America’s Assisted Living Residents Are Falling Through the Cracks of COVID-19 Response, Families Say

On May 7, Craig Martin sent what would be the first of many emails to administrators at the company that runs The Wellington at Lake Manassas, his mother’s assisted living facility in Gainesville, Va. Another resident had tested positive for COVID-19 days earlier while being treated at a local hospital, and Martin and his brother were getting nervous. In their eyes, The Wellington was relying on measures, like social distancing and monitoring residents for symptoms, that were designed to keep the virus out—when the virus was already inside.

In his email, Martin urged administrators to test residents “early and often,” even if they weren’t showing symptoms. “We just want to be sure that Wellington is doing all that it can to prevent a massive outbreak and additionally ensure that our mother is not infected,” Martin wrote.

By May 11, his 81-year-old mother had tested positive for COVID-19. She’d developed a fever and gastrointestinal distress, so Martin and his brother called her physician outside the facility, who requested a coronavirus test for her. Though her condition is stable as of May 27, Martin says he fears the worst.

“What’s infuriating,” Martin says, “is I think it could have been avoided.”

The realities of assisted living

Families like Martin’s are learning a hard truth. Assisted living facilities, home to about 800,000 older Americans, have been largely overlooked in coronavirus-relief efforts, leaving many facilities underregulated, understaffed and underfunded. As a result, families and caregivers say, their residents are “falling through the cracks.”

Assisted living facilities struggled with safety, funding and staffing issues well before COVID-19 hit. They’re set up mainly to provide domestic support to seniors, as opposed to nursing homes, which can perform a higher level of medical care; they’re also less likely to be covered by Medicaid or Medicare than nursing homes. Accordingly, assisted living facilities are not subject to as many federal regulations as nursing homes.

Nursing homes—which themselves have a spotty safety record—have become a high priority for lawmakers and public-health officials during the pandemic, following several devastating coronavirus clusters in long-term care facilities. Roughly 42% of U.S. coronavirus deaths have occurred in nursing homes and assisted living facilities, according to a May 22 analysis from the Foundation for Research on Equal Opportunity.

As a result, about a dozen states have taken steps to support, and in some cases even mandate, universal coronavirus testing for nursing home residents and employees, and the Centers for Medicare and Medicaid Services (CMS) called universal testing a prerequisite for nursing homes thinking of easing disease-containment restrictions.

Nursing homes have a long way to go, and many are still struggling to get access to the tests they need—but assisted living facilities are even further behind. Many of the policies on the books for nursing homes don’t apply to assisted living facilities, meaning many facilities have no legal requirement to carry out precautions like wide-scale testing, and few resources even if they want to do so. The Department of Health and Human Services has so far earmarked at least $4.9 billion in aid funding for skilled nursing facilities, but none for assisted living.

“We are asking for additional consideration for all long term care facilities, whether it be in regard to additional testing, personal protective equipment, or funding,” the American Health Care Association and National Center for Assisted Living said in a May 22 statement.

As Massachusetts Senator Elizabeth Warren noted at a May 21 Senate Special Committee on Aging hearing, assisted living facilities are also not subject to the same reporting requirements as nursing homes, which must notify residents, their families and the Centers for Disease Control and Prevention when they confirm a COVID-19 case on their premises. “Assisted living facility residents and their families deserve to know whether their facilities are experiencing a coronavirus outbreak, just like nursing home residents,” Warren said, adding that she and colleagues in the Senate are launching an investigation into America’s assisted living facilities.

“Falling through the cracks”

That focus is long overdue, families say. “I understand the focus on nursing homes, but I feel like assisted living facilities haven’t gotten as much attention,” says Craig Crawford, a 62-year-old living in Washington, D.C., whose 93-year-old father lives in a Florida assisted living facility. “Assisted living facilities have been kind of the orphans in this process.”

Without state assistance, Crawford’s father’s facility was so desperate for help securing supplies like tests and personal protective equipment (PPE) that it urged family members to call Florida’s elected officials, he says. On the same day Crawford called the office of Val Demings, the Democratic Representative for Florida’s 10th district, the facility announced it had gotten PPE and access to tests, Crawford says.

