By 8 a.m. every morning, nursing homes and long-term care facilities across Pennsylvania must report their number of COVID-19 cases to the state Department of Health.
In early April, the department began releasing the totals of COVID-19 cases and deaths, and the number of facilities by county, but have so far refused to publicly identify the affected locations.
The calls for the state to name names is growing after the Centers for Medicare and Medicaid Services announced it was mandating nursing homes to directly report cases to patients, their families and the federal government. The plan is for the federal data to be released to the public, but when and what details will be provided are unknown.
On Thursday, Gov. Tom Wolf said identifying affected nursing homes “is something we discuss all the time,” but that officials are being guided by a state statute that limits revealing information based on privacy concerns.
Pennsylvania is using the Disease Control and Prevention Act of 1955, which prohibits the release of disease records by state or local authorities — except when necessary to control the spread of disease in a community.
“We want to make sure we are as transparent and open as we can be” but are constrained and guided by the law in the Pennsylvania, Wolf said. “The debate and conversation will continue. We try to be an open as we can.”
In the wake of calls to release the nursing homes and long-term care facilities, Wolf spokeswoman Lyndsay Kensinger said the administration is considering it when privacy and reporting details are finalized.
“In the interim – and regardless of how nursing home cases and deaths are reported – we are working tirelessly to support all efforts to protect the state’s most vulnerable,” she said.
Data from county-owned facilities
The state’s stance hasn’t stopped the Lehigh Valley’s county-owned nursing homes from releasing their cases numbers and deaths.
Northampton County provides public data on COVID-19 cases and deaths among Gracedale residents and staff. As of last Monday, 80 residents tested positive and 19 had died, the county had said.
Lehigh County has also reported on Cedarbrook cases and deaths. As of Tuesday, seven residents at its Allentown facility died from the new virus, and 35 residents and 30 employees tested positive. Fountain Hill reported one fatality, and 12 resident and 11 employee cases.
It can be disconcerting when their numbers are released, as other facilities remain publicly silent, said Gracedale Administrator Jennifer Stewart-King, who has worked at the Upper Nazareth Township facility for about 15 years.
“We sometimes look like the bad guy,” she said.
When Gracedale was releasing information daily, it led emotional responses, including yelling and screaming from people. Now, they usually release reports on Monday and, depending on what happens case-wise, a second report later in the week, Stewart-King said.
Currently the information is sent in a media release, posted on Facebook and made available to families. Officials are working to add a text alert system for families.
“Families are always welcome to call in and get information. We ask that they be patient,” said Melissa Shafer, who is in charge of compliance at Gracedale.
The county-owned homes are only two of the 34 facilities with COVID-19 cases in the Lehigh Valley, according to state records. The Valley has had 893 nursing home residents become infected with the virus, and 111 residents die from it as of Saturday.
Over the past two months, workers and relatives have reached out to lehighvalleylive.com to confirm if nursing homes and assisted living locations have coronavirus cases.
Responses have varied, from silence to providing the number of cases but refusing to reveal the number of coronavirus deaths.
Some readers who reached out did not want to go on the record for this story, saying they worried about the effect it would have on their loved ones’ care.
Bessie Amato’s 92-year-old father Vincent Amato Sr. is in ManorCare Health Services-Easton at 2600 Northampton St. in Palmer Township.
As of Thursday, ManorCare Health Services reported it had 193 coronavirus cases at three of its Lehigh Valley facilities.
Amato said she first received a call that there was a presumptive positive COVID-19 case at the home around the same time lehighvalleylive.com reported the news.
“I feel in the beginning, they didn’t want to give information. As time has progressed, I’ve been getting more information,” Amato said.
She was informed last week that the Palmer Township facility had 91 cases, but has never learned if there have been any COVID-19 deaths at that ManorCare location, or any of its other locations.
The ideal, she said, would be that you could go online and look up facilities by name, see the number of COVID-19 cases and the number of deaths.
When she learned about the presumptive case, Amato drove over to the facility to speak with employees in person, and planned to pull her father out for a two-week leave of absence.
But if her father left the facility and then came back, he would have to be in quarantine before being allowed to return to his unit, she said.
“They said it was isolated,” and that no one in his unit had it, Amato said. “They told me ‘Everything’s fine. Everything is isolated.’”
Amato kept her father at the home, and a few weeks later, Amato received a call that the facility was going to be testing everyone, including her dad.
The second call was about the results. Amato’s father was negative, but there were 91 positive cases at the Palmer Township facility.
On Thursday, ManorCare spokeswoman Julie Beckert said there were 93 cases at at ManorCare Health Services-Easton, followed by 58 cases at ManorCare Bethlehem and 42 cases at Old Orchard Health Care Center in Bethlehem Township.
Beckert has not released any COVID-19 death figures.
Families in the dark
Pennsylvania has almost 2,000 licensed nursing homes, personal care homes and assisted living facilities.
“We are constantly reviewing and considering what information to release publicly, while also protecting the privacy and confidentiality of Pennsylvanians,” Department of Health spokesman Nate Wardle said via email. “Discussions about data and information that we can provide are ongoing as we work to keep the public, and the media informed.”
Health Secretary Dr. Rachel Levine said her department has received no complaints about facilities refusing to provide COVID-19 information.
“We’ve had no challenges in terms of their willingness to report it,” she said.
In a two-page letter dated April 21, AARP called on the governor and the Department of Health to identify affected nursing homes, publicize plans to transfer COVID-19 positive residents from nursing facilities into other facilities, and ensure nursing homes have adequate staff.
