Black, Disabled, and Uncounted

Black, Disabled, and Uncounted

Black people with disabilities are in a health equity crisis in the United States that is compounded by the COVID-19 pandemic — we just don’t know exactly how bad it is. Race and disability status expose Black people with disabilities to two separate sets of COVID-19 risks. Black people in this country exposed to COVID-19 have far higher case, hospitalization, and death rates as compared to their White counterparts.

Additionally, people with disabilities, often due to circumstances they cannot control, are more likely to be exposed to COVID-19 than people without disabilities. The failure to consistently track how Black people with disabilities are impacted by COVID-19 means the disparities at the intersection of disability, race, and COVID-19 are not identified or clearly understood.

This lack of data leaves much unknown about how Black people with disabilities are harmed by COVID-19. The most likely scenario is that Black people with disabilities are being exposed to COVID-19 at a much greater rate and with a higher death rate than people who are not Black and do not have a disability.

Data on Race & Disability, But Not the Intersection

Disability impacts one in four Black people in the United States. This is higher than the ratio for Whites, Hispanics, Native Hawaiians / Pacific islanders, and Asians. Only American Indian / Native Alaskans have a higher ratio of disability (three in ten) in their communities.

People with disabilities in the following groups are at a potentially higher risk of becoming infected:

  • People with limited mobility who rely on family members or direct support professionals increases the chances for contact with others who may be infected;
  • People who have trouble understanding information or practicing preventive measures, such as hand washing and social distancing; and
  • People who may not be able to communicate symptoms of illness.

People with disabilities who are in good health and can avoid exposure may have similar risk to getting COVID-19 than people without disabilities. However, large percentages of Black people with disabilities have the types of chronic, underlying health conditions like obesity and diabetes that make them particularly vulnerable to the effects of the disease. These chronic conditions can lead to cardiovascular and respiratory problems that make fighting off the virus very difficult.

Statistically, Black people are also more likely to live in areas that have fewer COVID-19 testing resources, and receive poorer care when able to access resources. Black people also disproportionately reside in settings where the risk of exposure to COVID-19 is at its highest. Two such settings—congregate care facilities and prisons—have been particularly hard hit by COVID-19.

Data on Location Matters

People with intellectual and developmental disabilities living in care facilities are more than twice as likely to die from COVID-19 than those without disabilities in the general population and four-times as likely to contract COVID-19 than people without disabilities. Nursing facilities where Black and Latino residents are at least twenty-five percent of the resident population are two-times as likely to get infected with COVID-19 than nursing facilities with predominantly white resident populations.

It stands to reason that being Black, having an intellectual or developmental disability, and living in a care facility significantly raises the probability of contracting, and the risk of dying from, COVID-19 compared to White people living in similar circumstances. But, the statistics that would help to clarify the extent of the risk and impact remain unavailable.

COVID-19 is running rampant in U.S. prisons. The infection rate for COVID-19 in jails and prisons is about two and-a-half times higher than in the general population, due in part to crowded living conditions and poor access to protective equipment.

Long histories of systemic racism, marginalization, and underfunding of community-based treatments have disproportionately filled our prisons with Black people with disabilities. People in state and federal prisons are three times more likely to have at least one disability than those who are not incarcerated. Serious mental illness afflicts ten to twenty-five percent of people in prison, where mental health services are often sorely lacking. Black people comprise thirty-eight percent of the federal incarcerated population despite being only about fourteen percent of the US population.

However, the reported prevalence of incarcerated Black people with disabilities may even be too low. Black people in prison self-reported the lowest rate of disability of all the racial groups, leading researchers to believe they were underreporting their disability. Taken as a whole, the available data seems to indicate Black people with disabilities who are in jail or prison are far more likely to be exposed to and catch COVID-19 than the general population.

Improving Data Collection

As the nation tries to get a handle on the crisis, information on exposures, hospitalizations, and deaths related to COVID-19 is being heavily scrutinized and is critical to understanding the appropriate response measures. These data points are being looked at on a number of parameters, including stratified by racial background, and to a lesser extent by disability status.

The race data on case counts is largely incomplete. Only Arkansas, Delaware, Washington D.C., New Mexico, South Dakota, Vermont, West Virginia, and Wisconsin have reported race data on over ninety-percent of their cases. Many states are only reporting race data on less than seventy-percent of cases. These sources that claim to report robust data on COVID-19 are not reporting data on COVID-19’s impact on people with disabilities.

But even where COVID data has been stratified, it has been either by race or by disability. Almost nothing looks at both race and disability. The lack of actual statistics addressing this intersection makes it impossible to know the true scope of the impact COVID-19 is having on Black people with disabilities. This missing information is one more example in a long list of how the experience of Black people with disabilities remains largely invisible and ignored by the dominant identities of this country.

A bill to improve data collection on COVID in assisted living facilities has been proposed as part of the next COVID-19 relief package. The bill requires greater transparency and more timely reporting of facility COVID-19 case counts to health officials, residents, and families. It also expands on the types of facilities required to report data.

A crucial step to understanding the compound marginalization of Black people with disabilities, the bill requires states to report weekly updates to the CDC about infections, deaths, and testing at assisted living facilities including demographic information like race and disability status. Such data would help target resources to Black people with disabilities who are most affected by this pandemic.

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