Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities

In 2007, individuals with disabilities experienced inequities after a series of wildfires ravaged California. The Southern California Wildfires After Action Report (Kailes, 2008) documented multiple barriers individuals with disabilities encountered during disaster. They lacked accessible transportation during the evacuation, found shelters inaccessible and dealt with emergency signage that was solely text-dependent, without pictures. The report called for a functional-needs approach to better meet the diverse needs of individuals with disabilities and limitations. Federal and state disaster agencies, recognizing the disproportionate impact of disaster on individuals with disabilities, incorporated the functional-needs approach into planning and response efforts. For example, in 2008 the California Governor’s Office of Emergency Services established the Office of Access and Functional Needs (OAFN) to better accommodate individuals with disabilities and others with functional needs in multiple disasters and across phases of disasters.

Ten years later, in the fall of 2017, California again experienced a series of intense wildfires across the state. The largest of these, the Nuns and Tubbs Wildfires, occurred in Sonoma and Napa Counties, California’s wine country, and caused widespread destruction. A little more than one year later, the Camp Fire, the deadliest wildfire in California’s history, ravaged the town of Paradise, destroying homes and displacing thousands. Newspaper articles, including personal accounts (Wong, 2018), revealed that despite attention and concrete action towards a more inclusive disaster response, there was a clear and disproportionate impact on individuals with disabilities in the 2017 and 2018 wildfires. Additional reports acknowledged progress but stressed the continued failures at the federal, state and local levels in adequately responding to the needs of individuals with disabilities. For example, an audit focused on three impacted counties reported that although some best practices were in place, approaches remained incomplete, such as outdated county disaster plans that did not reflect the functional and access needs of the population (Howle, 2019). Additionally, a sweeping report on disasters that occurred in 2017 and 2018, including the California wildfires, identified emergency practices that worked, such as when disability-led organizations and government agencies worked together. The report also noted the extensive barriers encountered by individuals with a range of functional, access and support needs across all disaster phases (Roth et al., 2018). Persistent and inequitable emergency response failures present in the 2008 Kailes report, such as inaccessible transportation and sheltering, were again documented.

I live and work in a county that has been heavily impacted by wildfires. As the 2017 wildfires raged in my community, although not directly impacted, I was horrified like so many others about the widespread destruction and in learning details about the victims. My research has focused on the impact of trauma, grief and disasters on individuals with disabilities. But, perhaps naively, I found myself heartbroken that once again there were reports about inaccessible transportation and shelters. I also wondered how individuals with intellectual and developmental disabilities (IDD) and their families were experiencing the wildfires. Individuals with IDD can have mobility, transportation and health needs, but may also have communication, independence and other functional needs (Kailes, 2020). For example, individuals with IDD may require additional explanations during disasters or have additional needs related to losing the support of their families or direct support professionals due to the disaster. Individuals with IDD may have support needs that are not visible to emergency responders, are more likely to experience more tangible losses and may need additional support during the recovery phase of the disaster (Stough, 2015). Yet, their needs and experiences in the context of disasters are largely absent from newspaper headlines, governmental reports and published literature.

In 2018, as our community was engulfed in smoke from the Camp Fire, I interviewed parents of 14 children and youths ages 3 to 20 with IDD who had been impacted by the 2017 wildfires. In these interviews, families shared their experiences during the evacuation, sheltering and recovery phases. For example, parents described the challenges of navigating the disability-related needs of their children within communities overwhelmed by a widespread disaster (Ducy et al., 2019). Additionally, families described how their children experienced difficulties during school closures, such as behavior changes in reaction to the immense disruption in their routines (Ducy & Stough, 2021). These findings echo challenges faced by children with IDD and their families during the current pandemic.

I learned a tremendous amount from listening to the collective stories of these families, who demonstrated resilience in the face of widespread disaster. Parents noted important and supportive responses from existing social and community connections, such as family members, friends, school professionals and disability organizations. One mother described how she greatly appreciated when the Special Olympics coaches decided to continue to hold practice and provide a space for families and their children with IDD to connect.

