Until the coronavirus outbreak hit.
As of May 1, more than 60% of the 135 residents at the home — including his mother — and at least 23 employees had tested positive for the fast-spreading virus, according to family members of residents there.
Eighteen residents have died, so far.
"Mom is literally stuck in a jail cell that she is paying for to die," Thomas said.
There's another frustration for Thomas and families across the Northeast, where nursing home cases and deaths are most acute in the U.S.
The home's operator has not publicly released infection data, and Pennsylvania health officials aren't, either. And other states have offered a scattershot approach to releasing the number of death and cases within nursing homes.
"They kept it quiet for a long time," Thomas said. "Not everyone wants to live in a fishbowl."
State and local health officials nationwide have faced increasing scrutiny over the collection and release of infection data for long-term care facilities, whose residents are among the most susceptible to COVID-19, the illness caused by the coronavirus, and its complications.
States have adopted their own standards with mixed results, according to interviews with long-term care officials, patients' families, health-care advocates and government officials, and from an examination of states' records by the USA TODAY Network Atlantic Group, a consortium of 37 Gannett-owned daily newspapers across the Northeast.
Only nine states are reporting comprehensive data on infection cases and deaths at the facility level, including New Jersey, according to the Kaiser Family Foundation, a national nonprofit that focuses on health care issues.
Where limited information has been made public, the amount and its accuracy has raised questions at a time when public health experts say knowing where the virus is spreading is crucial to preventing future outbreaks and allocating testing kits, supplies and protective equipment.
"When there is no accountability, the only kind of accountability that is left is the public scrutiny of places," said Brian Lee, executive director of Families for Better Care, a national long-term care watchdog group.
"Who does it ultimately benefit to not know the names of the providers? The providers. This shows (states) are protecting the interests of the providers."
What's disclosed in states about nursing homes
New York health officials issued an emergency order in March directing nursing home operators to inform residents and their families when a COVID-19 case was confirmed in a home.But many operators interpreted it to mean they only had to disclose the first positive case, not subsequent ones.
The state later toughened the internal reporting rules, ordering nursing homes to inform residents and families of all positive cases and deaths within 24 hours.
Under new federal transparency rules, expected to take effect soon, skilled nursing homes will be required to tell residents, their families or representatives within 12 hours of a confirmed COVID-19 case.
The facilities must also disclose when three or more residents or staff experience onset of new respiratory symptoms within 72 hours; provide updates weekly or each time a COVID-19 infection is identified among staff or residents; and include steps taken to prevent or reduce infection spread.
But those new notification rules do not apply to the state-licensed personal care and assisted living homes, which fall under state oversight.
"This is an evolving situation the data that's coming in, and we do track this," said Dr. Howard Zucker, the New York health commissioner. "If there is a concern on a specific nursing home and what the numbers are, we will look into that."
Nearly 29,000 assisted living facilities alone are operating in the U.S., outnumbering nursing homes nearly 2 to 1, according to AARP.
State lockdown orders have only heightened the worries of patient advocates, friends and families about what is happening inside long-term care facilities.
Government inspections largely have been suspended and most outside visitation restricted, which leaves operators to essentially police themselves.
"The state regulates the nursing home, but it's a private corporation, sometimes a not-for-profit but basically the same thing, that gets paid for their service, and they're supposed to provide that service," New York Gov. Andrew Cuomo said April 22.
COVID-19 data discrepancies among states
Thirty-six states were reporting some level of data about coronavirus cases and deaths in long-term care facilities as of April 23, according to the Kaiser Family Foundation.But there is wide variation in the types of data reported, including infections, deaths, types of facilities, inclusion of residents and staff, and frequency of the updates.
Delaware provides daily updates on resident deaths by facility and total positive cases among residents, but not staff. Maryland and Rhode Island are among the 15 states not reporting any long-term care center data.
New York falls in the middle of the pack when it comes to transparency. The state releases facility-level numbers for coronavirus deaths in its 613 skilled nursing homes.
But it didn't start there.
The state Department of Health initially ordered nursing homes to report all COVID-19 cases and deaths, but the department did not release those numbers in daily public updates. Statewide case and death totals were released only after reporters asked about them.
