South Carolina disability advocates say their needs have not been met in the state’s vaccination plan, despite repeated requests for attention.
Everyone living in long-term care facilities is already eligible to receive a vaccine in South Carolina. This includes people with severe disabilities residing in nursing homes and state institutions.
It does not take into account all the others. In fact, South Carolina’s vaccination guidelines make no mention of deficiencies.
Kimberly Tissot, executive director of the advocacy group Able South Carolina, said during a recent statewide vaccine meeting that disability issues were left out of vaccination plans.
“I feel that disability is not being represented or even considered, in fact, because of the idea of how people think our lives are,” said Tissot. “We are all around you. We are not just in nursing homes or institutions.”
She noted that the state’s vaccine registration website is not accessible to the blind, which could be a violation of the Americans with Disabilities Act.
The outcry comes as the waiting list for vaccines gets longer. State hospitals had to interrupt or cancel appointments because vaccine shipments decreased.
Meanwhile, state senators voted on February 9 to place teachers in the first phase of vaccination priority. The bill has not yet become law, but it would add 150,000 people to the list and raise the population in the first phase to 1.4 million – about 30% of the state’s population.
Pawleys Island resident Ken Leach says the population of people with Down Syndrome is “a drop in the ocean” in comparison. One in 700 babies is born with the disorder.
The Centers for Disease Control and Prevention have highlighted a handful of conditions that make people especially at high risk for serious COVID-19 disease and death. Down syndrome is among them. People with the disorder are four times more likely to be hospitalized and 10 times more likely to die from COVID-19, a large study in the UK found.
Leach and his wife, terrified of this reality, tried and failed to schedule a vaccine appointment for Corey, their 41-year-old son. Leach said they also tried to access the doses because they are Corey’s caregivers, but found that their son would have to be a minor in order for them to qualify.
Leach said putting people like Corey on the priority list would work to prevent hospitalizations and deaths, which overburden state hospitals.
Corey has a job at a local Food Lion. But he cannot come to work because of the risks that the virus poses to him.
He wakes up every day asking when he can get back to work, said his father.
“That sounds cruel,” said Leach.
Down syndrome is the only developmental disability on the CDC’s high-risk list. MaryBeth Musumeci, a disability expert at the non-partisan Kaiser Family Foundation, said that most diagnoses were simply not studied for the risks of COVID-19.
Assessing eligibility for a vaccine based on someone’s diagnosis may be causing some of the most vulnerable people to fall into the cracks, she said. “Another way is to look at the functional need and try to treat people who are located in the same way,” she said.
For example: can the person wear a mask? Does a health professional visit you at home?
Musumeci added that most state vaccine plans are like those in South Carolina and do not consider people with disabilities.
Dr. Linda Bell, chief epidemiologist in the SC Department of Health and Environmental Control, said her agency and its partners face difficult decisions about who should be prioritized.
She said that “disability” is a broad umbrella. Including everyone under the umbrella can make healthy people get the vaccine before those with other known risks, said Bell.
Deborah McPherson, a disability advocate and mother of a 36-year-old woman with Down syndrome, pointed out that thousands of people in South Carolina who are in serious need of care live at home, making use of Medicaid exemptions.
These exemptions allow people to receive the care they need and avoid institutionalization. But they have the same level of medical needs as someone who lives in an institution, said McPherson.
She said it would be a simple task to add them to the vaccine line.
“These same individuals have workers entering their homes,” she said. “Many of these workers are exposing the individual and his family to COVID.”
McPherson’s daughter needs attention 24 hours a day since she acquired a rare autoimmune disease at age 17.
But with 1.9 million Southern Carolinians ahead of them in the vaccine line, and only 585,000 having received a dose by February 12, there is no telling how long it will wait.
Catch up Mary Katherine Wildeman at 843-607-4312. Follow her on Twitter @mkwildeman.