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Elder advocates are calling them cruise ships on dry land: Close to 200,000 Floridians live in nursing homes and retirement homes, which could become incubators for disease among sometimes frail elders as the coronavirus pandemic spreads throughout the state.
The state Department of Health said that, as of Monday, 33 Floridians living in a skilled nursing or assisted living facility had tested positive for the coronavirus, the respiratory infection that has become a global scourge. At least three long-term care residents have died from the infection.
But that’s about all health administrators, and Gov. Ron DeSantis, are saying.
For about two weeks, journalists and elder advocates have pressed state leaders to release information about where long-term care residents and staff have been exposed to the extremely contagious infection. The DeSantis administration has alternated between No and Maybe.
For people with parents and grandparents in group homes, the frustration has been compounded by an ongoing ban on visitation related to the worldwide coronavirus outbreak
On Wednesday morning, DeSantis’ spokeswoman, Helen Aguirre Ferré, told the Miami Herald the governor was continuing to withhold the location of homes where residents or staff members have contracted the infection. DeSantis, she added, also would continue to study the issue.
“He wants to do the right thing,” Ferré said.
For Brian Lee, a former Florida long-term care ombudsman who now leads an organization called Families for Better Care, that’s not good enough. Lee says the state’s refusal to identify homes where residents are at risk is like “playing Russian roulette” with elders’ lives.
“This is the worst public health crisis in at least this century,” Lee said. “I stress the word public, because we are all affected. And the public has the right to know if these facilities are spiraling out of control into an outbreak. By not being transparent, it just fuels fear.
“The best thing to do is be transparent,” Lee added. “It calms anxiety.”
In all, Florida licenses 691 nursing homes, with about 84,448 beds, and 3,081 assisted-living facilities, or ALFs, with 106,103 beds.
There is no evidence yet of a significant outbreak in a Florida facility, though data released by the state may not be reliable: Neither DeSantis nor his health administrators have been willing to say whether large numbers of long-term care residents have been tested for COVID-19, the disease caused by the coronavirus.
The state has not disclosed the number of additional known infections within long-term care facilities, if any, since Monday.
A deadly outbreak that killed 35 staff and residents in Kirkland, Washington, was the first indication of what the virus could do in a congregate community of largely frail elders in close proximity. The U.S. Centers for Disease Control and Prevention, which studied the tragedy, called it the “epicenter” of the novel coronavirus outbreak in that state in a report released Tuesday.
The CDC said that, among 15,000 nursing homes nationwide, 147 facilities across 27 states have reported at least one resident has developed COVID-19.
At least 55 coronavirus-related deaths can be linked to such facilities, though the number is likely higher, The Washington Post reported.
In the wake of such numbers, elder advocates are pressing for more openness from state leaders, who have touted their efforts to halt the spread of the coronavirus among long-term care residents — but have repeatedly declined to discuss what, precisely, they are finding, and where.
The DeSantis administration has based its refusal, so far, to name homes with positive results on its desire to protect the confidentiality of residents. While he has not named the law, DeSantis appears to be invoking the federal Health Insurance Portability and Accountability Act, or HIPAA, which protects patient medical records and privacy.
Pamela Marsh, a former top federal prosecutor who now heads the Tallahassee-based First Amendment Foundation, suggested that the HIPAA law is a fig leaf being used to hide vital information.
“That information should be made available,” Marsh, the former United States attorney for Northern Florida, told the Herald. “It can’t be business as usual for the families of loved ones in care.”
Families of elders in long-term care, Marsh said, “are making decisions in the dark under the excuse of an emergency. You need a better justification for withholding” information about facilities where the infection is spreading. “I don’t think the HIPAA justification holds water,” Marsh said.
DeSantis has broken his silence — but only to discuss a 180-bed ALF in Fort Lauderdale, called Atria Willow Wood, where three residents died after contracting the infection. DeSantis has called it a “problem facility,” and has repeatedly invoked the possibility that the home could be criminally charged with negligence.
