People with disabilities have been pushed down 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 vaccination spots to their children whose Down syndrome makes them up to 10 times more likely to die if they catch the virus.
People with intellectual and developmental disabilities are often immunocompromised, putting them at greater risk for complications if they get sick. They're also more likely to lose their jobs, can have a harder time with mask-wearing and social distancing, and have had to worry about whether they would be less likely to get critical care at hospitals. Many have also had to make do with less help, since caregivers can be an infection risk.
The Centers for Disease Control added Down syndrome to its list of high-risk conditions in late December, but each state makes its own vaccine distribution plan and 20 haven't explicitly placed people with intellectual and developmental disabilities disabilities on their priority lists, said Donna Martin with ANCOR, a national trade association for service providers for people with disabilities. Many of those who do have priority live in group homes, a higher-risk location but one that includes only a small portion of the community.
Some states like Ohio and Tennessee are already vaccinating people with intellectual and developmental disabilities. In Tennessee, officials said data showed people with those disabilities had a death rate three times higher than the general population, and put them higher on the priority list. In Ohio, a wide range of people with disabilities became eligible for the vaccine in late January, said Kari Jones, head of the Down Syndrome Association of Central Ohio.
“It’s been terrifying, so to actually have the vaccine in people’s arms, at least the first round so far, has been such a relief,” she said.
In states such as North Carolina and Minnesota, meanwhile, health officials say their plans are still in progress and aimed ending the pandemic as soon as possible. In California, public health officials said people with disabilities could begin getting the vaccine in a month, an announcement that came nearly two weeks after they were pushed down the list.
The wait was agonizing for people like Nicole Adler. The 25-year-old was a thriving college student in Redwood City studying communications, eating lunch with friends and going to concerts. All that stopped with the onset of the virus because Down syndrome makes it five times more likely she'd have to be hospitalized if she got sick. It also made online school much more difficult to comprehend so she had to stop taking classes.
Now, she lives with her mother and usually leaves home one just once a week to get takeout dinner.
“I was really depressed," she said. “My life changed. I put my life on hold.”
In Minnesota, there's no word yet on when people with disabilities who don't live in group homes might get the vaccine, said Sarah Curfman, executive director of the Down Syndrome Association of Minnesota.
The terrified parents include people like Suzy Lindeberg of Stillwater. Her hockey-obsessed son John Lindeberg, 20, managed the high school team before the pandemic, but even as the teens get back on the ice his Down syndrome means he has to stay home.
“He watches his brother leave for his high school hockey practices, and that's hard because and he really wants to be at the hockey rink," she said. “COVID has been very hard on our house.”
In North Carolina, people with disabilities were recently moved down the list, and don’t know when they’ll be eligible for the shot.
Rebecca DiSandro of Charlotte has a rare genetic disorder called Freeman Sheldon syndrome that affects nearly every part of her body.
DiSandro has been working from home on data entry but has been depressed, missing visiting friends, swimming and cheerleading. “It’s hard for them to comprehend,” said mother Sharon DiSandro.
Even if people with disabilities do have some priority status, there can be confusion on the ground. Many states have given priority to people with high-risk medical conditions, but if orders don’t specifically mention conditions like Down syndrome, they can be turned away from getting their shots, said Michelle Whitten with the Global Down Syndrome Foundation.
In some cases, states have listed a specific condition without including other rare conditions where there may be fewer scientific studies on the risk level. Betty Lehman of Centennial, Colorado, said her 32-year-old son's disability-associated medical complications left him near death more than once a child. But his specific conditions don't move him up the list, so he likely 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 hard pill to swallow 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 are turning a blind eye to them.”