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 are 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 people with disabilities to navigate the pandemic.
For people with disabilities, even a mild case of COVID could be a death sentence. It’s something disability advocates have repeatedly told public health officials over the past two years, as many accessibility issues — from getting PPE to staying safe in hospitals to registering for tests and vaccinations – have steadily turned into roadblocks.
In the United States, 61 million people live with a disability. 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 are more likely to have other health problems. They are more likely to live in groups. They are more likely to have lower income because they need additional medical care, which also means they are more likely to be hospitalized or receive care at home.
Read: The difference between person-centered language and identity-centered language; Why do we say “people with disabilities”
People with disabilities are at higher risk of death
It depends on the person’s disability, but anyone with a disability is at greater risk. According to studies carried out mainly in the UK, during the pandemic, people with mobility problems 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 syndrome were 4 times more likely to be hospitalized and 10 times more likely to die after catching COVID-19.
” It’s terrifying. I mean, you know, right now we’re seeing mask mandates falling and we’re seeing some of the restrictions backing off, but people with disabilities are still dying at disproportionately higher rates,” Ayesha Ghazi Edwin said. Ghazi Edwin lives with vitiligo, an autoimmune disease that makes her more vulnerable to contracting a severe case of COVID. She is also the deputy director of Detroit Disability Power, a disability advocacy group in Metro Detroit.
But even though he knew about the risk to people with disabilities, the Michigan Department of Health and Human Services has no data on its COVID dashboard about them. No file number. No hospitalizations and no total for the number of disabled people who have died from the virus. The lack of data has left advocates, families and people with disabilities in the dark about how to deal with the virus.
The federal government does not track the number of people with disabilities who have fallen ill and died from COVID
It’s not just Michigan either. The federal government does not appear to know how many people with disabilities have become ill or died due to the pandemic. The CDC only publicly releases vaccination counts for people with disabilities.
“We need to start collecting data on people with disabilities because there is a disparity and we need to know how to close it. And we need to incorporate that knowledge into our, you know, public health guidelines and our mitigation efforts. We haven’t seen it happen yet. We don’t know exactly why,” said Ghazi Edwin.
At the end of 2021, the Michigan Civil Rights Commission warned the state in a letter sent to Gov. Gretchen Whitmer, Lt. Gov. Garlin Gilchrist and MDHHS that disability data was “vital” saying “the ongoing covid-19 pandemic has highlighted the inequality that people with disabilities face. . . adding, “The MCRC urges MDHHS to prioritize the collection and reporting of covid-19 disability-related data at the state level.
Vital data never made it to the state dashboard.
Local 4 asked MDHHS why they track other federally protected classes like age, race and gender, 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 more than disheartening. It is extremely tragic, and we see it in the lives of ordinary people,” said Ghazi Edwin. “All of these groups are already vulnerable and already marginalized. But if we add a pandemic on top of that, it’s a matter of life and death.
“This is extremely important because without this data we don’t know what adjustments need to be made. What corrections may be needed. And honestly, we’re going to look at how people are living with the long-term effects of COVID. And we kind of want to collect that data as well,” said Michigan Civil Rights Commission Chair Portia Roberson. Roberson was not president at the time of the letter in 2021.
No official working group for people with disabilities
During the pandemic, the state has made efforts to include people with disabilities in work around the coronavirus and equity. Gilchrist led a racial equality task force that included input from people with disabilities, but there was never a formal disability task force. In early 2021, the University of Michigan began working on a study using Medicaid data to escalate cases, but Sutfin said it appeared the study wasn’t finished.
Both the MDHHS and the CDC have guidelines for people with disabilities, which lack data. These are also mostly basic tips like wearing a mask or washing your hands. Local 4 has also contacted the CDC to find out why the federal agency is not tracking disability COVID cases, but has not received a response.
At a recent town hall, the MDHHS chief medical officer addressed the risk to people with disabilities, but did not outline any specific plans to better collect or publish data, nor were there any plans. about how people with disabilities should navigate change. from pandemic to endemic COVID.
Lack of past data could also mean future problems. As the effects of lingering symptoms, known as “long-COVID”, become more widespread, there is growing concern about the civil rights of people with disabilities.
“We are very worried, but even more so, we are proactive.” said Tyra Khan. Khan is currently the Acting Director of ADA Compliance for the Michigan Department of Civil Rights. “There are two types of roads here. There’s how COVID affects people with existing disabilities, and then there’s how the long COVID is going, which means it’s going to create a whole host of other new people with disabilities.
“I think that’s what’s so important,” Roberson said. “That, you know, we’re just acknowledging that where there were gaps or where there are gaps, we’re doing our best to make sure those gaps don’t exist in the future.”
Read: More COVID data coverage
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