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When we think of disasters like hurricanes, floods or fires or even civil unrest, the first thing that comes to mind is ‘how can I stay safe in this situation?’ You might imagine grabbing priceless photos, beloved pets and short-term supplies and driving away from the danger to stay with friends or relatives, at a hotel or temporary shelter. The Covid-19 pandemic ignited global panic with shortages of protective gear and hospital supplies, lots of unknowns and mixed messages from public health and political leadership. Combined with the mandates requiring long-term sheltering in place, Covid-19 tested even the best disaster plans.
While coping with the effects of disasters is challenging, it can be even more so for people with disabilities.
Evacuation can be difficult for people with mobility issues. Electrical outages that stop elevators from working or prevent electric wheelchairs and medical equipment from being charged can become life-threatening. Medical supplies are extremely difficult to source during emergencies. Shelters are often inaccessible or impossible to live in for people with disabilities (think bathrooms that don’t accommodate wheelchairs, or beds that are too low to get into and out of). During the pandemic, people with disabilities who rely on personal assistants (PAs) often went without their home and community-based services (HCBS) as PAs sheltered in place in their own homes.
Disasters are also more dangerous for people with disabilities. According to the World Institute on Disability (WID), during a disaster, people with disabilities are two to four times more likely than those without disabilities to be injured or die.
These deaths could be prevented with more inclusive disaster planning that considers the needs of people with disabilities. But they are often left out.
Dawn Skaggs, Director of Emergency, Disaster, and Climate Resilience at WID, says that instead of inclusive disaster planning, many communities see institutionalization for people with disabilities as a first response during a disaster. “Institutionalization is perceived as a default safety net and a better use of limited, available resources,” she explains. She says that people with disabilities placed in these congregate-care settings during disasters are unlikely to return to community-based living.
“People with disabilities have to be involved in the planning process,” Skaggs says, in part because they know what they need whereas people without disabilities might not be aware of these needs.
To address inclusive disaster planning on a global scale, in 2020, WID launched the Global Alliance for Disaster Resource Allocation (GADRA). GADRA collaborates with disability-led organizations worldwide, linking them to foundations, corporations and other allies to accelerate assistance and the provision of resources before, during and after natural and other disasters. GADRA has been effective in places like war-torn Ukraine and following earthquakes in Haiti.
In Ukraine, GADRA assisted people with disabilities who were unable to access humanitarian aid because of the systemic barriers exacerbated by war. GADRA supported an organization called Fight for Right, which assisted 8,000 Ukrainians. Fight for Right assists people with disabilities who need evacuation support, spreads the word about war crimes and how the war affects people with disabilities, and provides Ukrainians with other resources. Through GADRA, WID gave Fight for Right the structure, support, and coaching it needed to be effective, Skaggs explained.
The best disaster-preparation advice she gives people is to be prepared. “Preparation also includes advocating for inclusive planning before disaster strikes,” she says. “If you’re not reaching out before, it’s exponentially worse when you’re experiencing the trauma of loss caused by a disaster.”
Kira Meskin Schiff, an occupational therapist and community reintegration advocate at the Progress Center for Independent Living in Forest Park, Illinois, echoes Scaggs’ sentiments. “We need more people with lived experience of disability to be at the decision-making table when it comes to determining emergency management policies and practices that directly impact our lives,” she says.
Since early on in the pandemic, Schiff and her colleagues including Laura VanPuymbrouck, PhD, OTR/L, Associate Professor of Occupational Therapy at Rush University, have led a coalition run by and for people with disabilities that was formed in response to Illinois’ fragmented emergency response efforts for PPE distribution, particularly for people who utilize home and community-based services (HCBS) and their Personal Assistants.
Emergency plans often don’t effectively consider the many people with disabilities and older adults who use HCBS and rely on Personal Assistants (PAs) for things like self-care, household chores, shopping, and numerous other activities. “According to our state and federal government, PAs are considered essential healthcare workers, but they aren’t prioritized as such in disaster plans,” Schiff says. “The concept of PA services can be hard for people who don’t use them to understand, but these workers are absolutely crucial for people who use HCBS.”
Communications was a key gap Schiff and her colleagues noted during the Covid-19 pandemic. She says communications can really make or break a disaster plan, especially when it comes to people with disabilities.
“Not only do communications need to be accessible for them to be truly effective, but multiple types of notifications need to be used to educate and inform people with disabilities about what to do in a disaster,” she says. “Sending one text message or one email isn’t going to do it since a lot of people with disabilities face barriers accessing technology.”
Schiff thinks about how politicians running for Alderman in Chicago communicate their platforms and ideas during campaigns. “Not only do they publicize through commercials, but they also use door hangers and mail pamphlets. That kind of communication could be very effective for many people with disabilities, provided those print materials are accessible and follow plain language guidelines.”
As PPE became more readily available, Schiff’s coalition pivoted to advocacy.
To address gaps in disaster planning and response, they drafted Illinois Bill SB 921. The bill mandated the establishment of the Office of Access and Functional Needs Advisory Committee within the Illinois Emergency Management Agency. The committee reviews and recommends revisions to the State Emergency Operations Plan as well as local emergency plans to make them more inclusive.
While the bill was a major victory, Schiff is also concerned about the lack of data on what happens to people with disabilities during and after disasters. Data would help planners be better prepared, help and determine if needed resources were equitably allocated or make need to be adjusted going forward.
“We need more data on people with disabilities and for this data to be taken seriously,” she says, “because if we aren’t accounted for, then we will be forgotten.”