WEBSTER GROVES, Mon. – Maria Schroeder was worried and increasingly worried. It was weeks after coronavirus vaccine distribution began in Missouri, and it still had 11 residents with intellectual disabilities who needed 24-hour support – and no vaccine.
She expected someone to tell her how to get it. Finally, the state sent her a list in mid-January.
However, Schroeder, associate director of L’Arche St. Louis, which operates three group homes in St. Louis County, quickly discovered that the list was overflowing with all of the CVS, Walgreens, and Costco stationary locations – locations that do Vaccination allowed often had no vaccine doses.
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In the next two working days, Schröder made 200 calls.
“We are a very small agency, we don’t have many connections,” said Schröder. “It was very obvious that if I didn’t, we wouldn’t be getting vaccines.”
The leaders of group homes in the St. Louis area serving adults with intellectual disabilities have made efforts to secure a dose of COVID-19 vaccine for their employees and customers. With little help from the state, some said, the group leaders began a dogged and sometimes desperate hunt. They made hundreds of phone calls, sent workers across the state, and signed contracts with coworkers, health services and anyone else they could reach.
Most have now received at least a few cans. However, their stories illustrate the severe lack of communication, sales, and the vaccine itself, especially in the early days of the rollout.
Also for the high risk.
The Missouri Mental Health Department did not provide staff for an interview for this story. Agency spokeswoman Debra Walker said in an email that the department understands the challenges group homes face in finding vaccines.
“DMH has encouraged providers to take the lead and not wait for a vaccine to contact them,” she said.
Easterseals Midwest is still waiting.
The nonprofit serves approximately 5,000 customers with disabilities in Missouri, of whom approximately 300 live in group homes in the St. Louis area. Three of its customers with disabilities and two of its employees have died from the virus in the course of the pandemic.
The organization devoted three full-time employees solely to trying to track down vaccines, said CEO Wendy Sullivan. She said that Easterseals operations near St. Louis earlier this month received a round of roughly 250 shots, with roughly 50 vaccines going to customers and the rest to employees. Now almost every employee who wanted a vaccine has received one, she said. But “the vast majority” of customers with disabilities still miss their shots.
The organization has encountered confusion and conflicting policies in different parts of the state, Sullivan said. In Springfield, for example, they were able to get vaccinated, but other places have questioned their suitability for cans.
“Everyone is confused about who is eligible and when,” she said.
Sullivan said vaccine distribution tended to be worse in St. Louis.
“It varies a lot by region,” she said. “St. Louis was a lot slower.”
Professional leaders of group homes – also known as “community living” or “supported living” – say that their residents are very susceptible to diseases such as COVID-19. In most cases, employees come and go frequently and present possible routes of transmission. And an infection in the household can quickly spread to others.
In addition, many customers already have underlying health conditions. And sometimes they don’t understand how to protect themselves.
“You are at high risk,” said Sullivan.
Hence, those in charge were surprised to see no government system linking certain vaccine providers with potential recipients who were high on the eligibility list.
Instead, an official from the mental health department said on a conference call recently that group leaders should be “scratchy” at home.
It frustrated some on the call. They saw this as just another example of the state ignoring the needs of group homes.
“It’s not the first time we’ve felt like we need to get ‘scratchy’ to achieve this,” said Barb Griffith, CEO of Community Living in St. Peters. “I wanted to systematically initiate (the state) to help the organizations they funded. But that’s not how it turned out. “
Schröder from L’Arche called it “annoying”.
“It just felt like a waiver of responsibility and a misunderstanding about how serious the situation is,” said Schröder. “We have been in a life and death situation since March.”
Her boss, L’Arche executive director Paula Kilcoyne, said the call sent the wrong message.
“There’s just the message of ‘everyone for himself’, you know?” She said, “Good luck.”
Some group homes have reported better luck.
About half of Community Living employees and nearly all 50 residents have chosen to have a vaccination. Griffith said St. Charles County provided some cans. She tracked down “leftover” vaccines on the Compass Health Network, a non-profit healthcare system in the region. And their organization worked with another home in a vaccination clinic.
Approximately 90% of customers at Emmaus Homes, which operates 65 residences in Warren, Franklin, St. Charles and St. Louis counties, have received cans. It had access to the first round of the vaccine in late December and ran the clinic attended by many Community Living vaccine recipients.
“It’s about being in the right place at the right time,” said Emmaus boss Cindy Clark, who also serves as the head of a national trade association that focuses on helping people with disabilities.
But Clark said earlier this month that Emmaus’ success was an exception. “When I look at the 100 vendors in our trade association, I know it wasn’t that easy to get in,” said Clark. “We are certainly in the minority.”
She said earlier this month that it has improved since then.
“It was a mess”
Many leaders have expressed concern that other people with disabilities who are not in group homes or cannot afford their services are likely to face even steeper barriers to getting a vaccine.
“There are thousands of people who live with their families,” Kilcoyne said. “I have no confidence that these families will be served, that they would even have the basics to call dozen of places.”
However, Schröder was ultimately successful for the employees and residents of L’Arche.
Call after call met a labyrinth of dead ends. Then, through a few stroke of luck, the organization grabbed the vaccine from three different sources, near and far.
Some of the vaccinations were administered on-site by United Scripts, a local long-term care pharmacy, who told Schroeder there was an excess and contacted police stations to find buyers when she called. Another round of vaccines was tracked down in a health system in Colombia, so L’Arche had to send staff two hours west for the shooting. That venue also expressed confusion about what to do with its existing cans, Schroeder said.
“They had no instruction about who needed the vaccines,” she said.
In L’Arche and elsewhere, this has been cited as a consistent problem.
“It was a mess,” said Schröder about the introduction of the vaccine.
“We were basically told to take care of ourselves.”
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