‘I put my life on maintain:’ Incapacity teams plead for vaccine

Although many people with disabilities are more susceptible to COVID-19, in some U.S. states they fear that they will be massively left behind to get limited vaccines into the arms of those who need them most.

People with disabilities were put on the priority list in places like North Carolina and California, where the state reversed course after days of public pressure. In Minnesota, parents are begging unsuccessfully to give their children their vaccination centers, whose Down syndrome causes them to die up to ten times more often when they contract the virus.

With vaccine supplies limited and rollout in much of the U.S. shaky, getting a shot is difficult. Groups like the elderly and key workers are in dire need of the vaccine, and state health officials say their plans are aimed at making the most of the limited supply. However, the pandemic has also disproportionately affected people with disabilities around the world.

People with intellectual and developmental disabilities are often immunocompromised, which puts them at greater risk of complications if they get sick. They are also more likely to lose their jobs, find it harder to wear masks and social distance, and to worry about whether they are less likely to receive critical care in hospitals. Many also had to get by with less help, as nurses can pose a risk of infection.

The Centers for Disease Control added Down’s syndrome to their list of high-risk diseases in late December, but each state creates its own vaccine distribution plan, and 20 have not explicitly prioritized people with intellectual and developmental disabilities, Donna Martin said at ANCOR, a national trade association for service providers for people with disabilities. Many of those who have priority live in group homes, a higher risk area but only a small portion of the community.

Some states, such as Ohio and Tennessee, are already vaccinating people with intellectual and developmental disabilities. In Tennessee, officials said data showed people with these disabilities had a mortality rate three times higher than the general population and placed them on the priority list. A wide range of people with disabilities were approved for the vaccine in Ohio in late January, said Kari Jones, director of Central Ohio’s Down Syndrome Association.

“It was terrifying to actually have the vaccine in people’s arms, at least the first round, was a huge relief,” she said.

In states like North Carolina and Minnesota, health officials say their plans are ongoing and aim to end the pandemic as soon as possible. In California, public health officials said people with disabilities could start vaccinating in a month. That announcement came almost two weeks after they were put on the list.

The wait was excruciating for people like Nicole Adler. The 25-year-old was a thriving student in Redwood City who studied communication, had lunch with friends, and attended concerts. All of that stopped with the outbreak of the virus because Down’s syndrome increases the likelihood that she will have to be hospitalized if she gets sick. It also made online school much harder to understand, so she had to stop taking classes.

She now lives with her mother and usually only leaves the house once a week for a take-away dinner.

“I was really depressed,” she said. “My life has changed. I’ve put my life on hold.”

There is still no word in Minnesota about when people with disabilities who do not live in group homes could get the vaccine, said Sarah Curfman, executive director of the Minnesota Down Syndrome Association.

Scared parents include people like Suzy Lindeberg from Stillwater. Her hockey-obsessed son John Lindeberg, 20, ran the high school team before the pandemic, but even when the teens are back on the ice, his Down syndrome means he has to stay home.

“He’s watching his brother go to his high school hockey practice and it’s hard because he really wants to be on the hockey rink,” she said. “COVID has hit our house very hard.”

In North Carolina, people with disabilities were recently added to the list and do not know when they will be eligible for the shot.

Rebecca DiSandro, from Charlotte, has a rare genetic disorder called Freeman Sheldon Syndrome that affects almost every part of her body.

DiSandro was working on data entry from home but was depressed, missing visiting friends, swimming, and cheerleading. “It’s hard for her to understand,” said mother Sharon DiSandro.

Even if people with disabilities have priority status, local confusion can arise. Many states have given priority to people with high-risk illnesses, but if orders don’t specifically mention conditions like Down’s syndrome, they can be deterred from enrolling, said Michelle Whitten of the Global Down Syndrome Foundation.

In some cases, states have listed a specific disease without including other rare diseases that may have less scientific studies on the risk level. Betty Lehman, of Centennial, Colorado, said her 32-year-old son’s disability-related medical complications brought him close to death more than once as a child. But his specific conditions don’t put him on the list, so he probably won’t be eligible for the shot until this summer when other adults his age are eligible, she said. State health officials say their plan is aimed at saving as many people as possible, but it remains a tough pill for families like the Lehmans.

“This is a horror show of a broken value system,” she said. “My son is at massive risk, other people I care about are at massive risk, and people ignore them.”

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