Two moms push for Nebraskans with Down Syndrome to be added back to priority list

After people with underlying conditions were removed from the priority list, two moms of children with Down syndrome have been fighting for an isolated population as they wait to return to society.

LINCOLN, Neb. (KLKN) — After people with underlying conditions were removed from the priority list two moms of children with Down syndrome have been fighting for an isolated population as they wait to return to society.

According to health officials, people with Down Syndrome, especially adults, are 10 times more likely to die from COVID according to health officals. Down Syndrome Association for Families Executive Director Jamie Bertucci and Marketing Director Mary Sweeney both have children with Down Syndrome. So the issue is personal as well as vital for their families and the people in Nebraska they represent.

“Being a mother of a child with Down Syndrome, I think it kind of takes the wind out of your sails,” said Mary Sweeney. “Where, you know, you think, like, I love my kid why wouldn’t the rest of the community and then when suddenly a blanket statement like that is made to withdraw people with Down syndrome from the list of just, you know, kind of hurts in a way of, like, well, why aren’t people with Down syndrome as important as everyone else.”
Sweeney says some people with Down Syndrome in our state have not left their homes since the pandemic began. She says the pandemic has been hard on those children, adults, and their caregivers who work hard to keep everyone safe. Bertucci adds the time is now as people with Down Syndrome are important and strive to be a vital part of the community.

“When I received the news I just felt like we have so much work to do,” said Bertucci. “We really need Nebraska to see the value of individuals with developmental delays and people with Down syndrome are wonderful individuals to get to know. They should be included and accepted and embraced and loved and vaccinated.”

They also don’t agree with the latest changes, that one could get a doctor’s approval to prove their underlying conditions and that they need the vaccine.

“It is a great step forward,” said Sweeney. ” It makes it a little bit difficult because now instead of just being able to sign up for the vaccine, because you have Down syndrome, you have to go to the doctor and you have to essentially prove yourself worthy, and then you take the time to do that and then you have to wait for the approval and then you have to wait to get in line for COVID for the vaccine. So it just elongates the process where these people have been waiting and waiting and waiting already for, I mean over a year for their lives to just even come back to some semblance of normalcy.”
Bertucci says it just elongates the process for those who need the vaccine to return to society.

“Maybe some of the responsibility has just shifted to primary care providers to make that call, you know, to decide is this, this person more worthy than this person and it kind of just shifted that responsibility,” said Bertucci. “But it didn’t really address the issue that individuals with developmental delays are at greater risk and should be prioritized for the COVID-19 vaccine.

The two leaders point out World Down Syndrome day is March 21st and while they will have activities for families to do online and around the Capital City, they hope people with underlying conditions are added as a priority back to the list for COVID-19 vaccines.