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People with Disabilities Often Face ‘Institutionalization’ During Disasters

While the federal government requires that persons with disabilities not be placed in long-term care facilities, these requirements are often waived during disasters, allowing for the institutionalization of some people.

Those in emergency management and public safety try to include vulnerable populations in pre-disaster planning to account for their needs and keep them safe during emergencies, including people with disabilities.

Unfortunately, this segment of the population often gets lost during disasters to the point where they are commonly institutionalized. This means they are put in a “medical environment” that may or may not meet their needs. Those environments include rehabilitation centers, nursing homes, psychiatric institutions, assisted living facilities and other long-term care facilities.

This results from a lack of planning, lack of services in the community for people with disabilities, and the waiving of legal protections for people with disabilities.

Most people with disabilities don’t need acute medical care, but more along the lines of accessible bathrooms, accessible entrances, access to a refrigerator for their medications, and perhaps, backup power to plug in their medical devices. Most don’t need a higher level of care after a disaster than they had before it.

Yet, people with disabilities often get cut off from their support systems and the general population and end up being evacuated to long-term care medical facilities and there is often no way to track where they were taken.

“It happens very frequently,” said Marcie Roth, CEO of the Partnership for Inclusive Disaster Strategies, and the principal investigator of a recent report published by the National Council on Disability.

Oftentimes it is the people themselves, who find themselves wondering where they are going to go to get their needs met and end up at a long-term care facility. “Rather than having a community plan before the disaster where folks have adequately planned for the kinds of supports and services to be available at the general population community centers, we often find ourselves in a situation, at that point where, because they haven’t planned, [people with disabilities] think they have no alternatives,” Roth said.

“Added to that,” she said, “is the ongoing challenge where many people will then approach the needs of people with disabilities from a medical model perspective, thinking surely a person with a disability is going to need acute medical care.”

Sometimes they are evacuated to those institutions by local first responders. It’s at that point where they get “lost.”

“There is no reliable system for keeping records of people who may have been evacuated,” Roth said. “For instance, people may be evacuated by a local official, who then takes them to a shelter or a parking lot of an emergency room, then the tracking is over.”

Some are sent to hospitals, where there is a record, but hospitals often send these people to long-term care facilities because of the need for beds at the hospital.

Roth said states and emergency managers are in a bind when it comes to knowing what to do because of “mixed messages” by the federal government.

The Department of Justice, in its 2007 Americans with Disabilities Act Tool Kit, said, “People should receive services in the most integrated setting appropriate to the needs of the person, and only persons who require the type and level of medical care that would ordinarily be provided by trained medical personnel in a nursing home or hospital” should be placed in one of these more restrictive settings.

But the Department of Health and Human Services Centers for Medicare and Medicaid Services issues waivers to institutionalization rules during disasters, allowing states to place people with disabilities in these settings. 

Normally, a person can only be taken to a long-term facility after a three-day hospital stay, but the waivers allow them to be taken “from their driveway to a nursing home,” Roth said.

Some people with disabilities, often those who are homeless, can end up in psychiatric institutions. “In Florida [after Hurricane Michael] there were threats of institutionalizing homeless people who didn’t want to go to shelters, often for good reason,” said Melissa Marshall, who was the director of Research for the National Council on Disability for the study.

Roth said these waivers have been issued for “all of the major disasters recently.”
According to the Centers for Disease Control and Prevention, 47 million people were impacted by hurricanes Harvey, Irma and Maria, and of those an estimated 12 million were people with disabilities.

The National Council on Disability report:
•    Examines how, when and why people with disabilities were institutionalized during recent disasters
•    Provides recommendations for appropriate federal agencies to mitigate institutionalization of persons with disabilities in future disasters
•    Illustrates the multiple scenarios in which people with various types of disabilities are institutionalized rather than sheltered in the community or placed back into the community following a disaster
•    Examines the systemic issues that continue to cause institutionalization of persons with disabilities, such as misperception of the abilities of people with disabilities; lack of actual physical access to shelters; insufficient staffing; and lack of expertise in shelters, leading to such problems as biased intake procedures
•    Describes efforts to obtain data that illuminates and quantifies the occurrence of the issue
•    Discusses the grave, short- and long-term physical, mental and financial consequences that institutionalization wreaks on a person with a disability as well as the financial burden it places on the community in contrast to the costs of in-community support.