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Breaking Down the COVID-19 Crisis in Nursing Homes

AARP's Elaine Ryan talks about the response and what changes need to be made going forward

An empty wheelchair and walker in a hallway

Getty Images/AARP

Mike Ellison:

In one of the most devastating health crises in our nation’s history, nursing home residents and workers have been hit especially hard.

Today, we’ll take a deep dive into the COVID-19 nursing home crisis, exploring how we got here and what the future holds.

Hi, I’m Mike Ellison with An AARP Take on Today.

Mike Ellison:

One hundred and ten thousand. That’s how many nursing home residents and staff have lost their lives to COVID-19.

AARP has been tracking the nursing home crisis with their new COVID-19 Nursing Home Dashboard. It provides four-week snapshots of the virus’ infiltration into nursing homes and impact on nursing home residents and staff. You can take a look at the data state-by-state. It’s not just resident cases and deaths, you can also get insight into facilities’ staff and PPE shortages. The dashboard is available at AARP dot org slash nursing home dashboard and will be updated every month.

While less than one percent of Americans live in long-term care facilities, nearly 40% of COVID-19 deaths have occurred there.

But just how did it get so bad? To get the full picture, we’ll have to go back in time a little, to February 29th, 2020. That’s when Stat broke the news that ‘the new coronavirus’ had surfaced in a long-term care facility outside Seattle.

On March 13, President Trump declared a national emergency, and the Center for Medicare & Medicaid Services sprung into action. They quickly made their recommendations to restrict nearly all visitors from America’s nursing homes.

However, the spread had already been set in motion. By April, the map exploded. 400 long-term care facilities were reporting COVID-19 cases. Reporters had identified more than 36,000 cases and more than 7,000 deaths in nursing homes by then. Facilities were understaffed and staff were underpaid.

Elaine Ryan:

The staff work in these facilities, God bless them, who show up every day to cook and to clean and to care for these individuals. Many of them make $13 an hour, so they don't work in one facility. They work in three or four facilities in a given day, spread the virus if they're asymptomatic.

Mike Ellison:

That’s our guest today, Elaine Ryan, AARP’s Vice-President of State Advocacy and Strategy Integration. She’s devastated by what happened. But just as startling to her is that, with 20,000 coronavirus deaths and counting, America’s nursing homes waged a massive lobbying effort to shield themselves from lawsuits.

And by May, at least 15 states had laws or governors’ orders in place to prevent legal action against these facilities. Without oversight, families could completely lose contact with their loved ones.

Elaine Ryan:

Many of these individuals who live in nursing homes are some of the most vulnerable people in the country, but when the federal government shut down any access to nursing homes, they withdrew any inspection of infection control. They stopped the ombudsman from being able to go into those nursing home facilities. And those people were people which families and residents could call on to say, "Help me," when they shut that down. My only speculation is that they wanted to contain the problem, but not solve the problem. And I think that further isolated population who have died in record numbers in this country.

Mike Ellison:

The immunity orders typically applied to actions that allegedly caused harm or death during the crisis. Nursing homes argued that these measures were necessary because there was no way to control for the many factors could have lead to a resident’s harm.

Critics argued that ‘these immunity bills go farther’ than just protecting nursing home staff, though. They protect bad actors as well. Not to mention, immunity would prevent liability that could arise from inadequately trained or supervised staff.

And now, skipping ahead to our holiday season, we passed the 100,000th nursing home-related death on Thanksgiving. AARP is urging for more transparency from nursing homes, more PPE and testing for staff and residents, and a rejection of further proposals for blanket legal immunity.

Mike Ellion:

In addition to the fear of illness and death, the isolation, the loneliness, not knowing what was going on and what was going to have the next, I can't even imagine. In the documentary, you said that the country's delayed response to shutting down nursing homes was a fundamental disregard of our seniors in this country. Can you say more about that?

Elaine Ryan:

Yes. Early on, we knew that the focus of the federal government was going to be hospitals as people were looking at people entering in emergency rooms and in need of beds and respirators, but the focus was solely on hospitals. And while we were seeing a steady rise in cases in nursing homes, when we were seeing an outrageous number of people losing their lives in nursing homes, we were not seeing the federal government or the state government take action to help people in those nursing homes. And for me, closing the theaters, closing sporting events, closing colleges, but not seeing that congregate care, the way people live in nursing homes are often two or three in a room, the virus would spread quickly, and frankly, people in nursing homes were not even registering as a critical population to help during this crisis.

