Valley residents require transportation assistance for evacuation, but
only
11,000 have registered. A commentary
which will be published in the July APHA journal “Using Medicare Data
to
Identify Individuals Who Are Electricity Dependent to Improve Disaster
Preparedness and Response” reports that 15 of the 611 people in the
study had
registered in the city’s special needs registry. Norwood
(see Opinions, personal
experiences, and
anecdotal accounts ) raised many questions in “Promising
Practices for Evacuating People with Disabilities”. [2] Donny
surveyed emergency managers in three states where registries had been
established, focusing on use by emergency managers for decision-making
purposes. She raises the question: Are
registries an asset or a liability for emergency management planning?
[1]
Paul
Hewett’s 2013 doctoral dissertation “Organizational
Networks and Emergence During Disaster Preparedness: The Case Of An
Emergency Assistance
Registry” describes how “registries often
are recommended as the most useful, primary means of locating such
individuals
prior to, during, or after disaster. However, scarce empirical or
practice-based research supports this recommendation as practitioners
and
researchers have not evaluated and assessed the usefulness,
effectiveness, or
impact of emergency assistance registries.”
He suggests that “implications for
future practice include the need for (1) further research into
list-of-list and
service provider registration, (2) recognizing the inherent contract
caused by
registry establishment, (3) emergency managers aligning provided
services with
the hazards and associated risk registrants face, and (4) tailoring
providers’
disaster-related service delivery to meet individual registrant needs.”
There
appears to be more information on how to develop
registries versus why develop
registries. Registries have diverse and
complex elements which include funding, response capacity,
administration,
focus, recruitment of potential users (registrants), enrollment,
disclaimers,
education and outreach efforts, data management (information collected,
privacy, refreshing-maintenance, storage and retrieval), response force
commitments, and integration with other response systems.
Research
activities should always clearly identify the
purpose(s) of developing and using any registry.
Ambiguous research is a waste of time and
resources. The issue of registry
purpose: “why is the registry being developed?” is central to any
investigation. All other questions flow
from this essential, but frequently overlooked issue. If
there is lack of clarity about what the
registry is supposed to be
doing, then it is impossible to evaluate its effectiveness or how, if
and when
this tool is achieving its objectives. There
are additional questions such as:
-
What are the implications of developing a
registry for planning purposes, for operational response purposes, or a
combination of the two?
- What gets left
out or overlooked?
- Are registrants clear
about what they registering for?
What
is the current status of the use of emergencies
registries in the U.S. and internationally.
-
How
many registries are in place? In
use? In development? What
are the initial, ongoing, and projected
costs?
-
Which
state or local entities have laws/regulations/policies
on the use of registries? Are they
mandatory or recommended? (These supporting documents should be
complied in a
database.)
-
Are
there requirements for local jurisdictions
to maintain a registry
in order to get emergency management funds?
What is the implementation status and impact of such policies?
-
How
many people are included in each registry? What are the
inclusion/exclusion
criteria?
-
Comprehensively
examine, from the developer’s
and activator’s side, registry elements such as costs and
sustainability;
effectiveness (successes and failures); geographic coverage; event
specific and
scale of event specific issues; and the essentials of promising
practices.
-
Is
there evidence for promising practices?
-
Examine
issues related to registry
performance from the perspective of the people who are included in the
registry
(registrants), and the people who will use the registry in emergency
response
(responders).
-
Document
the problems that jurisdictions who
have created and implemented registries have encountered, as well as
the solutions
considered in resolving these problems?
-
Scale.
When and what type of registries are
most likely to work? Examine the use of
registries in emergencies ranging from small personal emergencies to
large
disasters; range of hazard types; include geographic spread, duration;
warning;
infrastructure damage, especially communications and transportation,
etc.
Develop
an initial set of indicators which will permit
objective evaluation of existing or prospective registry. Even if the
registry
is intended primarily as a planning tool, the criteria should include
factors
from the perspective of the (registrants), and the people who will use
the
registry in emergency response (responders).
There
are a range issues related to matching expectations
with resources and outcomes that would always require active
involvement of participants/registrants
in any analysis.
