A Model for Disability Justice in Emergency Shelters

In the face of the escalating climate crisis, a New Jersey organization has created a replicable shelter simulation model that makes temporary housing more inclusive for disabled people.

Following Hurricane Sandy, which forced hundreds of thousands to evacuate as it made landfall in the mid-Atlantic region of the United States in 2012, staff at the Alliance Center for Independence (ACI) in Edison, New Jersey, heard from disabled community members about the inaccessibility of emergency shelters.

“When Sandy hit, so many people with disabilities died in their apartments because shelters weren’t accessible,” says Carole Tonks, ACI’s executive director. About half of those who died as a result of Hurricane Sandy were aged 75 or older. Many had access or functional needs.

One wheelchair user drowned in his home in Rockaway Park, a neighborhood in New York City, because he could not escape rising water levels and emergency services failed to respond to his repeated calls for help. Another drowned when he stayed behind in an evacuation zone in Staten Island because he said he did not feel comfortable at an emergency shelter after his experience with one during Hurricane Irene a year earlier.

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After seeing access issues at emergency shelters creating life-threatening situations for so many disabled people during Hurricane Irene and Hurricane Sandy, Tonks and her team devised a plan to help mitigate future problems. Instead of waiting for a real emergency to learn about and troubleshoot community needs, ACI brought together local disabled people and emergency management professionals from state agencies and nonprofit organizations like the American Red Cross (ARC) for an overnight shelter simulation exercise. The group practiced each step of an overnight emergency shelter experience, including traveling to the shelter using various modes of transportation, registering on arrival, and eating and sleeping in the shelter dormitory.

The goal of the simulation was twofold. First, familiarize members of the disability community with an overnight shelter experience. Second, give emergency management personnel and shelter volunteers opportunities to learn from disabled community members. The latter is vital because one of the foremost reasons that emergency shelters and emergency response plans, in general, fail to meet the needs of disabled people is that disabled people tend to be excluded from the planning process. Their exclusion is often due to access barriers or stigmatizing misconceptions that disabled people are less intelligent than their peers or do not have skills or ideas to contribute.

The Federal Emergency Management Agency (FEMA) launched an Office of Disability Integration and Coordination in 2010, aiming to maximize the inclusion of people with disabilities in disaster preparedness, response, and recovery efforts. It also developed a model for Core Advisory Groups, which advocates have since formed nationwide to encourage collaboration among members of the disability community and emergency management professionals. However, disabled people remain underrepresented in official emergency management spaces, and much of the critical support available to the disability community during and after disasters comes from independent organizations, many of them disability-led, which are forced to plug gaps in government response plans with limited resources.

Given this status quo, disabled people are two to four times more likely to die or sustain critical injuries during a disaster. Addressing this condemnable disparity and improving outcomes for all people is now more pressing than ever as disasters fueled by climate change become more frequent and intense.

“We need to be involved so we can let people know we’re here and what some of our accommodations are,” explains Tonks. The idea is that when disabled people are included in emergency management conversations, they contribute unique expertise rooted in lived experience.

Without this input, nondisabled emergency management professionals rely on legal obligations like those in the Americans with Disabilities Act of 1990 and the Rehabilitation Act of 1973, which require that local and state governments make their disaster responses accessible. FEMA and organizations like the ARC also produce guidelines that help emergency management personnel select and outfit shelter locations. However, these guidelines provide only a basic level of access and tend to focus on maneuverability, like ensuring that shelters have roll-in shower stalls and ramps at their entrances for wheelchair users.

But sometimes, even these basic access requirements go unmet. Following Hurricane Irene in 2011, disabled New Yorkers filed a federal class action lawsuit against the city of New York and Mayor Michael Bloomberg, alleging that the city had discriminated against them by failing to plan for or respond to their needs. Plaintiffs described being unable to access emergency housing because the sites had insufficient signage for blind and low-vision persons, and ramps that wheelchair users needed were behind locked gates. In November 2013, the U.S. District Court for the Southern District of New York sided with the plaintiffs. Several similar lawsuits have since been filed, including one against the city of San Antonio just this year on behalf of nine plaintiffs who were forced to shelter in place during the winter storm that devastated Texas in 2021 because the city did not have shelters that were accessible to them.