DeSantis said he had named Willow Wood publicly only because “that [facility] was clearly non-compliant [with state guidelines], negligent, and it did cost those residents their lives.”
When asked, his administration declined to specify why the governor breached resident privacy to name the home, except to say: “Gov. DeSantis will call out those who are negligent or non-compliant with keeping our most vulnerable seniors as safe as possible from COVID-19.”
DeSantis, who has met with reporters daily, either by video hookup or in person, since the pandemic took hold in Florida, has said that, in addition to the three deaths, several other Atria residents or staff members have tested positive for the infection, or are awaiting the results of testing.
“Construction workers, staff and cooks who were not screened were allowed to go and mix with the residents unimpeded,” DeSantis said last week. “That is exactly what you are not supposed to do.”
The home, DeSantis said at a news conference Monday, “clearly fell below the standard of care. And whether it went into criminal [culpability], I think that’s a possibility.”
The owner of Atria Willow Wood has declined to speak with the Miami Herald. In a statement, Atria said health administrators have been satisfied with the home’s efforts to contain and manage the outbreak.
“Ensuring the health and well-being of Atria residents and employees is our first priority,” the company said. “Beginning several weeks ago, we put protocols in place that were in adherence to, and in some cases went beyond, the guidelines we received from state and local officials in order to protect our community.
“As soon as the [Department of Health] office in Broward County notified us of a confirmed case in our community, we immediately escalated our safety and infection control protocols and expanded our extensive emergency-scenarios planning.”
As of Monday, Duval County, which includes Jacksonville, reported the greatest number of COVID-19 infections at long-term care facilities, with 14.
An unknown number of cases were linked to Broward County’s Camellia at Deerfield ALF. Overall, Broward reported 12 infections within long-term care.
But if you live in a nursing home or ALF in Florida, or if a loved one lives in one, it has been extremely difficult to gain information about where, specifically, residents are at greatest risk. At a handful of news conferences, DeSantis has has left open the possibility that he might lift the veil. But mostly, his spokespeople have defended his decision to withhold detailed information.
On Tuesday, in response to emailed questions from the Herald, DeSantis’ spokeswoman, Ferré, said the governor is being “cautious about revealing the names of the ALFs that have patients testing positive for COVID-19, as it may unintentionally reveal their identities.”
On Monday, the governor was asked whether he would release the names of homes in which residents had been exposed.
His reply: “Maybe.”
“We’ll see what the data is, and look at it, and see what’s going on,” he added.
The Herald posed a series of questions about long-term care residents exposed to the coronavirus to DeSantis and the leaders of two state agencies, the Department of Health and Agency for Health Care Administration. Neither agency, nor the governor, would address the questions directly.
On Wednesday, state Surgeon General Scott Rivkees said, in a prepared statement: “Long-term care facilities have an enormous responsibility in overseeing the health and welfare of some of our most fragile population. The Florida Department of Health, in coordination with the Agency for Health Care Administration, is providing resources and technical assistance to all long-term care facilities to prevent and mitigate the spread of COVID-19.”
DeSantis, in speaking to reporters, has referred repeatedly to a “problem facility in Broward County,” Atria Willow Wood, which includes a specialized unit for elders with Alzheimer’s disease or other forms of dementia. He has stated that in addition to the three who died, several others who lived or worked at Atria either have tested positive for the infection or are awaiting the results of testing.
Dave Bruns, a spokesman for the AARP in Tallahassee, said that long-term care residents, and their family members, “deserve to know what’s going on.”
Bruns said his group has been heartened by the response from both the long-term care industry and Florida state leaders to the pandemic: Florida health administrators have sent in “strike teams” to aid homes affected by the virus, and the homes themselves acted quickly and forcefully to address the crisis.
Still, Bruns said, “having a loved one in an elder-care facility where there is an outbreak of coronavirus must be extremely frightening.”
“This is an issue that families, and family caregivers, can get very emotional about, and for very good reason,” Bruns added.
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