The 2018 hurricane season starts on June 1st. According to the nation's leading experts on disability and disaster response, we're not ready. In fact, thanks to changes at the Federal Emergency Management Agency and clashes between disability groups and the American Red Cross, we might be even less prepared than we were a year ago. Meanwhile, for many disabled people in Puerto Rico and the southeastern United States, last year's hurricane season never really ended.
Every natural disaster quickly becomes a story about disability. The worst cases from last year—the elderly trapped in a nursing home in Texas or dying in a Florida nursing home; a Puerto Rican baby who needs a ventilator to breathe and had to flee the island then fight for health care on the mainland—all reveal the ways that extreme weather exacerbates pre-existing vulnerability. Behind these dramatic stories, as we reported at Pacific Standard last year, disabled people routinely find themselves turned away from shelters and unable to access emergency messaging, or else they just generally find that emergency responses weren't designed with the needs of disabled people in mind.
Meanwhile, we're just beginning to understand how terrible last year's storms were. A new report from The New England Journal of Medicine estimates that, although officially only 64 people died in Puerto Rico owing to Hurricane Maria, the actual death toll is at least 4,600. Of these, the authors estimate that at least a third died from "interruption of medical care"; they note that this finding for Maria is consistent with the aftermath of other natural disasters in the U.S., including hurricanes Harvey and Irma in 2017. The authors write:
Nursing home residents and those dependent on life-sustaining equipment were disproportionately affected. Growing numbers of persons have chronic diseases and use sophisticated pharmaceutical and mechanical support that is dependent on electricity. Chronically ill patients are particularly vulnerable to disruptions in basic utilities, which highlights the need for these patients, their communities, and their providers to have contingency plans during and after disasters.
Beyond the grim death toll, struggles continue for disabled Puerto Ricans who survived. In an overview of health outcomes in post-Hurricane Puerto Rico, researchers for the Kaiser Family Foundation argue that "children, elderly individuals, and people with disabilities have been particularly affected and face ongoing challenges, including loss of support as family members leave the islands."
Given the failures in Puerto Rico and hardships experienced by disabled survivors throughout the hurricane season, how are governmental and non-governmental organizations preparing for the coming months? FEMA divides the country into 10 regions, each of which is supposed to have a disability coordinator. Currently, three such positions lie vacant, including the disability coordinator role for Region IV, which includes Florida and much of the southeastern U.S. FEMA also has three Incident Management Assistance Teams, which are the first groups dispatched to the scene of any disaster. Each team currently has a disability inclusion adviser, but, according to Paul Timmons from Portlight and Marcie Roth from the Partnership for Inclusive Disaster Strategies—two experts on disability inclusion in disaster response—all three of the IMAT advisers have received notice from FEMA that their positions will be terminated. As Timmons tells me over the phone, "[FEMA's] plan is to push the center of gravity in disaster response back to the states." He's worried for himself, too, as a disabled man living in Charleston, South Carolina, which Timmons calls "a city at risk for a landfalling hurricane. If the IMAT team gets deployed in here early, there's no [disability inclusion] coordinator at the region; who am I supposed to talk to?"
Roth notes that ongoing disasters, such as the volcano eruptions in Hawaii, demonstrate the need to prioritize disability expertise at all levels of disaster response. In Hawaii, she says, "Folks who are deaf haven't been provided with video phones, so are not going to shelters." Instead, they are staying in their homes, despite the risk of toxic air quality. "Additionally, lots of folks with disabilities are being diverted from the shelters into personal care homes ... which are nursing homes." Now, according to Roth, disabled Hawaiians who were living independently are being institutionalized with no clear plan to restore them to their former status.
FEMA seems to take a much more positive view of the situation. Over email and phone, FEMA spokespeople tell me that they plan to hire coordinators for the vacant regions, while providing me with vague language about the importance of disability inclusion and collaboration. When pushed on specifics, though, they did not offer any detailed information but instead referred me to the 2018-2022 FEMA strategic plan. These boilerplate responses have not allayed my suspicion that the calls for reducing the "complexity of FEMA" reflect a goal to cut federal services even when they are necessary, a pattern we have seen play out repeatedly during the Trump administration.
When government fails to get the job done, non-profits can pick up the slack. In fact, the American Red Cross has a Congressional Charter empowering the organization to provide disaster relief. Here, too, I have found a discrepancy between a positive message from the Red Cross and the concerns of the disability disaster inclusion experts. The Red Cross, through a spokesperson, touts its relationships with "regional and local disability stakeholders." But multiple disability experts and organizational leaders, including Roth and Timmons, feel that their relationship with the Red Cross has never been worse. Roth tells me that the Red Cross is trying to choose which disability organizations they'll talk to, rather than allowing disabled leaders to take the lead. She says that she's reconsidering the whole model in which, she tells me, "responsibility for the civil rights of people with disabilities is relegated to volunteers."
"It is unacceptable that people with disabilities need to rely on the kindness of strangers to get their basic needs met, when in fact they have unwavering civil rights protections," Roth adds.
Two things should be clear. First, last year’s death toll in Puerto Rico reflects a colossal failure of our disaster preparation and response system. Second, if the experts from the disability community are worried, we all should be worried. Hurricane season 2018 is coming. Our systems must improve to prevent the needless loss of life before the next round of storms hit, but things seem instead to be going backwards. It may already be too late.