Gov. Ron DeSantis refused for a month to release the names of elder care facilities with COVID-19 infections. When he did, the list contained errors, omissions and failed to say which nursing homes or assisted living facilities suffered the more severe outbreaks.


Families are left with more questions than answers and the industry says it needs help: more testing and more personal protective equipment. The industry also said it wanted more transparency.


Nurses and staff working with seniors under extraordinary conditions feel they are under assault with news reports on the nebulous list put out by the state late Saturday. Staffers at a facility in the Big Bend area couldn’t find child care after it came out they had an infection.


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Meanwhile, seniors in such facilities remain the most vulnerable to the coronavirus strain, accounting for nearly 25 percent of the deaths in the state.


As of Tuesday morning, the state reported 2,001 cases of COVID-19 in long-term care facilities with 207 deaths — 25 of them in Palm Beach County.


The state is releasing deaths and cases per county in long-term care centers through the Department of Health’s website. But it doesn’t match them up to particular facilities. There are 38 facilities in Palm Beach County and 313 statewide on the list.


"Our concern is that there can be a more consumer-friendly reporting system," said Kristen Knapp, spokeswoman for Florida Health Care Association in Tallahassee, which represents some 550 nursing homes in the state.


"Right now it’s a static document that lives on the DOH website. It doesn't say if it is a nursing home or if it is an assisted living facility. It doesn’t say if they have a current resident who has COVID."


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The list was riddled with errors, listing nursing homes or ALFs that had COVID when they did not and failing to list facilities that did have an infection, industry leaders said.


"I know they haven’t fixed all the problems," said Veronica Catoe, the CEO at Florida Assisted Living Association in Jacksonville.


"I got an email from a member where the Department of Health acknowledged that they had them on in error. So they had them on the list today, but hopefully they won’t be on the list tomorrow."


When the list came out, families inundated nursing homes and ALFs with calls asking why they weren’t notified. Some facilities then had to assure these families they did not have a case.


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"It’s very distressing," Catoe said. "I had one member call me up in tears."


Keith Myers, the CEO of MorseLife Health System in West Palm Beach, said the list caused a number of families to call him and ask if there was an outbreak.


There was one resident in independent living who had the coronavirus strain and she recovered after being hospitalized and quarantined, he said. There were no infections in the nursing home, ALF or other stages of living at MorseLife.


"It’s been a roller-coaster," Myers said. "People are misconstruing the information that was produced by the list."


Myers said he is all for transparency but when communication is wrong it creates needless anxiety among family members, residents and staff members.


"I want the right information written and communicated out there," he said.


Other states, such as Illinois, Georgia and California, have been more forthcoming.


California lists the name of the facility and number of infections. Illinois provides a map, the name of the facility, cases confirmed and deaths. Georgia goes a step further and differentiates infections among residents and staff.


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Knapp said on Tuesday that her team shared ideas for a more consumer-friendly reporting system with the Agency for Health Care Administration that would include the type of facility and number of positive cases among residents and staff.


"We feel a dashboard like this would be more beneficial to the public versus the list as it lives now," she said.


Some elder care facilities are taking it upon themselves to provide what the state of Florida does not.


As of Tuesday, Royal Palm Beach Health and Rehabilitation Center was not on the state’s list but it told families April 14 it has had a staffer test positive for COVID-19 infection.


Freedom Square, a large senior-living campus in Pinellas County, has kept families aware of a significant outbreak on its website. It said Sunday it had 39 residents and 19 employees who had tested positive for COVID-19. Three patients have died.


Still, some families said they had trouble getting information from elder care facilities prior to the release of the list.


One family said it took four days after the death of their loved one for the facility to confirm that the senior had COVID-19. The family asked that the elder care center not be identified.


"I’m upset about it, very upset. Not everybody is being so forthright," a family member said.


"I didn’t know they had exposure in their facility. They never told me that there was a case in there. You should say that the virus has been present to the family."


Knapp said there needs to be a recognition that elder care facilities are just like hospitals, that they are on the front lines and under stress. And like hospitals, there is a need for personal protective equipment.


"We are just running through our burn rate for our supplies. If there is a positive case in your building, you are going to run through your isolation gowns, your face masks and your face shields," she said.


The industry is also clamoring for testing and hopes that will further blunt any new infections, but adequate testing remains a problem throughout the nation.


There are plans for the Florida National Guard to test every employee of every long-term care facility. But those remain only plans since currently the lack of lab capacity can not meet the demand of testing kits.


"The more testing we have the better ability we have to make clinical decisions at our care centers," she said.


The elder care industry has long been the tip of the COVID sword in the U.S. An outbreak at a nursing home in Washington state took 19 lives last month. Deaths in New Jersey and New York have been horrific with more than 5,000 deaths at elder care facilities between the two states.


When the virus showed up in Florida, nursing homes stopped outside visitation and started taking the temperature of workers at the start of each shift.


One concern in the industry is that many staffers work at more than one facility or even at a hospital. Myers said extra precautions have been taken in regards to these employees, making them put on face shields, extra gloves and gowns before entering MorseLife.


The news that the industry asked DeSantis to shield it from lawsuits involving COVID didn’t help its cause. Then the governor was unwilling to release the names of facilities with infections. A coalition of news organizations, including Gannett’s Florida publications such as The Palm Beach Post, drafted a lawsuit.


Knapp said the problems with the list have compounded problems for staffers who feel they are not getting the public love that their brethren at hospitals are enjoying.


"In a small rural community up in my area in the Big Bend, when the list was released, the day care stopped taking the children of the staff at that facility," she said.


"They had some positive cases but now that puts tremendous pressure because the staff’s kids can no longer go to the daycare."


Myers said not only do nursing home staffers strive to keep residents healthy but must also care for their quality of life during this trying time.


"They deserve kudos for what they are doing and having the list make such a mistake is really, I think, terrible," he said.