'I put my life on hold:' Disability groups plead for vaccine

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Suzy Lindeberg poses with her 20-year-old son John on a hockey rink, Tuesday, Feb. 9, 2021, in Stillwater, Minn. John, who has Down Syndrome, can't spend as much time at the rink as he used to since he is at higher risk for hospitalization or death if he caught COVID-19, but his mother and other advocates worry that the state of Minnesota has placed people with disabilities too far down the priority list. (AP Photo/Jim Mone)

Though many people with disabilities are more vulnerable to COVID-19, in some U.S. states they fear being left behind in a massive effort to get limited vaccines into the arms of those who need them most.

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.

With vaccine supplies limited and the rollout shaky in much of the United States, getting a shot is difficult. Groups like older people and essential workers are in dire need of the vaccine and state health departments say their plans are aimed at making the most of limited supplies. But the pandemic has also taken a disproportionate toll on people with disabilities around the world.

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.