Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities
The Inequities of Crisis
A pandemic, devastating wildfires and hurricanes, and global social unrest combined in 2020 to create a perfect storm, one that still rages a year later, and has brought to light the consequences of social inequity.
As members of and advocates for the disability community, we knew that people with intellectual and developmental disabilities (IDD) would be disproportionately affected by the crises unfolding in the last year, as has happened many times in history. We knew many would lose their jobs, their educational supports, or even their lives.
Alongside the virus, social unrest swept across the globe. Communities and nations rose up in response to the killing of George Floyd during an arrest on a Minneapolis street. The outrage sparked conversations about systemic racism, police brutality, and how first responders interact with people who have intellectual disability or mental health issues.
We saw continued outing of sexism and sexual aggression as part of the #MeToo Movement. We voiced horror as children were forcibly separated from their parents at southern U.S. borders. When rioters stormed the U.S. Capitol, we witnessed the deadly outcomes of aggressive hate speech. Around the world, armed conflict did not stop for the pandemic. The conflicts in Afghanistan and Yemen continue on, leading to more than 38,000 fatalities in 2020 alone. Criminal and drug-related violence have contributed to more than 31,000 homicides in Mexico. And in the United States, armed violence continues, with mass shootings that increased nearly 50% in 2020.
Together, these flashpoints unveiled a host of inequalities. As of April, 2021, the COVID-19 pandemic has claimed more than 3 million lives around the world (Johns Hopkins Coronavirus Resource Center, 2021). Several studies have found that people with IDD who have COVID-19 are dying at a disproportionate rate (Gleason et al., 2021; Landes et al., 2020; Turk et al., 2020). The U.S. jobless rate for people with disabilities in 2020 was 12.6 percent in 2020, nearly five percentage points higher than for people without disabilities (BLS, 2021). Rates for non-white workers with disabilities were even higher (BLS, 2021). As schools across the globe closed, many struggled to provide appropriate instruction to students with disabilities through distance learning. A large survey of direct support professionals found that a majority said their worklife is getting worse, and just 30 percent reported receiving salary augmentation as essential workers (Hewitt et al., 2021). Those who remained became exhausted by taking on new responsibilities and working extra shifts. The pandemic also revealed the increased adverse health and isolation risks people with IDD who reside in congregate settings experience.
Why do these effects converge with such force upon people with IDD and their families? Overall, people with disabilities often experience risk factors such as higher poverty rates, lower employment rates, poor housing construction, and secondary health conditions – all factors that contribute to crisis and disaster risk (Thomas, 2013; Wisner et al., 2004). People with IDD also often experience intersectionality in these risk factors, leading to compounded and layered vulnerability to emergencies and hazards (Hemingway & Priestly, 2006; Kelman & Stough, 2015; Peek & Stough, 2010). Finally, people with IDD rarely have equal access to power, privilege, and resources that could provide protective functions during crises (Devlin & Pothier, 2006; Twigg, 2014). As a result, when emergencies and hazards strike, people with IDD are almost always disproportionately impacted.
These inequities – and others among the various underserved populations of the world – demand a robust and coordinated response. People with disabilities and disability organizations need to take on the issues of disasters and emergencies and incorporate them into our practices and organizations. We need to lead through action with respect to preparedness and response. We must also form permanent, substantive partnerships with local law enforcement and disaster response teams, and continue to develop augmentative communication technology and plain-language communication. We cannot wait for legal actions and emergency management to come to our rescue. We need to rescue ourselves, our family members, and our organizations.
There has been progress. Already, disability organizations have created new understandings of how to plan for and mitigate disaster risk, and are working with law enforcement and emergency responders to improve understanding of people with disabilities in tense situations. Training modules on distance learning for special education students are being designed, and paid community employment is replacing sub-minimum wage workshops. Organizations are teaching medical students and other healthcare professionals better techniques for treating patients with disabilities and are working with the Centers for Disease Control and Prevention and other organizations to create better emergency response protocols for wildfires and other natural hazards. In addition, state systems supporting individuals with IDD are forging partnerships with emergency management and public health entities. These partnerships, once considered “nice to do,” are now deemed essential priorities. For example, Louisiana has formed an Emergency Management Disability and Aging Coalition, composed of nonprofit, for profit and government agencies in Louisiana that advocates for and supports emergency management efforts inclusive of people with disabilities and those who are aging. The coalition works to ensure preparedness and education for all types of disasters that occur throughout the state. We must broaden these initiatives, however.
