Both nursing homes and assisted-living facilities were among the first institutions to isolate amid the coronavirus outbreak.

Yet, despite efforts to prevent the spread of infection, more than 40% of the 2,215 COVID-19 deaths reported in California have occurred in long-term care facilities, according to the latest figures from the state.

The actual number of infections and deaths are likely higher due to a lack of testing and holes in the state’s reporting system, elder care advocates say.

“For weeks now, visitations have been shut down for many of these facilities. It’s been an emotional time for families that have found themselves unable to communicate with one of their family members,” State Senator Steve Glazer (D-Orinda) said during a recent virtual town hall on nursing home safety during the COVID-19 pandemic.

The April 28 conversation was Glazer’s 15th town hall since a state of emergency in California was declared two months ago. It included patient advocates, nursing home executives, and a Los Angeles Times reporter who has written extensively on the subject. An audio recording is available online at sd07.senate.ca.gov/covid19/telephone-town-hall.

Protecting residents and staff from the coronavirus is proving an unprecedented challenge for long-term care facilities. Residents and patients are uniquely vulnerable to coronavirus due to age, underlying health conditions, and living in congregate settings.

Facility operators say their caregivers are doing their best to slow the spread of the virus and working under impossible circumstances, without enough protective equipment or testing for both residents and health care workers in long-term care settings.

Safe social distancing is just not possible where a health care worker is feeding by hand a resident of a facility, or where there are mobile patients with cognitive impairments like Alzheimer’s.

They are turning to policy makers for help with equipment, testing and personnel shortages resulting from staff exposure to COVID-19.

They are also seeking from the governor an executive order granting immunity from civil liability, in anticipation of a flood of COVID-19-related litigation.

Fast-Moving Crisis Upends Long-Term Care

Anita Chabria, a reporter who covers state politics and policy for the Los Angeles Times, recalled standing in front of an assisted-living facility in Elk Grove after a single case had been identified there on March 10.

She was reporting on the first confirmed death of a resident in senior care, a woman in her 90s. This was just days before the March 13 federal ban on all visitors to nursing homes was ordered.

Looking back, Chabria said she marvels at how much has changed since then.

“One, I would never be out there trying to get into a nursing home in person, and two, a single case seems quaint at this point,” Chabria shared. “We’ve seen this just spiral at a rate that I don’t think anyone in the industry or outside it really could have imagined.”

COVID-19 Data from Senior Care Facilities Trickling Out

In mid-April, as concern of the impact on elder care facilities grew, California joined a growing number of states to begin publicly sharing the names and COVID-19 data from skilled nursing hospitals and assisted-living facilities.

Chabria and other panelists who spoke during Glazer’s virtual town hall said the data provided by the state is insufficient to allow the public to understand what is really going on in long-term care facilities.

While the numbers provide some insight, much of the information is self-reported. There isn’t publicly available information on COVID-19 cases for most of the state’s assisted living facilities.

As of May 1, there were 4,189 nursing homes residents who tested positive for COVID-19; and 644 residents and 11 health care workers died from the disease, according to the California Department of Public Health.

The Community Care Licensing Division of the California Department of Social Services, which licenses assisted-living facilities known as Adult and Residential Care Facilities for the Elderly, has reported a total of 1,419 positive cases and 177 deaths in facilities it regulates.

Across the country, as of May 1, states have reported at least 97,000 COVID-19 infections among residents and staff in long-term and adult care facilities, along with more than 17,000 deaths.

Nicole Howell serves as the executive director for Ombudsman Services of Contra Costa, Solano and Alameda counties. The long-term care ombudsman’s job is to protect the rights of the roughly 29,000 people across the three counties who live in long-term care facilities, to address quality of life and care issues, and to intervene in cases of elder abuse and neglect.

Notable outbreak hotspots at senior care facilities in the three counties include The Orinda Care Center, with 53 positive cases and four deaths; Carlton Senior Living in Pleasant Hill, where 35 residents and 23 staff members tested positive and five people died; and Gateway Care & Rehabilitation Center in Hayward where more than 100 residents and staff members became infected and at least 13 people died.

Because of the prohibition on visitors, Howell said she has been unable to make multiple unannounced facility visits, as is the custom. Instead of dropping in, visits are conducted remotely.

“We’re still seeing the same kind of issues in long-term care we’ve seen previously related to not enough staffing, lack of care, and then you add into it COVID-19 … and it's just an opportunity for things to go very wrong for older adults who we know are so frail.”

Howell said that while she believes many licensed long-term facilities are doing their best to report infections among residents and staff, she called the state Department of Social Services’ practice of shielding smaller facilities from public disclosure “deeply troubling.”

These smaller assisted-living care level facilities, commonly known as six-bed board and care facilities, make up more than 80% of the 7,300 assisted-living facilities in the state.

They are frequently located in private residential homes, and those who staff them commonly split their time at multiple locations.

Citing privacy concerns, the state publishes only aggregated infection data from these facilities and does not make information on individual facility outbreaks available to the public.

Howell noted it makes sense for rural communities where there are few facilities.

“But in communities like ours where there are hundreds of six-bed facilities,” she said. “And yet those are not being reported and shared, I think there’s a significant blind spot in the information that we know.”

Unprecedented Challenges Like Never Before

Craig Cornett, CEO and president of the California Association of Health Facilities, said outbreaks are not necessarily the result of inattentiveness or lapses in nursing homes, but rather the vicious and persistent nature of the virus and its threat to the very people in their care.

“Everyone in these facilities are older and very health-compromised already, and those are the most vulnerable populations to COVID and to death from COVID anywhere in the world,” Cornett said.

Skilled nursing facilities have also been struggling, because they have not had necessary protective supplies, particularly masks and gowns, which have not been available anywhere, Cornett added. In addition, Cornett noted there has not been nearly enough testing of residents and staff.

Joel Goldman, a senior partner in the Senior Housing and Care Practice Group at Hanson Bridgett LLP, said one of the difficulties now is balancing the needs for COVID-19 protection with the psycho-social needs of senior housing residents.

He cited a new directive in Los Angeles County that says those in a long-term care facility have to be confined to their rooms, regardless of whether they, or anyone else in the building, have tested positive for COVID-19 or whether they are systematic.

“One of my concerns is that if we go too far in order to stop the spread of COVID-19, we’re going to literally kill people because of the social isolation,” he said.

Mike Dark, staff attorney at California Advocates for Nursing Home Reform, a nonprofit that advocates for people in long-term care, said well before the pandemic that many care facilities were already thinly staffed and had a history of terrible infection control with lax oversight and enforcement from regulators.

“It is hard to turn bad practices around in just six weeks, even when they’re under a spotlight,” he said.