Break up the nursing homes

How America's long-term care crisis collided with the pandemic, and how to undo it

Thanks for reading Health and Capital, and for bearing with a week of interlude as I worked on a linked research project with Beatrice. This is the second of a series of posts looking at a few institutions in America and how their current operations limit our fundamental ability to hold the pandemic at bay. Today’s is on nursing homes and long-term services and supports more broadly. The first post was on our carceral system and I expect the third to be on schools, though with policies actively shifting as schools reopen across the U.S. this may change. The series is intended to demonstrate how it’s important to understand these institutions as drivers of the pandemic; each a machine for producing new infections. This is a topic we’ve covered frequently on Death Panel; if you like Health and Capital please take a moment to consider becoming a patron of that project.

Image Description: Mid-twentieth century postcard depicting a sanatorium in Davos, Switzerland. Snow-covered building sits at cliff-side flanked by trees in foreground.

In a previous post, I noted that in the United States, 89 out of the top 100 main clusters of COVID-19 outbreak are located in prisons, jails, or correctional facilities. The unfortunate reality is that the majority of the rest of the list—which spans sites linked to infections ranging from 50 to 2,470 linked cases—are in nursing homes or other long-term care facilities, including rehabilitation centers. This means that almost all major clusters of infection are some form of carceral institution (as I will address below).

I want to be sure to state early on that the world of long-term care has a lot of interrelated and potentially confusing-to-differentiate terminology: long-term services and supports, long-term care facilities, nursing homes, etc. To that end for the remainder of this post I’m going to center the broader term “long-term care” as something which incorporates all of these. Most importantly, using the term “long-term care” delineates something very important: that these institutions are, fundamentally, discussed and administered in the United States as separate from the “healthcare” system. If long-term care is something you’ve not directly engaged with before, think of the absurdity of how the United States and some other countries separate Dental and Vision from what health finance programs consider as “healthcare”—same idea. This absurdity, that long-term care is considered as separate from healthcare, is so engrained that it wasn’t even until February of 2019 that coverage of long-term care was incorporated into a major federal single payer program (the Pramila Jayapal-advanced Medicare for All Act of 2019).

There’s much more to say on the importance of long-term care as centered in health justice, decarceration, and abolition. There is a profound unmet need in long-term care and it should be centered in left political projects in a way that it currently is not. But this post is about how the United States’ failure to address long-term care in recent decades has manifested directly in an exacerbation of the coronavirus pandemic and depression. It is also about what we can do about it.

That nursing homes have been particularly vulnerable to outbreaks of COVID-19 is not news. The first reported outbreak of coronavirus in the United States happened in a skilled nursing facility in Washington state, and as of this writing 40% of U.S. coronavirus deaths have been linked to nursing homes. (Note that while I suspect this plays into the assumption that the dead are predominantly those with underlying conditions, “linked to” is important here. Cases in nursing homes spread to the public at large just as they do in other institutions, and many of the dead are healthcare workers).

These statistics and the frequency of headlines about outbreaks in nursing homes and other sites centered around long-term care should result in much more public outcry than they have. This may reflect how U.S. policy already critically undervalues the lives and health of people who need long-term care, and how the state has repeatedly failed to address this in a meaningful way. While one might look at the susceptibility of nursing homes to the pandemic as some kind of self-evident fact, much of it actually has to do with how we fund and allocate long-term care in the United States, and the factors that make institutions like nursing homes so prevalent to begin with. With outlets that center mainstream health and public health discourse like Health Affairs beginning to run pieces that ask “Will the COVID-19 nursing home tragedies lead to real reform?” it’s important to articulate just what such reforms have to undo.

