When the coronavirus pandemic hit long-term care facilities hard and they slammed their doors shut to reduce exposure, Ron Von Ronne, 78, was among those denied personal contact with the outside world and the family that loved him.
Von Ronne, of Albany, New York, has Alzheimer’s disease and was transferred to a nursing home from the hospital just before the pandemic.
At least one of his relatives had visited him almost daily. Then COVID-19 struck, said his daughter Mikko Cook, of Ventura, California. In the pandemic, the family found themselves cut off for more than 100 days with no word on how he was faring beyond “He’s fine” in response to their frantic queries.
Lack of access to older adults and disabled individuals of all ages in long-term care and assisted-living facilities drove thousands of families to seek help on social media and birthed a movement dedicated to ensuring loved ones cannot be kept apart. They’ve been pushing federal and state lawmakers to see that forced physical separation of family and friends never happens again in a health crisis. With contacts made on social media, Cook co-founded the Essential Caregivers Coalition and is a member of a national group of state grassroots advocates called the “Essential Caregivers Movement.”
Their movement may bear fruit.
Reps. Claudia Tenney, R-N.Y., and John B. Larson, D-Conn., along with eight co-sponsors so far have introduced The Essential Caregivers Act, HR3733, which is to be discussed at a news conference and roundtable in Washington on Wednesday. The bill would ensure that facilities receiving Medicare or Medicaid funding could never again completely bar residents from having visitors because of a public health emergency. Instead, each resident could name two “essential caregivers” who could come into a facility for up to 12 hours a day to help with care and provide comfort and companionship. Those caregivers would be required to follow the safety precautions required of staff.
Why the doors first closed on family caregivers is no mystery. The pandemic’s impact on nursing homes was shocking. The Centers for Medicare and Medicaid Services reported 656,336 cases of COVID-19 in long-term care facilities and 132,882 deaths among residents. Staff infection numbers were high, too: 585,666 facility staffers tested positive for COVID-19 and 1,938 died.
But the harm of forced separation for families has also been substantial, with a steady stream of stories from distressed friends and relatives cut off from elderly and disabled residents. Those visitors had prior to the pandemic often been valuable to facilities not only for their personal ties to residents, but as an extension of professional staff. They clipped nails, cut hair and helped with feeding and hygiene, not just comfort and cheer, freeing staff for more in-depth care. Many facilities have struggled with the increased burden on staff.
Birth of a movement
Before the pandemic, residents in facilities had the legal right to see family/friend caregivers whenever they wanted. But when facilities were proving to be a reservoir for circulating the disease, the U.S. Department of Health and Human Services issued a waiver in March 2020 that let states suspend outside access, said Cook.
“The 1135 waiver said to every governor of every state, ‘Look, there’s an emergency going on. And there are all these rules and regulations that you don’t have to abide by, during our emergency.’ One of those rules was, you can decide who goes into a long-term care facility,” she said.
Not only did residents lose their right to have visitors, but ombudsmen and many inspectors could be kept out, too.
Later, when even restaurants and bars started opening up again as COVID-19 cases dropped, when people started going to baseball games and playing golf, Cook said many states and care facilities were slow to pivot and the ban on outside visitors dragged on.
By that time, concerned family members and friends who hadn’t been allowed in to see loved ones in facilities were posting their stories, commiserating and strategizing on Facebook and other social media and groups began to form.
“We all began to come together and educate ourselves on what is happening and how can we bond to create a voice that would be heard by others in the same situation and by officials,” Cook told the Deseret News.
She said advocates have documented problems for residents stemming from isolation, including failure to thrive, not eating or communicating, and even cases of some who’d been able to walk before the crisis and who now rely on wheelchairs, among others. Reports of depression shot up, too.
The impact was not confined to residents.
Tim Chambless, of Salt Lake City, said his heart still breaks over the last year of his beloved Aunt Nita’s and Uncle George’s lives. He and his wife, Cathy, regularly visited the assisted living facility where George Lutes, 83, and Nita Lutes, 91, lived. The short visits had to be arranged in advance so that staff could get the Lutes by a window. They all peered through the glass while they tried to talk by cellphone.