We must develop better methods for identifying and communicating with people with IDD who live in group and private homes so we can reach them during disasters. We must create protocols among organizations during emergencies in order to get needed supplies, medical equipment, and personal assistance to people in need. We must obtain funding and trained responders to ensure the IDD community is not left behind during emergencies. Governments must use these crises to reimagine services that maximize autonomy and choice. From the federal government to states to local partners and providers, we must identify and ferret out systemic biases – those related to race, culture, language, communication, disability, sexual orientation, and others.
In 2019, the United Nations Security Council adopted a resolution calling for better data collection on people with disabilities in conflict situations, and for including them in policymaking decisions. Implementation has been slow, however, according to Human Rights Watch, which investigates wartime and humanitarian abuses. It is critical to include people with IDD in research and epidemiological studies so that disproportionate impact can be measured and reduced. People with disabilities should be considered holistically, including how racial, economic, gender, sexuality, and other factors affect perceptions, capacity, and goals. We must also engage other fields and organizations that support positive outcomes of people with disabilities and their families, such as healthcare and childcare organizations. And we must engage with organizations that have missions much different from our own, from chemical plants to other for-profit businesses, because they have the potential to create adverse outcomes that affect people with disabilities.
The Sendai Framework for Disaster Risk Reduction 2015-2030 identified people with disabilities and their advocates as critical stakeholders and actors in implementing international disaster risk reduction policies. The United Nations’ 2030 Agenda for Sustainable Development agenda sets goals for employment, education, data collection, and human rights for people with disabilities. The aims are to eradicate global poverty and the other vulnerabilities that put many people with disabilities in peril when disasters and global conflicts strike. The United Nations Convention on the Rights of Persons with Disabilities recognizes that governments should protect the safety of people with disabilities in armed conflicts, humanitarian emergencies, and natural disasters.
Beyond these measures, we must take more active roles as change agents, reaching beyond the disability community to address the obstacles that remain for all disenfranchised people in crises. When there are opportunities to join forces in research, training, and advocacy with organizations representing the elderly, people with mental health concerns, and people of diverse racial, ethnic, gender, and other backgrounds, we must embrace them. These are ambitious goals, but the compound crises of the last year demand them.
If Not Now, When? Racism: A 400-year Public Health Emergency | Episode 1 in this series grapples with how racism, ongoing for centuries, can be a public emergency.
Bureau of Labor Statistics. (2021). Persons With a Disability: Labor Force Characteristics – 2020. Retrieved from https://www.bls.gov/
Devlin, R., & Pothier, D., Eds. (2006). Critical disability theory: Essays in philosophy, politics, policy, and law. UBC Press.
Gleason, J., Ross, W., Fossi, A., Blonsky, H., Tobias, J., & Stephens, M. (2021). The Devastating Impact of COVID-19 on Individuals with Intellectual Disabilities in the United States. NEJM Catalyst.
Hemingway, L., & Priestley, M. (2006). Natural hazards, human vulnerability and disabling societies: A disaster for disabled people? The Review of Disability Studies: An International Journal, 2(3), 57–68.
Hewitt, A., Pettingell, S., Kramme, J., Smith, J., Dean, K., Kleist, B., … Bershadsky, J. (2021). The Direct Support Workforce and COVID-19 National Survey Report 2021. Minneapolis, MN: Institute on Community Integration, University of Minnesota.
Johns Hopkins University of Medicine, Ed. (2021, April). Coronavirus resource center. Retrieved from https://coronavirus.jhu.edu/
Kelman, I., & Stough, L. M. (2015). Disability and disaster: Exchanges and explorations. New York: Palgrave/MacMillan Press.
Landes, S. D., Turk, M. A., & Wong, A. W. W. A. (2020). COVID-19 outcomes among people with intellectual and developmental disability in California: The importance of type of residence and skilled nursing care needs. Disability and Health Journal, 1–5. https://doi.org/10.1016/j.dhjo.2020.101051
Peek, L., & Stough, L. M. (2010). Children with disabilities in the context of disaster: A social vulnerability perspective. Child Development, 81(4), 1260–1270. https://doi.org/10.1111/j.1467-8624.2010.01466.x
Mural memorializing George Floyd in Minneapolis by Jean Beller, flood waters by Mica Baumeister, and aftermath of a storm by John Middelkoop.