Disaster relief for the elderly and disabled is already hard — now add a pandemic

When a natural disaster strikes, it's complicated to evacuate and care for some of the people most at risk — the elderly and disabled.

Now — add another complication: a pandemic.

"The increase in COVID spread will be deadly... and people with disabilities once again will be the least prioritized," warns Germán Parodi, who runs a disability group that coordinates with federal, state and local emergency preparedness agencies. Parodi and his co-director, Shaylin Sluzalis, say those agencies have failed to do adequate planning to assure that even masks and other personal protective equipment will be available at shelters.

"We are not seeing the urgency," says Sluzalis of the Partnership for Inclusive Disaster Strategies. Agencies, she says based on her group's briefings with them, don't have clear policies "for ensuring the safety of people, trying not to cross-contaminate and spread the infection."

Those who do that work or monitor it are sounding alarms that the preparation, nationwide, has fallen short. "COVID really puts a wrench in things," says Sandy Hanebrink, who helps with evacuations in South Carolina.

"How are they going to do social distancing?" Hanebrink asks. "What are they going to do if there is a 'positive' in a shelter?"

In a natural disaster, shelters quickly get crowded with people and families in cots set close together. To enable social distancing, new federal guidelines recommend adding more space per person, meaning that fewer people can fit into any one shelter.

Even before the pandemic, most counties in Florida, for example, reported they were already short on space for people with disabilities. State and local governments and nonprofits such as the American Red Cross that help run shelters report they are looking for extra space.

One solution this year will be to rent more rooms in hotels. This is a good approach, but it creates other problems, Hanebrink says. For example, if hotels are used for shelter, it will take extra staff to run the new locations.

But staff will be hard to find during the pandemic, Hanebrink warns: "A lot of the shelter volunteers are seniors. So they're an at-risk population." Disaster preparedness agencies, she says "are afraid there's not going to be enough volunteers and workers."

Even before the pandemic, disabled and elderly people were among the people most likely to die during a natural disaster. In Hurricane Katrina in 2005, 49 percent of the dead were 75 years and older. After Hurricane Maria hit Puerto Rico in 2017, an academic study of "excess deaths"-- the number beyond what could be expected in a normal year — found that 77 percent of the dead were 65 or older.

One reason is that elderly and disabled people often need help leaving their homes when there is a hurricane, tornado, fire or other natural disaster. They are less likely than others to have a car or transportation. A person who uses a wheelchair may not be able to get into a bus or van that comes to evacuate them, because it doesn't have a wheelchair lift.

At a shelter, there may be stairs, and a person in a wheelchair can't get in. Sometimes separate "medical" shelters are set up, but only people with disabilities are allowed in and a family member who provides care is excluded. Hanebrink, a quadriplegic who uses a wheelchair, speaks of her personal experience getting moved to shelters, often in churches or schools, where she couldn't get inside.

Once inside, there may be steps to reach essentials, like where food is served. When Hurricane Florence hit North Carolina in 2018, people in wheelchairs who were evacuated to the Lawrence Joel Veterans Memorial Coliseum in Winston-Salem reported they could get in, but from the arena's floor they had only sporadic access to bathrooms. The elevators to the only open bathrooms were often out of service or shut down at night, according to a report by Disability Rights North Carolina.

Katy Willis, a quadriplegic woman who uses a wheelchair, had difficulty getting evacuated in February 2017 when flooding damaged the Oroville Dam in California and there was danger that the dam might break. Around 188,000 people who lived nearby were evacuated.

Willis, who lives in Yuba City, relies upon caregivers to help her get around. But she found herself stranded. "I was at my apartment and the caregiver that was supposed to come in at four o'clock was a young girl and she just took off up the hill and ran," she says. "And left me there by myself."

Willis didn't have transportation. She got onto social media and pleaded for help. The local government sent a van. She was one of the last to get out.

When she arrived at the emergency shelter, she says the staff said they couldn't help a woman in a wheelchair who needed caregivers and she was sent home to fend for herself. "Oh, it was really scary," Willis says. "I felt like I was worth nothing."

The dam held. Today, Willis volunteers with a California group to improve emergency planning for elderly and disabled people. But she worries what will happen if there's a natural disaster during the pandemic.

A complex network responds to disasters. State and local governments are primarily responsible for evacuations and shelter, but rely upon help from nonprofit agencies like the Red Cross. The federal government adds funding, assistance and guidance. A law, after Hurricane Katrina, gave the Federal Emergency Management Agency, FEMA, responsibility for planning for the evacuation and care of elderly and disabled people.