The Lutes had met during the 1960s push to put Americans on the moon; both worked at NASA’s Jet Propulsion Laboratory. They were inseparable, even at the end. She died Dec. 11 in the facility, her husband five days later, the pandemic still ongoing. Tim and Cathy Chambless were allowed to visit them in their room before they died — dressed in full personal protective gear and speaking through facial shields. They were lying in bed together, calling each other “Babe,” Chambless said.
Even under those circumstances, “Meeting face to face was far more intimate and meaningful than talking through a glass window while holding cellphones,” Chambless said. After their deaths, he found among their possessions a note George had written to Nita that indicated they had “lived a good life together and would depart this world together.”
The Lutes were also lucky because they were together in assisted living. Many of their neighbors had lost their spouses before the pandemic and were even more isolated.
Congresswoman Tenney called removing access to loved ones “an absolute injustice,” that forced many seniors to suffer in isolation. She earlier proposed a bill specific to the COVID-19 crisis, but then opted for legislation aimed at public health emergencies in general.
Twenty states are at various stages of considering similar statewide measures, and Texas and Arkansas are among those that have passed one. The bipartisan bill in Congress, if passed, would apply nationwide.
According to “the Essential Caregiver Movement,” which has chapters in 18 states so far, the fight is not just for the rights of the elderly, but for those of any age living in congregate facilities.
The group says since 1987, a Nursing Home Bill of Rights has promised residents they can have visitors, make care choices and use their own property. It promises them freedom from abuse and neglect and access to medical, psychological and social care, among other things. Bill proponents note outside visitors who advocate on their behalf are essential to ensuring those rights. The restrictions, they say, are a “direct violation” of those rights.
Advocates say the push to ensure access has momentum. Bill co-sponsor Tenney has been gathering stories of families who have a loved one they couldn’t see in long-term care. She’s posting some on her Facebook page and plans to read some on the House floor. Wednesday morning, she and Larson plan a press conference on the Capitol steps, then will host a roundtable in the afternoon. Families and advocacy groups nationwide are holding rallies and letter-writing campaigns. Groups have sprung up using the website WeAreNotVisitors.com, among others. Some of the groups’ leaders, who have been “fighting shoulder to shoulder for months,” will meet for the first time on the Capitol steps, Cook said.
Facility compliance would be overseen by the U.S. Department of Health and Human Services. If a facility denied access, it would have to justify it in writing within 24 hours. The department would have to create a “process to adjudicate all complaints in a timely manner.”
The bill has been referred to the House Energy and Commerce and Ways and Means committees.
A national membership group representing more than 14,000 long-term care and assisted-living facilities told the Deseret News it supports the bill.
“We applaud this bill, as the engagement of loved ones are critical to the wellbeing of our residents,” wrote the American Health Care Association/National Center for Assisted Living by email. “Many states have developed Essential Caregiver programs to help bring additional comfort and aid to residents, amidst the enormous challenges exacerbated by the pandemic. We welcome and support family members and friends taking an active role in the care of their loved ones.”
The group also emphasized the importance of appropriate training and following facility procedures during a public health crisis, calling it “critical” for anyone providing care in a facility.
As for Von Ronne, Cook says a new social worker assigned to him started letting them see him some via video conference on her cellphone. They were so grateful, but it’s not the same as being there, she said. And in dementia care units, residents sometimes are injured by other residents. Von Ronne had his clothes stolen and has twice been physically assaulted. When he came home for 24 hours at Christmas, he had an unexplained and unreported black eye, Cook said.
She lives far away and most of the day-to-day personal battle for her dad belongs to other relatives, including her mom. “I can’t save my dad,” she said simply. Instead, she’s fighting to ensure that what he’s lived through means something by pushing for change and more access for all families.
Cook said advocates expect some opposition. Some facilities may balk at having to provide personal protective equipment for essential caregivers so they can comply with the need to take the same precautions as staff. It’s not clear who will pay for testing if it’s needed.
Regardless, she’s hoping that some of the humanity that was “scraped away” will be restored.