Mike:

What changes do you hope will occur as a result of the data, the information we have now, and perhaps as a result of the documentary that AARP has produced?

Elaine:

Well, I think that in the near term, our hope is that we can get help to people. Over 50,000 nursing home residents are being infected with COVID-19 every week in this country, 50,000 people a week who are living in nursing homes, so we need to get them help now. We need to get staff support.

Elaine:

And frankly, we need to reform in the long-term the way we deliver care in this country. 90% of people we talked to say they want to live in their own homes or communities for as long as they can. And what we have is a federal policy that gives unlimited funding to institutionalized people and limited funding if you want to get help to stay in your own home. We've got to change things. We need fundamental reforms because frankly, lives depend on it.

Elaine:

And I also just want to note that people of color were hard hit and continue to be hard hit by the COVID virus. But what hasn't been brought to light is that communities of color who live in these nursing homes were five times more likely to die than white residents of nursing homes. And that speaks to me about a fundamental disparity in the quality of care that people receive and we need to call that out and we need to do something to reform those institutions so people can live and age with dignity.

Mike:

Elaine, I'm speechless. I have this list of questions here, but what you're sharing with me is hard to hear, quite honestly. You said something I've never heard. You talked about there's these unlimited funds to institutionalize people or seniors. I wonder, has there ever been a cost analysis done in terms of what it would cause to help people stay on their homes and in their communities versus what it costs to institutionalize people as you put it?

Elaine:

It's such an excellent question. In fact, the scandal is that it's one third the cost to help people stay in their own homes than it is to institutionalize people. Literally we could help three times the people by letting them stay in their own homes than institutionalize them. And what we have in this country is a federal law that was put in place decades ago that basically values institutional care and nursing homes that many of which are corporately owned that fight to retain that kind of incentive. We give them unlimited funding, and we only consider home care as a demonstration project. It's time to flip the script and make sure people can get the support they need at a lower cost in a more dignified way in their own homes and communities. We need to demand that because we know that people who are older and their children are demanding that kind of change.

Mike:

Absolutely. Are there efforts to not just advocate for that, but to change public policy…

Elaine:

Yeah. In fact, some states are ahead of others that started 10 years ago to value home-based care over nursing home care. Some of those states, like Washington state, during this pandemic found that they had fewer deaths to people getting home care than they did, of course, people living in institutional settings. It's safer. It costs less. We can reform these systems. But most of all, what we have to do is change the federal funding structure so that we can create an incentive for home care and end that bias to institutionalize people where they don't want to be.

Mike:

This is the very first time I've really heard this issue framed that way. And it seems that perhaps COVID has illuminated this more. Do you think that the COVID pandemic will be a catalyst for the change that you and others are seeking?

Elaine:

I do. In fact, New Jersey had so many deaths in nursing homes in March and April and May. And what the governor did was commission a report, but even more, the legislature passed more than a dozen bills in a month's time to fundamentally reform their system. We'll be working. Not only did we advocate for those reforms, like better wages for staff, expanded home care, an actual SWAT team in the case of crisis to be able to go in and help people in these nursing homes, but a fundamental long view of expanding home and community-based services and addressing racial disparities where we've seen them cost tens of thousands of lives.

Mike:

Wow. If you wouldn't mind, Elaine, can you explain more about AARP's COVID-19 dashboard and how the data is being collected?

Elaine:

Yes. AARP stepped in to put together our own nursing home dashboard. It's a monthly tool that's released that not only captures the increase in cases by state, but also the numbers of deaths in nursing homes by state, but it also captures things like whether or not staff have personal protective equipment, whether or not they have a staff outbreak of COVID in these facilities. The data is all reported to the federal government and AARP draws down that data and our Public Policy Institute puts together a tool that basically shows where there are increases and where there needs to be action taken to address the outbreak in realtime.

Mike:

That's amazing. What do you think and/or hope the impact of this report and this collection of data will be?

