In April 2005 a report from the National Council on Disability (NCD) advised that people with disabilities should be included in emergency planning. "If planning does not embrace the value that everyone should survive, they will not," the report warned. Four months later Hurricane Katrina made landfall, and most of the worst-case scenarios envisioned in the report became realities. These realities are the subject of a recent NCD position paper that documents the discrimination experienced by people with psychiatric disabilities during and after Hurricanes Katrina and Rita. The paper offers recommendations to ensure that future disasters will not so disproportionately affect this population.
People who had psychiatric disabilities before Hurricane Katrina were not a "niche population" in the areas affected, according to data cited in the NCD paper. The Department of Homeland Security has estimated that nearly 65,000 people living in the greater New Orleans metropolitan area before Katrina had a mental disability. However, post-Katrina articles, reports, and surveys have tended to focus on the psychiatric toll on people with no prior psychiatric history. Similarly, recent reports on evacuation and disaster planning for people with special needs have addressed the needs of elderly persons, nursing home populations, general hospital patients, and people with physical disabilities, the NCD position paper notes.
NCD, the independent federal agency charged with providing advice to Congress and the President on improving the lives of people with disabilities, interviewed survivors, advocates, and federal and state officials in Louisiana and in states that received evacuees. The investigations led to the five major findings presented in the position paper:
• In violation of federal law, people with psychiatric disabilities were discriminated against during evacuation, rescue, and relief phases.
• Mismanaged evacuations resulted in the mistreatment and inappropriate institutionalization of people with psychiatric disabilities.
• People with psychiatric disabilities were not included in disaster planning or relief and recovery efforts.
• Disaster management efforts often failed because no individual or office had responsibility for disability-related issues.
• Disaster plans were shortsighted, and relief services were terminated prematurely.
NCD investigators documented widespread violation of the civil rights requirements of the Americans With Disabilities Act and Section 504 of the Rehabilitation Act. Some shelters prevented people with psychiatric disabilities from entering, and others set up physical barriers to segregate them from other residents. Some operators sent "difficult" evacuees to jails, nursing homes, or mental institutions. "Special needs" shelters that were set up for people with disabilities served about 9,600 people at their peak, according to a survey cited by NCD. However, most of these shelters could not accommodate people with psychiatric disabilities.
In addition, the existence of special needs shelters sometimes served as an excuse to discriminate against people with psychiatric disabilities, the NCD investigators found. Shelters that had policies of rejecting people with obvious disabilities, such as those operated by the American Red Cross, sometimes referred people with psychiatric disabilities to special needs shelters, which also did not serve them. According to one Texas mental health official quoted in the report, "[We] were presented with many barriers by the American Red Cross, who would not let our outreach and peer support folks into the shelters." Red Cross officials in some shelters in Louisiana and Mississippi also turned away disability protection and advocacy groups, citing Red Cross policies.
Many survivors with psychiatric disabilities also reported discrimination by the Federal Emergency Management Agency (FEMA). Some were excluded from FEMA trailers because untrained FEMA employees made uninformed assessments and classified them as dangerous, despite reassurances from mental health professionals. Others noted FEMA's refusal to reimburse crisis counseling costs for people with preexisting psychiatric disabilities, because FEMA officials considered the sessions to be "continuing" mental health treatment.
Mismanagement of evacuations is the second major NCD finding. Although residents of some state facilities and group homes were successfully evacuated, officials did not have prearranged destinations for evacuees. Some were evacuated to states as far away as Massachusetts and South Dakota, and no system was in place to track people as they were moved from one place to another. Many mental health professionals interviewed by NCD investigators months after the disaster did not know where their clients were. In addition, many destination facilities could not provide psychiatric treatment or medications. A recurring theme in the interviews was that people with psychiatric disabilities were placed in nursing homes and institutions, not because they required that level of care but because there was nowhere else for them to go or because they needed medications that the shelters did not have. Some of the inappropriate institutionalization was the result of reception center triage by individuals with no training.
NCD attributed much of the mismanagement of evacuations to its third major finding—that people with psychiatric disabilities were not included in disaster planning or relief and recovery efforts. An exception was Houston, where a local coalition of government and nongovernmental organizations and faith-based initiatives had a corps of trained disaster volunteers ready to respond when Katrina hit. The coalition had reached out to the disability community during emergency planning and had received input about how to provide a wide range of services for people with disabilities, including people with psychiatric disabilities.
