Shortsighted COVID policies are accelerating harm for people with disabilities

I used to talk to my college students about all the advances in civil rights and equity that people with disabilities have made over the years. 

Then the COVID-19 pandemic struck. Across the country, countless members of my community were turned away from hospitals, denied lifesaving treatment, forced to remain in dangerous congregate living arrangements, and unable to safely access food, transportation, personal protective equipment, testing and even critical information about how to protect themselves. 

All because of who they were. 

I say “countless” because we have no idea how many people with disabilities have contracted COVID-19, been hospitalized, or died. There is no systematic reporting of COVID-19 testing, infection, mortality or outcomes by disability status. 

Nearly everyone will experience a disability, especially as we age, even if only temporarily. People with disabilities are 26 percent of the population, yet we are invisible — and never more so than during a public health crisis when we are also acutely vulnerable. 

Recently, I served as member of the Robert Wood Johnson Foundation National Commission to Transform Public Health Data Systems. Our job was to make recommendations for modernizing the collection, sharing and use of public health data to advance health equity. While on the commission, I saw that public health data are essential to ensuring that society’s most overlooked members — including not only people with disabilities but people of color, people who are poor and LGBQT people — receive equitable treatment. 

Several decades after racial and ethnic disparities emerged as a serious and widespread public health issue, the country has finally started collecting data that the health care system can use to address those inequities. But, as the commission noted, a great more deal remains to be done. 

Much less has been done to collect and understand data describing the health experiences and needs of people with disabilities. These experiences and needs are diverse, as individuals may have physical, sensory, intellectual, or developmental disabilities, and mental health or other chronic conditions. 

Without data, though, there is no way to measure and understand what is happening to people with disabilities, and therefore no evidence to inform policy for this population. That is why, when the pandemic hit, people with disabilities in many states were subjected to harsh, discriminatory judgment based on what others perceived to be, without evidence, their chances for survival. In essence, those states placed a lower value on the lives of people with disabilities, assuming that they were of lower quality, destined to be shorter, and not worth as much as the lives of others. 

As a result, many people with disabilities found themselves deprioritized by health care providers. Some were refused admission or treatment. Some patients who were admitted were not allowed to bring their personal ventilator devices; others feared that their devices would be confiscated and reallocated to other patients deemed “worthier.” 

Family members were not allowed to visit, which meant that many patients, especially those with intellectual and developmental disabilities, had no advocates when they needed them. Many died alone. 

People with disabilities living in congregate living environments like group homes or nursing homes were at increased risk of infection, yet many had no alternative. Meanwhile, people living in the communities struggled to get their everyday needs met without putting themselves at risk. For example, in New Jersey, people with food stamp debit cards were unable to use them online initially; it took several weeks for the state to fix that problem. 

People with disabilities who were Black or Latinx or poor likely experienced higher levels of discrimination. A study from Johns Hopkins University found that “socio-demographically disadvantaged people with disabilities”— those who were Black Asian, Latinx, Native American, poor, under 18 years old, and female — were “significantly overrepresented in counties with higher COVID-19 incidence” compared to other people with disabilities. 

As the commission observed, we need good, timely public health data to create a true public health narrative that advances equity and centers power in the community — in this case, the disability community. Simply knowing, for example, how many people with disabilities live in each community could have helped public health officials and advocates plan for their at-home testing, health care, food delivery and other needs. 

As a society, we were not prepared for this pandemic — and it won’t be the last public health crisis we face. Public health data have never been more important in what we do moving forward. We must do a better job of making the invisible visible, or we’ll be here again. 

Javier Robles is a Rutgers University professor and director of The Center for Disability Sports, Health and Wellness. He served as commissioner of the Robert Wood Johnson Foundation National Commission to Transform Public Health Data Systems and is currently chair of the NJ Disability Action Committee and vice president of the Latino Action Network.  Follow him on Twitter @thisabled