Impact Feature Issue on Disaster Preparedness and People with Disabilities

There is no single best approach to addressing the needs of people with disabilities in preparing for, responding to, and recovering from a disaster. There is much to do because of the historic lack of attention – so much that the task often appears overwhelming, leading to lack of any action at all. And the larger the population, the more daunting the task. Nonetheless, it is not a matter of if a disaster will occur, but when. Thus, it’s not a question of what to do, but rather the need is to begin to do something to help people prepare themselves, and to help existing emergency response systems to modify themselves to meet the needs of people with disabilities in our communities and states.

California’s Department of Developmental Services provides supports and services to 212,000 people with developmental disabilities, all of whom (but for 2,800) live and receive services and supports in a wide range of community settings. Each person has a service coordinator provided through a network of non-profit regional centers, along with direct service providers to support them. While some of the services and support settings are licensed facilities, at least 22,000 people receive supported or independent living services, thus they may not be with other people 24 hours a day. For those individuals there is an urgent need to become personally prepared for an emergency and able to either support them- selves in a shelter-in-place situation or to transport to a shelter. For those living in licensed facilities, there is a need for those facilities to ensure the preparedness of those they serve and their staff.

• To improve communications within and between the state and local services systems, the developmental services system is becoming part of an existing automatic emergency alert system currently in place for public health emergencies. This system will provide for timely and updated emergency/disaster alerts, both from state and local support systems. A key benefit in joining this network is that it will allow for alerts coming down from the State to local entities, but more importantly for alerts to be issued from local government to the network of non-profit regional centers, thus incorporating the developmental services system into local emergency response systems. As all emergencies are local, integration of the system of services supporting people with disabilities will have the effect of bringing more attention to their needs in local planning and response activities. Further, the system is adding communications technology to enhance the effectiveness of communications when traditional systems are not functioning. In addition to land lines, cell phones, and e-mail, California is adding satellite telephones and will be exploring options for use of HAM radio networks.

• California has just completed a comprehensive review of existing emergency preparedness plans in the developmental services system and identified many best practices as well as areas that require additional attention. Working with the regional centers, best practices will be shared among centers and providers, and guidance will be developed to assure plans address all key areas needed to maximize coordination, readiness, response, and recovery. Because of the vast size and population of California it is essential that plans address coordination between centers in the event one or more centers are rendered inoperable, so others can assume responsibility for supporting the consumers during the recovery process.

• Working with the California Office of Emergency Services, for the first time consumers with physical, sensory and cognitive disabilities are becoming part of the Standardized Emergency Management System (SEMS) working committees, thus integrating their needs and input into existing planning and response efforts.

On the local level, many consumer organizations, regional centers, and providers are engaged in a variety of activities addressing the eventual emergency/disaster that will impact their lives. Regional centers, in cooperation with local first responders, are sponsoring emergency preparedness meetings for consumers and providers, thus bringing the emergency response systems into conversation with people with disabilities. As available and accessible transportation is a key to evacuation in any disaster, some cities are conducting planning meetings with people with disabilities to better understand their needs and identify available transit resources. These conversations have enlightened both sides as to what might be expected from traditional transit systems and promoted the development of creative strategies. Use of transit system data to identify riders is one potential way to address the concept of registries for people with disabilities without having to develop new, costly and controversial systems. Some providers, as part of their service design, are discussing emergency preparedness and assisting consumers to better understand the issues and how to prepare.

• Development and distribution of consumer-friendly written and video materials for use in thinking about and creating a personal plan to ensure safety and security, and to assist consumers during an emergency or disaster. Implementation of consumer readiness planning needs to occur with assistance from peers, families, service coordinators, advocates, service providers, and friends so that each person has a personal emergency preparedness plan. It is not enough to simply gather and distribute commercially prepared materials about emergency planning, hang them on the refrigerator and expect understanding and implementation in an emergency. Plans must be developed by and with consumers to be realistic and ensure ownership, and then they must be practiced so they become routine.

• The availability of “to go” kits to assist with sheltering-in-place or sheltering elsewhere for people living in independent situations. History shows that staff who normally support consumers often will not be available or able to provide supports during an emergency situation, thus consumers may be on their own for some period of time. Consumers should have kits with essential supplies and information about the individual and their needs; the kits will serve as tools to maintain their health and safety and enhance the likelihood of appropriate treatment by emergency personnel. One of the greatest barriers in assuring these kits meet the needs of consumers is related to maintaining an up-to-date, adequate supply of necessary pharmaceuticals. Most consumers use Medicaid or Medicare to address their medical needs and California needs to explore how that system can become more flexible and allow for these essential kit items.

This is by no means a comprehensive report on all the activities being pursued at many levels to enhance the readiness, survivability, and recovery for people with disabilities when the next emergency hits California. It is, however, an indication that the issue has become a priority, and with continued consumer leadership and support from the service system will become part of our way of life, not just remembered after each event occurs.