Legally blind and alone, Katrina Byrd of Jackson, Mississippi, was reeling from her partner’s death from ALS when the pandemic sent her into isolation, cutting her off from the services and help she needed.
Zephyr Ostrowski of Milford, Indiana, who is autistic and a year into the long-term effects of having COVID, fears she’ll never regain what health she had before the pandemic.
Zahara Khan, an MIT graduate in Pasadena, California, with multiple health issues, is distressed about the lifting of pandemic restrictions that make her even more high risk for infection.
“If you are someone high-risk, there are no more public health processes to help. It’s been two years now. There’s just no planning for people like me,” Khan said. “It just feels like we are being ignored in all this, especially those that need the most help.”
These three are among the hundreds of thousands of Americans the National Council on Disability concluded have been disproportionately affected by COVID-19.
The council, an independent federal agency, released a report in 2021 examining COVID’s impact on people, finding that the pandemic exacted a steep toll on certain populations of people with disabilities and that the events that unfolded during the pandemic, including measures to mitigate the spread, posed unique problems and barriers to people with disabilities.
Byrd, 50, who was born with congenital cataracts, lost most of her sight from the surgery she underwent at 2 months old to remove cataracts. In the fall of 2020, in the midst of the limitations on surgeries and the high numbers of COVID patients in the hospitals, she had another surgery on her right eye to implant a new lens after her last one failed. (Her left eye is stable.)
COVID in Mississippi: Cases on the rise in Mississippi. Vaccines and boosters available
After the procedure, the pandemic and her disability left her trapped in her house, dependent on friends or Uber to drive her where she needed to go. “Uber is good, but it is expensive,” Byrd said. “I get a guaranteed $1,200 a month as a disabled person. When you put in a house note, house insurance, gas, water and food — then $45 a day to travel somewhere.”
She adapted, ordering in groceries and her prescriptions for her eye and her diabetes medications. But other problems soon arose.
She would pay an extra $10 for groceries to be delivered and not receive all of her items. She would order bottled water, only to be told the stores were out. “I live in a city where you have to pay for water and still buy water to drink,” Byrd said.
So, she simplified her cooking and boiled water on the stove to make it safe to drink.
Her link to the outside world became Zoom calls, where she conferred with ALS sufferers and volunteers, chatted with friends, and did advocacy work for I AM ALS, an organization she joined in the wake of the death on Feb. 2, 2020, of her partner, Dora G. Robertson, a former faculty secretary at Millsaps College.
She continues to mask where appropriate, fearful of catching COVID-19 — her diabetic diagnosis makes her vulnerable to death from the virus, even though she is vaccinated. A friend drove her to Natchez to get the vaccines as soon as possible.
Stories like hers exist all over the U.S., the National Council on Disability found.
‘Data dearth’ left those with disabilities uncounted amid pandemic
“For decades, federal and state healthcare data collection practices failed to capture baseline information about the functional disability status of patients and the public, leaving people with disabilities uncounted during and after public health emergencies,” the report said in its executive summary.
The council found this “data dearth” impeded its ability to collect real-time, accurate information about the impact of COVID-19 on people with disabilities or the healthcare disparities they experienced during the pandemic.
The report noted informal and formal Crisis Standards of Care that guides use of scarce healthcare resources in surge situations targeted people with intellectual or developmental disabilities and medically fragile and technology-dependent individuals for denial of care. Many states did not prioritize people with disabilities and chronic conditions particularly high risk of infection or of severe consequences from the virus when vaccines received emergency use authorization.
The council also found people with disabilities had limited opportunities to move out of group settings to reduce their risk of infection. Because many of these individuals depended on direct care workers, they were adversely affected when the pandemic led many of these workers — mostly women of color earning less than a living wage and lacking health benefits — to leave their positions for fear of infection and spreading the virus. Deaf, hard of hearing, deaf-blind, and blind persons faced a “profound communication gulf” as masks became commonplace, making lipreading impossible and sign language harder.
COVID-19 ‘exacerbated’ existing problems within our system
It also noted disparities in employment and education access during the pandemic and that the condition of those with mental illness pre-dating the pandemic deteriorated amid the lack of access to community services and suicide prevention.
Zahara Khan, 37, of Pasadena, California, lost her job because of COVID restrictions when her previous office did not allow her to work from home. Khan suffers from Ehlers-Danlos syndrome, which affects connective tissue, primarily the skin, joints and blood vessel walls; postural orthostatic tachycardia syndrome, which affects women between the ages of 15 and 50 with lightheadedness, fainting and rapid heartbeat; and a visual impairment as a result of brain surgery in 2019.
The MIT-grad took a job in fall 2020 for a company developing autonomous cars. Her disabilities trapped her in her home. She only leaves to go to doctors’ appointments. Even when she thought she had COVID in 2020, she was unable to go to a drive-thru test center because she had given up her car when the lease ran out. She found out about a program to test at home through a friend’s post on Facebook. “It just feels woefully inadequate,” Kham said in a video call.
Dr, Rebekah Young, executive director of the Institute for Disability Studies at the University of Southern Mississippi in Hattiesburg, said COVID brought attention to challenges faced by people with disabilities to the forefront. “COVID-19 really exacerbated some of the existing problems within our system,” Young noted.
