Coronavirus’ deadly new path
Cases on the rise in personal care homes
When Ted Sobek visited Oakleaf Personal Care Home in October to consider placing his 89-year-old mother in the Baldwin Borough home, the administrators emphasized one major point that has never left him.
“They were very proud of the fact that they had had no COVID cases,” Mr. Sobek, of South Park, said.
Though infections at the time were low across the state, Mr. Sobek said Oakleaf officials told him that they required residents to dine 6 feet apart and that all residents and staff members wore masks, among other restrictions.
On top of that, “it seemed homey,” he said of Oakleaf, a midsize personal care home tucked away in a former elementary school, all of which convinced his mother, Myrle Delewski, to move there in October.
Neither Mr. Sobek nor his mother could have known that Oakleaf and many personal care homes across the state were just weeks away from a large and deadly surge of COVID-19 outbreaks that began in November and would eventually claim the life of Mrs. Delewski and a dozen others at Oakleaf.
While much of the nation has focused on the crisis in nursing homes, the virus has left a devastating impact on personal care homes in Pennsylvania, leaving hundreds of people dead in a series of outbreaks since November that have been largely unknown to the public, the Pittsburgh Post-Gazette has found.
With far less regulation than nursing facilities, personal care homes have emerged as a new flashpoint for the disease since November, with cases and deaths that have exploded in facilities during the height of the pandemic — increasing at a rate triple that of nursing homes.
The risks in some of the homes, which are licensed by the state but not required to provide medical staff, have presented an entirely new set of challenges to public health officials, even as vaccines are being administered.
In just nine weeks at the beginning of the surge, the death toll in personal care homes more than doubled, from 586 in early November to 1,279 on Jan. 8, according to data obtained by the Post-Gazette. As of Feb. 16, the overall fatality count would soar to 1,548 across the state. And that is likely a large undercount because more than onethird of homes do not regularly report data to the state.
“Those numbers are very disturbing,” said Pam Walz, supervising attorney for Community Legal Services, a Philadelphia nonprofit that advocates for seniors. She said she was unaware of the statewide increase until the Post- Gazette showed it to her because the state had not previously made the figures public.
Created by the state 40 years ago, personal care homes were never envisioned as facilities for fragile elders. Rather, they were initially planned for people who were in relatively good health and mobile and who needed help with daily chores and perhaps some minimal physical assistance.
Serving frailer population
As the number of personal care homes increased over the past three decades — to 1,151 today across the state — so did the ages and frail conditions of the people in those homes, increasing the risk of severe illness when COVID-19 struck.
That change occurred at first because there was legal and political pressure on states to allow people with medical conditions into personal care and assisted living homes, rather than forcing them into nursing homes, said Eric Carlson, directing attorney for Justice in Aging, a Los Angeles advocacy group.
Some residents even mounted legal challenges to the state restrictions by citing the Americans with Disabilities Act.
Then, there was the consumer demand, Mr. Carlson said. Personal care homes “feel better,” he said. Residents “prefer the less medical environment when that’s available.”
As a result, many of the outbreaks in Pennsylvania’s personal care homes — with an average of 40 people, about one-third the size of the typical nursing home — have been every bit as pervasive and deadly as those in nursing homes, records and interviews show.
As the leader of a state-organized collaborative, Dr. David Nace, UPMC’s chief medical officer for senior communities, said he saw a distinct pattern in the homes when he and fellow group members were responding to outbreaks in long-term-care facilities.
“Early on, I think we started to see more nursing facilities, and then we started to see more personal care and assisted living as the months wore on,” he said.
Mrs. Delewski, who worked in Pittsburgh Public Schools cafeterias for 40 years, found out she had tested positive for the virus on Dec. 11, a couple of weeks after the first Oakleaf resident came down with it. For the next month, she was in and out of the hospital battling COVID-19 before she died Jan. 2.
“It was hard,” Mr. Sobek said of losing his mother, whom he talked to nearly every day.
Of the roughly 55 residents who lived at Oakleaf, Mrs. Delewski was one of 36 who came down with COVID-19 — meaning 65% of residents tested positive — and among 13 who succumbed to the disease.
The question being asked by experts, advocates and families of loved ones who died: Why did personal care homes, which avoided much of the devastation wrought by COVID-19 for so long, develop so many cases and deaths so late in the pandemic after the steps to prevent the disease’s spread had become so much better understood?
Some state officials and experts say the rise in cases was simply the result of the vast spread of the disease that took place in the fall and winter. They note that research in the pandemic showed a strong statistical relationship between a high number of COVID-19 cases in the counties where nursing homes are located and the outbreaks that took place inside the facilities.
“We know that community spread of COVID-19 is directly related to outbreaks in facilities,” Keara Klinepeter, senior adviser to the state’s secretary of health, said in a Jan. 13 online news conference when asked about the surge in cases in personal care homes. “As cases have surged this fall to levels that, on some days were triple or more of what we were seeing in the spring, I think it is understandable that we would see the virus getting into long-term care facilities, still.”
But families, advocates, other experts and officials who dealt with the outbreaks as part of a state collaborative network, say the surge laid bare flaws in the state’s personal care home system, which receives far less government oversight than nursing homes.
Less of a medical model
The federal government has no authority over personal care and assisted living homes, and the state’s Department of Human Services, which oversees the 1,151 personal care homes and 60 assisted living facilities, has just 45 inspectors to cover all of them. By comparison, the state Department of Health, which oversees nursing homes alongside the federal government, has 115 inspectors for 693 nursing homes.
