By Jane McClure

Minnesotans with disabilities continue to be among those scrambling to get COVID-19 vaccinations scheduled. People with Down syndrome and their families are especially worried. They are raising awareness of the need to move up on vaccination priority lists.

People with all kinds of disabilities are seeking help getting vaccines scheduled, due to compromised immune systems and other health issues. While group home and nursing home residents are among the highest priority populations, those who live in the community are not. And that is what raises red flags.

For people with intellectual and developmental disabilities, contracting COVID-19 poses serious if not fatal risks. Not only are community members immunocompromised and have preexisting conditions, many are also dealing with the lack of care the entire Minnesota disability community faces. Questions have also been raised about the ability of people with such disabilities to remember to wear masks and properly social distance.

Statewide and nationally, there is no reliable tracking of the number of COVID-19 deaths among those who have Down syndrome or other intellectual and developmental disabilities.

The Down Syndrome Association of Minnesota (DSAMN) is leading the charge for its constituents, starting a Change.org petition to draw attention to the issue and urging everyone to call elected officials. As of Access Press deadline, 9,656 people had signed the petition.

Sarah Curfman, executive director of DSAMN, said that awareness of where people with Down Syndrome stood in the state’s vaccination line came during a mid-January announcement on priority. “We said, holey moley, we are behind 2.4 million people.”

State officials contend they are doing all they can to get supplies of the vaccines and to work through the priority schedule of when certain groups are to be vaccinated. The priority is currently for more than 1.5 million senior citizens, health care workers, educators and long-term care facility residents. The state was nearing one million vaccinations as February came to an end.

Minnesota has exceeded 6,400 deaths and was closing in on 25,300 hospitalizations of Minnesotans. Almost 90 percent of deaths have been to persons age 65 and older.

Curfman recently posted an update on the petition drive. She called the response from Gov. Tim Walz’s office “lacking.” She has also expressed frustration with conflicting information from the state and the federal Centers for Disease Control and Prevention (CDC) and the fact that the state has removed some pandemic information from its website..

“There wasn’t much substance to the response other than to say, many groups need vaccination, we do not have enough supply, and that they are ‘largely following CDC guidelines’ as to who gets vaccinated first,” she said.

Young adults who have jobs or school, and want to be out in the community are struggling, said Curfman.

Suzy Lindeberg of Stillwater told the Associated Press that 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.”

Curfman pointed out that state officials should also consider CDC guidelines, which call for states to expand their definition of the high-risk adult population from 75 and older to also include 65 and older and those with underlying conditions and to vaccinate that group now.

But state officials have countered that they are dealing with President Joe Biden’s push to have elders vaccinated first, along with health care workers and teachers.

The Arc Minnesota and others have joined DSAMN in support. They are calling on the Minnesota Department of Health to reclassify adults with Down Syndrome to the top of the Phase 1B group of the COVID-19 vaccine rollout. They are currently in Phase 1C, putting them behind about 2.4 million people. That means that more than half of Minnesota’s adult population will have the opportunity to be vaccinated before people with Down Syndrome do.

“It is imperative that the best interests of all people with intellectual and developmental disabilities (IDD) be taken into consideration when making decisions about vaccine distribution. Research shows that adults with Down Syndrome are particularly impacted by COVID-19,” said Andrea Zuber, CEO of the Arc Minnesota.

Adults with Down Syndrome are at a significantly greater risk of death than all the groups currently identified in Phase 1B. An international study indicates that people with Down Syndrome who are hospitalized with COVID-19 and are 40 years of age and older bear most of the increased risk. Their mortality rate is 51 percent as compared to 7 percent for those under 40.

Zuber said the exclusion from the first phase of vaccinations shows that despite high risks for adults with Down Syndrome, discrimination against people with intellectual and developmental disabilities continues. “It is imperative that all people with IDD be elevated and valued for their capacity and intrinsic worth.”

Read the petition at change.org