Ep 10: How Should the Law Support Older Adults?

In recent decades, legal cases have incrementally broadened services for older people and strengthened legal protections against age discrimination. Despite these advancements, our country has a long way to go in extending legal rights to older individuals.

In the tenth and final episode of season 1 of A Question of Care™, Robert Espinoza is joined by Kevin Prindiville, Executive Director of Justice in Aging, a national organization that uses the power of law to fight poverty among older people. They discuss how the legal system should assist older adults with their economic security, health care access, and more.

Robert Espinoza: How did the wealthiest country in the world get to a point where it can't support the health and long-term care needs of more than 54 million older adults? Welcome to A Question of Care™, a podcast that explores the many answers to this question through different viewpoints and topics. I'm your host, Robert Espinoza, a national expert and frequent speaker on aging, long-term care, and the workforce.

In this episode, we'll examine the various ways in which the legal system affects the lives of older adults. Joining us is a nationally recognized expert on Medicare and Medicaid policy and the legal issues facing older people. We are happy to welcome Kevin Prindiville.

Kevin Prindiville: I'm Kevin Prindiville. I'm the Executive Director at Justice in Aging. It's great to be here today.

Robert Espinoza: Founded in 1972, Justice in Aging is a nonprofit organization in the U.S. that advocates for the rights and well-being of low-income older adults.

Kevin Prindiville: We were founded out of the war on poverty. So, at that time, there was a lot of action at the federal level to address growing rates of poverty throughout the country. And part of that effort was to redesign the way that legal services were being provided to low-income communities, and part of that redesign was to add a component that hadn't been there before. That component was referred to then as a “backup center” or “support center.” And so centers were created to focus on particular issues like health law or employment law, and then also particular populations like older adults, youth, women, et cetera.

These support centers were created to help support the local providers of services by providing training on important legal topics so they could better represent their clients and, importantly, provide advocacy support. So, when local legal programs were seeing the same issues impacting clients over and over and over again, they could work with us and other support centers to come up with a system-wide fix.

That led to a bunch of important pieces of litigation at the Supreme Court brought by our organization and many others that were really influential in building the rights of low-income people in the United States. So that's how we started. And that's still true to who we are today and the role that we play today.

There's now a much more robust network of service providers that provide all kinds of assistance to older adults across the country: legal services, social work, and all kinds of support. And we back them up. We help them by training them on the legal rights of their clients. Then, we help them design advocacy campaigns to solve problems that their clients face over and over again.

And we do that through every way that you can change and leverage the law. We work with administrative agencies that run programs to make sure that they're running those programs as the law intended. We work with legislative bodies to pass or amend new laws when needed. Then, we use the courts to force change, mostly around how governments run programs that people rely on.

Robert Espinoza: Kevin, what are some of the most common legal issues that older adults face in today's society?

Kevin Prindiville: Yeah, so that's a great question. And I'm going to go back to our founding. Soon after we were started, there was a legislative effort to pass what's known as the Older Americans Act. This federal law provides funding to state and local entities to provide a wide array of services to older people. And one of those services is legal services.

So, as they were designing the law, they went out into communities and asked older people, have you needed or used a lawyer in the last six months? Most of them said, Nope, why would I need a lawyer? And then the question was reframed: Have you faced an eviction in the last six months or a year? Have you had trouble accessing healthcare in the last six months or a year? Have you had a dispute with an employer in the last six months to a year?

And the answer to those questions came back, Yes. People were struggling with all these problems but didn't realize they were legal issues. And were issues where they would benefit from working with a lawyer. So, we take a pretty expansive view when we think about the legal issues that older adults face; we look at any of the challenges that older adults are facing and how the law is a help or a hindrance to them addressing that issue.

So, health care comes to mind as a huge issue that older people face. Long-term care is a huge issue that older people face. Economic security, whether they have enough money to meet their basic needs, is an issue that has legal elements to it. Housing we increasingly see as a big issue that older adults are struggling with and where legal rights and protections play an important role.

Then there are some areas that you think of as… The first time you think of them, you'd think of them as a legal issue for older people. Guardianship is an increasingly important and difficult legal issue that states and families are struggling with across the country. Age discrimination in the workforce—another big issue that squarely you would think of as an aging issue.

And then there's another category: anything connected to civil rights has tremendous implications for all of us as we age. So, those have been some hot-button, big legal issues in the last several years. LGBTQ rights. Issues around race and racial discrimination. Gender rights. These are all issues that are important to older people because older people own, occupy, and live in all of those identities.

