TALLAHASSEE — It may have taken Mary Daniel, chief executive of a Jacksonville company, becoming a dishwasher at her husband’s memory care center, but a state panel of nursing home officials and regulators decided Wednesday to loosen restrictions on visitors at elder care centers after nearly six months of COVID-imposed isolation.
After three days of meetings, Daniel, who founded the 8,500-member Facebook group Caregivers for Compromise, persuaded the Task Force on the Safe and Limited Re-Opening of Long-Term Care Facilities to move forward with a plan to allow people to enter the homes if they qualify as an “essential caregiver” or “compassionate caregiver.”
The Agency for Health Care Administration will finalize rules next week, after they are agreed upon at the task force’s next meeting, said Mary Mayhew, the secretary of the agency.
It is an incremental but important step forward for Daniel, 57, the chief executive of Claim Medic, a small company that helps patients with healthcare bills. Her husband of 24 years, Steve, has Alzheimer’s disease and she was so desperate to see him she took at job working two days a week at Rosecastle Assisted Living and Memory Care in Jacksonville, where he is a resident and started the Facebook group to bring families with similar frustrations together.
After Daniel earned national media attention for her story, Gov. Ron DeSantis named Daniel to the task force to explore visitation options.
Since March, a governor’s executive order has barred visitors from nursing homes and assisted living facilities in an attempt to prevent the spread of COVID-19. Although the order allowed homes to make exceptions for certain family members to visit their relatives, most homes refused.
In three days of hearings, Daniel pointed to the hypocrisy of the state policy, which every day allows, thousands of vendors, nursing home staff and even state workers to enter long-term care facilities without proof they are free of the virus free but prohibits family members, even those with proof of a negative test, from entering a facility.
“Why am I allowed to touch my husband as a dishwasher, but I’m not allowed to touch him as his wife?’' Daniel asked at the first meeting of the task force last Friday. “What I hear from everybody is that makes no sense at all.”
Cases still rose during ban
Despite the visitor ban, cases have climbed at nursing homes and other elder care facilities. As of Wednesday there have been 9,239 positive COVID-19 cases in Florida long term care facilities. The virus, which is particularly deadly for seniors and people with underlying health conditions, has killed 4,118 residents and staff at nursing homes and long-term care facilities in Florida.
Daniels and her group have a single goal: Loosen visitation rules in safe and practical ways.
The draft agreed to Wednesday considers an “essential caregiver” someone who “provides health care services or assistance with activities of daily living,’' including things like dressing, bathing and eating.
A “compassionate caregiver” would be a temporary designation given to someone “intended to help a resident face a hard situation” such as during the end of life, a major upset or a difficult transition.
A facility may limit access if the resident is positive for COVID-19 or is suspected of having COVID-19 and may deny access by an essential caregiver for noncompliance of facility infection-control requirements.
Guidelines from the U.S. Centers for Disease Control and Prevention recommend that a community be COVID-free for 28 days before visitors are allowed into long-term care homes, and those guidelines were endorsed by Emmett Reed, executive director of the Florida Health Care Association which represents for-profit nursing homes.
But the draft proposals will allow homes to allow visitors even if they haven’t meet the CDC guidelines.
“I’m not sure how as the leader of this group I need to proceed,’' Daniel told Mayhew 50 minutes into the first meeting last Friday, held via video conference. “Whether that is to grovel to you all, to beg you for anything — just give us anything — or whether I need to be mad that we’re ever going to get anywhere and express to you our desperation and our helplessness and our hopelessness?”
She told them families were “hurting; we’re desperate” but the longer they talked “the more people died.”
“I am begging for urgency,’' she said. “...I don’t know how this works. I’m the newbie here. But I have I have run companies for my entire career and sat in a bunch of meetings,” and she urged them not to wait for another meeting.
She asked them to allow residents to designate “essential caregivers” to enter facilities as nursing home regulators in Minnesota and Indiana have done. And she urged them not to leave it up to the discretion of the homes.