Even before the coronavirus pandemic, Rep. Donald Payne, Jr., doubted whether FEMA had systems in place to protect the elderly and those with disabilities. The New Jersey Democrat, who chairs a subcommittee with oversight of FEMA, held a hearing a year ago, on July 23, 2019, about the agency's preparations to help state and local governments assist the elderly and disabled.

The subcommittee heard that day about a congressional audit's scathing review of FEMA's efforts. FEMA's policies for assisting the elderly and disabled were so unclear that even most of the managers responsible said they didn't understand what they were expected to do. The plan, the Government Accountability Office report said, was "not broadly, clearly or consistently articulated."

There were other problems, too. The intake forms FEMA designed for shelters didn't include a question to identify clearly who had a disability and who didn't, according to the GAO.

Payne was unhappy that no one from FEMA came to testify at the hearing.

Now, a year later, and at the start of another storm season, Payne says he still can't get satisfactory answers from the agency,

"It's like pulling teeth," says the lawmaker from Newark. "This administration is really a challenge. Hopefully what we are saying is getting through to them and they're not responding to us but they're making sure they're prepared. So that's the most we can hope for under these circumstances."

Linda Mastandrea, who runs FEMA's Office of Disability Integration and Coordination, says her office has changed things since that congressional audit. (Mastandrea told NPR she was out of the country at the time of Payne's hearing and that her deputy had not yet been appointed.) There's a clear question now on the intake forms to identify people with disabilities, she says.

And, she notes, FEMA will help state and local governments use more hotel space this year, by reimbursing part of the cost. NPR's Abby Wendle reports, however, that hotels are proving an often costly and inconvenient alternative to standard shelters and that critics say FEMA needs to take a more active role in planning efforts.

The GAO report also questioned a change Mastandrea made in the way her office uses staff. Before, FEMA had hired nearly 200 "disability integration specialists" and deployed dozens to the sites of natural disasters.

These were often people with disabilities themselves. They worked on the ground, visiting shelters, taking calls from people with disabilities, the elderly and their families, and advised state and local agencies, along with nonprofits doing the disaster work.

Now only a few to a dozen are deployed to disaster sites and they work, not on the ground, but inside offices.

Mastandrea says that strategy works well now, particularly in the pandemic when most connections with state and local officials are, by necessity, made online.

The larger point, Mastandrea says, was to integrate best practices for helping people with disabilities among all FEMA staffers, instead of leaving it to the expertise of a separate group.

"We are focusing on our job," she says, "which is to provide disability subject matter expertise across the agency to senior leadership, to the program areas to help them do their jobs better, not to do their jobs for them."

But Marcie Roth, Mastandrea's predecessor and the first person to run FEMA's disability office, sees the decision to cut back on the specialists sent into the field as a setback. "We used to deploy 40, 60, 65 out to a disaster," she says. The GAO reported that FEMA sent 63 specialists into the field after Hurricane Maria in 2017 and 58 that year after Hurricane Harvey, but only 11 when Hurricane Florence struck in 2018 and eight after Hurricane Michael, also in 2018. One result, Roth says, is that FEMA doesn't work as closely now with local disability organizations, using their knowledge and building their capacity.

Roth, who left FEMA on the last day of the Obama administration, still focuses on emergency preparation as the head of the World Institute on Disability.

She started at FEMA in 2009 and then opened the disability office in 2010 and worked on disaster preparedness for people with disabilities before that. When Hurricane Katrina hit New Orleans, she tried, on the phone, to help a quadriplegic woman, Benilda Caixeta, evacuate from her home. For three days, the desperate woman made calls to local officials asking to be evacuated. Even her calls to 911 were ignored.

Roth was on the phone with Caixeta when the frightened woman reported that water was rushing in and, as Roth told a congressional hearing, the phone went dead. "We learned five days later that she had been found in her apartment, dead, floating next to her wheelchair," Roth testified. "Benilda did not have to drown."

NPR reported from Louisiana in 2005 about people who were not evacuated because they used wheelchairs. One woman wasn't evacuated because she refused to leave without the $20,000 power wheelchair she'd fought with insurance to get for her 24-year-old son with muscular dystrophy.

"In a disaster, everything is exponentially worse for everyone," says Parodi of the Partnership for Inclusive Disaster Strategies. "People with disabilities are the last forgotten," he says. And they will be the most at risk, he warns, when the coronavirus and natural disasters come together.

Copyright 2020 NPR. To see more, visit https://www.npr.org.

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