Two dead at a nursing home in Norwood. Five more at a home in Revere. Six at a veterans facility in Holyoke. The death toll from coronavirus outbreaks in Massachusetts nursing homes and assisted living centers is mounting.
But precisely how many outbreaks are underway at places that house the state’s most vulnerable residents — or where — is unknown, because the state so far has declined to release that information, leaving families and the public in the dark, even as the facilities block access to visitors.
Even though state public health officials know in most cases which senior housing facilities in the state have residents or staff who have tested positive, they so far have not made that information available as part of their routine daily disclosures about cases and deaths in the state.
“I’m kind of in the midst of grief and very dazed, and what I’m learning going through all of this is that there is absolutely no one in charge right now,” said Seth Fischer, 40, whose father passed away this week in a facility in Jamaica Plain.
Asked about the lack of reporting, state officials said they are now working to make the information public.
“Just like it took us a little bit of time to start putting out age categories, this is sort of like the next iteration of what we need to do to put out more transparent data to the public," said Marylou Sudders, the state Secretary of Health and Human Services.
The electronic database that the state uses to collect reports of positive cases only reports a person’s name and address. State officials then must work backwards with the local boards of health to determine whether the address represents a house, apartment, jail, nursing home, or other type of facility.
Sudders said she has directed the Department of Public Health to figure out what they need to do to put that data forward.
But the lack of directives and disclosure from state officials thus far has left each senior housing facility to handle the situation differently. Some have reported positive cases and deaths publicly on their websites, while others have only told the families of residents who tested positive. And some have not released any information at all.
In one extreme case in Holyoke, state and local officials only learned over the weekend that a coronavirus outbreak at the Soldiers’ Home had taken a deadly turn, with 13 veterans dying since the beginning of March, at least six due to the virus.
And though two residents of Charlwell House in Norwood passed away last week, the facility did not make that information available to the public. Charlwell sent a letter to families of residents notifying them that someone in the facility had tested positive, but ignored questions from the Globe and hung up on a state legislator who attempted to contact management once the outbreak was revealed publicly.
State Representative John Rogers, who represents Norwood, said it has been very difficult to get information from the facility about the situation inside. There should be regulations that obligate senior housing facilities to share information with the public during health crises, he said.
“During times like this there is a more acute need for transparency,” Rogers said. “The public has a right to know what’s going on behind the doors of the facilities that have been granted a public license.”
Chris Roberts, vice president of operations for Charlwell House, said nursing homes are struggling during this unprecedented crisis with how to responsibly notify the public about cases.
“No one has told us the correct way to do it,” he said. “There has been guidance on everything else. Past that, they did leave us to our own devices, that’s why we scrambled and got the letter out.”
The lack of information has made it excruciating for people like Fischer, whose father died before receiving a COVID-19 test but exhibited many of the symptoms. Fischer is now pushing to have his father’s body tested but has received conflicting information from the city and state.
“At the federal, at the state, at the local level, nobody wants to take responsibility and everybody sends me to another department. The city sends me to the coroner, which sends me back to the city. The state tells me one thing, the city tells me another,” he said.
In an e-mail this week, a spokesperson from the state Department of Public Health said officials are “working closely with nursing facilities with confirmed COVID-19 cases among patients and staff."
In addition, the state is implementing a pilot project with the Massachusetts National Guard to allow on-site testing of symptomatic residents at senior living facilities that is designed to expedite the process, the spokesperson said.
As the crisis unfolds in Massachusetts, state officials each day announce the number of new cases and deaths. That information includes the gender, age range and county of residency for each death. But so far it has not included whether those deaths have occurred at senior housing facilities, which care for some of the most vulnerable people in a close setting that makes it even easier for the virus to spread.
State health officials have also discouraged cities and towns from reporting the number of cases in their communities, but ultimately said the decision is up to local leaders. So far, municipalities have not been naming facilities that have had outbreaks.
Instead it has been left up to individual senior housing facilities, some of which are run by large, out-of-state companies, to decide when and how to notify residents and relatives of any outbreaks.
Some facilities, like Williamstown Commons in the Berkshires, have proactively kept residents and their families informed on what has happened.
Sergio Demo, whose mother Filomena, 103, lives in that nursing home, said the staff has kept him well informed. So far there are 21 positive cases among residents at that facility, and a death over the weekend. The facility has separated residents who have tested positive from the rest of the population to try to reduce spread within the home.
“It’s scary stuff, new stuff, making it up as they go along, working under the worst circumstances, nobody has the tools or the supplies, it’s pretty incredible,” said Demo, 63.
Williamstown Commons, like all nursing homes, banned visitors about two weeks ago, following guidance from the state and federal government intended to help stop the virus from spreading.
Other homes have not disclosed the number of cases. A staff member at Parkway Health and Rehabilitation Center in West Roxbury this week said there were no cases at the facility but declined to say whether any residents had been transferred to the hospital.
"We are keeping close contact and reaching out regularly to families to advise them of any changes in the building,” said Jamilynn Novo, corporate director of infection control at Bear Mountain Healthcare, which oversees Parkway and 16 other facilities in the state.
Roberts, whose company owns Charlwell House, said the home tested residents on March 21 then director Ken Kelley sent a letter to families of residents on March 24, the same day they received positive test results.
Roberts said they reported the cases and deaths to the local health department but worried about making the information more widely available.
“Unfortunately there is no playbook on this. We’re kind of, as an industry, writing it as it goes along," he said.