Evan Hookey, 29, of Princeton, New Jersey, received his first Covid-19 shot from a mobile unit working at Trenton Central High School. The in-vehicle shot reduces waiting time and potential virus exposure for people like Evan with autism and others with physical and developmental disorders.
Source: Gina Hookey
Millions of Americans with disabilities are overlooked during pandemic recovery, stay at home with no therapy or social programs, and struggle to book Covid-19 vaccinations.
In Connecticut, a March 1 switch to an age-based vaccination system angered proponents, who said the decision was made by residents with special needs. Disability rights groups in Arizona are pushing for faster access to shots and citing a higher risk of Covid-19 death. From coast to coast, vaccination booking sites that lack adaptive software confuse people with vision problems.
“A year into the pandemic, we just wonder how we can make vaccine filing universal and accessible,” said Bryan Bashin, CEO of LightHouse for the Blind and Visually Impaired in San Francisco.
Approximately one in four American adults, or 61 million people, has a disability that can affect mobility, cognitive function, hearing, and vision, according to the U.S. Centers for Disease Control and Prevention. Thirty years after the Disabled Americans Act fundamentally changed the way public and private institutions deal with them, the pandemic is once again showing how the disabled can be forgotten, proponents say.
In New Jersey, Princeton-born Evan Hookey, 29, who has autism, scored the first of two vaccine shots on Feb.21. His mother Gina said that after more than a year at home, he was so excited to be around people again that “You might have thought he was going to a birthday party.”
It’s not certain when Hookey will return to his job piling inventory at a Wawa supermarket or his daily routine of exercising, socializing, and doing food preparation and art projects. The government of Governor Phil Murphy allows some of the state’s 400 such programs to reopen with 50% capacity and other restrictions on March 29th.
In Wilbraham, Massachusetts, Brad Kane and his wife spent more than a year without home therapy for four children with autism, ages 7-13. Each child received two to four hours of attention a day, five days a week. When the pandemic broke out, the sessions ended with no indication of when to restart. Some of the children have gone back.
“It’s harder to get them to do the things they need to do, like language and emotional development,” said Kane, an editor. “Getting everyone to sleep at the same time is an uphill battle.”
In February, Kaiser Health News and WebAIM, a nonprofit group working on Internet accessibility at Utah State University, identified nearly 100 state vaccination websites lacking screen reading technology for the visually impaired. The number can be far higher as even some websites using the software can link to others without a Baltimore group advocating more than 7 million visually impaired Americans, according to the National Federation of the Blind.
“I should have the same options as everyone else,” said Chris Danielson, spokesman for the association. “Booking a shot is frustrating for everyone as most people try multiple times. We are not asking for any special treatment – we just want the same barriers, nothing more. “
In some places lawyers have gone to court in search of equal access.
Idaho lawmakers reached a legal agreement on March 5 to ensure people with disabilities can testify remotely before committees. A federal lawsuit initiated by five disability rights groups in January was settled, in which personal appearances endangered the risk of the novel coronavirus.
A federal lawsuit by Arc Maryland alleging unequal access to Covid-19 vaccines caused several county governments to change their websites in March to determine that people with intellectual and developmental disabilities are eligible for inclusion.
Edwin Singer, president of the Maryland Association of County Health Officers, said no one set out to discriminate. “We’d been taking names and listing and registering people since the state came out in January saying we could vaccinate people with disabilities,” said Singer, Carroll County’s health officer.
Elsewhere, local governments are making headway with their own reach. Firemen in Corpus Christi, Texas, administer up to 100 door-to-door shots to the elderly and the disabled every day. Some vaccination centers in New Jersey have optimized check-in and designated areas to limit light, noise, and crowds. Orange County, California, is directing people with special needs to Anaheim to get vaccinations in a Disneyland parking lot.
“It takes a little more manpower to take care of people in their cars, and it’s a little harder to make sure they don’t have a response,” said Doug Chaffee, a district manager. But it’s more convenient for people with disabilities and parents whose autistic children may object to masking or long waits, he said.
While some states, including Alabama and Washington, recently extended vaccine appointments to people with special needs, others don’t give them priority access. Disability Rights Connecticut filed a civil rights complaint on Feb. 24 alleging discrimination after Governor Ned Lamont set eligibility for vaccination based on age. The CDC recommends a risk-based approach.
“It’s annoying – people think the Americans With Disabilities Act magically fixed all disability-related issues, but it hasn’t,” said Sey In, an attorney for the Arizona Center for Disability Law, who this tries to increase dates. He cited research from Thomas Jefferson University which found that people with intellectual disabilities were almost six times more likely to die from Covid-19 than people without such a condition.
“We have made changes to our prioritization system that will result in Arizonans with disabilities being vaccinated faster,” said CJ Karamargin, a spokesman for Governor Doug Ducey.
The local governments of the state decide at their own discretion who is shot. Home to approximately 1 in 7 Arizonans, Pima County began offering them to disabled people living in private homes on March 15. A similar policy will go into effect in Connecticut in early April.
“There is a clear link between age and severe infection and death from Covid-19,” said Max Reiss, a Lamont spokesman. “This system ensures that the people at greatest risk receive the vaccine sooner than the rest of the population.”
Back in New Jersey, the Hookey family wait for Evan to get back to work. His father Lawrence takes care of him while he works from home. Gina goes into her office and brings Henry, the family’s dachshund mix, with her because Evan isn’t always ready to go for a walk. Not sure when his routine will return.
“We still do not know which program location he will go to and whether there is space due to the distancing and whether he needs a Covid test,” she said. “All of these things are waiting to be heard.”
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