While many people with disabilities are more vulnerable to COVID-19, in some states in the U.S. they fear being left behind in a massive effort to put limited vaccines in the arms of those who need them most.
Disabled people have been pushed down the priority list in places like North Carolina and California, where the state has changed course after days of public pressure. In Minnesota, parents are pleading unsuccessfully to give their children vaccination points, whose Down syndrome makes them 10 times more likely to die if they contract the virus.
With limited vaccine supplies and unstable distribution across much of the United States, getting an injection is difficult. Groups like the elderly and essential workers are in dire need of the vaccine and state health departments say their plans aim to make the most of limited supplies. But the pandemic has also disproportionately affected people with disabilities worldwide.
People with intellectual and developmental disabilities are usually immunocompromised, which puts them at greater risk of complications if they get sick. They are also more likely to lose their jobs, may have more difficulty with wearing masks and social distance, and have had to worry about whether they are less likely to receive intensive care in hospitals. Many also had to settle for less help, as caregivers can be at risk of infection.
The Centers for Disease Control added Down syndrome to their list of high-risk diseases in late December, but each state has its own vaccine distribution plan and 20 have not explicitly placed people with intellectual and developmental disabilities on their lists. of priorities, said Donna. Martin with ANCOR, a national trade association for service providers for people with disabilities. Many of those who have priority live in group homes, a high-risk location, but which includes 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 the data show that people with these disabilities have a three-fold higher death rate than the general population and put them at the top of the list of priorities. 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 actually having the vaccine in people’s arms, at least in the first round so far, has been a great relief,” she said.
Meanwhile, in states like North Carolina and Minnesota, health officials say their plans are still underway and aim to end the pandemic as soon as possible. In California, public health officials said people with disabilities could start receiving the vaccine in a month, an announcement made almost two weeks after they were eliminated from the list.
The wait was distressing for people like Nicole Adler. The 25-year-old was a successful college student in Redwood City, studying communication, having lunch with friends and going to shows. All of this stopped the virus from appearing because Down’s syndrome increases the likelihood of being hospitalized five times if she becomes ill. It also made the online school much more difficult to understand, so she had to stop attending classes.
Now, she lives with her mother and usually leaves the house once a week to bring dinner.
“I was very depressed,” she said. “My life changed. I put my life on hold ”.
In Minnesota, it is not yet known when people with disabilities who do not live in group homes can get the vaccine, said Sarah Curfman, executive director of the Minnesota Down Syndrome Association.
Terrified parents include people like Suzy Lindeberg of Stillwater. His hockey-obsessed son, John Lindeberg, 20, led the school team before the pandemic, but even when teenagers return to the ice, his Down syndrome means he has to stay home.
“He sees his brother go out for high school hockey practice, and that’s difficult because he really wants to be on the hockey rink,” she said. “COVID has been very hard on our home.”
In North Carolina, people with disabilities have recently been lowered on the list and do not know when they will be eligible for the injection.
Rebecca DiSandro, from Charlotte, has a rare genetic condition called Freeman Sheldon syndrome, which affects almost every part of her body.
DiSandro has been working at home in data entry, but is depressed, missing visiting friends, swimming and cheerleading. “It is difficult for them to understand,” said mother Sharon DiSandro.
Even if people with disabilities have some priority status, there can be confusion on the spot. Many states have prioritized people with high-risk medical conditions, but if the orders do not specifically mention conditions like Down syndrome, they may be prevented from receiving their vaccines, said Michelle Whitten of the Global Down Syndrome Foundation.
In some cases, states have listed a specific condition without including other rare diseases where there may be less scientific studies on the level of risk. Betty Lehman, of Centennial, Colorado, said the medical complications associated with her 32-year-old son’s disability have brought him close to death more than once. But his specific conditions don’t put him at the top of the list, so he probably won’t be eligible for the injection until this summer, when other adults his age will be able to, too, she said. State health officials say his plan aims to save as many people as possible, but it remains a difficult pill to swallow for families like the Lehmans.
“This is a horror show of a broken value system,” she said. “My son is taking a huge risk, other people I care about are taking a huge risk and people are turning a blind eye to them.”