So, any rights that we create, or when we take away rights for communities broadly, are going to affect the older people in those communities and sometimes even more. And certainly, if they live at an intersection of multiple identities and where those rights come into play. I would add in that category, too, that I didn't mention: voting rights as another example of something that applies to everybody and has some unique issues for older people.

So, that was a long-winded answer, but we think of legal issues broadly because the law is really about the rules that set parameters for how we move through society in our lives. And so, for older people, laws in any number of areas are going to impact how they do that. 

Robert Espinoza: You touched on this issue a bit, but we know that older people are incredibly diverse, and with that diversity comes a range of inequities and disparities across various issues. How do the rights of older people differ for older people of color, as one example, or for other marginalized populations? 

Kevin Prindiville: Our work at Justice in Aging, at our founding, was focused on poverty and addressing the needs of low-income older adults, and today, that's still the case.

Our focus is squarely on using the law to alleviate the impact of poverty on people as they change. Then, we do that with a clear focus on these inequities that come with aging and living in systems that often treat people equitably throughout their lifetime. And so, we've worked to both address poverty and advance equity for all of us as we're growing older, and there are tremendous inequities in how people age.

Age is a great equalizer because we all will grow older and face some challenges and decline. The idea that that's a common experience and that that somehow equalizes a lifetime of inequality is not true.

People who are from communities of color, women, LGBTQ, people with disabilities, and immigrants face a variety of systemic barriers throughout their lives that then mean that their aging process is different and inequitable. And more likely to lead to aging into poverty, aging into poor health, aging and having difficulty accessing many of the services that we know that we all need as we grow older.

Food, housing, community support, long-term care, health care. So, there are real disparities, and the law can be a tool for addressing those disparities. If we build systems that are mindful of the needs of those communities first, we're likely to be able to build systems that can serve all of us well. 

Robert Espinoza: I'd love to pick your mind on the legal landscape over the last few decades. What are some of the most important court cases or developments related to older adults in the last 50 years? 

Kevin Prindiville: Yeah. So, it's hard to say over a 50-year period. It goes beyond my time, but certainly, I could identify a few. Going back to our history in the 70s and 80s, there were many important cases that established the rights of low-income people to the support that we provide as a society.

Those were cases that were sometimes brought on behalf of older adults but were often brought on behalf of other communities, but the precedent set in those cases also applies to all of us as we age. So, going way back to cases like Goldberg v. Kelly that established due process rights so that people relying on systems like the Medicaid program for healthcare, it established that they had a right to those services. It was reasonable for them to rely on the idea that those services would be there for them, creating a fundamental structure upon which legal rights have been built since then.

Another case from the past that's still very important today is the Olmstead case. This case is often thought of as a disability rights case but is really important to older adults. It found that people who have long-term care needs have a right to receive services to meet that need in the least restrictive setting. So, whereas those services used to be provided almost exclusively in nursing homes and institutions, Olmstead created a right to receive those services at home and in the community, services that are less restrictive than those institutions. Again, that case was thought of as a disability rights case, but it really applies increasingly to older people who are aging with disabilities and need that support. [It has] now provided a framework for all of us to build and advocate for a system that supports more people at home.

And then, more recently, I think of some of the important civil rights cases that have been part of our nation's history. I think one shining positive example would be the Obergefell case, from several years ago now, which established a right to marriage for all people, particularly for LGBTQ communities. That has a tremendous impact on the economic security of older adults. We know that being married confers tremendous economic advantage. And so having not had that opportunity until just recently was a driver of LGBTQ people aging into poverty, and now having that equitable access to marriage and the economic benefits that come with it is a huge driver andan important case for older people.

Robert Espinoza: I want to get your thoughts on a few different issues that are facing older people. and I'd like to start with the issues of economic insecurity and poverty. What are the unique challenges that older adults face when experiencing poverty, and how do these challenges differ from those faced by younger people?

Kevin Prindiville: Yeah, there are some important differences. And we see two groups of people living in poverty when they're older. One is people who have lived in poverty for most of their lives. And if you live in poverty for most of your life, work in low-wage jobs, and don't earn enough that it's realistic for you to save, maybe you live a lot of your life in debt because your work is not providing enough income to meet your needs. You know, you're not going to grow older and then suddenly move into middle class or upper class. So that's one group. 

The second group is older people who have middle-class lifestyles when they're working age. But again—because wages until very recently hadn't kept pace with inflation, because of the inequity we've seen and where wages have been distributed across the workforce—they have a middle-class lifestyle while they're working, but they haven't had opportunities to save enough to continue that lifestyle when they grow older.

