Nothing captured the despair of the coronavirus outbreak in New Jersey like the Easter Sunday discovery of a makeshift morgue crammed with 17 bodies at one of the state’s largest nursing homes.
The virus rampaged through Andover Subacute and Rehabilitation Center last spring, killing 82 residents and two employees, one of the highest nursing home death tolls in the state.
Yet, the state Health Department’s “data dashboard,” the webpage that chronicles the pandemic’s ongoing toll in the Garden State, on Thursday listed no deaths at the Sussex County facility and just three COVID-19 cases.
In mid-July, state health officials made a decision to take down the total number of deaths at each nursing home, and instead started reporting only deaths and cases as they occurred during an active outbreak.
The only nursing homes, assisted living facilities and other long-term care facilities now listed on the dashboard are the 155 that were experiencing an outbreak as of Friday. It excludes information from more than 500 other licensed facilities in New Jersey that experienced COVID-related deaths, including the state-run veterans homes where combined almost 200 residents died.
New Jersey has the highest per capita death rate inside its long-term care facilities, according to the most recent data from U.S. Centers for Medicare and Medicaid Services. The virus has killed 6,788 and 121 employees, according to state data.
Health Commissioner Judith Persichilli briefly announced the change at a July 10 coronavirus press conference, explaining that posting data on active outbreaks would provide a “clearer, real-time picture” of what is going on.
Knowing which facilities at one time had the highest number of cases and deaths may not give an accurate picture of the facility’s current safety, said Dawn Thomas, a state health department spokeswoman. Testing supplies were in short supply in the early months of the pandemic, she noted.
Testing was not widely available in nursing homes until May.
“Some parts of the state were more heavily impacted than others with community spread,” Thomas said. “Overall numbers are not the only thing to consider, but also the percentage of residents/staff who test positive.”
But some people who have been monitoring the pandemic’s impact on long-term care facilities question the state’s decision to parse the data. They say a fuller picture should be readily available to everyone — whether they are families shopping around for a long-term care facility for a loved one or want to be informed of the virus’ impact throughout the pandemic.
It’s “downright offensive” for the state to withhold the information, said Attorney Paul da Costa of Roseland, who represents the families of four residents who died at Andover.
“It’s ambiguous and inaccurate to be polite, and borderline deceptive to do what they are doing now,” said da Costa. “The public deserves to know the complete tally, whether the deaths occurred in the past four weeks or the past 4 months.”
“It’s disheartening to hear that these people’s lives, and the way they died, are being written off in the guise of the state allegedly trying to give the public more accurate information,” the lawyer said.
The culling of information was also sharply criticized by Milly Silva, executive vice president of 1199SEIU United Healthcare Workers East, which represents 8,000 nursing home workers in New Jersey, who called on the state to maintain a public database of both real-time statistics and information on past outbreaks.
“New Jerseyans must have full access to COVID data, both current and historical,” she said. “Residents, family members, and consumers looking for a place to send a loved one need to know the full picture of a facility’s track record.”
Silva added, “A person shouldn’t have to become a sleuth and pore over old news reports in an effort to find out the full picture of what has happened.”
The information is theoretically available to the public by making a public records request, but not many people are aware of the process. And anyone who makes a request, will most likely have to wait.
NJ Advance Media submitted an open public records request for cumulative COVID-19 cases and deaths with the state Health Department on Aug. 19. The records custodian, not required to respond within seven business days because Gov. Phil Murphy suspended this requirement as part of the ongoing public health emergency, fulfilled the request on Sept. 24.
NJ Advance Media requested the records custodian immediately update the information to the present day but the custodian did not respond.
The New Jersey Veterans Memorial Home in Menlo Park, with 101 fatalities, now has more deaths than any other long-term facility in the state, after Health Department updated the numbers late last week. There were 62 confirmed and suspected deaths and another 39 probable deaths, but the facility does not even appear on the state’s dashboard as of Friday.
The New Jersey Veterans Memorial Home in Paramus also does not appear on the data dashboard, as of Friday. That’s where 81 residents and one employee died, according to lab-confirmed and suspected case data. The health department revealed this week there were eight additional deaths of Paramus residents listed as “probable” COVID-19 cases because they weren’t tested but exhibited symptoms, bringing the total to 89.
Veterans homes are run by the state.
The health department continues to collect all of the data and compare notes with local health departments and the facilities, Thomas said, adding the information is critical to deciding when long-term care facilities may be allowed to reopen to the public.
Laurie Brewer, the state Long-Term Care Ombudsman, said she does not disagree with the state’s decision to limit the COVID-19 list to active outbreaks.
“The current list is a useful tool to determine which facilities are in outbreak status and thus are further behind the others in terms of reopening and resuming family visitation and getting residents out of their rooms,” she said.
Residents and their families are more concerned now about the nursing homes’ refusal or inability to comply with state guidelines that should allow designated caregivers inside to see their loved ones, she said.
Michael Merritt of Mendham, a retired AT&T scientist, who keeps a close watch on the dashboard because he has a relative living in a facility, said all of the information is important. And as a person who has worked with data throughout his career, he relies on the state Health Department’s information — a database funded by taxpayer dollars — to make decisions about how to keep safe and healthy.
Long-term care facilities “certainly have a motivation to minimize the negative information,” he said.
“And at a narrower level, individuals and families considering residence in a facility deserve the full history — how well did the facility cope in March, what is being done differently now, and how can we be sure the necessary resources and oversight will continue,” Merritt said.
“The current low level of infection in long-term care facilities is a wonderful thing. But it shows that the terrible events of March and April were completely avoidable,” Merritt said. ” We have to remain vigilant to avoid repetition, especially if the expected fall and winter resurgence in the broader community is to be kept from decimating this vulnerable population again.”
Merritt said he has contacted the department when he suspects facilities have either mistakenly reported information or state officials are not analyzing it correct. “When I tried to follow up, they stopped responding to me, he said.
“If I found one set of errors and can’t get them fixed, how can I or anyone have confidence in the rest of the data?” he asked.
For da Costa, the attorney representing families against Andover and the Menlo Park veterans’ homes, he has long questioned the accuracy of the state’s official count of nursing home deaths — which are based on self-reporting by the nursing homes.
He said the changes on the dashboard raise concerns whether Andover and its lawyers will use the state’s new reporting protocol to “obfuscate the truth and use it to their advantage.”
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Andrew Aronson of the newly formed Nursing Home Advocates of New Jersey, a coalition of some of the state’s largest nursing home operators, said he’s not aware of his members requesting the state limit the information available through the website.
“The industry does not control what information the DOH posts on its website,” he said.
The dashboard would seem to indicate that although COVID-19 is still present in one out of every six facilities, the prevalence is down, said Aronson, a former long-term care facility regulator for the state.
“We attribute it to the fact that nursing homes have done an excellent job of protecting and caring for their residents,” he said. “Nursing homes also benefit from vigilant efforts to stop outbreaks in our surrounding communities. The generally low infection rates in New Jersey’s communities correlates to low infections rates in nursing homes.”
The declining population inside long-term care facilities is likely playing a role in the decline of infections. One in 10 residents has died from COVID-19.
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