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

Disasters are considered traumatic events and can cause immense destruction in peoples’ lives. Psychological reactions are expected after disruption and destruction following disasters, but the emotional responses of individuals with intellectual disability (ID) impacted by disasters are understudied. Direct reports from individuals with ID are particularly scant in published literature. This lack of attention is alarming given that people with disabilities are disproportionately impacted by the adverse effects of a disaster and can encounter social stigma that complicates their disaster recovery (Stough et al., 2017b).

Direct reports from individuals with ID are particularly scant in the published literature. Recent studies have shown they are more likely to experience multiple traumatic events as children and adults (Byrne, 2020) and, as a result, to then develop psychological ill effects, such as post-traumatic stress disorder (Ballan & Sormanti, 2006). Despite these findings, a gap exists within the field of mental health to not only acknowledge this, but to address it. The prevalence of “diagnostic overshadowing,” which occurs when behaviors are attributed to the diagnosis of ID (Keesler, 2014) rather than to other causes, is often referred to as a barrier to acknowledging the presence of trauma. This diagnostic overshadowing occurs despite multiple reports that people with ID tend to experience multiple types of trauma multiple times throughout their lifetime.

Trauma can include abuse, neglect, bullying, medical procedures, and lack of autonomy as well as incidents of disaster. Disparities in access to equitable healthcare, supports, and challenges to cognitive processing can intensify traumatic experiences. In times of disaster, for instance, the need for additional support for processing grief, navigating complex governmental services, and social interactions can exacerbate a person’s threshold for coping.

Individuals impacted by trauma can encounter multiple losses, such as the death of a loved one, loss of safety, loss of secure attachments, loss of routines, and personal belongings. Loss due to traumatic experiences may be particularly challenging for individuals with developmental disabilities (Dodd & Kelly, 2016) as they have often experienced cumulative losses throughout their lives (Ballan & Sormanti, 2006). Additionally, those impacted are at risk for secondary losses post-trauma, such as moving from their family home or navigating unfamiliar environments after relocation post-disaster.

Grief is a natural reaction to loss and can cause physical and psychological symptoms. Yet, grief in individuals with ID is not always acknowledged or appropriately supported (McGilvery, 2018), which means they are often disenfranchised and marginalized when grieving (Doka, 2008). Without appropriate support, individuals with ID are at risk for reactions beyond what is considered typical grief. Individuals with ID need support from trained professionals familiar with their needs to facilitate coping with trauma and loss post-disaster (Ballan & Sormanti, 2006). Grief support should be accurate, timely, and accessible to assist individuals with ID dealing with loss (McRitchie et al., 2014). For example, providing concrete explanations on the event causing the loss, making information accessible using visuals, and using supports tailored specifically to the individual, such as a customized social story. These were strategies used by parents and teachers to help facilitate loss in children and youth with disabilities who experienced a post-traumatic event (Ducy & Stough, 2011; Ducy & Stough, 2018, Ducy et al., 2019). Additionally, individuals with ID should be involved in cultural rituals surrounding the loss, such as attending funerals, though these rituals can be disrupted for all during certain types of disasters.

Loss due to traumatic experiences may be particularly challenging for individuals with developmental disabilities as they have often experienced cumulative losses throughout their lives.

Adults with ID experience loneliness and isolation on a day-to-day basis, and this is likely to increase during times of disaster, which can lead to increased possibility of trauma due to lack of social support and feelings of connectivity to community. In a 2017 study after Hurricane Katrina, adults with ID expressed loneliness and grief over lost connections. Researchers found that psychological well-being was connected to perceptions of a good quality life, including “physical connectedness to family, friends, and neighbors.” This was particularly true for vulnerable populations such as those with disabilities and higher support needs (Stough et al., 2017a). According to their parents, youth with ID and Autism Spectrum Disorder expressed sadness and grief due to losing their homes in wildfires (Ducy et al., 2019). Special education teachers reported expressions of grief displayed by students with ID after a parent's death (Ducy & Stough, 2018) and after losses stemming from Hurricane Ike (Ducy & Stough, 2011). Clearly, people with ID feel the effects of grief and loss acutely.

The evolving COVID-19 pandemic has disproportionately impacted individuals with disabilities in several ways and exposed pre-existing social inequalities. One example is that the losses caused by COVID-19 are exacerbated for individuals with ID. Similar to experiences of the wider population, individuals with ID have experienced isolation from family, friends, caregivers, coworkers, but their preexisting social networks tend to be smaller, amplifying their social isolation in the pandemic (den Houting, 2020). Isolation from caregivers who would typically provide concrete explanations and emotional support during this time full of uncertainty, may contribute to the grief of individuals with ID.

Another example is cited in a 2020 United Kingdom study, stating adults with ID may experience “an exacerbation of mental health symptoms and/or challenging behavior…[due to] stringent social distancing, and shielding” (Alexander et al., 2020) that was suggested by health officials during the COVID-19 pandemic. Additionally, people with ID may experience a change in their support structure either via access to organizations such as day service and employment providers, or to therapies. Many services have attempted to provide telehealth access or online programming, which can be useful for many if people are computer literate and have access to devices and consistent internet connection (Jeste et al., 2020).

Interventions and therapies for people with ID experiencing trauma are scarce. Some therapies utilized in counseling for trauma include Cognitive Behavioral Therapy (CBT) and Eye Movement Desensitization Therapy (EMDR), but there are limited studies on the use and effectiveness of these trauma-based therapies for people with ID (Byrne, 2020). People with ID lack access to trauma treatment in typical times and the isolation from the COVID-19 pandemic may further limit access.

Some research suggests crisis interventions are necessary and most effective when both systemic and individual issues are addressed and this can help return a person “to an adaptive level of functioning and mitigate the negative impact of psychological trauma” (Ballan and Sormanti, 2006). During a pandemic lasting over one year, however, when should crisis interventions start? At what point do professionals begin to address trauma and grief that is ongoing?

In this article, the authors discussed the various types of trauma and the increased likelihood of people with ID experiencing it throughout their lives. Disasters exacerbate the possibility of trauma, especially one that necessitates social distancing and organizational lockdowns for health reasons. People with ID are in the midst of multiple crises: isolation, lack of support services, and healthcare inequities in addition to higher fatality rates (Landes et al., 2020) from COVID-19. Additional research needs to provide information on effective trauma therapies and interventions for people with ID. It will also produce greater awareness of the intensity of the psychological aspects of this pandemic.

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