And, so when they grow older, they experience poverty for the first time. And we're seeing this acutely right now in the homelessness crisis: that the fastest growing portion of the homeless population is older adults. In many areas of the country, older adults, people over 50, represent about half of the homeless population, and about half of those people are becoming homeless for the first time after age 50. So, there's that group in poverty throughout their life, and then there's the group aging into poverty.

The solutions are different for older people than for younger people because building wealth and creating more employment opportunities is less likely to be an option for addressing the poverty that they're living in. Especially when you think about what we might call the “older-old” people in their eighties or older. It's not realistic that we're going to address their economic security by re-education or getting them new jobs. We need to provide different types of services and support.

So, those are some of the things that are unique about poverty for older people and how we need to think differently about how we support them.

Robert Espinoza: You mentioned the issue of healthcare and the challenges that older adults face in terms of healthcare access and outcomes. What legal protections are in place, and what is the general challenge that older people are facing?

Kevin Prindiville: That's an excellent question because one of the things we think of around an issue like healthcare is, well, “Older people are taken care of. When you get older, you qualify for Medicare, and you're set.” It turns out that it's never that simple. Anybody who's been in a position of needing healthcare support when they're older or supporting a family member has seen that coverage is not the end of the process to get access to care. Coverage does not equal care. So we see a lot of issues that come up with people getting what they're entitled to under the Medicare program. And then also for those that also qualify for Medicaid under the Medicaid program. So, lots of legal issues there.

We've been part of work with partners to bring some cases to ensure that people have access to the services that they need; our colleagues at the Center for Medicare Advocacy have led litigation on something called the Medicare Improvement Standard, where people were being denied services because they “weren't improving,” so they couldn't continue to get the services. This was a fiction that was created and doesn't exist in the law. So, we brought litigation, or they brought litigation to challenge that.

We partnered with them on an issue in Medicare called the “observation status,” where hospitals were admitting patients overnight but saying that they actually hadn't been admitted; they were just being observed, and that impacted what services and at what cost people could receive them when they left the hospital. So, there are lots of access issues that come up even when you have coverage.

Another issue we're learning more and more about is age discrimination in the healthcare context. So much of the healthcare system is designed to treat illness and treat all patients sort of the same, and not to see what's unique about the needs of older people. And often to see older people as simply in a state of decline and therefore, to maybe miss what might be an acute health care issue because there's an assumption that the issue the person's coming in with is simply because they're older.

We’re dealing with that right now with a family member who we were noticing some decline in mental capacity, and that everybody, including doctors, assumed was some age-related dementia. But now we've also learned that this person has widespread cancer in their body. We're waiting to see if there may be cancer in the brain and that that might have been what was causing some of the changes we saw in that diminished capacity. If she was younger, that's probably one of the first things they would have looked for. Since she was older, they were assuming decline was related to age and treating her from an ageist perspective in thinking about what could be causing the symptoms. So, those are some of the things that we're seeing.

And then, the last thing too is that even with Medicare, there are so many things that aren't covered. There are so many costs in Medicare. It's a wonderful program, but it does cost beneficiaries. So, too many people don't have coverage for what they most need, and that's particularly true for long-term care services.

Robert Espinoza: Are there any strategies or initiatives being implemented at the community or national level to help alleviate poverty among older adults?

Kevin Prindiville: Not as much as there should be and could be. We think it's still an under-told story: just how many older adults are struggling to meet basic needs.

I was looking at data this morning in California, and this matches the national trend: during the pandemic, older adults are actually the group that has seen the greatest increase in poverty rates. There was, of course, for kids, a dramatic decline because of support provided during the pandemic and now a dramatic spike since those supports have come off. But that's also true for older people. So, the data I saw this morning in California: 15 percent of older adults are now living in poverty, whereas just 13 percent of people aged 18 to 64 are living in poverty.

And people don't understand that that's what's happening. People think that once you've got Medicare, once you've got Social Security, that you're set. But the Social Security benefit is a wonderful program that lifts lots of people out of poverty but also pretty modest given the cost of living increases that we've seen across the country in the last several years but even the decades prior. So, a lot of older adults are struggling.

We are working with partners to increase and expand the Social Security program, particularly with an eye toward middle-income and lower-income people. What can we do to lift the minimum benefit in that program so that more people are brought up to a level where they can meet their basic needs? Social Security has always been the world's most effective anti-poverty program, and we can leverage it even more by targeting support to the people that need it most.

