After months of criticism, Puerto Rico has finally acknowledged the truth death toll of Hurricane Maria—not less than 100 people, as originally stated, but closer to 1,400, though a Harvard study estimated that over 4,500 "excess deaths" occurred during and shortly after the storm. While many following the inadequate response to the storm are concerned by these numbers, the disability community is particularly worried, because though the government hasn't openly expressed it, many of these very preventable deaths were likely associated with disabilities.
For one thing, almost ten percent of the deaths identified in the Harvard study were associated with "respiratory problems secondary to power outages," notes Marcie Roth, chief executive officer of the Partnership for Inclusive Disaster Strategies. That sounds much like a euphemism for deaths of people with respiratory conditions relying on BiPAP/CPAP, ventilators, nebulizers, and oxygen concentrators, Roth says. The elision of the disability community from conversations about what happened in Puerto Rico, though, is just a small part of a much larger problem.
The disability community is often left out of disaster preparation, both as stakeholders and in planning itself, Roth says. Before entering the private sector, Roth worked with the Federal Emergency Management Agency as the Head of the Office of Disability Integration and Coordination. During her term, she worked with the agency to improve services to the disability community at all phases of disaster planning and preparedness. Disability advocates have expressed concerns about ODIC's future under the Trump Administration. Roth's decades of experience make her the go-to authority on disability disaster planning, including state and federal policy, regional planning programs, and personal responsibility.
Disaster planning starts long before a storm makes landfall, a wildfire sweeps over the hillside, or a tornado touches down. It requires months or years of work to prepare for a variety of eventualities. Those eventualities include, Roth says, numerous exercises to perform preparatory dry runs that provide an opportunity to mess up, learn, and change policies in a setting that doesn't have life-or-death consequences. Disabled people, older adults, and parents of young children all have specific needs that aren't always well addressed in disaster planning—sometimes with horrific results.
During Hurricane Irma, for example, at least 12 patients at the Hollywood Hills eldercare facility in Hollywood, Florida, died when the facility lost power and was unable to maintain safe temperatures. A photo of nursing home residents (and their cat) in Texas stranded during Hurricane Harvey went viral, though everyone was eventually rescued. The needs of these communities shouldn't have been a surprise, but they were.
Dustin Rynders of Disability Rights Texas observes that states are reluctant to provide funds to help disability advocates be proactive about disaster preparedness, which makes it difficult for them to get a seat at the table during policymaking and training exercises. That can set off a compounding series of circumstances that lead to chaos when disaster strikes.
Roth notes that the law requires public accommodations—including sites and services used in disaster response—to be accessible. "Every federal dollar must be spent in compliance with equal access requirements," she says. "There are no waivers to the obligation to provide accessibility." But evacuation procedures and sites are not always physically accessible.
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In Florida, says Carol Stachurski of Disability Rights Florida, elementary schools are often used as evacuation centers, and their new construction makes them less likely to have access barriers. But poor planning may make those facilities unprepared to deal with disabled evacuees; people may be able to get in the door, but they won't find the services they need when they get there. Sometimes this happens because people to add their names to registries, making it hard for public officials to plan when it comes to medical and other needs.
Moreover, people may also be provided with confusing and conflicting messaging, like the news that they can add themselves to a "priority list" for restoration of power, something Roth notes is blatantly misleading, given the nature of electrical grids and the challenges inherent in power restoration.
Responding to disasters doesn't end when the skies clear, either. The long tail on disaster recovery can take weeks, months, even years, especially in states like Florida and Texas that have been hit repeatedly by severe storms.
That's hard on everyone, but for disabled people, it can have particularly high stakes. For instance, Disability Rights Texas is receiving complaints about housing discrimination, Rynders says, with disabled people struggling to find safe, accessible housing. He's particularly concerned about what happens to disabled people discharged from shelters without any support networks, fearing they could be forced into institutions rather than receiving the Home and Community Based Services and community supports they need to continue living independently at home.
These concerns are very real for people concerned about losing their homes and support networks in storms, but others didn't have them to begin with. Disability Rights Florida found itself embroiled in a debate over the Baker Act, which allows for involuntary commitment—state officials wanted to use the law to get homeless people who refused sheltering and other care into treatment, but the organization was concerned about the threat this might pose to autonomy. As officials worried over how to get people to safety, Disability Rights Florida wanted to take action, but also feared the long-term impacts of sanctioning this use of the law. Civil rights and liberties can become ensnared in disaster response.
For nondisabled people and those without disabled or elderly family members, concerns about resilient disaster planning may seem like an afterthought, but the stakes can be very real for those on the front lines. In an era where climate change is increasing the frequency and severity of disasters and communities are struggling to keep up, inclusive planning is extremely important—particularly when 20 percent of the population is disabled and an aging Boomer generation is finding itself with increasing needs. Without incorporating robust planning from the start, communities could find themselves facing another preventable tragedy like Hollywood Hills or Puerto Rico.
Disaster planners and disability advocates generally agree that the first step in the solution to this issue is involving disabled people and advocacy groups as early as possible and at every stage of disaster planning. This includes policymaking and procedural planning at every level of government, as well as public education and outreach to acquaint people with the actions they can take personally to prepare.
This planning also hooks into much larger issues that need to be addressed, ranging from housing policy to Medicaid benefits. Being disabled shouldn't be a death sentence in a disaster, but for people like Christina Hanson, a wheelchair user who died in last year's Tubbs Fire in Santa Rosa, California, that's exactly what it turned out to be.
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