Outbreaks in long-term care facilities and nursing homes for the elderly were rivalled by outbreaks in state-run residential facilities for individuals with intellectual disabilities and mental illness. Young said, in the midst of the pandemic, there was nowhere for the disabled to go — congregate settings such as group homes and institutions were increasingly risky, and many had difficulty receiving home-based care or community-based solutions.
Education systems were closed down, including K-12 schools as well as colleges and universities. But a subset of the school population was hit harder than others.
“Special education services were particularly impacted when schools went virtual,” Young said.
Students with individualized education plans or IEPs were often unable to cope with learning virtually at home. Computer learning cut out individualized instruction or reduced teachers’ ability to provide extra time to complete assignments for students requiring such, Young said.
Many students needing evaluation to diagnose learning disorders, autism or other intellectual disabilities were subjected to long waits for the specialized testing needed. “There’s already a wait before COVID of four to six months,” Young said.
Joy Hogge, executive director of Families as Allies in Jackson, echoed Young’s observations. The pre-pandemic issues of school districts appearing to delay evaluations for special education for children with disabilities or giving parents inaccurate information on deadlines “have become much worse,” she said. “This results in families understandably being even more angry and frustrated when their children’s rights appear to have been violated.”
Hogge said she understands schools were stretched thin during the early days of the pandemic, providing different services to many subsets of students, including children who were food insecure and those that lacked reliable internet. But parents of children receiving special education services had a right to be frustrated, she said.
“None of that relieves school districts of their legal obligation to actively look for, evaluate and accommodate children with disabilities and for the Mississippi Department of Education to make sure that happens. The United States Department of Education under both the Trump and Biden administrations has been abundantly clear about that,” Hogge said.
The most vulnerable students fell further behind
Renee Gammill, a special-education teacher most recently working on the Mississippi Gulf Coast, said children in her classes definitely fell behind during the pandemic. Many children with severe physical disabilities or who were otherwise medically fragile simply stopped attending school. “There was a lot of fear in sending their students who were medically compromised,” Gammill said of parents.
Children often ignored masking and other quarantine protocols, Gammill said. She noted one administrator and her entire department refused to mask at her school, definitely sending mixed messages to students. “I didn’t think that was good leadership or good judgment. Then they all got sick,” Gammill said.
Even once the vaccines started rolling out, the National Council on Disabilities report found many instances of people with various disabilities being locked out of the opportunity to receive the vaccines in a timely fashion.
Mississippi sees new COVID surge:Cases up 220% over two weeks in Hinds County
Learning definitely suffered during the pandemic, particularly for the most vulnerable students, Gammill said. “Kids in the bottom two quartiles were allowed to fall further and further behind,”
Among the reasons: poor or no internet reception at home, lack of supervision of students during school time and a lack of understanding on the part of the parents to help their students operate the computers, Gammill said.
Gammill also said the increase in computers in the classroom was a positive outcome of the pandemic. “Now each student has their own computer. The pandemic forced that.”
‘Long COVID’ means virus is never really gone
Not addressed in the report is what various experts are calling “a mass disabling event” — colloquially known as “long COVID,” where systemic changes occur in the body after infection. Although it is known those with disabilities suffer more with COVID-19 once they catch it, very few scientific studies exist of members of this population, estimated to be over half of the 236 million people diagnosed with COVID-19 worldwide since December 2019, according to research by Penn State College of Medicine.
Zephyr Ostrowski, 28, of Milford, Indiana, who is autistic, was working in a hot tub factory when news of the pandemic began to spread in February 2020. “There was no real plan by the company that was communicated to the employees, which was all too common in the time I was there. Anxiety was in the air along with the earliest conspiracies. ‘Flatten the curve’ was the catchphrase in the news,” Ostrowski said.
The company limited its sanitation plan to the main offices, leaving workers on the factory floor vulnerable. “As a means to protect myself I lied and said that my partner contracted COVID and I had to stay home.” Because the government deemed the company a nonessential business, the factory halted production, Ostrowski said.
Ostrowski’s partner, however, was considered an essential worker, leaving Ostrowski fearful he would bring the virus home. Then in January 2021, Ostrowski’s partner lost his sense of taste and smell while recovering from what they thought was a cold. Both were diagnosed with COVID. The partner recovered. Ostrowski did not.
Ostrowski developed an aversion to most smells, lapses in memory, brain fog, fatigue and severe sciatica that required use of a cane. Ostrowski’s been turned down for disability benefits. Now a year into what is known as “long COVID,” Ostrowski feels bleak about the future. “I don’t expect to be back to where I was medically before the pandemic,” Ostrowski said. “The concept of ‘living with COVID’ that’s been adopted is defeatist at best and nihilistic at worst, all of this assuming that you have never and will never contract it.”
This story was produced by the Mississippi Center for Investigative Reporting, a nonprofit news organization that is exposing wrongdoing, educating and empowering Mississippians, and raising up the next generation of investigative reporters. Sign up for our newsletter. Email Julie Whitehead at [email protected].