Mismanagement was also attributed to the failure of states to give responsibility, accountability, and authority for disability-related issues to a single individual or office. Evacuees and first responders reported that they received contradictory messages about disability issues from FEMA and the Red Cross. With the 2006 hurricane season now under way, it is unclear whether state and local governments have designated an emergency management official with stewardship over disability issues. The NCD paper cites the city of New Orleans as an example. The city's latest "Emergency Guide for Citizens With Disabilities" does not include information on how the needs of people with disabilities will be met. They are instructed to contact the mayor's office, which is the official contact point for all emergency-related questions.
Finally, NCD found that disaster plans were shortsighted and that relief and recovery services were terminated prematurely. This is particularly true for people with psychiatric disabilities, for whom mental health services were stretched thin in the Gulf states before Katrina and have not yet been restored in many areas. FEMA's long-term crisis counseling programs expired after nine months, and the paper cites accumulating evidence from other disasters that symptoms related to traumatic events often emerge months or even years later. For people with psychiatric disabilities who have returned to New Orleans, few services are available. All of the mental health facilities in the city have closed, and only two hospitals remain open. As late as May 2006 these emergency departments were turning away people with psychiatric disabilities and only 11 percent of New Orleans psychiatrists remained in the city, according to reports cited in the NCD paper.
The NCD position paper makes dozens of specific recommendations for the three branches of the federal government, for the executive and legislative branches of state governments, and for the American Red Cross. Across all groups, NCD calls for the inclusion of people with psychiatric disabilities at every stage of disaster and evacuation planning and in the administration of relief and recovery efforts. Many NCD recommendations are focused on preventing discrimination. The Department of Homeland Security should work closely with the Department of Justice to ensure that state plans meet the requirements of the Americans With Disabilities Act and Section 504 of the Rehabilitation Act. NCD also asks Congress to instruct the Department of Homeland Security to withhold reimbursement to state agencies and the American Red Cross if shelters are not accessible to people with disabilities and if evacuation plans do not address their needs. Another recommendation calls for changes to FEMA regulations permitting provision of crisis counseling and other services to people with preexisting psychiatric disabilities—and not for the short term but until state service systems are restored.
Some mental health and health professionals declined to serve people with psychiatric disabilities because they were concerned about liability. NCD calls on Congress to pass uniform "Good Samaritan" legislation applicable for a specified period in areas where a state of emergency has been declared. Although many states have such laws, they vary widely, and it is not clear whether they apply to the treatment of large numbers of people who are conscious and capable of informed consent.
Other recommendations for FEMA include changes in regulations to ensure that people with psychiatric disabilities are not excluded from FEMA housing without an evaluation by a licensed professional. FEMA should establish partnerships with protection and advocacy agencies and other advocacy groups and permit certified peer advocates to provide crisis counseling. The Substance Abuse and Mental Health Services Administration (SAMHSA) is the focus of many recommendations. In particular, NCD calls on SAMHSA to complete and rapidly disseminate the mental health toolkit that it is developing for first responders. The assessment tool includes a brief set of questions for reception center triage and a longer set for shelter providers to ensure that people are not inappropriately hospitalized.
State legislatures should ensure that the state has a FEMA Crisis Counseling Assistance Training Program grant filled out to the extent possible so that states can rapidly apply for federal funds after disasters. State executive branches should establish and publicize a voluntary statewide registry for people with special needs. NCD also calls on the American Red Cross to train employees and volunteers to work with people with psychiatric disabilities, especially in the area of shelter intake procedures, so that evacuees' needs are identified.
The position paper refers throughout to the more comprehensive April 2005 NCD report, Saving Lives: Including People With Disabilities in Disaster Planning. That report and the 18-page paper are available on the NCD Web site at www.ncd.gov.
Last month the Kaiser Family Foundation also released a report of key findings from interviews with Katrina survivors. The 55-page report, Voices of the Storm: Health Experiences of Low-Income Katrina Survivors, documents similar evidence of lack of planning for people with special needs and the inadequacy of short-term assistance for people whose service needs extend well beyond the period covered in emergency crisis plans. The report is available on the Kaiser Web site at www.kff.org/uninsured.