WEBSTER GROVES — Maria Schroeder was worried and increasingly anxious. It was weeks after coronavirus vaccine distribution had started in Missouri, and she still had 11 intellectually disabled residents who required 24-hour support — and no vaccine.
She expected someone to tell her how to get it. Finally, in mid-January, the state sent her a list.
But Schroeder, assistant director for L’Arche St. Louis, which runs three group homes in St. Louis County, quickly realized the list was cluttered with every brick-and-mortar CVS, Walgreens and Costco — locations that, while approved to vaccinate, often had no doses of vaccine.
Over the next two work days, Schroeder made 200 calls.
“We’re a very small agency, we don’t have a lot of connections,” said Schroeder. “It was very obvious if I didn’t do this, we weren’t going to get vaccines.”
The leaders of St. Louis-area group homes that serve intellectually disabled adults have struggled to secure doses of COVID-19 vaccine for their staff and clients. With little help from the state, some said, the group-home leaders began a dogged and sometimes desperate hunt. They made hundreds of phone calls, sent staff driving across the state, and cut deals with colleagues, health care services, and anybody else they could reach.
Most have now gotten at least some doses. But their stories illustrate the intense shortage of communication, distribution and vaccine itself, especially in the rollout’s early days.
Even for the high-risk.
The Missouri Department of Mental Health did not make staff available for an interview for this story. Agency spokeswoman Debra Walker said in an email that the department understands the challenges group homes face in trying to find vaccine.
“DMH has encouraged providers to take the lead and not wait for a vaccinator to contact them,” she said.
Easterseals Midwest is still waiting.
The nonprofit serves approximately 5,000 disabled clients in Missouri, about 300 of whom reside in group homes in the St. Louis region. Three of its disabled clients and two of its staff members have died from the virus over the course of the pandemic.
The organization devoted three full-time employees solely to trying to track down vaccine, said CEO Wendy Sullivan. She said Easterseals’ operations near St. Louis received a round of about 250 shots on Thursday, with roughly 50 vaccines going to clients and the rest going to staff members. Now, just about every staff member who had wanted a vaccine has received one, she said. But “the overwhelming majority” of disabled clients are still missing their shots.
The organization has encountered confusion, and conflicting policies, in different parts of the state, Sullivan said. In Springfield, for instance, they’ve been able to get vaccinations, but other places have questioned their eligibility for doses.
“Everyone is confused about who’s eligible when,” she said.
Sullivan said vaccine distribution has tended to be worse around St. Louis.
“It varies greatly by region,” she said. “St. Louis has been much slower.”
Professional leaders of area group homes — also called “community living” or “supported living” settings — say that their residents are highly vulnerable to diseases like COVID-19. In most circumstances, staff members frequently come and go, presenting potential routes for transmission. And one infection in the home can quickly transmit to others.
Moreover, many clients already have underlying health conditions. And they sometimes lack an understanding of how to keep themselves safe.
“They are high-risk,” Sullivan said.
So leaders were surprised when they didn’t see a state system linking specific vaccine vendors to prospective recipients high on the list of eligibility.
Instead, on a recent conference call, a Department of Mental Health official told group home leaders to be “scrappy.”
It frustrated some on the call. They saw it as just another example of the state ignoring group homes’ needs.
“It’s not the first time that we’ve felt like we’ve got to get ‘scrappy’ to get this done,” said Barb Griffith, CEO of St. Peters-based Community Living. “I was looking to (the state) to usher this in in a systematic way, to help those organizations that they provide funding to. But it didn’t happen that way.”
Schroeder, from L’Arche, called it “infuriating.”
“It just felt like an abdication of responsibility and a misunderstanding of how grave the situation is,” said Schroeder. “We’ve been in a life-and-death situation since March.”
Her boss, L’Arche Executive Director Paula Kilcoyne, said the call sent the wrong message.
“It just gives the message of ‘Every person for themselves,’ you know?” she said “‘Good luck.’”
Some group homes have reported better luck.
About half the staff and nearly all of the 50 residents at Community Living chose to be vaccinated. Griffith said St. Charles County provided some doses. She tracked down “leftover” vaccine at Compass Health Network, a nonprofit health care system in the area. And her organization partnered with another home on a vaccination clinic.
Roughly 90% of the clients at Emmaus Homes, which runs 65 residences across Warren, Franklin, St. Charles and St. Louis counties, have received doses. It had “first-round access” to the vaccine in late December, and ran the clinic attended by many of Community Living’s vaccination recipients.
“That’s about being in the right place at the right time,” said Emmaus chief Cindy Clark, who also serves as a leader of a statewide trade association focused on assisting people with disabilities.
But Clark said early this month that Emmaus’ success had been an exception. “As I look across the 100 providers in our trade association, I know that getting access has not been that easy,” Clark said. “We are certainly in the minority.”
She said on Friday that it has since improved.
‘It’s been a mess’
Many leaders echoed a fear that other disabled people, who aren’t in group homes or can’t afford their services, are likely to face even steeper obstacles to get a vaccine.
“There are thousands of individuals who live with their families,” Kilcoyne said. “I don’t have confidence that those families are getting served, that they would even have the wherewithal to call dozens of places.”
Schroeder, however, was ultimately successful for the staff and residents at L’Arche.
Call after call hit a maze of dead ends. Then, through a few strokes of good luck, the organization snagged vaccine from three different sources, near and far.
One chunk of vaccinations were administered on site by United Scripts, a local long-term care pharmacy, which told Schroeder it had a surplus and had resorted to contacting police stations to find takers when she called. Another round of vaccines was tracked down at a health care system in Columbia, requiring that L’Arche send staff two hours west for the shots. That venue also expressed confusion about what to do with its doses on hand, Schroeder said.
“They had no direction as to who needed the vaccines,” she said.
At L’Arche and elsewhere, that has been cited as a consistent problem.
“It’s been a mess,” said Schroeder, of the vaccine rollout.
“We were basically told to fend for ourselves.”