SC families push McMaster, DHEC to ease COVID restrictions in nursing homes

Aug. 28--Cindy Buttino has spent the last six months trying to find out when she can see her mother again.

Her mother lives in a Greenville County nursing home and because of state mandated guidelines aimed at slowing the spread of COVID-19, Buttino has only been able to communicate with her mom via telephone or window visits.

Buttino has made phone calls, sent emails and written letters to elected officials.

Last week, she came one step closer to getting an answer after Gov. Henry McMaster asked the state Department of Health and Environmental Control to ease some of the restrictions on visitation for residents in long term care facilities.

"Even though I feel like it was overdue, I was thrilled to see him take action." she said.

Buttino is one of around 250 members of a Facebook group called "South Carolina caregivers for compromise -- because isolation kills too!" The group is part of a national movement to protect the rights of seniors who have been separated from their loved ones during the pandemic. It has become a hub for people with family members in nursing homes to air their frustrations, share advice and organize collective actions such as letter writing campaigns.

Buttino said she felt obliged to speak up on behalf of nursing home residents who can't speak for themselves.

"We are their only advocates. We've got to stand together and get justice for them."

Vickie Ward, one of the administrators of the Facebook group, said she believes its members played a role in McMaster's request to DHEC. "Between all of us writing and emailing and calling constantly and putting our stories out there, I think he had no choice."

Several members of the group, including Kay Galloway, whose mother was diagnosed with COVID-19 in March, said they believe isolation can be more harmful to an older person's health than the virus. Galloway said her mother's dementia has rapidly accelerated since the lockdown started.

"She's a completely different person now," Galloway said. "She's at the point now where her days of clarity are behind her."

Current DHEC guidelines only allow visitation in long term care facilities during end of life situations.

Several families said nursing homes have limited visitation not just for family members, but also for healthcare specialists such as podiatrists and dentists. They said employees from the South Carolina Office of Aging's Long Term Care Ombudsman program, which responds to complaints of abuse inside nursing and assisted living homes, have also been barred from entering these facilities in some instances.

Galloway said she is concerned that without that outside help, nursing homes are unable to deliver the same quality of care. "I wish we were able to really hold people more accountable for her care and the care of others and if I was able to go in in person I would be more able to do that."

She and other members of the group said they were confused why they could not visit if they took extra precautions such as getting regularly tested for the virus and wearing personal protective equipment.

"If they're opening everything back up then staff could bring COVID in too," Buttino said. "So why can't they allow us to come in and follow the same rules as them?"

The South Carolina Office of Aging did not respond to repeated requests for comment. The South Carolina Health Care Association, an industry group that represents more than 90 percent of the state's long term care facilities, did not respond to repeated requests for comment.

In a letter to Mark Elam, chairman of the state's Department of Health and Environmental Control board, McMaster acknowledged that "separation and isolation has caused loneliness, depression, stress and anxiety among residents and has frustrated those worried about a parent, grandparent or other loved ones' well-being."

While some members of the group said they believe they are finally being heard, others remain skeptical.

"He did not give DHEC a deadline," said Cynthia Pierce, whose mother is in a Darlington County nursing home. "Are they going to say that we still have three or four phases until we open up? And what does he consider a visit? Does that still mean through the window? We still have a lot of questions that need to be answered."

Pierce pointed out that McMaster has changed course in the past. In June, the governor asked DHEC to draft new guidelines that would allow visitation in long term care facilities but then reversed his decision after positive cases in the state shot up.

"It became necessary to postpone releasing the visitation guidelines due to concerns about the rising rate of infection and hospitalization," McMaster wrote in the letter to Elam.

As of Tuesday, 4,652 long term care residents in the state have contracted COVID-19 and 984 residents have died from the virus, according to DHEC.

The debate over how to best care for seniors amid the pandemic is not unique to South Carolina. The U.S. has more than 15,000 nursing homes, according to 2016 data from the federal Centers for Disease Control. As governors across the country have placed additional restrictions on those facilities, families have expressed frustrations about the unintended consequences of their actions.

Since the pandemic started, "caregivers for compromise" Facebook groups have been formed in several other states including Florida, New York and North Carolina. One nationwide "caregivers for compromise" group has more than 9,600 members.

For Ward, whose grandmother was in a nursing home in Spartanburg County, McMaster's request to DHEC was "a day late and a dollar short."

After months with no word on when restrictions would be lifted, she decided to move her grandmother back home with her. Then, just as she was getting ready to move her out, her grandmother tested positive for COVID-19.

"So all those restrictions, which were supposed to keep her safe, ended up being for nothing," Ward said.

On Monday, she moved her grandmother out of the nursing home. Though bringing her grandmother home could expose her and her husband to the virus, Ward said it was a risk worth taking.

"At this point, this is my only chance to spend time with her. And if she passes, I would rather her be with people she loves than all alone."

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