Daniel H. Farrell/U.S. Air National Guard

Disaster Relief Often Leaves Disabled People Behind. Disabled First Responders Are Changing That.

Disability inclusion in emergency preparedness and response doesn’t just mean supporting disabled victims of extreme weather. It also means including disabled communities in disaster relief strategy.

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Next City and Prism’s series “Disability Justice For All,” covers how people of color are leading a disability justice movement in American cities, making strides toward equity in housing, mobility, labor, health care and beyond.

When disaster strikes, disabled people and low-income communities are hit the hardest and face higher mortality rates. They also take longer to recover.

Germán Parodi and Shaylin Sluzalis were protesting in Washington, D.C., for disability rights as they found out Hurricane Maria was on its way to Puerto Rico in 2017. Now the co-directors of The Partnership for Inclusive Disaster Strategies, they were deployed as part of a disabled first responder team. Parodi, who was born and raised on the island, lives with a mobility disability, while Sluzalis lives with an invisible disability.

“Being culturally aware of the dynamics of the island … and knowing how to interact with people with different types of disabilities opened doors that we were being told wouldn’t open in some neighborhoods,” says Parodi.

The Partnership connected with MAVI, an independent living center for those with disabilities and the aging population in Puerto Rico, along with CEPVI, the island’s Ponce-based Center for Independent Living. By coordinating efforts with disability-led organizations and FEMA, The Partnership was able to support more than 100 families in the mountainous areas of the island over the three weeks that followed.

Supporting disabled Puerto Ricans through Hurricane Maria

“The first step is always connecting with disability-led organizations in the area and letting them take the lead and figure out how we can best support them,” says disability rights advocate Priya Penner, currently an executive assistant for The Partnership.

The Partnership works to include disabled people in all phases of natural disasters. “We do everything from technical assistance with state [and] local governments to partnerships with FEMA, to our disability and disaster hotline, to training and community-specific organizations in a one-on-one type of work services,” explains Penner. The Philadelphia-based organization is the only U.S. organization led by disabled individuals that focuses on equity for disability in all parts of disaster strategy.

Inclusive responses to Hurricane Ian

When Hurricane Ian made landfall as a Category 4 storm on Sept. 28, 2022, nearly 3 million of Florida’s 4.6 million disabled people lived in counties decimated by the storm.

Just 10 days prior, all of Puerto Rico had been hit by Hurricane Fiona, a Category 1 storm. Thousands on the island were still without power when Hurricane Ian hit. The need for an inclusive disaster strategy in the region was high and immediate.

In the days leading up to the storm, The Partnership for Inclusive Disaster Strategies began connecting with local organizations in Florida and the Carolinas—where Ian later traveled—to support those with disabilities in getting to safety and accessing essential services and supplies they immediately needed.

As Ian struck, The Partnership maintained support for MAVI in Puerto Rico, which they had already connected to in response to Hurricane Fiona. Their U.S. Disability and Disaster Hotline, established in 2017, enabled them to coordinate with local organizations to connect disabled people to the resources they needed.

After a natural disaster, disabled people have additional barriers to accessing medical care and maintaining medical equipment. By partnering with Florida Center for Independent Living Network, the disabled first responder team was able to get those who would have otherwise been institutionalized in nursing homes.

“They were being wrongly discharged,” explains Parodi. “A week or two later they would need to be hospitalized again because they acquired injuries during the storm and were getting surgeries for what they were being discharged from.” In a matter of hours, they were able to get those individuals into hotel rooms with attendant care services.

From the Gulf Coast to the Atlantic Coast, these disaster-relief organizations worked to reach disabled people when they needed it most. One woman had to sit and sleep in her wheelchair for 10 nights straight and began developing edema in her legs. The Partnership assisted the American Red Cross in delivering an appropriate bed for her.

In Fort Myers, Florida, The Partnership worked with the Florida Center for Independent Living Network when a woman in her 60s who uses a walker was discharged from the hospital after storm-related injuries, only to find that she couldn’t navigate the debris in her house or get to a bathroom.

A volunteer with The Resilience Resource contacted the hotline and helped her relocate to a hotel near the hospital where her husband was still staying.

According to an AccuWeather report, one delivery driver who went back to work a week after the hurricane noticed that a man’s home wasn’t getting necessary repairs. “His house wasn’t getting cleaned up, the grass was knee high, his roof was damaged, there was no tarp on it yet,” Kimberly Breen, the delivery driver, said in the report. After finding out the man was hearing impaired, she called in to the hotline, and The Partnership connected him with the center. “A few days later … there’s a tarp on his roof, and his lawn is mowed.”

Addressing the impact of storms on recovering communities

Disabled people are more likely to be forced to leave their home and never return as a result of storms. From recent census data, 46% of deaf and hard-of-hearing evacuees reported that they never returned home after a disaster, compared to 30% of people without hearing problems. More than 74% of evacuees who are unable to walk faced a food shortage one month after a disaster, compared to 52% of people who can walk.

