Report on California Registries
On March 28, 2008, the Governor’s Office of Emergency Services (OES), Office for Access and Functional Needs (OAFN), sent a survey to the 58 County emergency managers, which was shared with cities, regarding the utilization of registries in planning for people with disabilities. The purpose of the survey was to learn more about the prevalence of registries in California as well as issues, concerns, and have they been tested?
Following is a breakdown of responses.
Total surveys sent: 58 Counties
Total respondents: 45 Counties & Cities
Have registry: 14
Don’t have registry: 31
Very Effective: 5
Fairly Effective: 4
Five respondents did not rank the effectiveness due to the registry being under development or the registry had not being tested during an event. Thirty-four respondents felt that further discussion on registries was needed.
The number of individuals on the registries varied from a low of 50 and high of 584.
What follows are a few selected comments from responders:
“The act of creating a registry does not increase response capacity, but focusing on integrating community stakeholders in response does.”
“Lists are only as good as the public being able to provide information or wanting to provide information. The lists are also very time consuming and require a large amount of staff time to maintain.”
“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.”
“We have an informal registry through our Home Health Care and Home Health Care rosters, IHSS, Adult Protective Services, PH Nursing Staff, Public Authority, Senior Nutrition Program (clients who receive home delivered meals), and CCS for vulnerable individuals.”
“I believe that registries require a lot of discussion - there is an impression that they are used day to day for response - and this is usually difficult to explain. Citizens don't understand the fire, law, EMS use different dispatch systems that don't access common registry information, etc.”
“There is also a public expectation that being on a "registry" means that the appropriate response will occur - during disasters there are usually not enough resources to respond to each registered person.”
“We make every effort to let folks know this registry is NOT a promise that we will come and save you in a disaster. We are concerned about liability.”
“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.”
According to the U.S. Census of 2000 there are over 49 million people five-years of age or over in the United States and almost 6 million in California who identify as having a disability. The Census estimates that by 2010 the number of individuals with disabilities will exceed 11 million, in California. In 1999, the United States Supreme Court issued a decision in Olmstead v. Zimring (119 S.Ct. 2176), in which the court concluded that States are required by the Americans with Disabilities Act (ADA) to place persons with disabilities in community settings rather than institutions. It is imperative based on lessons documented in recent disasters, the integration of people with disabilities into community living and an aging population that realistic expectations be adopted and policy established to ensure that emergency management plans integrate disability programs and resources.
The survey concludes the purposes for utilizing registries vary across California and that concerns exist with liability and expectations. The majority of people with disabilities, just as the general public, are active day-to-day going to school, working, traveling, exercising and volunteering. Therefore, the State and local governments cannot depend on registries alone and place the responsibility on individuals to “register themselves” as a means of planning.
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.
1. Develop guidance on the integration of disability programs and resources into emergency management systems. The guidance should focus on the many areas of emergency management including communication access, transportation, sheltering and recovery.
2. Review existing registry requirements in the California Emergency Services Act and develop recommendations that lead to the adoption of policy that integrates disability programs and resources into emergency management systems.
Responses were received from the following jurisdictions: Alameda, Amador, Butte, Clovis, Colusa, Contra Costa, El Dorado, Emeryville, Fremont, Fresno County, Fresno City, Glenn, Imperial, Inyo, Kern, Kings, Lake, Los Angeles County, Madera, Mariposa, Merced, Modoc, Mono, Moorpark, Napa, Oakland, Orange County, Plumas, Riverside, Sacramento, San Diego County, San Francisco, Sanger, San Joaquin, San Luis Obispo, Santa Barbara, Santa Cruz, Sierra, Siskiyou, Stanislaus, Tulare, Tuolumne, Ventura, Willows, Yuba.
Survey Questions & Responses
The County or City has been removed from the responses.
1) Does your county/city currently use a registry?
YES _____ NO _____ if no skip to # 7
If you had a registry but it no longer exists, please explain.