“We will pay for our own testing, we will pay for our own PPE, and the problem with not making it mandatory is it then becomes a business decision for each of these facilities,” she said. “If it was optional and people chose to do it — and there will be many many places that choose not to do it — that people are going to be hurt by that and continue to die.”
Industry reps still object
The industry representatives said they agreed there was urgency but didn’t want the state to require homes to allow visitors in, even visitors who follow strict guidelines.
“We would like to see visitation being optional for communities, and we would like for them to make the decision about how they would like to open visitation, whether it be outside, whether it be inside in someone’s room or in a special place,’' said Gail Matillo, president of the Florida Senior Living Association.
Reed said that homes are so different across the state “if you made a blanket requirement, that could actually end up backfiring, and we could see COVID spread throughout a nursing home to staff and residents.”
By the second meeting on Tuesday, Daniel was again expressing frustration that the facilities were putting profits before people.
“This is a profitable business, and if it wasn’t there wouldn’t be memory care centers popping up on every single street corner, certainly in our town of Jacksonville,’' she said. “We don’t want this to be a business decision. It’s time this is a humanitarian decision.”
Mayhew responded that their goal was to balance both demands.
“No margin, no mission,’' she said, referring to the profit margin of for-profit facilities. “You’ve got to be able to support day-to-day operations, I agree, and the standard that we’re holding them to on infection control is about caring for and preventing the virus, and the harm from that virus, in their facilities.”
In the end, the draft proposal will not require homes to impose the “essential caregiver” rules but Daniel said that while the decision will not please all families, it was a positive step forward.
“I’ve worked hard to get to the governor because I felt he needed to hear us,’' Daniel said at the end of Wednesday’s meeting. “One of the frustrations that all of the caregivers that I represent have felt through these months is that our government wasn’t hearing our voices, and I certainly want to say that we have been heard.”
She said that the meeting also has her dreaming that soon she will “be able to turn in my two weeks notice for my dishwashing job and get to go back being a wife.”
There remain many hurdles, however, before families are allowed full access into homes where the state’s most vulnerable live.
For months, the industry has urged the state to provide frequent and rapid testing of its staff, and Daniel said tests should also ideally be made available for all visitors.
But Mayhew and Surgeon General Scott Rivkees said that is neither likely nor feasible.
“One of the concerns that I have is about an over reliance on testing,’' Mayhew said, noting that it helps to identify asymptomatic carriers but while the state is testing staff every two weeks, it’s not testing daily. A more reliable precaution, she said, it to require everyone to wear facial coverings, practice hand hygiene and social distancing.
Reed, the director of FHCA, said the industry had its own work group to study how to effectively bring visitors back into their facilities and concluded the best approach to allowing new visitors was to follow all the recommendations of the CDC.
Under those guidelines, homes would have to be free from any new COVID-19 cases for 28 days, demonstrate they have no staffing shortages, have sufficient protective supplies, have adequate access to COVID testing and have local hospitals with available acute care beds.
“We’re finally getting our footing and starting to think about how we safely reopen,’' Reed said. A poll of of the FHCA members found “their two overarching concerns are the decline in the residents’ mental and physical well being due to lack of visitation, and then they’re terrified of letting COVID in the building.”
He said it was important “that the facilities are able to have some control over who visits,” such as scheduling of visitors and the number of visitors.
Reed said that the industry wants all visitors screened for signs and symptoms of COVID-19, all should wear a mask, practice social distancing and hand hygiene and sign a consent form that says they understand the visitation policy. They also want “any visitor who enters a facility shall be subject to the same testing requirements as staff, and other contract vendors entering the facility.”
Daniel also pleaded for more communication, a flaw in the state’s COVID-19 response as AHCA and the Department of Health have claimed to be transparent but have withheld data from the public and been inconsistent in developing guidelines.
“People right now have nowhere to go to to file a complaint, to ask a question,” Daniel said. “The ombudsmen tell us that they are helpless in this situation, and I would like for us as a group to provide some outlet for people who have questions, legitimate questions.”
She urged the task force that if it agrees to incremental changes to also provide “a roadmap” for the future so that families have hope they will get back inside the facilities with their loved ones.
On Wednesday, she said the work of the task force “provided that roadmap.”