As a result, there are fewer inspections of personal care homes compared with nursing homes: Just 2,000 for the state’s personal care homes in 2019, compared with 5,300 for the state’s nursing homes.
The state’s regulations for personal care homes also aren’t nearly as rigorous. For example, there are no infection control regulations for personal care homes — critical markers that can make a difference in whether a facility is overtaken by the virus.
“It’s less of a clinical medical model,” said Dr. David Kelley, chief medical officer for the state DHS’s Office of Medical Assistance Programs. “That’s the way they were set up.”
During the pandemic, the state and federal government launched an entire series of COVID-19 inspections that looked for infection control breakdowns in nursing homes, citing them for violations and ordering them to fix the problems when they occurred.
Because personal care homes were not subject to infection control regulations, the state’s regional collaboratives spent a lot of time helping them with infection prevention, which was part of the COVID-19 guidelines issued to all facilities in the state, Dr. Kelley said.
Despite the virus racing through personal care homes, they are not required to have licensed nurses on staff. As a result, many of the homes had no one inside with the expertise to impose infection prevention practices that were critical in staving off the disease.
“We’ve been concerned about personal care homes all the way through the pandemic because their staff are not trained to handle medical situations generally,” said Ms. Walz, of Community Legal Services.
The staff at the southwestern regional collaborative carried out 74 rapid responses to outbreaks in personal care homes, most of them in November and December. Dr. Nace said during those visits there was a visible difference with those homes that provided medical staff.
“We tended to see better coordination and better outcomes,” he said.
However, even some of those facilities with nurses on staff had large outbreaks.
Relaxing preventive measures
Multiple families of victims contacted by the PostGazette, like Mr. Sobek, cited a breakdown in COVID-19 prevention protocols in the personal care homes that began in late summer when case numbers statewide were declining significantly.
Some homes that had banned in-person dining began to allow residents to eat together or watch television together in common areas, for example.
“The same rules [about COVID-19 prevention] were not as strictly applied to” personal care homes, said Dr. Nicole Osevala, a geriatrician at Penn State Health’s Hershey Medical Center, who oversaw the regional collaborative in the north central region.
She said the surge in outbreaks was not only sparked by the community spread of the disease, but it was also fanned by having residents come and go, not having medical expertise on-site, and not regularly doing surveillance testing to catch the disease as soon as possible.
In some cases, residents would attend family gatherings and other events and then return to the homes.
“And some just knew this was their home and didn’t significantly change practices, like dining in the rooms. That and other measures that, while not pleasant for the residents, can also reduce transmission,” she said.
“What we saw was the perfect storm” to create a surge in outbreaks, Dr. Osevala said.
Anthology of McCandless, a 94-bed personal care home in McCandless that was halfway full when the pandemic began, has nurses on staff and still had one of the deadliest outbreaks in the state with 14 fatalities in December and January.
“I just think it’s a highly contagious virus that we’re still learning a lot about,” said Nichole Mitcham, Anthology’s administrator. “The tricky part of COVID is you can have wonderful screening in place, but because of the number of people who are asymptomatic, they’ll pass those screenings and still spread the disease.”
Anthology, like many other facilities, did relax some of its protocols — including allowing dining and holding activities together, albeit socially distanced — when cases got lower in the summer and early fall.
Even so, Ms. Mitcham said: “I feel very confident we did all we could to stop it.” Losing so many residents in less than a month “was devastating,” she said.
Because personal care homes are considered a “social model” of care — with rooms that resemble homes rather than the “medical model” of nursing homes — stopping residents from taking unnecessary visits outside the homes is difficult, several administrators said.
“We can’t force them to stay in; it’s their home,” said Wendy Mildner, administrator for The Sheridan at Bethel Park, which had a large outbreak in November and December that infected 56 of its 100 residents, with seven deaths.
“Despite us saying, ‘It’s probably not a good idea to go out,’ they do,” said Ms. Mildner. “I’ve asked residents and their families to be careful, and I think many of them were careful.”
Still, she said, “I have a feeling a visitor brought [the virus] in, or a resident went out and brought it in with them.”
Mr. Sobek said he is concerned that some of those factors may have contributed to his mother’s death.
He believes she could have become infected when the facility decided to start letting residents with diabetes eat together in the cafeteria, although they were kept socially distanced. Others, including Mrs. Delewski’s sister, Dolores, who lived with her at Oakleaf, had to eat in their rooms.
“That didn’t make any sense” for Oakleaf to have diabetic residents eating together in the cafeteria, Mr. Sobek said. “I think they lost that strictness they had earlier in the pandemic.”
He said he wonders if the facility was too shortstaffed to feed all the residents in their rooms after 22 of Oakleaf’s roughly 76 staff members tested positive.
“I just don’t think Oakleaf did everything they could to protect my mother,” he said.
Neither Oakleaf’s longtime administrator, Roseann Rosnick, nor its owner, Edward McQuade, responded to questions left for Oakleaf by phone and email about what led to the outbreak and whether allowing diabetic residents to eat together could have led to Mrs. Delewski becoming infected.
Mr. Sobek’s mother, who was lucid even into the final days of her life, still had her own questions, her son said.
“My mom would say, ‘I’d love to know who gave this to me,’ ” Mr. Sobek said.