I also learned about an overall lack of formal community efforts to respond to the disaster and access needs of their children with IDD:

Lesson # 1: Wildfire preparedness training is sorely needed.

Dissemination of emergency-preparedness information tailored to the unique needs of people and their families is essential (Roth et al., 2018). None of the parents were aware of community-preparedness training for people with IDD, however. Families evacuated in a hurry without disability-related supports, which impacted their experience while displaced. All of these families communicated a need for more attention to the needs of their children during disasters, including preparedness efforts.

Lesson #2: Public shelters must provide more support.

Families stayed with friends and family instead of a public shelter. All parents believed shelters would not accommodate their children’s behavioral and emotional needs and could exacerbate their children’s stress. Not all families have the social connections or financial means to avoid public shelters, however. Providing quiet areas to support emotional regulation would help in making the spaces more inclusive (Roth et al., 2018). If these supports are in place, there should be more community-based outreach to communicate these accommodations to individuals with IDD and their families.

Lesson #3: The disaster response of disability-related organizations is essential. 

The wildfires’ widespread nature meant many disability services and supplies were overwhelmed and could not stay operating within the impacted community. There were no community-wide efforts to assist families with replacing disability-related equipment such as ACC devices, and families expressed they were left to address those needs themselves. In a few cases, disability-related organizations outside the impacted areas provided families with tangible supports, such as mailing catheter equipment and gift cards for families to purchase gluten-free food. The disruption of supports exacerbates the impact of disasters on individuals with disabilities, and there is a need for improved channels for delivering disability-related equipment (Roth et al., 2018).

Lesson #4: There is an urgent need to address the mental health needs of individuals with IDD exposed to wildfires. 

The wildfires had a clear psychological impact on the children during the events and up to one year later, and at least one parent was unaware of any professionals with specialized knowledge about IDD who could address this impact. Individuals exposed to wildfires are at risk for developing anxiety-based reactions and psychological complications, such as PTSD (Palinkas, 2020). Community outreach on the mental health needs of people within the affected community needs to include professionals familiar with how trauma, grief, and stress may manifest in individuals with IDD. (Stough et al., 2017).

In addition to learning from the experience of these families, I have also listened to my university students. These students are undergraduates working with young children, interns working as special education teachers while completing credential courses, student teachers observing and participating in classrooms, and experienced teachers seeking a master’s degree. Across these students and across the wildfires, I hear stories of how their students with IDD display behaviors indicative of trauma. I have learned that these pre-service and practicing teachers are implementing essential supports for their students, such as maintaining routines and focusing on building relationships. Yet, they continually question how to best respond, noting that they have not received formal training. They worry that the repeated exposure to wildfires is impacting their students with IDD and their families. Their concerns are justified as their students are at risk for adverse psychological outcomes post-disaster, such as the increased risk of developing post-traumatic stress disorder (Stough et al., 2017). Just this past fall, our community again had a wildfire that caused some students to evacuate and experience loss yet again. Their teachers, my students, shared how they struggled meeting their emotional needs from a distance, through a Zoom meeting.

More than ten years since the California Southern Wildfire Report detailed multiple barriers encountered by individuals with disabilities throughout the wildfires, persistent and systematic exclusion continues. Self-advocates, individuals with disabilities, their families, teachers, and other professionals have also called repeatedly for improved responses.

Wildfires are increasing in frequency and intensity. Since the wildfires of 2017, Sonoma County alone has been indirectly and directly impacted by wildfires every year. Surely we do not need to wait for another wildfire to report once again that disasters are disproportionally impacting individuals with disabilities.

Partial and incomplete responses are unacceptable and individuals with disabilities deserve, and are legally entitled to, a full response (Roth et al, 2018). Urgent action is needed now to appropriately respond to ensure equitable disaster preparedness and response efforts.

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