About a month after the first positive cases were reported in a Brooklyn nursing home, the health department began releasing county-level breakdowns of positive cases and deaths.
Days later, it produced a second list identifying facilities reporting 10 or more COVID-19 deaths. Later versions of the list reduced the cutoff to five deaths per home.
But media reports and statements by nursing home operators have made clear there are more deaths in some counties than the one state list reflects, and there are homes that have had in excess of five deaths that are omitted from the other list.
And the state doesn't note deaths of staff at nursing homes.
The state Department of Health and Attorney General Letitia James last month launched investigations into claims that nursing homes failed to disclose COVID-19 information as required and violated safety requirements.
"They submit these numbers under penalty of perjury," Cuomo said during a press briefing Friday.
Members of Cuomo's COVID-19 task force on Friday asserted the discrepancies in numbers could be a result of some nursing homes failing to report unconfirmed, or suspected, COVID-19 deaths, such as those without a positive test.
They noted that efforts are underway to update the public data with confirmed and suspected deaths at nursing homes.
For example, one nursing home near Rochester has had at least 17 residents die with COVID-19, but the home doesn't even show up on the state's list of fatalities.
Meanwhile, the state's decision to confine the list to only homes with five or more deaths has left the numbers incomplete.
Fewer than half of 3,086 nursing home deaths from COVID-19 that the state reported on May 1 about 17% of the statewide death toll, were linked back to an actual nursing facility, leaving questions about the locations of another 1,700 deaths.
The ratio is even wider when it comes to identifying adult care facilities where outbreaks have occurred. Only 30 fatalities out of a total 643 are attributed to a known facility.
State health officials cited privacy concerns as the reason for withholding names of facilities with fewer than five deaths. They have said it is based upon the federal Health Insurance Portability and Accountability Act of 1996, known as HIPAA.
It is an argument disputed by Adam Marshall, staff attorney for the Reporters Committee for Freedom of the Press.
"There are numerous (HIPAA) exceptions that allow covered entities to release even protected health information, including basically to try to control the spread of infectious diseases," he said.
'Very nerve racking' as COVID-19 spreads
When New Jersey began putting out a list of long-term care homes with positive cases on April 20, Suzanne Oliva checked it every day.Her 83-year-old mother has a private room in an assisted living home in Monroe, New Jersey.
The place is one of the good ones, she said: The staffers are the most reliable and dedicated workers she's seen. They answer her calls and send out regular updates on the number of COVID-19 cases spreading in the building her mom now calls home.
Still, her mother worries, and Oliva feels powerless against the climbing number of positive cases there. Her mother hasn't been tested for the virus because she has no symptoms.
"It's just very nerve-racking hearing about people she knows there that have gotten sick," Oliva said. "Every day it's a new worry about that."
One of those new worries is the infection numbers from the state: They have fallen short of what the facility told her directly and never changed, she said.
"My concern is that our state has no idea about the staggering number of positive cases at our nursing homes and assisted living facilities. As in my mom's case, the numbers are far worse than what is being reported."
New Jersey publishes a daily list of nursing homes and assisted living facilities whose residents had been infected by or died from coronavirus after facing mounting public pressure for transparency on conditions inside the facilities.
Gov. Phil Murphy expressed concern that those homes were not complying with his prior order to report case numbers to residents and their families.
"Repeatedly we have reinforced their obligation to inform residents, staff and families," Health Commissioner Judith Persichilli said earlier this month.
"However, we are still hearing concerns that that is not taking place. So in the full interest of transparency, we are sharing the details."
Almost immediately, though, there was criticism about accuracy.
The union representing nursing home workers said the numbers likely far undercounted cases. About 40% of the state's 7,700 deaths were in nursing homes.
Some facility operators complained the state counted staff and resident infections together, making it appear that positive case numbers were much higher than what some facilities had been reporting.
One nursing home appeared on the list as having a single death, but the operator said that was incorrect and the list was later updated to zero deaths.
The process to improve data accuracy was expected to be completed by May 1, Persichilli said. The state is also creating an online reporting system that officials say will provide more up-to-date information.