“Given recent press reports, we are troubled that some families remain in the dark about the care that their loved one is receiving, that facilities are not communicating to families quickly about developing COVID-19 cases in facilities, and that the workers on the frontlines are completely overwhelmed and lack the equipment and support they need,” the letter says.
Pennsylvania Auditor General Eugene Pasquale on Wednesday also said the state should be identifying the affected facilities.
“I do believe that every Pennsylvanian should know the number of cases and the number of deaths in every facility. I believe that should be public information,” Pasquale said during a Facebook Live chat. “First of all, it’s important to know that information from a health standpoint, (to) let people know if their loved ones are in those facilities … to the broader commonwealth, I think it’s important for strategic decisions to be made from there.”
Pasquale was speaking with Adam Marles, CEO of LeadingAge PA.
LeadingAge PA is a statewide advocacy organization for long-term care facilities for older adults, with members ranging from nursing homes and assisted living facilities, to retirement communities and senior affordable housing.
“From the very start of this, we have encouraged our members to be as transparent as possible with residents, family members and with staff members, to make sure that they know what’s going on in the buildings to keep people safe and what their plans are to continue to keep people safe, whether that is mitigation, prevention or both,” Marles said. “We encourage transparency for all providers and, in the cases where it’s not happening, it should be.”
Zach Shamberg, president and CEO of the Pennsylvania Health Care Association, said they want members to be over-communicative. The Pennsylvania Health Care Association represents 200 nursing homes and 150 personal care and assisted living facilities, including for-profit, nonprofit and government-affiliated facilities.
Shamberg said nursing homes already have to report all communicable disease cases to the state health department, and it forwards the information to the Centers for Disease Control and Prevention.
Other states are starting to report facility-specific data and “frankly, we would like to see that happen in Pennsylvania,” he said.
The other states include New Jersey, which on April 20 began releasing facility-specific data on COVID-19. The list includes nearly every long-term care facility in the state.
After the CMS announcement on April 19, Gracedale and Cedarbrook officials said their staffs were being trained on the federal reporting, and that facilities are providing the same information already to the state department of health on a daily basis.
“The idea is the information gets out there faster” by reporting it directly to CMS, Shafer said.
Instead of having staff sending multiple reports to various outlets, “we are advocating every day for one reporting mechanism,” Shamberg said.
Data and testing
Providing that data is dependent on being able to test people for the virus. Marles said the single biggest problem for nursing homes right now is the lack of PPE and access to COVID-19 testing.
“It’s not just masks. It’s masks and gowns and gloves and hand sanitizer, and in some cases, face masks. Trying to make sure the people serving older adults have what they need is vitally important,” he said. “We also need to make sure there is adequate testing. One of things that we desperately need to know is who has (COVID-19), so we know how to protect them better.”
Some facilities have contracted privately with labs, if they have the money to do so, and are paying for it out of pocket with the hope the government reimburses them in the future, Marles said.
Marles’ members always have supplies on hand for natural disasters, but “those supplies quickly ran out as this crisis began, essentially,” he said. “Getting those supplies adequately has been a struggle from the very start.”
Supply chains have been disrupted significantly and two, three or even four-week delivery delays have been reported.
“Some of our members are in pretty rough shape in terms of PPE,” Marles said. “We’ve heard stories about people needing to wash disposable PPE to reuse it because they don’t have any more. In some really extreme cases we’ve heard about the use of grocery bags or garbage bags for gowns. There is no greater need than that.”
Shamberg said making the case and death data public could also help hard-hit facilities get the resources they need.
“We believe it is in everyone’s best interests” to publicize COVID-19 cases, he said. “We believe it should be disseminated through a central source.”
In addition to supplies, facilities are facing growing financial issues, and emergency funding is arguably the largest issue, Shamberg said.
“During this epidemic the challenges of underfunding have been exacerbated and compounded,” he said.
Some members are paying hazard pay to staff. For supplies, they are seeing the cost of PPE quadruple.
“I’m worried about providers being able to keep the lights on and the doors open,” Shamberg said.
Going back home
Amato’s father is not at ManorCare for the time being. She became concerned when he didn’t want to speak via the tablet she bought him, and blood work done in-house showed not only did he have a bad urinary tract infection, but it had spread to his kidneys.
Amato said she was asked if she wanted to pick him up to take him to a hospital, or the home could call an ambulance and take her father to a hospital emergency room.
“Because I hadn’t seen my dad in a month, I wanted to pick him up,” she said.
On April 23, Amato drove to ManorCare, and saw all of unit 1 and the downstairs of the building closed off because of COVID-19.
“When I picked him up, he just said, ‘I feel sick,’” Amato said. “That generation doesn’t complain about anything.”
She took her dad to St. Luke’s Anderson campus, where she asked him to be re-tested for the coronavirus. He was tested and within two hours they learned he was negative, Amato said.
As of Wednesday, the elder Amato was still at the Bethlehem Township hospital, with plans for him to be released in a day or two.
Amato plans to keep him at her Williams Township home for a two-week leave of absence; she was working to get a hospital bed when she spoke to a lehighvalleylive.com reporter.
“I’m absolutely bringing him home until they get it under control,” she said. “Part of my worry is the lag in testing time, testing and getting his results.”
Amato said the goal is for her father to return to ManorCare. Amato, an actor, could potentially take care of him until she can start working again, but ManorCare will only hold his bed for a certain period of time.
“What do you do? I feel like this should be an extenuating circumstance,” she said. “I’m working on a timetable to the rules and regulations, the constraints during something that is unprecedented.”
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Sarah Cassi may be reached at email@example.com.