Other families have had a tougher road.

When Martin first contacted staff at The Wellington’s parent company, Retirement Unlimited, Inc. (RUI), he claims they told him they had no obligation to test all residents since they ran an assisted living facility, not a nursing home. “It’s the same demographic,” Martin says. “The virus doesn’t care [where] it’s going to spread.”

When Martin raised his concerns with the company’s executive vice president of clinical services, he was allegedly told it wasn’t feasible to test all staff members, because doing so could create staffing shortages if employees tested positive and needed to be quarantined.

“At that point I knew his goal was very different than mine,” Martin says. “He saw having a staffing concern as a bigger problem than a global pandemic ravaging through his assisted living facility.”

A spokesperson for RUI said The Wellington is following guidance from the U.S. Centers for Disease Control and Prevention (CDC) and its local health department, and noted that there are “many and varied reasons why universal testing may or may not be prescribed by the Department of Health.” The spokesperson said the facility has implemented precautions including restricting visitors and resident trips in and out of the facility, enforcing social distancing, doing extra cleaning, monitoring residents and staff members for symptoms and requiring employees to wear PPE—though Martin says he and his brother have seen staffers flouting that rule during video chats and socially distant visits.

The Wellington tested all residents within its memory care unit, where Martin’s mother lives, for COVID-19 on May 14, the spokesperson says, but Martin continues to push for testing for all residents and staff members.

One man, who asked to remain anonymous to avoid possible negative consequences for his father’s care, had a similar experience with his dad’s facility: Brookdale Senior Living in Arlington, Va. The roughly 120-person facility has suffered multiple deaths and more than 30 COVID-19 cases, but for weeks refused to test any residents who were not showing symptoms, even when questioned by family members on weekly video calls with the facility’s administrators, the man says.

His father finally got a test on May 18 and results came back negative, but the man says Brookdale still has no plan for consistent testing moving forward.

A spokesperson for Brookdale says the facility is following state and local public-health guidance, and performed universal testing as soon as it had the resources to do so. “As soon as community-wide testing for assisted living communities was available in Virginia, Brookdale Arlington worked with the National Guard, who was charged with overseeing such testing, to ensure the residents and associates of the community were tested,” the spokesperson said.

The Brookdale representative said case and fatality counts are shared with residents, their families and health authorities, but cannot be disclosed externally.

The whole experience, the resident’s son says, has made him painfully aware that his father’s facility was not ready for a disease outbreak.

“You start recognizing what ‘assisted living’ is,” he says. “I refer to them as motels, basically. But they present themselves as health care facilities.”

An industry begging for help

Kayla Van Rossum, who directs an assisted living facility outside Phoenix, Az., says it’s more complicated than that. She says she’s desperate for testing and PPE, but isn’t getting what she needs from the state government. When it came time to designate essential businesses during the pandemic, Arizona declared long-term care facilities necessary for “human services”—but Van Rossum says Arizona hasn’t offered the support and resources she needs to function like an essential service during the crisis.

So far, at least one of Van Rossum’s 70 residents has gotten seriously ill with COVID-19, and two of her 70 staff members have tested positive and been quarantined. And just down the road, a similar facility lost 30 of its residents when the virus started spreading inside, Van Rossum says—a constant reminder of how much could go wrong for hers.

“It’s horrible and absolutely heartbreaking because we don’t have what we need,” she says.

Other assisted living directors are also speaking out. The CEO of Sunrise Senior Living, a national chain of long-term care facilities, is coordinating a letter-writing campaign to Congress, asking for federal funding to help with testing, PPE acquisition and other coronavirus-related necessities.

But for many families, the damage has already been done. The Brookdale resident’s son says he was never happy knowing his father was in an assisted living facility—it’s an area of contention within his family—but he’s now become even more disillusioned with the system.

“I think assisted living is an oversold product,” he says. “It basically is our laziness in dealing with aging care in our country.”

But people like Martin continue to fight for better testing and disease-control practices in his mother’s facility, even as she lies sick with COVID-19, in hopes of securing a safer future.

“It might be too late for mom,” Martin says. “But if my experience can help others, that could be of value—I hope.”