-
Compare Expectation to Capability. Compare
the registrants’ expectations with
the responders’ capabilities for each scale, incident, and hazard type
used in
the analysis. This should be
bi-directional: identify what the
responder capability would need to include in order to match the
registrant’s
expectation; identify what a realistic
registrant expectations is, that will match response capability;
identify
discrepancies between registrant expectation and responder capability -
the
mismatches, differences in resource capacity, timeframes, etc. Look
through the range of opinions
about registries for further details about perceived mismatch.
-
How to effectively include and connect registrants,
responders and those who will plan, develop, maintain, update, and
support the
registry in the registry development and maintenance?
Location
at time of event. Residential location produced
by typical data collection methods (lists of lists, census data, and
registries)
does not account for actual location at the time of the event. Many
registries
operate under the inaccurate bias that most people with disabilities
are in a
fixed location and easy to locate because they are “homebound.”
-
How are transient populations of tourists, visitors,
business travelers, for example people travelling through an area via
bus,
train, plane, and private vehicle) identified and integrated into
registry-
oriented planning and response?
Not
all people with access and functional needs are in
human service systems. When using the lists of lists approach how will
people
not in any service system be included. This
was major issue in the New York City class
action suit Brooklyn Center for
Independence of the Disabled (BCID), et al. v. Mayor Bloomberg, et al.
In addition, many people who may not identify as having a disability,
but have
access and functional needs which would cause them problems in an
emergency
where these needs have not been otherwise incorporated into whole
community
planning. These people could create a
safety profile in a system like Smart911, which is open to the entire
community
in any jurisdiction which subscribes to the service, not just a select
few
categories of people viewed as vulnerable.
Concerns
about personal privacy, access to personal data
are important considerations (see opinions
section). Studies
are needed which analyze the legal and
ethical issues involved in the balance between individual privacy and
security.
A recent example includes: U.S. Mines
Personal Health Data to Find the Vulnerable in Emergencies, by Sheri
Fink, New
York Times May 15, 2014 http://www.nytimes.com/2014/05/16/us/us-mines-personal-health-data-to-aid-emergency-response.html?smid=fb-share&_r=1
[H2]
Prioritization of response and resources
-
Do only people who register get preferential services,
either explicitly (stated upfront) or implicitly (defacto, because
these are
the known people, on lists of lists, etc.)?
-
What happens to the many who do not register?
-
If only people with certain categories of access and
functional needs are included, what about the others?
- Does lack of a
two-way communication system (between responder and registrant) put
responders
at risk (wasted trips and wasted time– when the person may not actually
be at
that registered location or may be there but may not need assistance?
-
Conventional wisdom (and maybe urban myth) describes
registries for people who need priority utility restoration, priority
snow
removal, priority debris removal. More data is needed on if and where
these
programs exist, and if they do, if they have been used, and found to be
effective.
Many
registrants view these registries as a promise or
guarantee that assistance will be provided no matter how clear and
strong the accompanying
legal disclaimer. Can registry sponsors
legally and morally actually shed responsibility by simply adding a
disclaimer?
The
implicit contract with registry participants created
by the existence of a registry, needs further investigation. This
includes
legal questions, ethical questions, and practical response questions
The
opinions
section is fertile ground for developing behavioral research questions.
-
Why
don’t people register when provided with
the opportunity to do so?
-
Are
disclaimers effective? Do registries
offer a false sense of security, even with educational efforts and
clear
disclaimers?
-
Do
registries reinforce learned dependency?
-
Do
registries diminish and divert the energy
people should devote to: personal preparedness plans including putting
effort
into thinking through and taking steps to establish and keep current
personal
support systems?
The
above research issues and questions are based on old
concepts, old technology and old medical model biases about people with
disabilities and others with access and functional needs.
The
most meaningful research approach should look forward
by exploring the use of existing and future technology.
-
How
could newer technologies such as Global
Positioning Systems, sensor technologies, and “check in” and “find
me”
apps that offer two way communication capability help communicate with
those
who actually need assistance as well as eliminate wasted time and trips
by
first responders?
-
How
effectively is or can registry-type data be embedded with / interface
with
other response systems and planning tools, such as alert and warning
systems?
Research
budgets and scope should include support for an
active subject matter expert panel which includes registrants,
responders, and
planners in the process throughout the project.
jik@pacbell.net
© 2014 June Isaacson
Kailes, Disability Policy Consultant, All Rights Reserved.
Created 05.17.14 |
Updated 07.10.14