Which elder-care facilities have COVID-19? Florida won’t say, filling families with dread

A devoted grandson learns his grandmother died alone last weekend. The family was never told she had fallen ill. A fragile mother is moved from her room so the senior home can expand its “quarantine wing.” Her daughter was told no one has tested positive for the coronavirus.

A family repeatedly asks if anyone has tested positive at the home of their grandfather only to receive cheerful texts that avoid the question and say: “We’re all doing great!”

Barred from visiting their relatives in the midst of a pandemic, people with relatives in nursing homes and assisted living facilities across the state say they are also being deprived of information that could reassure them that their loved ones are safe.

Kristen Knapp, spokeswoman for the Florida Health Care Association, the trade group representing most nursing homes in Florida, said “we’re recommending and encouraging [the homes] to disclose” information to relatives of residents but that it’s “the decision of the Department of Health” to release the data to the broader public. The health department has refused to share it — or to tell the Herald the legal justification for not doing so.

“Families should know so that informed decisions can be made about care,’’ said Bea Coker. She lives in Lake City, and her father is in a local nursing home. She’s been told everyone is safe there.

“I assumed all nursing homes would want to keep the public informed,” she said.

On Tuesday, the health department reported the aggregate number of residents and staff at long-term care facilities who have tested positive for COVID-19, the deadly respiratory disease caused by the coronavirus: 1,179 — up 217 cases since Monday. Most of the cases are in Miami-Dade, Broward and Palm Beach counties, but alarming hot spots have metastasized in three North Florida counties: Suwanee, Clay and Leon.

Which facilities are those?

The state won’t say.

The state is facing a legal challenge from a coalition of news organizations. Begun as a lawsuit drafted by the Miami Herald, the challenge has drawn support from several other news media, including Gannett’s Florida publications, the Sun Sentinel, the Orlando Sentinel, the Tampa Bay Times, The New York Times, Scripps’ five Florida TV stations, and the First Amendment Foundation. The list may grow further.

Helen Aguirre Ferré, spokeswoman for Gov. Ron DeSantis, told the Herald two weeks ago when the records request was initially spurned by the governor, the health department and the Agency for Health Care Administration that DeSantis would continue to study the issue.

“We’re still reviewing it,” Ferré said Tuesday.

Also on Tuesday, an attorney for AHCA, which regulates elder-care facilities, informed the Herald’s law firm, Thomas & LoCicero, that the records request is still under “review.” The request was submitted March 23.

“Anyone with a relative in an elder-care facility has a right to know if their loved ones are at risk so they can make an informed decision about their care,” said Aminda Marqués González, Miami Herald editor and publisher.

On Tuesday, one of the largest nursing home chains in the nation, Pruitt Health Care, broke with the state’s blockade on information and announced it would post on its websites all positive cases among staff and residents for each of its homes, including three in Florida.

When asked why other facilities don’t do something similar, Knapp, of the trade association, said, “that’s their decision.”

Advocates for the residents and their families say the state must do better.

“While AARP Florida is confident that senior officials of the state of Florida care deeply for older Floridians, we also know that more could be done to protect the frailest of the frail,’’ said Jeff Johnson, AARP’s Florida state director.

“We need significantly more testing of workers and residents to proactively contain the virus, and adequate supplies of protective gear for front-line workers in these facilities to prevent its spread,’’ he said. “We also need more information on which facilities are affected with cases and fatalities so families and the community at large can have peace of mind that they are being kept fully informed.”

Older adults are the most likely to die from the coronavirus, especially those with pre-existing health conditions, like nearly everyone in a nursing home. One ALF in Fort Lauderdale, Atria Willow Wood, has recorded at least seven deaths linked to COVID-19, drawing the ire of the governor.

Those aren’t the only South Florida elder-care facility deaths tied to the coronavirus.

On Monday, the Court at Palm Aire, a senior living community in Pompano Beach, notified its residents and family members that two people in its skilled nursing wing had died.

Five other residents had also tested positive, according to the email, which was obtained by the Miami Herald.