Have registry: 14
Don’t have registry: 31
· Not a formal (registry). We have an informal registry through our Home Health Care and Home Health Care rosters, IHSS, Adult Protective Services, PH Nursing Staff, Public Authority, Senior Nutrition Program (clients who receive home delivered meals), and CCS for vulnerable individuals. DHHS works closely with the Sheriff’s Office OES and the Fire Chiefs are an excellent resource in the smaller communities. An Auto Dialer was purchased for auto calling; all of the rosters from the above-named programs/agencies are programmed into the system. No one person can be dedicated to this project due to funding, this is a concerted effort between (sic) many agencies.
· The County Operational Area is in the beginning stages of developing a plan to address Specific Need populations. Our planning efforts will organize around three demographic groupings:
o Medically Fragile and Mobility Challenged
o Cognitive and Sensory Issues
o Resource Challenged
· 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.
· We do NOT plan to develop a database or registry of individuals with Specific Needs. We see a variety of problematic issues with this approach, including:
o Impossible to determine if the registry is complete or accurate
o Insufficient resources/staff to keep such a registry current, even if it were initially complete and accurate
o Such a registry could provide a clear path to more vulnerable persons should the security of the database be compromised
o The act of registering may create an unrealistic expectation that first-responder resources are assured and
lead to decreased individual planning/response
o The act of creating a registry does not increase response capacity, but focusing on integrating community stakeholders in response does.
· Human Services Agency (HSA) has some lists of individuals but it is limited. The list only contains those that have asked for direct or monetary assistance. The list is not exhaustive. The list is confidential – if necessary, HSA may be able to do notifications but not provide contact information to other entities. The list only contains those individuals that have asked/applied for assistance. The list may or may not contain specific medical concerns/issues for persons on the list.
· We maintain a registry for the cities (three) because we are mandated to do. We also have a special needs registry for the Fire Burn areas. Otherwise registries we rely on are the IHSS and other Social Services lists.
· Some cities in County have tried to start to collect information but there are problems with getting the information, staff time and liability.
· The County Department of Social Services, Office on Aging and Child Protective Services track their clients but there is no COUNTY-WIDE registry for people with disabilities.
· Registry’s (sic) are kept by county VOAD’s, such as American Red Cross, Salvation Army, Church World Services, these groups are aware of special circumstances and needs of evacuees, and are notified through EOC, PIO and JIC.
· There is no longer funding for the Disaster Registry for Seniors and People with Disabilities in (city) and hence it was discontinued. Of the roughly 11,000 people that were on the disaster registry, perhaps 10,000 of them are names of persons that are on the IHSS database at our Human Services Agency.
· Maintained by the County for the Op Area, but it actively only includes the Emergency Planning Zone. However, we register anyone from anywhere in the Op Area who files a registration card with County OES.
· Under development by Health Department.
· We are working on a registry with Human Resources for disabled/handicapped persons but whether it is going to be populated by County researchers or a self-registration process is undetermined at this time. It won’t be done for some months.
· A registry is in the process of being assembled. This will be part of a database that can be used as input to the County’s Reverse 911 system, as well as used by an individual to follow up directly with a client.
· There is a special district (Fire) within the operational area that does have a registry. It is less than a year old, so there isn't much feedback. They do assess an annual fee to be listed on the registry.
· Identification of Special Needs and Medically Fragile.
2) What is the purpose of your registry?
_____ Other (please explain)
· To maintain contact with and take care of vulnerable populations during any form of emergency, i.e. heat, cold, flood issues.
· You Are Not Alone (YANA) is to check in the elderly on a daily basis to see how they are. We used this registry in January during the severe cold and extended power outage.
· Our plan will focus on identification, notification, communication, transportation, sheltering and recovery issues.
· Advisory to assist in response efforts of first responders.
· Identification of special needs and Resource Registry.
· More of a Task Force with the special needs population care givers to assist with evacuation planning, notification for evacuation and to assist with finding shelter if need be. All facilities / agencies with special needs populations are encouraged to attend and network with our task force for the betterment of their clientele. Other individual persons with special needs are able to solicit help with the above by filling out a form on our web site and submitting it or mailing the form directly to Public Health.
3) How long has the registry been in existence?
· It is a very basic registry through IHSS and Elder Care Support Services. We know it’s by no means complete, but has helped us in some planning efforts to identify clusters or individuals in remote areas.
· The use of rosters has been in place for many years. Public Authority is new (5 years).
· Database in the planning stages.