Elaine:

It has to be a call to action. Anybody that takes a look at the total numbers of deaths in this country should be appalled by the lack of leadership in taking on this pandemic, but consider this. 40% of everybody who's died in this country of COVID were people living in nursing homes or working in nursing homes, yet that population makes up less than 1% of the total population of the country. When people say, "We want to address where the problem is," I'll tell you where the problem is. The problem is we've let our most vulnerable citizens who live in these nursing homes perish, and we've got to have a call to action.

Elaine:

And when you take a look at the race and ethnicity of the people in this country who have passed from COVID, we know that African-Americans and Hispanic Latinos are actually three to four times more likely to die than the rest of the population. That's not because their medical conditions are different. That's because of historic racial inequities and we need to do something to acknowledge those disparities exist in this country and to take action by bringing help into these communities in real time to save lives. This isn't a pandemic in the rear view mirror. This is a pandemic that's happening every single day in this country. Lawmakers at the federal level, at the state level have to take action. And AARP is going to be whether it's in congress or in states to get people the help they need.

Mike:

What advice or takeaway could you offer to people after reading this report, after the documentary, after all of the data, information and experience that you have?

Elaine:

Well, I would say first, if you have a loved one in one of these facilities, you need to be their guardian. You need to ask questions. You need to get answers. You need to take action on their behalf. I say don't be shy. Stand up and tout your loved ones in these facilities. If you're considering things like elective surgeries or things that might require hip replacements or some things that we know require rehabilitation after surgeries, we're asking that you also take a look at the record of these facilities. If some of these facilities are low performing during the pandemic, that's no place for you to go to when you're post-operation and going for inpatient rehab. Use it also as a tool. And also if you have the energy, if you have the time and passion, join with AARP in the advocating for reforms in your states and communities. Your voice makes a difference. Collectively, we can make the change.

Mike:

We talk a lot about policy change on this podcast. And one of the things that keeps coming up, it's not even just a matter of a policy shift, but perhaps a cultural shift where obviously within the United States, there seems to be a greater reverence for elders than what we seem to display here in America. And I wonder how much that as much as policy contributes to the atrocities that you've been addressing.

Elaine:

I think you make an excellent point. I think that ageism can be a death sentence in this country. If we decide that people are too old to care about them, then society won't care about them. The irony of all of this, and it's a tragic one, and that is that we can spend as taxpayers through our own funding up to $100,000 a year for people to stay in a nursing home. It's our tax dollars that pay in large measure for the room and board of people living in nursing homes, and yet what goes on in those nursing homes can be very far from our value system.

Elaine:

Why are people out of sight, out of mind? Why don't they have broader access to live in their own homes? Why can't we stand together and honor people as they age with dignity, rather than create an incentive to institutionalize their care? God bless, there are some people with severe disabilities, with severe dementia who may need institutional settings and our commitment needs to be they have to be the highest quality settings, but for other individuals who do not need that kind of institutional care, we need to honor them and their families by helping family caregivers care for their loved ones in their own homes and communities. That is something that we can live with ourselves and honor our elders in a way they deserve to be honored.

Mike:

Thanks to Elaine Ryan for joining us. AARP has a lot of resources to check out on this topic. As we mentioned at the beginning of the episode, there’s a new, frequently updated nursing home dashboard that you can find at AARP dot org slash nursing home dashboard.

Then, there’s AARP’s oral history of this crisis. It covers the four months at the beginning of the pandemic with quotes from the people who were there. Family members of residents, leaders and advocates tell the story in their own words. That’s available at AARP dot org slash caregiving. AARP Bulletin’s December/January issue also features a deep-dive into this topic.

We’ll leave all links in the description.

If you liked this episode, please let us know by emailing us at newspodcast@aarp.org.

Thanks to our news team.

Producers Colby Nelson and Danny Alarcon

Production Assistant Brigid Lowney

Engineer Julio Gonzales

Executive Producer Jason Young

And, of course, my co-hosts Bob Edwards and Wilma Consul.

Become a subscriber on Apple podcasts, Google Play, Stitcher and other apps. Be sure to rate our show as well.

For An AARP Take on Today, I’m Mike Ellison.

In one of the most devastating health crises in our nation’s history, nursing home residents and workers have been hit especially hard. On today's episode, we hear from AARP's Elaine Ryan about the country's response to the COVID-19 crisis in nursing homes and what changes need to be made going forward. 

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