Folks With IDD Are Serving to Suppliers Enhance The Vaccination Expertise

A stack of vaccination cards is waiting to be handed out after individuals receive their Moderna COVID-19 vaccines. (Kimberly P. Mitchell / Detroit Free Press / TNS)

PHILADELPHIA – When Natasha Black found out she was eligible to receive a COVID-19 vaccine, she said she was excited – and hoped that daily life could finally return to normal.

Black, a member of a self-advocacy group for people with intellectual disabilities, had passed the year with no family, friends, or work. Isolated in her group home in the suburbs of Pennsylvania, she missed walking, chatting with neighbors, and playing a game of pickup soccer.

“I was home every day – there was nothing we could do,” said Black, who knew she had to be extra careful not to get coronavirus. “I was worried. I was bored. I’ve had some tough times,” she said.

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People with intellectual disabilities are at a much higher risk of developing COVID-19 than the general population. However, most were not recommended for higher priority vaccination by the Centers for Disease Control and Prevention. (Some states have prioritized people with intellectual disabilities, and advocates have advocated higher prioritization in other states.)

A study published in March by researchers at Thomas Jefferson University that examined more than 64 million patients found that intellectual disability was the “strongest independent risk factor” for contracting COVID-19.

People with intellectual disabilities were also more likely to die from the virus. Age was the only risk factor more related to death from COVID-19, according to the study. In addition, people with intellectual disabilities hospitalized with the virus were six times more likely to die.

There are a few reasons intellectual disabilities can make people more vulnerable, said Wendy Ross, a medical doctor, director of the Jefferson Health Center for Autism and Neurodiversity, and one of the study’s authors.

However, people living in community facilities such as skilled care facilities or suffering from other high-risk health issues are not the only members of the intellectual disability community at higher risk for the virus, as the study also checked people in these categories.

Some people with intellectual disabilities have sensory issues that make wearing masks difficult for long periods of time, Ross said. Others who live at home may have therapists and other support staff passing by, exposing them to the virus. Many are more likely to use public transport to get around, another route of exposure.

Whatever the reasons for the increased risk, Ross said, the study showed that vaccinating people with intellectual disabilities is imperative.

After she and other advocates urged that their patients be prioritized for vaccination, Philadelphia health officials began doing so in March.

Achieving vaccine prioritization, however, was only part of the battle. The next was to make the vaccine easier for people like Black and members of her advocacy group.

“(People with intellectual disabilities) tend to be less hesitant – they know they are at risk. They didn’t need a study to know they were at risk. They live it every day, ”said Ross. “However, our goal is not to convince people to get vaccinated. Our goal is to make it as accessible and easy as possible. “

Ross and other Jefferson doctors met with advocates like Black, whose group is led by Carousel Connections, an education and support program for people with disabilities in the Philadelphia area. In focus groups, Black and others spoke about how the vaccination experience can be facilitated.

“Headphones – that’s one of my calming tools,” said Black. Others asked for sunglasses to deal with photosensitivity, fidgeting devices to distract them, or shot blocker discs – devices sometimes used to relieve pain during injections. Ross and her colleagues also recommended that vaccinates spend a little more time with people with intellectual disabilities.

“The advice (members of the focus group) was advice from which everyone could benefit,” said Ross. “What you see is, ‘Just be nice to me and be positive and encouraging. Distract me – ask if I have a favorite song. Tell me i’m doing a good job ‘Who doesn’t benefit from all of these things? “

Carousel Connections self-advocacy members who had already been vaccinated said they would look forward to returning to some sort of normalcy.

“(When I heard about the vaccine) I was ready to get it. I can’t wait to hang out with people, ”said Gerard Hasson, who works in maintenance and landscaping at a school in the suburbs. His advice for the shot? “Do not be nervous.”

The group, led by Carousel Connections program director Amy McCann, discussed their concerns about contracting the virus, how to get the vaccine, and what to expect when their turn came.

“Not knowing when to get it was really hard,” McCann said. “We talked about why hospital workers came first and how we waited to get their turn – and with Dr. Ross we really helped stand up for why our community needed it too.”

Another member of the self-advocacy group, Owen Ahearn-Browning, said he was still nervous about contracting the virus, even after being vaccinated. “I wear a mask, I wash my hands, I keep my distance,” he said. “I’m still scared of the virus.” He said talking to family members about how he was feeling helped. I look forward to everything he can do now that he’s vaccinated.

Black, who had three jobs prior to the pandemic, was home all day when the pandemic lockdown began. It was an abrupt and sometimes rocky adjustment. But she recently got vaccinated in her group home.

“I look forward to being with my family – and not just my family. I can’t wait to go to work when it’s all over, ”she said.

According to Ross, Jefferson’s doctors are working to vaccinate people with intellectual disabilities inside and outside their health network – essentially anyone looking for an appointment – as well as their caregivers and implement focus group recommendations. They also recommend larger vaccination sites geared towards the general public so that they can better accommodate neurodiverse individuals.

“What we want to see for them is that they all have an education,” she said. “Perhaps the first hours of the day can be reserved for this population or planned more slowly. You don’t have to change everything, but we strongly believe that everyone should have a background on this population. “

© 2021 The Philadelphia Inquirer
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