'Hiding it has not helped'
Linda Derry was so scared of the coronavirus, the 79-year-old Pennsylvania woman canceled her hip replacement surgery originally scheduled for March 18."I don't want to take a chance," she told daughter Noralyn Harris, who lives in Bucks County.
Derry died April 26, three weeks after she tested positive at the for-profit Pennsylvania memory care facility where she lived, Harris said.
Harris said that she doesn't fault the staff who cared for her mother. She believes they are overwhelmed with sick people, which may be compounded with staff getting sick or testing positive for the virus.
"What I really think is someone should be helping them. I'm not blaming them," she said. "You appreciate the people taking care of them, but you're at their disposal."
But she is angry that she was not given more information about infections in the facility.
Harris recalled how an employee called to notify her about a COVID-19 "exposure" involving another staff member.
When she asked what that meant, Harris was told they couldn't provide more information, citing the HIPAA privacy law.
The only other call she received about new COVID-19 infections was when her mom was diagnosed April 7, though Harris said she regularly asked about testing of residents.
It wasn't until after Derry died that she learned 73 of the 109 residents tested positive, Harris said. The facility now posts weekly updates on infections on its corporate website.
"Them hiding it has not helped. How has it helped? It's made it so everyone doesn't know what is going on," Harris said.
"I would have been more on them. 'What are you doing for cleaning, are you making sure you are making the place clean for anyone coming back?' I'd have asked more questions like that."
Industry groups urge COVID-19 transparency
Long-term care operators in Pennsylvania are not legally obligated to notify family, even residents, about contagious disease outbreaks, according to Kandy Schreffler, a regional long-term care ombudsman for the state Department of Aging.The information only has to be reported to the state departments of health or human services, which can order its release, she said.
The head of two industry groups representing most of the nation's roughly 15,000 licensed long-term care centers has publicly supported releasing facility-level infection data, and urged members to provide it to residents, families and staff.
"We believe this information can help identify long-term care providers who are most in need of testing and PPE resources," said Mark Parkinson, CEO of the American Health Care Association and National Center for Assisted Living.
HCR ManorCare, which operates long-term care and memory care facilities in 27 states, started posting in-house infection data online for residents and staff combined on April 20. The information is updated weekly. It does not include deaths in a facility.
Previously the company refused to publicly reveal if any employees or residents tested positive for the coronavirus.
"We have been calling and updating families about what is happening in the centers," spokeswoman Julie Beckert said.
Schreffler has also noticed recent improvements in communication and information
Among the biggest complaints is difficulty reaching staff for updates. Phone calls are unanswered or not returned. When they do speak to someone they get vague answers or none.
"If I owned a facility, my thought would be transparency," Schreffler said. "When you're not transparent, it's not good. I truly don't understand it."
Constrained COVID-19 transparency
Pennsylvania is among six states reporting data where long-term care residents account for more than half of the overall coronavirus deaths in the state, according to the Kaiser Family Foundation.It also is one of three states reporting only county-level data, not naming any nursing home.
As of May 1, long-term care residents accounted for roughly 18% of the 46,971 state residents testing positive for COVID-19 since March 6. They account for 65%, or 1,560 of the 2,354 deaths.
Roughly one-quarter of the state's 1,900 licensed long-term care facilities have reported at least one positive case of the coronavirus and nearly 1,100 employees reported testing positive.
State health officials only started providing those daily breakdowns on April 15. There are no plans in the foreseeable future to release facility names.
"While we want to make sure we are being as transparent and as open as we can possibly be, we will also want to be constrained and guided by what the law is here in Pennsylvania," Gov Tom Wolf said April 30.
Wolf and state officials cite a 65-year-old law as reason the health departments keeps records and reports of contagious diseases confidential, but the law gives them discretion to release data if health officials determine the public benefit outweighs privacy concerns.
Some Pennsylvania lawmakers want to amend the Disease Prevention and Control Law of 1955 to require wider release of data where there is a public health risk.
"Long after the pandemic is over, the concept of publishing data by facility would be true for the next contagious disease," said state Rep. Todd Stephens, a Republican.
"Also, it would keep them somewhat accountable about outbreaks."
David Robinson, USA TODAY Network staff writer in New York, contributed to this story.
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