Financing long-term care

Long-term care is persistently looked at by the American state as some kind of impossible problem to solve, largely because it maps perfectly to the state’s own self-reproduced budgetary fears. To understand what this means, it’s important to understand what the term “health finance” means as abstracted from other catchalls like “healthcare” or “insurance.” Health finance refers explicitly to the provision of payment for healthcare. In that sense, a program like federal universal single payer, Medicare for All, is essentially a health finance reform: Medicare for All proposes that we shift who pays for healthcare from the tangled mess we have now to being solely the responsibility of the state. The reason the aforementioned inclusion of long-term care into the Medicare for All Act of 2019 was such an important step is because for the first time it was clearly stated that long-term care would be part of this. Rather than the egregiously expensive cost of necessary care for people who need long-term care (not just seniors, but many people with disabilities), the state would assume payment.

Paying for long-term care is only one part of the issue here, but it’s such an important one that I’m going to foreground it in this post. It will come to no one’s surprise that long-term care is expensive. Despite this it does seem to come as a surprise, even to some single payer advocates, that long-term care is not already largely covered by the state, or by insurance companies.

The two main ways that long-term care is financed in the United States (outside of those who pay fully out-of-pocket) are through long-term care insurance and through Medicaid. Each of these have extreme problems that end up driving too many people into institutions like nursing homes, rather than being able to stay in their own homes or communities.

Imagine how much you hate your health insurance company. (If you don’t have health insurance, imagine how much you hate not having health insurance, or the idea of health insurance at all). However bad your health insurance is, long-term care insurance is worse. Unfortunately, this makes sense. Health insurance itself operates, as anyone who has vaguely followed the fight over the Affordable Care Act will know, by pooling insurance payments from plan members so that cost of care is theoretically dispersed between a lot of people who will need inexpensive care, and some who will need expensive care. The difference between the amount taken in and the amount the insurer has to pay out to providers and others is how insurers make their profit. This is why health insurance companies have posted such massive profits in the early days of the pandemic: people still have to pay their premiums, but aren’t using their insurance as often, even if they still need care, and even though this will lead to much worse health outcomes in the aggregate (for more on this see this study on the downstream health effects of the Great Recession).

[Image Description: Screenshot of news story in Axios, reading “UnitedHealth posts most profitable quarter in its history”]

Long-term care insurance is notoriously stingy with payment and expensive for precisely the same reasons. It’s not profitable to insure a “high risk pool” filled almost exclusively with people who are likely to rely on long-term care insurance to finance an indeterminate amount of years of long-term care. To deal with this, the few companies that offer long-term care insurance will frequently change rates, and usually offer packages that limit the amount of days of long-term care the insurer will finance.

Instead of being viewed as a moral travesty and, at bare minimum, a federal responsibility, this is unfortunately usually shrugged off in the press. My favorite example of this is a piece from 2019 in the New York Times, which consulted the director of a financial advisory firm on how individuals can take personal responsibility for getting the most out of their long-term care insurance. They printed the following advice, in an article titled “Your Long-Term Care Insurance Rate Spiked. Now What?”:

Insurers generally provide policyholders with several options in between accepting a full rate increase and canceling the policy.

But many people won’t be able to absorb the full increase, so cutting benefits may be the next best option. That can include reducing the period for which the policy pays benefits, the daily amount of the benefit, and the inflation rate at which the daily benefit grows.

Mr. Kitces suggests considering the cuts in a certain order. If your policy pays benefits for more than five years, consider shaving that back first, since few people need it that long, he said. [emphasis added]

Medicaid has its own issues. In addition to the extreme state of financial distress people have to be in to qualify (as I have written about before), many states have onerous limits on the amount of care they’ll pay for, even for people who desperately need it. For me this is best exemplified by actor and comedian Steve Way’s ongoing fight with Horizon NJ Health, a private insurance company that manages New Jersey Medicaid plans, on which it is worth reproducing his entire account:

For over 900 days, I have been in a nonstop fight with Horizon NJ Health to get more personal care assistance (PCA) hours. After months and months of being stonewalled, lied to, and denied every step of the way, I exercised my right to take Horizon to court. It was there I learned that going to court is nothing like how it is in movies, and the harsh reality that based on Horizon’s standards, I’m not disabled enough to live.