And then continuing to build out a robust healthcare system because that is a major cost driver that weakens the economic security of older people. So, how can we build a better, more efficient, more consumer-friendly, less medicalized system to provide the full array of support that people need to live in the community?

Robert Espinoza: I'd like to shift our conversation to solutions and possibilities to improve a lot of these challenges that you've described. Are there any recent policy developments that give you hope regarding the legal power of older adults?

Kevin Prindiville: I think the thing that gives me the most hope is the action we've seen to strengthen protections for older adults in nursing facilities where, during COVID, there was just tragedy after tragedy for the people living in those facilities, the people working in those facilities, and the families that support them.

So, we've seen some strong federal action to try to increase staff ratios in nursing homes, increase transparency of nursing home ownership, and increase rights and protections for folks in nursing homes. We're also seeing a lot of resistance to all those things because they cost, so the nursing home industry is pushing back on many of those proposals.

I've also been heartened by a tremendous increase in understanding of the care that we all need as we grow older and throughout our lives. And the care that we need sometimes and the care that we provide sometimes. And the conversation about care and the way that it's bringing together, the needs of older people, people with disabilities, parents that are caring for kids. I think that's very positive and resulted in some great policy changes.

Again, during COVID, there was an increase in federal funding to support home care programs for older adults and people with disabilities so that more of them could stay out of those nursing facilities and instead get the care and support they need at home.

A lot of money went out to states. A lot of states innovated by creating new policies and programs to strengthen the workforce, increase access to services, and reach new populations with those services. So, there's work to do to keep that momentum moving and then to try to build to more transformative change, but those have been some positive policies in the last couple of years that give me hope.

Robert Espinoza: Let me ask you one last question. If you had a magic wand, what are one or two laws you would put in place to improve support for older adults? 

Kevin Prindiville: Yeah, yeah. So, do you have the wand there? Are you ready to hand it over? So, one I mentioned a minute ago is that we would expand the Social Security program so that the basic benefit is higher and should be high enough that you can support yourself and meet your basic needs. People think that's what it does today, and it doesn't. It's far below that. So, we would lift that minimum benefit so that no older adult is living in poverty [and] that we've got people covered. They've contributed throughout their lives; we should have them when they're ready to leave the workforce. So, that's one. 

The second is when people need that long-term care I've referred to a few times, the system forces them to receive that care in nursing homes and institutions. The federal Medicaid law creates a right to receive the services in a nursing home, but there's no similar right to choose to receive those services at home and in the community. We call this the institutional bias. And it's baked into the law.

So, if there were a law that I could change there, it would be to end the institutional bias in Medicaid. And to say, when you have a long-term care need and are in an economic situation where you need the support of Medicaid to pay for those services, it's your choice; you can choose where you get them. If you want them in a nursing facility or you want them at home and in your community, you can choose. We're not going to push you into one of the other because of the way that we've structured the funding and the laws around the programs. 

Robert Espinoza: Legal rights are at the core of civil society. In the ideal, they help regulate our country, protect people against abuse and unfair treatment, and ensure that services are delivered appropriately. In actuality, designing and maintaining these legal rights has been a perpetual struggle, as evidenced by the civil rights movement, which has made so much progress yet continues to face hurdles. It seems that with every step forward, we take a few steps back.

As Kevin described in this episode, older people need the law to protect them from discrimination in employment, housing, and other spheres. And they need it to fund and regulate a wide range of services that will help them age with dignity and independence—though that promise also remains unfulfilled. It's one of the reasons his group and others like it exist.

Law and culture also go hand in hand. The law can denote what a culture believes and values. And when it fails to deliver equal treatment and services, the law can help influence a new way of thinking. However, what happens when a law is ahead of its time and our culture needs more time to accept certain legal decisions? In contrast, what happens when a law is enacted after years of public debate? How do we make sense of all those people who were punished in that time frame because society wasn't ready to accept a modern way of thinking?

I ended the first season of A Question of Care with this episode because it unites the law and our culture. As advocates like Kevin help strengthen the legal power of older adults, this podcast will hopefully change a few minds along the way. It's up to you, our listeners, to amplify these messages. Please share this podcast with your friends and help us reach as many people as possible. 

Thank you to my guest, Kevin Prindiville, and our listeners for tuning into our first season of A Question of Care. This podcast was produced by me, Robert Espinoza, in partnership with Modry Media. Please make sure to rate and review the podcast wherever you're listening.