· One year in funding for Resource Directory, this year promotion of Registry.
· It is very difficult to keep the information updated and since it is voluntary, we only have a small portion of those eligible enrolled.
4) Approximately how many people are registered?
366 out of a potential 150,000
5) Has the registry been utilized in an emergency? If yes, please comment (when, process for utilizing, department/section responsible, etc.).
· The current methodology has worked well for…...
· During severe weather (heat and cold) periods.
· The Inyo County Health Department used the registry to notify the infirmed (sic) that there was a heavy snow storm approaching and if they needed assistance getting supplies and meds we would be happy to be of assistance.
· It was utilized in December 06 during the…… Fire by the Asst. City Manager’s Office who received directive from the EOC director. We compared the streets affected by the evacuation order with those persons listed on the registry and found that none were in the evacuation path. This allowed us to have high confidence in the registry’s usefulness.
· During disasters, earthquakes, and floods for the most part. This is a County Health and Human Services client list, primarily frail elderly. Notification is shared with this county department and our local volunteer center.
· During 911 emergency calls, a citizen’s medical condition and medication information as entered in the registry was relayed to firefighters by our central Dispatch unit.
· The …… registry has been used during drills and exercises only.
· The ……. Fire registry has been used for the past 3 potential debris flows during the rainstorms.
· The IHSS and other Social Services list were used last year during the heat wave in September.
· They are in our ……. system to alert first if evacuation is necessary.
· Used for a relatively small evacuation of the city in 2001 due to a hazardous materials incident in the city.
6) How effective would you rate the registry during the disaster operation mentioned above?
Very Effective _____ Fairly Effective _____ Not Effective ____
Very Effective: 5
Fairly Effective: 4
Five respondents did not rank the effectiveness due to the registry being under development or the registry had not been tested during an event. Thirty-four respondents felt that further discussion on registries was needed.
· Some individuals use home health care from outside the County, those are difficult to capture and record. Also, privacy issues.
· Lists are only as good as the public being able to provide information or wanting to provide information. The lists are also very time consuming and require a large amount of staff time to maintain. The ……. list only has 366 people on it but requires many hours to update.
· Very effective, but this was a small evacuation with resource available and there was time to evacuate since it was precautionary.
7) Do you feel that further discussion and/or guidance is needed around the issues of registries? YES _____ NO ___
34 respondents felt that further discussion on registries was needed.
· We make every effort to let folks know this registry is NOT a promise that we will come and save you in a disaster. We are concerned about liability.
· Following the January storm disaster, we conducted a community survey to find out how people responded with extreme cold weather and extended power outages. In addition, how we could notify them about warming centers – also what things did they need to get through this period. (See attached summary of the results.)
· Have a list of social service agencies and those social service agencies maintain registries. No registry is able to capture 100% of the special needs residents.
· I believe that registries require a lot of discussion - there is an impression that they are used day to day for response - and this is usually difficult to explain. Citizens don't understand the fire, law, EMS use different dispatch systems that don't access common registry information, etc.
· There is also a public expectation that being on a "registry" means that the appropriate response will occur - during disasters there are usually not enough resources to respond to each registered person.
· From the emergency management point of view - how do we validate a registration. Look at how handicapped parking permits are abused – I can only imagine how desperate or unscrupulous citizens might try to use the system.
· A registry for the purposes of identifying those with special needs during an emergency seems like a necessity. We will be working on this with our local Health Department and other cooperators.
· Guidance would be appreciated on how to convey the situation that information entered into a registry will not necessarily guarantee assistance during a large-scale emergency or disaster.
· Some issues needing discussion are: Liability, who is responsible, multiple lists, database types, and there are more questions, as well.
· To keep consistent and up-to-date registry’s and there are appropriate contacts and availability of facilities.
· Specifically, are there any jurisdictions in California that have a registry in place?
· 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. Of course, resources will be used as best as possible to get to all of those on registries but it can never be as prompt as any of us would like, at least in a breaking “down and dirty” situation with a need for immediate evacuation.
· Please note that I have worked our Agency on Aging, PG&E, Red Cross and others to try and develop a plan to execute during a disaster concerning our special needs population. Our OA is current revising EOP that may include such information.