Although many people with disabilities are more vulnerable to COVID-19, in some US states they fear being left behind in a major effort to get limited vaccines into the arms of those who need them most.
People with disabilities have been removed from the priority list in places like North Carolina and California, where the state has reversed the course after days of public pressure. In Minnesota, parents are unsuccessfully begging to give their vaccination sites to their children whose Down syndrome is up to ten times more likely to die if they contract the virus.
With the limited amount of vaccines and the explosion in many of the United States, it’s hard to get a chance. Groups such as the elderly and emergency workers are in dire need of the vaccine and state health departments say their plans are aimed at making the most of the limited supply. But the pandemic has claimed excessively much for people with disabilities around the world.
People with intellectual and developmental disabilities are often under pressure, which increases the risk of complications when they become ill. They are also more likely to lose their jobs, may have more difficulty wearing masks and social distance, and they had to worry about whether they were less likely to receive critical care in hospitals. Many also had to make do with less help, as caregivers could pose a risk of infection.
The Centers for Disease Control added Down Syndrome to its list of high-risk conditions in late December, but each state has its own plan for distributing vaccines and 20 did not explicitly put people with mental and developmental disabilities on their priority lists, Donna said. said. Martin with ANCOR, a national trade association for service providers for the disabled. Many of those who do prefer live in group homes, a high-risk place, but only a small part of the community.
Some states like Ohio and Tennessee are already vaccinating people with intellectual and developmental disabilities. In Tennessee, officials said data showed that people with disabilities had a mortality rate three times higher than the general population, placing it higher on the priority list. In Ohio, a wide range of people with disabilities were eligible for the vaccine in late January, said Kari Jones, head of the Down Syndrome Association of Central Ohio.
“It was scary, and it was a relief to have at least the first round of the vaccine in people’s arms so far,” she said.
In states like North Carolina and Minnesota, health officials say their plans are still ongoing and are aimed at ending the pandemic as soon as possible. In California, public health officials said people with disabilities could start getting the vaccine within a month, an announcement that came nearly two weeks after they were put on the list.
The wait had many people like Nicole Adler. The 25-year-old was a thriving university student in Redwood City who studied communication, had lunch with friends and attended concerts. All that stopped with the onset of the virus, because Down syndrome makes it five times more likely that she will have to be admitted to the hospital if she becomes ill. It also made the online school much harder to understand, so she had to stop taking classes.
Now she lives with her mother and usually leaves the house only once a week to pick up.
“I was really depressed,” she said. “My life has changed. I’d ruined my life. ‘
In Minnesota, there is still no word on when people with disabilities who do not live in group homes can get the vaccine, said Sarah Curfman, executive director of the Down Syndrome Association of Minnesota.
The terrified parents include people like Suzy Lindeberg from Stillwater. Her hockey-obsessed son, John Lindeberg, 20, managed the high school team before the pandemic, but even if the teens get back on the ice, his Down syndrome means he has to stay home.
“He sees his brother leave after his high school hockey practice, and it’s hard because he really wants to be at the hockey field,” she said. “COVID was very difficult for our house.”
In North Carolina, people with disabilities have recently been moved to the list and do not know when they will be eligible for the shot.
Charlotte Rebecca DiSandro has a rare genetic disorder called Freeman Sheldon Syndrome that affects almost every part of the body.
DiSandro works from home on data entry, but was depressed, missed visiting friends, swimming and cheerleading. “It’s hard for them to understand,” said mother Sharon DiSandro.
Even if people with disabilities do have a priority status, there can be confusion on the ground. Many states have preferred people with high-risk medical conditions, but unless specifically mentioned conditions such as Down syndrome, they may not get the chance to shoot, said Michelle Whitten of the Global Down Syndrome Foundation.
In some cases, states have listed a specific condition without including other rare conditions where fewer scientific studies on the level of risk may occur. Betty Lehman of Centennial, Colorado, said her 32-year-old son’s disability-related medical complications caused him to die a child more than once. However, his specific conditions do not put him on the list, and he will probably only be eligible for the shot in the summer, when other adults his age are eligible, she said. State health officials say their plan is aimed at rescuing as many people as possible, but it remains a difficult pill to swallow for families like the Lehmanes.
“It’s a horror of a broken value system,” she said. “My son is taking a huge risk, other people I care about are taking a big risk, and people are turning their napkins around.”