Disabled in a Disaster: Institutionalizing Hurts, Not Helps

This blog post was written by my colleague Ake Kankirawatana.

In the aftermath of disaster, displaced survivors just want to get back to their communities and loved ones. However, this isn’t always possible for disaster survivors with disabilities. That’s because many of them are involuntarily institutionalized, according to a new report from the National Council on Disability (NCD).

The NCD report found that many people with disabilities are institutionalized against their will in assisted living facilities, nursing homes, rehabilitation centers, psychiatric institutions, and other long-term care facilities during and after natural disasters like hurricanes and wildfires. Through focus groups and interviews with key informants from the Federal Emergency Management Agency (FEMA), the Red Cross, municipal offices for people with disabilities and other disability organizations, and disaster survivors and other stakeholders, the NCD found an alarming pattern of institutionalization of people with disabilities during and after natural disasters.

This finding is frightening, considering that out of the 47 million people affected by Hurricanes Harvey, Irma, and Maria, an estimated 12 million of them were people with disabilities.

Recent examples in the NCD report come from Hurricanes Florence and Michael in 2018. In North Carolina, people with mobility disabilities were admitted to nursing homes because they could not get access to the physical therapy that they needed in their communities. In Florida, people with disabilities “who were offered Temporary Sheltering Assistance in hotels and other settings by FEMA were not provided personal assistant services, accessible transportation, and other required accommodations,” leaving them unable to maintain their health, safety, and independence.

The unnecessary institutionalization of people with disabilities often arises as a result of a failure to provide people with equal access to emergency services during the course of a disaster. For example, a disaster-impacted person may choose to shelter in place because the local community shelter does not have wheelchair-accessible bathrooms. As a result, the health impacts the person may face from potential damage to their home can lead to hospitalization, which could result in institutionalization.

The lack of equal access to disaster-related programs and services is not only a precursor to institutionalization but a violation of federal laws. The Americans with Disabilities Act, the Rehabilitation Act, and the Stafford Act all provide legal protections that require the federal government and recipients of federal funds to provide equal access to federally-funded programs and services, including those that are disaster-related. In other words, people with disabilities must not be institutionalized if they can receive emergency services in settings that are most appropriate to their needs.

Unfortunately, emergency response plans often do not account for the needs of disaster-impacted people with disabilities. According to the NCD report, violations of the rights of people with disabilities include “knocks on doors to notify Deaf people of an evacuation; requiring people with mobility and stamina issues to wait in line for food and water; and lack of durable medical equipment in shelters.”

Once institutionalized, it can be difficult for people with disabilities to return to independent life in their communities. In some instances, survivors can’t even be located by their loved ones. In one case from the NCD report, several people who had been evacuated to a nursing home several hundred miles from their Texas residence after Hurricane Harvey in 2017 were not provided any accessible transportation back to their undamaged homes. They were unable to leave the nursing home until funding for their transportation was secured.

The financial and emotional cost of institutionalization also puts a heavy burden on people with disabilities and their loved ones. Research has shown that the cost of institutionalization often outweighs the cost of community-based services like accessible shelters. A 2009 NCD report found that the average annual expenditure for a state institution was $188,318 compared to $42,486 for Medicaid-funded home and community-based services. 

America’s population is aging and climate change is amping up the severity and frequency of natural disasters like wildfires and flooding. These dual forces put even more pressure on officials to develop and implement disaster plans that serve everyone. State and federal agencies should ensure that organizations led by people with disabilities have meaningful input into emergency planning processes. Agencies should also rigorously enforce existing federal laws governing disaster shelters and facilitate the return of inappropriately institutionalized people to their communities. Getting home after a weather disaster is hard enough, and government officials shouldn’t be making that return harder.