In the wake of the news, Ellen Burr, whose mother lives at the facility, said she has been troubled by the screening protocols at the home. Without widespread testing, she said, employees could be spreading the virus without anyone knowing it until it’s too late.

“Even though they’re taking temperatures, it doesn’t do anything if they are asymptomatic,” Burr said.

The Herald’s attempts to talk to anyone with Palm Aire management were unsuccessful.

Elizabeth Nazarett is fraught with worry about her 85-year-old mother, a resident at a nursing home in Hollywood.

Residents have been confined to their rooms for weeks, she said, and her mother has lost eight pounds. Staff members told Nazarett they didn’t have gloves and masks and some of them had to bring the supplies from home. Then they said her mother needed oxygen, and she asked that her mother be tested for the coronavirus. “They said she didn’t meet the criteria.”

Early Monday morning, Nazarett received a call: “Your mom is being taken to the hospital. She has a fever.” The diagnosis is a urine infection, but Nazarett is dubious.

“I have to believe what they tell me,’’ she said. “I don’t know why testing has not been performed over there or if anyone has had the virus. This is very sad for the patients and for the relatives.”

DeSantis on Monday acknowledged for the first time that the scope of the COVID-19 problem in elder-care facilities is getting worse. He announced he was calling on the National Guard to supplement strike teams conducting aggressive testing at nursing homes and ALFs. He said Tuesday the teams had already taken samples from 500 individuals.

The toll the coronavirus outbreak is taking on families is mounting.

Jessenia Alvarez told the Herald her father has brain cancer and is in hospice at a nursing facility in Miami-Dade. Repeated attempts to get someone to answer a call “is close to impossible,’’ she said.

“Now we’ve been told my father has pneumonia and a fever, but they refuse to tell us if he will be tested for COVID or if anyone has tested positive,” she said. On Monday, they moved him to a hospital, and he has a fever and cough.

“He has all the symptoms,” she said. “It’s scary and not being able to visit makes it hard.”

Brittany Tinker’s grandmother is at the same Miami-Dade facility, and although the granddaughter has called, the home “is refusing to give me any information about the safety standards they’re supposed to have for my grandmother,’’ Tinker said. Her grandmother suffers from Alzheimer’s and diabetes.

“They tell us everybody is healthy, everything is OK, and it’s not OK,’’ Tinker said. She is worried that some of the staff have tested positive for COVID-19 and wants assurance that precautions are being taken.

Windy Hempstead’s mother is at an assisted living facility in Lecanto, southeast of Orlando, and the daughter has been calling for weeks to try to get information about whether rumors are true that the virus has spread to the facility. She said she has been given no answers.

On Monday, they moved her mother to a room in another area. “They said it was for her safety because they were going to expand the quarantine area. They said they’re planning to bring in people who have recovered from the hospitals and they are quarantining people.

“Why do they suddenly need 40 people who need rooms in quarantine if no one is testing positive?’’ Hempstead asked. “I’m livid.”

Rep. Shevrin Jones, a West Park Democrat, relayed the story of a constituent, a close friend who was in daily contact with his grandmother in a Hollywood nursing home until the coronavirus outbreak. The grandmother had a stroke years ago and had limitations, but the nursing home told the grandson she was “fine.”

“That was the last communication,’’ Jones said. “The facility did not even let the family know that she was declining in her health. They just told them that she died.”

The family asked about the cause of death and whether anyone at her facility had tested positive for COVID-19, Jones said. “They weren’t given an answer.”

“Maybe they’re afraid they haven’t done their due diligence to protect the most vulnerable,’’ he said. “If that’s the case, hiding the information won’t help. It’s malpractice.”

William Dean, a North Miami Beach attorney who frequently sues nursing homes and assisted living facilities, said it’s unclear what residents are dying from because access to medical care inside the facilities has dropped off.

“I can only imagine once this whole thing clears and we get records and find out the truth,” he said. “I’m sure it’s going to be a very bleak situation.’’

Miami Herald staff writer Carli Teproff contributed.

Mary Ellen Klas can be reached at meklas@miamiherald.com and @MaryEllenKlas