How California’s emergency plans fail disabled communities
Kelley Coleman’s 9-year-old son had two days of his medication left. Then the evacuation order hit.
Kelley Coleman was vacationing in Santa Barbara, California, when the evacuation order came. It was New Year’s week, and Kelley’s two sons, third and fifth graders in Los Angeles’ Studio City neighborhood, were enjoying the last of their school holidays. Aaron, 9, Coleman’s youngest — a boisterous, enthusiastic child — relished splashing around for hours in the Pacific’s briny, biting cold.
Rain was forecast that week, not unusual for January on that part of California’s central coast. For days, it drizzled. Then, late on the last day of their vacation, Coleman’s cellphone buzzed. It was an emergency notification: Heavier rains were coming, and with them possible flash floods, falling trees and landslides capable of tearing homes from their foundations. Residents across Santa Barbara County were told to evacuate.
Immediately, Coleman called the nearest pharmacist. If they were evacuated, she thought, how would they get Aaron his medication?
Aaron is a medically complex child. In addition to taking a daily medication for epilepsy, he has a variety of sensory impairments and relies on a feeding tube. Coleman’s life is built around rituals of readiness: She keeps go-bags in the car, at school and at a neighbor’s house with backup tubes, formula and replacement parts for the port in Aaron’s stomach. But she cannot keep backup medication; the federal Food and Drug Administration’s policies for controlled substances prevent people from getting refills until their prescriptions have nearly run out. Coleman had refilled Aaron’s medicine just days ago, but the bottle was back home in Studio City.
Aaron had just two days’ worth of medication left, and the rains were falling harder.
Disabled people are up to four times as likely to be critically injured during disasters.
THE FIRST SERIES of back-to-back storms hit California on Dec. 23. Over the next three weeks, 32.6 trillion gallons of rain fell in the state, equivalent to the amount of water consumed by the entire United States in 101 days.
Disabled people are up to four times as likely to be critically injured during disasters. Accessibility is not mentioned in federal climate adaptation or mitigation plans, but California’s Office of Emergency Services (OES) has been trying to address the needs of disabled people. As far as “inclusive planning” goes, California leads the country, said Vance Taylor, chief of OES’ Office of Access and Functional Needs. Disabled people help draft emergency management policies, and during a crisis, the agency aims to quickly provide emergency shelters with medical-grade cots, accessible showers and backup medication.
After Aaron was born, Coleman became a disability advocate. In 2017, when Southern California had what was then a record-breaking fire season, Coleman called local shelters, offering to provide extra feeding tubes for families in need. She is currently writing a book she describes as a “CliffsNotes” for new parents of disabled children on navigating marginalization. With the evacuation looming, Coleman called her doctor, her insurance company and her regular pharmacist. She ended each call feeling increasingly determined to find a way to ford the floods. She didn’t know that the state-run shelter’s staff could have helped her get access to Aaron’s medication. And therein lies the problem: When members of the disabled community most need emergency services, OES’ outreach fails to find them.
These gaps are compounded by other problems: The state-level plan doesn’t work unless the counties charged with executing it comply, and currently some county-level plans fail to even mention the word “disability.” In some areas, alerts are only issued in English, even though nearly 45% of California families speak another language at home. And many counties do not keep track of the number of residents with functional access needs, despite an OES mandate that requires it.
The state-level plan doesn’t work unless the counties charged with executing it comply, and currently many county-level plans fail to even mention the word “disability.”
Alex Ghenis, deputy director of the climate change and disability nonprofit Sustain Our Abilities, says that the program’s greatest weakness lies in its inability to directly resource community members. California’s emergency plans do not fund backup wheelchairs or permanent battery backup for disabled residents. According to Coleman, no amount of privilege, financial or otherwise, can wholly insulate a person with a disability from medical gaslighting, interpersonal ableism and systemic institutional abandonment. State-led programs operate under the mistaken assumption that it is possible to be disabled in America and trust the state to keep you safe. California’s emergency services are built around the idea that the individual — any individual — can simply find a way to make it work.
Publicly, OES has done little to address these missteps. Even after a 2019 state auditor’s report found that the three deadliest wildfires all occurred in counties whose emergency plans failed to adopt foundational aspects of inclusive planning, the agency has yet to release a post-incident report. In a phone interview, Taylor told me he acknowledged the progress OES needs to make. “I don’t want to paint a picture that says that it’s perfect,” Taylor says. “We’re not going to raise the ‘mission accomplished’ banner.”
Twenty people died in early January’s deluge. OES has no idea whether any of them were disabled, because, despite overwhelming evidence that disabled people are the most likely to die in disasters, the agency does not track the data. “You’d have to speculate the percentages,” said Diana Crofts-Peyano, the assistant director of OES’ crisis communication and public affairs.
This year’s rains have been significant, but they are far from unprecedented: As High Country News reported recently, the atmospheric rivers slamming the West Coast compare to historic storms in the past. As recently as 2017, the San Lorenzo River near Santa Cruz reached similar levels. But climate change could mean that such storms could be more frequent going forward. Meanwhile, Californians who live with a disability are twice as likely to live in flood zones. Overall, the number of affordable housing units — typically the most attainable for disabled people, who are more than twice as likely to live in poverty — within flood zones is expected to rise 40% this decade.
THE MORNING AFTER the evacuation alert, Coleman woke up early to call the Highway Patrol about road closures. Already, Aaron was showing signs of a possible seizure. Good news: The route was clear, for now — at least for the next few hours, until the next atmospheric river arrived.
Coleman loaded her service dog, Heddie, and the kids into the car. They drove home to Studio City, managing to avoid detours around landslides or local floods. Coleman told me the boys have been happily jumping in sidewalk puddles in front of the house.
But the experience has shaken her. “The question that I’m left with is: ‘Are we beholden to when my son’s medication can be refilled as to when we can leave the house?’”
Astra Lincoln is a freelance writer based in Portland. Her work examines the intersection of people, power and place. Follow her on Twitter @astralincoln.
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