For weeks, Kristine Phelps has been scouring the Minnesota Health Department's website, hoping to find the words "developmental disability" or "Down syndrome" somewhere in the government's plan for rolling out the coronavirus vaccines.
But each search ends in disappointment for Phelps, who cares for her 29-year-old daughter Hannah, who has Down syndrome and lives at her home in south Minneapolis. So far, the state's plan makes no mention of when people with disabilities who live at home will get the lifesaving shots.
"We feel forgotten," said Phelps. "When it comes to the vaccine, it's like we're deemed second-class citizens or even worse — we're invisible."
Research published this fall found that adults with Down syndrome are nearly five times more likely to be hospitalized from COVID-19 and 10 times more likely to die from the virus than the general population. The risks are so high for this population that the federal government in late December added Down syndrome to its select list of a dozen health conditions that carry an increased risk of severe illness from COVID-19.
Yet six weeks after the vaccines arrived, Minnesotans with disabilities and their families fear they are being left out of the state's phased rollout efforts. Their letters and calls to be included in the state's distribution plan have gone ignored, they say, leaving them frightened and confused about how long they will have to wait. While largely confined in their homes, they have watched as other states, including Indiana, Ohio, Pennsylvania, Tennessee and Texas, have put people with disabilities high on their priority lists for the vaccines.
In a statement, the state Health Department said people with Down syndrome and other disabilities who live in congregate care facilities, like group homes, are included in the first phase of the vaccine rollout.
The state is still evaluating how to prioritize other populations, including people with disabilities who live independently and those with underlying health conditions.
"There are many Minnesotans who need and deserve the vaccine right now," the agency said in its statement. "That's why Gov. [Tim] Walz and [Health] Commissioner [Jan] Malcolm have continued to press the federal government to send more vaccine as quickly as possible and will announce more soon about how more Minnesotans can expect to access vaccine in the coming months."
For now, there is not enough vaccine supply for everyone to get shots at once, so officials have prioritized doses primarily based on age, occupation and where people live.
Once the state finishes vaccinating its first priority group — which includes 500,000 health care workers and residents of congregate care facilities — it is moving on to 1.1 million Minnesotans who are 65 and over, as well as schoolteachers and child care workers.
But disability advocates say the state's vaccine rollout reflects a long-standing bias against people with disabilities who live independently in the community.
Under the plan, thousands of Minnesotans who live in more institutional settings, such as four-bedroom group homes and assisted-living facilities, have been able to get the shots, while those who live in their own homes and apartments have not. In addition, many home health care workers have been inoculated before their clients with disabilities, even when these clients have been at greater risk of becoming severely ill or dying from the virus.
By prioritizing people who live in facilities, Minnesota and other states are violating their legal duty to provide equal access to care to people with disabilities no matter where they live, some legal observers argue. Federal law requires that people with disabilities should receive services in the most integrated setting possible.
"You could argue that the [vaccine rollout] plan is discriminatory, because it is," said Barnett Rosenfield, supervising attorney at the Minnesota Disability Law Center. "If you live in a more institutional setting, you get the vaccine. But if you don't, then you don't. It's unequitable and I just don't think the system has thought through the implications."
Some Minnesota parents with adult children with Down syndrome said they have even offered to trade their spot in the vaccine line so their high-risk children can get the shots. But these parents said their requests have been turned down by providers who say they can't administer the vaccine to people who are not on the priority list.
"The disability community has been completely disregarded and left out of the vaccine discussion, and that is tragic," said Sen. Jim Abeler, R-Anoka, chairman of the Human Services Reform Finance and Policy committee.
With some federal guidance, states have pushed forward with their own carefully laid plans for getting the vaccines to priority groups. Like Minnesota, most states have prioritized front-line health workers, residents of nursing homes and other long-term care facilities and seniors over 65.
At least 10 states explicitly include people with intellectual and other disabilities in their vaccine plans, according to a December report from a national disability service group. An estimated 130,000 Minnesotans have an intellectual or other disabilities such as autism, Down syndrome or cerebral palsy.
Sarah Curfman, executive director of the Down Syndrome Association of Minnesota, said Minnesota's plan appears to penalize families who care for their own relatives in the communities. About 80% of the 2,200 adult Minnesotans with Down syndrome live on their own or with their own families, while those living in state-licensed group homes have been prioritized, she said.
Curfman said families with loved ones with Down syndrome are worried they will fall behind millions of healthier Minnesotans if they are not specifically included in the next phase of the vaccine rollout, known as "Phase 1b."
Nearly 120,000 people in Minnesota have received both doses of the Pfizer and Moderna vaccines — mostly health care workers and long-term care residents who were prioritized, according to state vaccine website.
A number of states, including Ohio, Texas and Vermont, have already prioritized people with Down syndrome for the vaccines and specifically include them in their plans.
"Looking at who is most at risk of dying is a really good way to figure out the [vaccine] allocation — but that's not what is happening," she said. "The longer we wait, the greater the risk that we will see one or many people [with Down syndrome] dying from this virus."
Without access to the shots, many people with Down syndrome and their relatives are wondering when their lives can return to normal. The risks of dying from the virus are so high in this population that many with the chromosomal condition have stopped going to work or attending their day activity centers in the community. The virus has also upended the lives of the tight circles of family members and others who care for them. Eleven months into the pandemic, many still spend most of their days quarantined at home.
Since late January, more than 5,000 people have signed an online petition asking Walz to prioritize people with Down syndrome and other disabilities.
Tana Curran of Maple Grove said her 41-year-old son, Casey, almost never ventures outside the house except to go on short walks around the neighborhood or on early-morning trips to the store when crowds are light.
The isolation has taken a psychological toll on Casey, who has not been able to attend his day-activity program with friends or see most of his close relatives for months. And because of his cognitive disability, he sometimes gets confused about why his daily routines have been disrupted, she said.
"Casey doesn't see anyone and he doesn't fully understand why," Curran said.
Before Christmas, Casey became so excited that he scribbled the names of his relatives on pieces of paper, and carefully placed them in spots around the living room and kitchen where they would normally sit for holiday dinner, she said. Then he became saddened when he learned that family would not be visiting because of the pandemic.
"Casey has become the heart of the family," Curran said, "but I just won't risk his health. He's too medically vulnerable."
But staying home is sometimes not enough to keep the microscopic virus at bay.
Phelps said her daughter Hannah stopped working at the job she loved at a pet store after the pandemic hit last spring. No one ventured out of their home except to go on short drives to pick up groceries. Even so, Hannah's younger sister Shayna, who also works as her caregiver, caught the virus in April. To keep the rest of the family safe, Shayna stayed in her bedroom for two weeks. Phelps left trays of food outside her bedroom door.
"We've been very lucky," Phelps said. "But without the vaccine, I'm worried our luck is going to run out."
Chris Serres • 612-673-4308