Impact Feature Issue on Disaster Preparedness and People with Disabilities

On August 27, 2005 as Hurricane Katrina threatened the southeastern coast of Louisiana, developmental disability service providers felt prepared for the storm and began implementing evacuation plans. Less than a month later, Hurricane Rita hit the southwestern coast. Our developmental disabilities agencies had significant experience and practice in hurricane evacuation and had disaster plans that were considered comprehensive and effective. These plans included detailed procedures regarding staff responses and multiple assurances for health and safety of people receiving services. What neither the developmental disabilities services system, nor most of Louisiana’s citizens, were prepared for was the aftermath of the two storms.

After the Hurricanes

Following the storms, communication from almost every source failed, making it virtually impossible for people to connect to their family members and the outside world. Important information that needed to be dispersed to people with disabilities, their families, providers and others could not be relayed. Support coordinators could not get in touch with participants; participants could not get in touch with providers. Agencies did not have adequate tracking systems to ascertain the current location of people. People who went to shelters often moved to other locations before we were able to assess, take action, and track these subsequent moves. The lack of available communication and the inability to track and coordinate program participants, providers, and staff significantly impaired the ability to reconnect people to the supports and services they needed. Almost a week after the initial hurricane, we were still unable to locate over 75% of people receiving waiver services and 50% of those receiving ICF/DD services. Four months later, we still had not accurately identified locations of 13% of waiver participants.

People who were not receiving services or who had limited family support struggled both in the evacuation process and in the aftermath. Transportation for people with physical disabilities was severely lacking, resulting in people remaining in homes with tragic consequences. People without identification were transported to unknown destinations; many were unable to provide information to assist with their identification and service provision. People were transported without necessary medical supplies and adaptive equipment. People were placed in nursing homes because of the lack of more appropriate shelter. Efforts to move people out of shelters were stymied by expensive or unavailable housing. Accessible housing was no longer an option. Over 20 months later, we still have people with developmental disabilities living in other states who desperately want to return to Louisiana; however, they are unable to obtain housing. No agency or system in Louisiana was prepared for the enormity of the disaster and our ability to respond was often slow and frustrating.

The State Agency Response

• Location and relocation of people with developmental disabilities.
• Reconnection of people to services.
• Management of prolonged evacuations of large institutions.
• Receipt and distribution of donations.
• Reestablishment of local offices.
• Distribution of emergency resources.
• Crisis response to those in shelters who have disabilities and mental health issues.

My personal efforts were focused on directing these activities, as well as working with our Medicaid bureau and coordinating with federal agencies on emergency rules, policy exceptions, and other administrative tasks to ensure people could continue to receive services and providers could continue to be paid for services. The disaster made it impossible to follow previously established rules, and exceptions were made on almost a daily basis. Louisiana is fortunate that the Medicaid agency is in the same department as our agency, so we were able to work collaboratively to devise creative solutions to assure access to care and the continuity of services. No statewide disability service system had ever been faced with such extensive dispersion of people, loss of direct support staff, extended shelter stays, loss of infrastructure, nonfunctional communication, extended evacuations, and loss of providers and housing.

What We’ve Learned

• Policies and Procedures. One of the key elements of an effective response is to have policies and procedures that clearly delineate and require specific responses by our developmental disability state and local governmental entities, providers, support coordinators, family members and advocacy agencies. Every stakeholder in the system must take responsibility for some part of the response effort in order for it to be effective. As we have moved forward in our recovery phase, we directed a statewide effort of individuals with disabilities, family members, providers, advocates and state employees to re-vamp our disaster strategies by utilizing our “lessons learned.” These groups have developed best practices manuals for providers and case managers. They also developed a “Take and Go Emergency Booklet” for people with disabilities and their families. We revised our statewide agency procedures to include all the things we learned about the many failures in communication systems, tracking systems, records management, billing systems, rules and regulations. Additionally, revisions of our new response system have required increased monitoring of individual and provider disaster preparations in order to assure that new procedures have incorporated newly established best practices.

• Communication Systems. It is critical that the response plan include procedures which will provide immediate communication methods that are practical and effective for stakeholders. We established new communication strategies to include more of the satellite, Internet and text-messaging systems since these worked well during the storms.

• Effective Transportation and Shelter Access. An effective system response must assure that wheelchair accessible transportation is immediately available to assist in evacuation from affected areas. People with disabilities must be able to immediately access living situations such as shelters or other temporary living environments. Evacuation sites that can be easily accessed and utilized for extended periods of time are being designed in Louisiana and should be a part of any effective plan.

• Tracking System. An efficient data system that can track and locate people for reconnection to family and services is essential to a viable, successful plan. We are working to develop an innovative tracking system that will track people from place to place in a non-intrusive manner and will work for those that have limited communication.

• Repatriation Options. The ability to have emergency contingency plans for community-based options in time of disaster must be addressed. It is critical to have access to emergency waiver or other community living options so that people can utilize those when family and community support systems disintegrate in the face of disaster. The lack of those options will ultimately mean unnecessary utilization of nursing homes and large facilities. Additionally, the ever-expanding barrier of accessible and affordable housing is an issue that must be faced if we are to be able to have a realistic plan for moving people back into disaster areas which have sustained significant loss of housing.

• Location of Residential Settings. Our disaster planning now includes a critical review of the areas in which state funded public and private residential settings are located in order to assure not only safe evacuation, but also health and safety in the aftermath. This planning resulted in the conversion of a large developmental center (serving 242 people) which was located in the “Red Zone (Critical flooding zone)” to a community based operation that serves 32 people in supported living and community homes. Review and consideration of relocating residential sites that are high risk for significant disaster is an excellent preventative strategy to consider.

• Workforce. The issue of our dwindling direct support workforce becomes even more critical in disaster situations. Response plans should include carefully planned disaster pay schedules as well as recruitment and retention strategies when the workforce leaves the area or is unable or unwilling to remain in an evacuation site.

This list is not all-inclusive; it is just an overview of those elements we found critical based on our experiences.

Conclusion

It is important to note that this article does not refer to the damaging winds or extensive flooding that were part of this particular disaster. Louisiana’s disaster really occurred because of the destruction of infrastructure. Such destruction could happen anywhere and from a number of causes. Our developmental disabilities services system sustained significant impact, and we are working to rebuild it and improve our disaster response, in the midst of a long-term care reform effort. While these challenges seem overwhelming, Louisiana is fortunate to have a committed group of stakeholders that includes public and private providers, self-advocates, advocacy groups, and dedicated state employees. We know that they can be relied on to work with us to not only rebuild our system, but also to make it stronger and more responsive to people.