From the start of the COVID pandemic, people with disabilities have been left out of the conversation when it comes to fighting the virus, even though they’re members of highly vulnerable communities.
On top of that, the state never collected key data that advocates and experts say could have saved lives and made it easier for those with disabilities to navigate the pandemic.
For people with disabilities, a COVID case, even a mild one, could be a death sentence. It’s something that disability advocates have told public health officials repeatedly over the last two years, as numerous accessibility issues -- from getting PPE to safety in hospitals to signing up for tests and vaccinations -- kept turning into barriers.
In the U.S., 61 million people are living with disabilities. In Michigan, it’s more than 2.3 million, or just under 1 in 3 people. People with disabilities also have other risk factors. They’re more likely to have other health issues. They’re more likely to live in group settings. They’re more likely to have lower income because they need extra medical care, which also means they’re more likely to be in and out of hospitals or receive home care.
Read: The difference between person-first and identity-first language; Why we say ‘people with disabilities’
People with disabilities are at higher risk of death
It depends on a person’s disability, but everyone with a disability is at higher risk. According to studies done mostly in the United Kingdom, over the course of the pandemic, people with mobility issues were up to 3.5 times more likely to die from COVID. People with Autism were also more than 3 times more likely to die and those with Down’s Syndrome were 4 times more likely to be hospitalized and 10 times more likely to die from catching COVID-19.
“It’s terrifying. I mean, you know, right now, we see mask mandates dropping and we see some of the restrictions rolling back, but people with disabilities are still dying disproportionately higher rates,” Ayesha Ghazi Edwin said. Ghazi Edwin lives with Vitiligo, an autoimmune disorder that makes her more vulnerable to contracting a severe case of COVID. She’s also the deputy director for Detroit Disability Power, a disability advocacy group in metro Detroit.
But even though it knew the risk to people with disabilities, the Michigan Department of Health and Human Services doesn’t have any data on its COVID dashboard about them. No case numbers. No hospitalizations and no total for how many people with disabilities died from the virus. The lack of data has left advocates, families and those with disabilities in the dark about how to deal with the virus.
Federal government doesn’t track how many people with disabilities got sick, died from COVID
It’s not just Michigan either. The federal government doesn’t appear to know how many people with disabilities got sick or died because of the pandemic. The CDC only releases publicly the number of vaccinations for those with disabilities.
“We need to start capturing data around people with disabilities because there’s a disparity, and we need to know how to close it. And we need to incorporate that knowledge into our, you know, public health directives and our mitigation efforts. We haven’t seen it happen yet. We’re not entirely sure why,” Ghazi Edwin said.
In late 2021, the Michigan Civil Rights Commission warned the state in a letter sent to Gov. Gretchen Whitmer, Lt. Gov. Garlin Gilchrist and MDHHS that the data for disabilities was “vital” saying “the ongoing covid-19 pandemic has highlighted the inequity that people with disabilities face . . . ” adding “MCRC urges MDHHS to prioritize the capturing and reporting of covid-19 disability-related data at the state level.”
The vital data never made it to the state’s dashboard.
Local 4 asked MDHHS why they were tracking other federally protected classes like age, race and sex but not disability. In an email a spokesperson, Lynn Sutfin said, “it is not collected consistently enough during case investigations to have reliable data through the Michigan Disease Surveillance System.”
“It’s beyond disheartening. It’s extremely tragic, and we see it in everyday people’s lives,” Ghazi Edwin said. “All of these groups are already vulnerable and already marginalized. But if we put a pandemic on top of it, it’s a matter of life or death.”
“It’s extremely important because without that data, we don’t know what adjustments need to be made. What corrections may need to be made. And honestly, we’re going to be looking at how people are living with the long-term effects of COVID. And we want to sort of collect that data as well,” The Chair of Michigan’s Civil Rights Commission Portia Roberson said. Roberson was not chair at the time of the letter in 2021.
No formal task force for people with disabilities
Over the course of the pandemic the state did make efforts to include people with disabilities in work around the coronavirus and equity. Gilchrist led a task force on racial equality that did include input from people with disabilities, but there was never a formal task force for disabilities on their own. In early 2021, the University of Michigan began working on a study using Medicaid data to backtrack cases but Sutfin said it appeared that study was not finished.
Both MDHHS and the CDC have guidelines for people with disabilities, devoid of data. They’re also mostly basic advice like mask wearing or hand washing. Local 4 also reached out to the CDC to find out why the federal agency isn’t tracking disability COVID cases but did not get a response back.
At a recent town hall MDHHS chief medical doctor did address the risk to people with disabilities, but didn’t lay out any specific plans to better collect or release data, nor were there specific plans laid out for how people with disabilities should navigate a shift from pandemic to endemic COVID.
The lack of past data could mean future trouble too. As the effects of lingering symptoms, known as “long-COVID”, become more prevalent there’s growing concern about the civil rights of those with disabilities.
“We’re very concerned, but more so, we’re being proactive.” Tyra Khan said. Khan is currently serving as the interim director of ADA compliance for the Michigan Department of Civil Rights. “There’s two kinds of roads here. There’s how COVID affects people with existing disabilities and then there is the road of how is how does long-COVID play out, which means that it’s going to be creating a whole host of other new people with disabilities.”
“I think that’s what’s so important,” Roberson said. “That, you know, we just recognize that where there were gaps or where there are gaps that we are trying our best to make sure that those gaps don’t exist going forward.”
Read: More COVID data coverage