Lauren Thompson felt a sense of foreboding when she learned last week that Minnesota was rolling back restrictions meant to slow the spread of the novel coronavirus.
For Thompson, 32, who was born with cerebral palsy and is more susceptible to infection, the social-distancing rules that had been in force since early March offered some assurance that her caregivers would not bring the virus into her home.
“In many ways, I feel less safe” since Gov. Tim Walz loosened his stay-home orders, said Thompson, who has been mostly isolated at her parents’ house in Brooklyn Park since the pandemic began. “My life is the same, but the people who are helping me are out and about and socializing, which means my risk of infection goes up.”
The decision by Walz to begin a gradual reopening of the economy — and to let Minnesotans leave the house more — has brought little comfort to many of the state’s most vulnerable residents, including older adults and individuals with disabilities. For these groups, life goes on much the same as before, except now their social safety net has been torn. The extreme isolation that accompanied the pandemic is likely to persist for vulnerable adults, in part because the relaxed rules do not apply to them.
The executive order issued last week gave the green light for many businesses to reopen. At the same time, the order strongly urged “at-risk persons,” including people over age 65 and those with underlying health conditions, to remain at home. “It’s clear from this [executive] order that people with disabilities will have to wait longer to enjoy the same freedoms as everyone else,” said Roberta Opheim, state ombudsman for mental health and developmental disabilities.
Going into the 2020 legislative session, there was rare consensus among disability rights groups and lawmakers around the need to promote more independence and inclusion for Minnesotans with disabilities. There were ambitious proposals to modernize the state’s costly and antiquated system for disbursing billions of dollars of Medicaid benefits, to give people more control over their own services and living arrangements, and to phase out the long-standing practice of paying less than the minimum wage to workers with disabilities.
In the end, the session ended with the passage of one significant measure, reforming Minnesota’s guardianship law. More than 22,000 adults across the state live under the supervision of court-appointed guardians, who often gain broad authority over the people they are assigned to protect. The bill requires that disabled adults be offered a less-intrusive alternative to guardianship, which would empower them to make their own life decisions.
But with every state agency and lawmakers consumed by coronavirus concerns, the topic of disability rights was mostly relegated to the sidelines. “Changing an entire system and breaking down barriers to inclusion is a very big deal, and we are going to keep pushing for this agenda” if the Legislature is called back into special session, said Jim Abeler, R-Anoka, who oversees a key human services committee.
The status quo has been challenging for this population.
In March, disability service providers across the state began shuttering day and employment centers in response to the pandemic, leaving thousands of people with physical and developmental disabilities in the lurch. Even with emergency measures, these day centers remain closed. As a result, nearly 30,000 Minnesota adults with disabilities have been cut off from a place to go during the day for social interaction, vocational training and other services.
On Wednesday, Human Services Commissioner Jodi Harpstead said that, after a careful review, the day activity centers would be kept closed for now to prevent the spread of COVID-19 among their vulnerable clients. In day activity centers, Harpstead noted, people are interacting with one another in closed environments for long periods, significantly increasing their risk of contracting the virus. In addition, many of the people who attend day activity centers also live in four-bedroom group homes; there is a risk that they could bring the coronavirus back to these settings, exposing more people, she said.
At the same time, she said, the DHS has been in talks with the state association of day activity providers regarding ways services can be provided without risking the spread of infection. Some ideas being considered include allowing services to be offered remotely, having centers operate with reduced hours, and allowing services to be provided in private homes rather than in centers, she said. The agency is also exploring the possibility of allowing day activity staff to provide services within group homes, much like personal care assistants.
“We agonized about this,” Harpstead said of the decision to keep the group homes closed. “From the beginning, our very first decisions have all been about safety, health and protecting people from catching COVID.”
She added, “At the same time, all of us are not getting our full dose of emotional, spiritual and social supports right now, and sacrificing some things for not catching the virus.”
Some disability service providers have been starved of funding for so long that they are permanently closing their doors. Last week, for instance, the Salvation Army announced it was closing a day activity center in Maplewood because of a sustained lack of funding. The decision has left between 30 to 35 seniors with chronic physical and cognitive disabilities without a destination during the day for social interaction, exercise, Bible lessons and other activities.
“With the loss of revenue and the added cost of new program requirements, we just couldn’t find a way to make this program financially feasible in the COVID-19 era,” said Lt. Col. Lonneal Richardson, commander of the Salvation Army’s Northern Division.
Such closures can upend the lives of family members, who often rely on such centers as a respite from providing round-the-clock care.
Linda Christensen, of St. Paul, said she enrolled her 84-year-old husband in the Salvation Army’s center last summer after he was diagnosed with Alzheimer’s disease. The center provided a level of “mental and spiritual stimulation” that Christensen said she could not provide at home. Now that it’s closed, Christensen has to keep eyes on him constantly to ensure he doesn’t wander. Fatigue is setting in.
“I feel the gate has closed for us and it’s remained closed,” Christensen said. “The relaxing of [stay-at-home] rules doesn’t change life for us.” She added, “If anything, it may make matters worse. If I get the coronavirus because people let their guard down, then who is going to take care of my husband?”
Isolation remains another major concern. Even before the coronavirus arrived in Minnesota, adult foster-care facilities and home care agencies were struggling with a shortage of support staff. Those shortages have worsened, in part because workers have feared being infected in these homes. As a result, many people in group homes have no one to take them out into the community, advocates say.
Since March, the Minnesota Disability Law Center has received a sharp increase in reports from group home residents complaining of extreme isolation, said Dan Stewart, the center’s legal director. In some cases, healthy residents in these homes have been ordered to stay in their rooms, in violation of their civil rights, he said. In one case, a group home resident was prevented from going to work, even though the person had an essential job, Stewart said. And accommodations are often not being made for families to visit.
“Doors are being shut that don’t need to be shut,” Stewart said. “Broadly speaking, we are facing the same age-old questions of how to balance the rights of the many with the rights of the few.”
For now, Thompson just wants to return home. After the pandemic hit, a sudden shortage of caregivers made it impossible for her to stay in her supported apartment in Champlin, so she moved in with her parents. Thompson sleeps in the same room she did as a child, surrounded by the stuffed animals and coloring books that she enjoyed as a 3-year-old.
“I never thought I’d be back here,” Thompson said of her childhood room. “It’s both comforting and awkward at the same time.”