Erin, a wheelchair user, and Kris Gordon, talk with Elfreida Francis from the Burlington County Disaster Response Crisis Counselors. Erin and Kris are both CERT members, and they volunteered as role players for the simulation exercise. *Photo by Kim Mattson of the Burlington County Health Department*

A lack of training and awareness among staff and volunteers can also prevent disabled people from accessing temporary housing. According to Luke Koppisch, deputy director at ACI, when calling emergency services for information about shelter locations or arriving at a shelter, “people with disabilities are often told, ‘Oh, you use a wheelchair, or you have health care issues? Why don’t you go to the hospital?’” But diverting people to hospitals or specialized shelters during a disaster when they do not need those services risks overwhelming those spaces, threatening others who do require specialized care or support. Doing so also runs counter to the ADA, which prohibits discrimination on the basis of disability in public accommodations. “People with disabilities should be included and integrated into every aspect of the community, including emergency preparedness, planning, and services,” says Koppisch.

Experts like Tonks and Koppisch say a more holistic approach is needed to provide safe spaces for disabled people to access needed support and services in the wake of a disaster. The shelter simulation exercises that ACI launched in New Jersey aim to develop such guidelines and demonstrate the importance of including disabled people in the planning process. The organization held its first overnight shelter simulation in Middlesex County in 2014. It hosted a second exercise in Somerset County in 2015.

Joseph Geleta, director of emergency management at the New Jersey Department of Human Services, which collaborated on ACI’s early simulations, says his team learned things they would have never considered otherwise. “We talked about simple things you wouldn’t think about if you just wrote your plan,” he says. “But by doing this exercise and working with the disability, access, and functional needs community, we identified different resources that we can keep in stock when we activate our shelters to make sure everyone’s welcome and taken care of.” He says his team now stocks wide-grip utensils, adaptable mugs, easy-to-open meals, and various patient-transfer boards to help folks who need to transfer to or from a wheelchair.

The first simulations that ACI led almost a decade ago have since become a model for other New Jersey counties, thanks in large part to Geleta, Tonks, and Koppisch, who present their ideas to audiences at the New Jersey Emergency Preparedness Association Conference each year. The group has also produced resources and offers support to other emergency management agencies interested in running a similar simulation.

Earlier this year, the Burlington County Office of Emergency Management (OEM) held a simulation at a regional shelter location in Medford. Major partners involved in the simulation included the ARC, representatives from several Community Emergency Response Teams, disaster response crisis counselors, and the local fire department.

Mike Panarella, a CERT volunteer, teaches shelter staff some basic American Sign Language that could be used in a disaster situation. *Photo by Kim Mattson of the Burlington County Health Department*

“One of the best things we learned from the exercise is that those requiring accommodation are not just those with mobility issues,” explains Phyllis Worrell, an emergency management coordinator in the Burlington County OEM. Training for shelter volunteers at the Burlington County exercise included learning how to communicate with residents who require language interpretation, support people evacuated without their medications or durable medical equipment, and handle service animals. They also practiced addressing acute medical needs, like shortness of breath, stroke, and anxiety attacks. “Having a chance to exercise those skills and play with the equipment is important to make sure we are able to provide the best assistance we can,” says Worrell.

What organizers have found most helpful is allocating time during the shelter simulation for a roundtable discussion where disabled people are invited to explain their needs in the shelter environment. ACI has also used the issues raised in these sessions to develop and publish guidelines that can be followed alongside those issued by other agencies to make temporary housing more inclusive for disabled community members.

After these simulations, attendees fill out surveys, which gives organizers and emergency management professionals even more insight into what needs to be adjusted before an actual emergency strikes. Survey results also show that attendees feel better prepared and more knowledgeable about evacuation and shelter options after participating in a simulation.

“We think this should be a national model,” says Geleta. “It’s valuable because it’s the only way you’re going to learn what needs to be incorporated into your plans when you do have an emergency.”