Last week, the state agency that regulates assisted living facilities quietly posted a memo announcing it was going to delete from its website the names of facilities where people had died from COVID-19.
The California Department of Social Services provided no explanation.
When patient care advocates found the memo Monday, they were baffled and alarmed. After all, they’d fought to have the death counts made public early in the pandemic when it became obvious the facilities — along with nursing homes — were becoming Ground Zero for the state’s COVID-19 crisis.
The agency said it had made a mistake after The Sacramento Bee inquired about why the numbers were taken down.
“We are continually working to improve upon our data and this information will be included again in our daily reports very soon,” spokesman Scott Murray said Monday evening. The numbers were back up on the state’s COVID-19 dashboard Tuesday afternoon.
But critics and reformers say the move was part of an alarming trend of long-term care industry officials having a disproportionate amount of influence on California’s regulators. Critics argue the largely for-profit industry would like to scrub the numbers because they’re bad for the industry’s bottom line.
“Hard to justify how data shielding bad providers was suddenly taken down and is going to magically reappear,” said Jody Spiegel, an attorney with California Advocates for Nursing Home Reform.
Sally Michael, President and CEO of California Assisted Living Association, in a written statement said facilities reported everything they were asked to. She deferred to the state for an explanation about what information was made public but said she supported the move away from historical death and case counts.
“I believe that reporting active cases is more helpful for a better understanding of the current situation,” she said.
‘Temporary’ removal of data from the portal
Since late April, the California Department of Social Services published daily updates about the spread of the coronavirus inside the 7,000-plus facilities it licenses. The daily report included case and fatality counts at the state and county levels as well as at specific facilities.
Last week’s change was a significant departure from what has been published since April. Officials gave no further explanation for deleting the death data but left in place details about facilities with current COVID-19 cases and how those counts changed from day to day.
Murray, the department spokesman, said the change was temporary and that facility-level death data would return in a forthcoming “expanded” update that will also include active and cumulative case details.
At least 529 assisted living residents have died of COVID-19 complications, including at least 26 from Sacramento County facilities. Nearly 5,000 people testing positive from the facilities that cater to the elderly but do not provide the same level of medical care as nursing homes.
Nursing homes, where more than 2,900 residents have died, are overseen by the California Department of Public Health. Officials update the nursing home data dashboard daily.
Combined, long-term care facilities licensed by the two departments account for nearly half of California’s 7,700 COVID-19 deaths.
Since the early days of the pandemic, advocates, experts and loved ones with family inside locked-down families demanded the state provide the names of facilities with deadly outbreaks.
The state complied in early May when it released facility-level death information.
Data scrub ‘inexplicable and very harmful’
Spiegel, the California Advocates for Nursing Home Reform attorney, said state health officials made no mention of the reversal for assisted living data on a conference call Monday, and she was surprised to learn about it afterward.
She called the change “astonishing and very disappointing.’
Having the data publicly reported is especially important because “way fewer eyeballs” are allowed inside the facilities as regulators have cut back on inspections, she said. The state’s long-term care ombudsman program and family members have limited, if any, access to the facilities.
“How many people have died, how many cases total, historically, are obviously important,” she said.
Gay Grunfeld, a San Francisco attorney whose firm is currently suing the Brookdale chain of senior living facilities, said it was “inexplicable and very harmful” for the state to scrub the data.
She said her mother is in long-term care in Texas, and it’s critical for families like hers to know as much as possible to make informed decisions about whether to keep a loved one there or when looking for a new facility.
She said it was especially galling that the California Department of Corrections and Rehabilitation provides a running tally of COVID-19 cases inside prisons but the state won’t do the same for places with its most vulnerable citizens.
“More information, more sunlight, is what we need if we’re all going to fight this disease together,” she said.
Mia Ousley, who handles legal and personal affairs for clients who live in assisted-living facilities, said she is frustrated more people aren’t paying attention to what’s been happening in the state’s array of assisted living facilities, which span sprawling apartment-style campuses to small six-person group homes.
Employees, she said, don’t adequately communicate with family members and advocates, and the public generally hasn’t pressured officials to release information because they mistakenly believe outbreaks are limited to nursing homes.
“It’s trying to be swept under the rug and hidden away,” she said. “People are trying to cover their asses.”
As the weeks have gone on, she said she’s been increasingly concerned by a perceived move away from more detailed data at the local and state levels. People will not take seriously the risks posed by COVID-19 unless they have access to detailed information about facilities, she said.
“They’ve gotten more and more general and less and less specific,” Ousley said.