I need PCA hours because simply being alone could kill me. My type of Muscular Dystrophy leaves me unable to feed, bathe, or dress myself. I need help going to the bathroom, getting in and out of bed, and countless other things non-disabled people take for granted. Even worse, I have trouble swallowing and I am at high risk of aspirating on my own spit if not for assistance. My parents’ bodies are starting to break more than mine and my girlfriend works all day long. To ensure my safety and wellbeing, I need 84 PCA hours a week, or 12 per day (I currently have 60, but my life doesn’t stop on the weekends). Even when presented with all that information, Horizon NJ Health says their hands are tied.

You may now be asking, ‘uhh…how?’ PCA hours are determined by a rubric: a set of guidelines that determines how disabled someone is (this isn’t a joke). Not being able to go to the bathroom by yourself gives you a certain amount of hours, but needing to use a diaper will get you more. Before you ask, no, I’m not going to wear a diaper. If you have a trach you’ll get more hours than someone who uses a non-invasive ventilator like me. Besides this tool, no other external factors are ever considered. Not even, you know, how long you’d be completely alone and have the greatest risk of dying. Also, at no point does the person who determines the allotment of hours ever meet or speak to you. We can’t even FaceTime. In the most dehumanizing fashion, your entire life is reduced to a couple pieces of paper with a rubric created by non-disabled people, who could never fathom my daily struggle for survival.

After years of being lied to about which program would help me, lost or “forgotten” applications, multiple official denials, and 765 days of countless phone calls, letters, assessments, faxes, panic attacks, and listening to terrible hold music, I was finally able to meet with representatives from Horizon NJ Health in court. I explained my case and my circumstances: how I lost two years of my life, how I can’t sleep at night because I fear for my life, and how I’ve lost friends from the same lack of care I’m currently facing. Everyone was in agreement that I need 84 PCA hours per week, but words aren’t going to save my life. In the vast majority of cases like this, the judge will rule in favor of the patient. My judge? She said she doesn’t “have the authority to do anything.” The Horizon representatives reiterated that they had to follow the guidelines, but suggested I apply for at-home nursing care to supplement my PCA hours. I went through the assessment and based on that rubric, I don’t qualify…by 1 “point.” According to Horizon NJ Health’s own rules, I’m not disabled enough.

I always knew the healthcare system was going to fail me, but I never thought the judicial system would too. I’m now on my own, fighting for bare minimum care against a corporation that would rather see me dead than lose a couple bucks. If my parents neglected me like this they would be thrown in jail, but it’s OK for Horizon NJ Health to do it because it’s a “business.” I prefer to call them what they truly are: a death panel.

As awful as this is, the sad truth is that Steve is in at least some ways lucky. Steve lives with family. One of his personal care assistants (PCA) over the years has been a close friend of his, and from spending time with them I can’t say I’ve seen a better rapport between someone and their PCA. But people like Steve face an ongoing threat in their lives that the state will either stop paying for their care outright, or bureaucratically force them into institutionalization. It’s important that we understand that long-term care facilities like nursing homes are not how they appear in the whitewashed imagination of suburban Americana. They are not community centers that mark some natural progression from independence to end-of-life care. They are often locations of last resort, the only way for an individual or family to afford care and remain housed, and represent the individual being denied their right to live in general society. They are carceral institutions.

These factors have driven people into institutionalization, and will pull countless more in without further intervention. And since, as mentioned earlier, this type of care is not particularly profitable, this leads to cut corners and unsafe practices, which are especially lethal in a pandemic. And unfortunately there is no reason to believe that as more people become ill or are forced into poverty over the course of this depression, we will not see a resurgence and exacerbation of the institutionalization of the elderly and the disabled.