People of color who live with disabilities face additional barriers after a disaster. Black and Latinx populations are more likely to experience trauma and hardship during and after a disaster such as personal loss, property damage, and a delay in the restoration of basic resources like electricity.

Puerto Rico was so heavily impacted by Hurricane Fiona, which made landfall as a Category 1 storm, because of the damage Hurricane Maria did to the island’s electric grid. A full 36 days after Maria made landfall, 75% of the island’s 3.4 million residents remained without electricity, making it the biggest blackout in American history. As many as 200,000 people left the island after Hurricane Maria, with some sharing they were without power nine months into recovery.

Six years after Maria struck, blackouts are still occurring on an almost weekly basis, affecting anywhere from 250 to 1,000 people at a time, says Parodi, who argues the electric grid has become “the primary problem of recovering Puerto Rico.”

“We are not recognizing the trauma that this is developing in communities. It can become overbearing over constant disasters,” he says. An entire generation of children on the island is “growing up with a different concept of what reality is. We are sure that the power will come on every time we flick the switch, and that is not a certitude that they’re growing up with.”

It’s common for disabled people to rely on electricity-dependent equipment. More than 3 million Medicare recipients in the U.S., including some 44,000 based in Puerto Rico, rely on electricity-dependent equipment such as wheelchairs, tracheostomy suctioning machines, and hospital beds at home. Those who are on fixed incomes will not be able to afford or maintain an emergency generator.

“Those are compounding problems,” says Parodi, who saw more engagement with the disability community as Puerto Rico responded to the earthquakes of January 2020, largely as a result of increased collaboration between organizations.

While these relationships were effective in responding to that natural disaster, they were never formally developed and implemented as a plan. “Many local organizations just don’t have relationships with local emergency management that would fund or flow the funds to local organizations,” he says.

Worsening climate change increases need for inclusive disaster relief

With climate-related crises growing worse, a comprehensive disability-led approach to disaster relief is more important than ever. Flooding is expected to get worse as sea levels rise, rain rates and wind intensities increase, and the number of Category 4 and 5 hurricanes also likely goes up.

Climate change also causes a disproportionate impact of extreme heat on areas. A 2021 study on urban heat in the Southwest found that the poorest 10% of neighborhoods in a given city were on average 2.2 degrees C (4 degrees F) than the wealthiest 10% of neighborhoods on both extreme heat days and average summer days.

As other disasters and extreme weather events worsen, systemic barriers continue to perpetuate unequal access to important resources such as cooling centers, or air-conditioned buildings that are designated as safe places during extreme heat. “They’re not necessarily close or nearby. If you don’t have access to a vehicle or public transit isn’t available or consistent, you’re not going to get to those cooling centers,” says demographer Noli Brazil, an assistant professor in the Department of Human Ecology at the University of California, Davis.

While disabled people and people of color are more vulnerable to extreme heat, they also face heightened barriers in escaping this heat. That’s due to both their greater likelihood of living in hotter, lower-income areas and being surrounded by poor public transportation infrastructure. A 2021 study of 25 U.S. cities found that only 10% of people were within “walking distance” or a half mile of a cooling center.

Climate change is already causing an increase in wildfire seasons’ length, frequency, and burned area by creating longer dry seasons, coupled with drier soils and vegetation. Fires are becoming more severe and frequent as a result of increased temperatures and drought.

Supporting legislation to include disabled people’s needs

To address barriers and lack of preparedness for assisting disabled Americans during extreme weather and other crises, The Partnership works to advocate for policy change at a federal level.

The Partnership was one of the main disability organizations involved in crafting the original language of the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act, which was reintroduced at the end of March this year.

“From the beginning, we had a strong interest in ensuring that it was done right and the language was as clear and as helpful as possible for the community,” said Penner.

First introduced in 2018, the REAADI for Disasters Act would establish a National Commission on Disability Rights and Disasters to include those with disabilities in all parts of disaster preparedness, as well as create a network of centers that would offer training, research, and assistance to support those with disabilities before and after disasters. It would also create a number of funding and grant opportunities.

“We must ensure that seniors and people with disabilities are active participants in developing emergency preparedness plans that will keep them safe and ensure that their needs are met before, during, and after a disaster strikes,” said Sen. Bob Casey when he announced the reintroduction of the bill in 2021.

The Partnership also had a hand in developing the Disaster Relief Medicaid Act, which was introduced in 2021 but has not yet been introduced into the 118th Congress. This bill would ensure that those who are eligible for Medicaid would continue receiving benefits even if they must relocate across state lines due to the impact of a disaster.

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Bianca Gonzalez (she/they) is a writer intent on using words as a tool for social change. She is a solutions journalist for Next City, a case study writer for Community Solutions, and a daily news writer for Biometric Update. As a queer, Latina brain cancer survivor, she believes that justice is fundamentally intersectional.

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