As Liat Ben-Moshe says in the excellent Decarcerating Disability: Deinstitutionalization and Prison Abolition:

[I]ncarceration happens not only in prisons but also in other sites of carceral enclosure, such as psychiatric hospitals, detention centers, nursing homes, and residential institutions. Although these sites are different in their rationale (treatment versus and alongside punishment), it is important to discuss them in tandem. As legal scholar Bernard Harcourt suggests, what we now call “mass incarceration” or the rise in incarceration barely reaches the level of institutionalization that the United States experienced at mid-twentieth century. In other words, when the data on mental hospitalization are combined with the data on imprisonment for the period 1928–2000, the highest rate of aggregated institutionalization occurred in 1955, when almost 640 per 100,000 adults over age fifteen were institutionalized in asylums, mental hospitals, and state and federal prisons. … we need to look at all aspects of deinstitutionalization, including the arena of institutions for those labeled as I/DD, which Harcourt and most scholars who discuss deinstitutionalization and decarceration do not mention.

[Image Description: Deleted tweet by Ilhan Omar reading “It’s all about the Benjamins baby [music notes emoji”]

Why?

This brings us back to the original point: that financing long-term care is viewed by the American state as some kind of impossible problem.

The last time anyone tried to meaningfully address this, the results were (unfortunately) hilarious in their conceptual restraint. During the initial fight for the Affordable Care Act, the Obama Administration wanted to change long-term care by passing the CLASS Act (originally Title VIII of the ACA), which would have created a federal long-term care insurance program. According to an HHS memo:

The law was designed to establish a voluntary, national insurance program for American workers to help pay for long-term services and supports they may need in the future. The CLASS program seeks to help enrollees live independently in the community and to give them considerable freedom to determine the necessary services and supports they purchase with their coverage. By statute, CLASS benefits must be funded entirely through enrollee premiums; there is no taxpayer subsidy. [Emphasis added]

To me this is one of the most hilariously self-defeating proposals I have ever seen the contemporary Democratic Party attempt.

As outlined before, long-term care insurance has an absolutely awful business model. Not simply because of how these companies operate, but because in attempting to profit off of long-term care you are essentially trying to squeeze blood from a stone. Because of this, proposing a federal long-term care insurance program that would be expected to pay for itself in member premiums is absolutely absurd. Yet instead of acknowledging the federal government’s ability to appropriate whatever funds it wants to pay for what it wishes—and in so doing, simultaneously improve people’s standard of care and create countless jobs for health workers, with the ability to exercise rate setting and guarantee they pay a living wage—the Democratic Party elected to put forward the CLASS Act.

It obviously failed to happen. But even if it had, it would have been doomed to fail in yet another way. To cite a contemporaneous report in Kaiser Health News:

After looking at a variety of options, the Obama administration determined the CLASS Act program could not simultaneously meet three important criteria: be self-sustaining, financially sound for 75 years and affordable to consumers.

If the benchmark of making the program independently “financially sound” within 75 years sounds vaguely familiar to you, it should. It’s the same principle that was used by Richard Nixon to set up the United States Postal Service to fail, and that has been proposed by the Obama Administration in 2010 and by Mitt Romney in 2020 as a means to cut Social Security. The only thing potentially more absurd than this, then, is Democratic Governor Andrew Cuomo funneling COVID patients into nursing homes and then granting those same institutions broad liability protections against coronavirus-related litigation.

There is a clear answer here. Short of immediately passing Medicare for All and making sure anyone who wants to can be moved from a nursing home into community care, long term care finance should be immediately federalized. Some combination of the government assuming long-term care costs, a federal wage increase for shockingly underpaid home health aides, and a homes guarantee is exactly the kind of emergency measures you would expect out of anything but, say, a failed state.


Thank you for reading Health and Capital. As I mentioned in my introductory post, if you enjoyed this and would like to support my ability to produce future posts, please subscribe, share links to it, tell me what you think, and become a patron of the Death Panel on PatreonDeath Panel is a podcast I co-host with Beatrice Adler-Bolton, Philip Rocco, and Vince Patti, and if you enjoy Health and Capital you will probably enjoy it as well.

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