Reimagining Elder Care with the Founder of The CareWorks Project

In a recent podcast, I talk with Robert Espinoza, the founder of The CareWorks Project, about his mission to improve the quality and delivery of long-term care. He points out that our current system was designed at a different time when care was seen as an extension of hospital care. Now, most people are receiving care in their homes and the system needs to be revamped.

Here are some extracts from our conversation:

Risking Old Age: Could you start by explaining your journey to what you’re doing now, which I understand is launching a new project.

Robert Espinoza: I have spent the last 16 years working in the long-term care sector. I began working for a national organization that ran a senior center in New York City. I was interested specifically in how governments should support some of our most marginalized older adults. And then I spent about 10 years leading the think tank side of an organization that focused on improving jobs for direct care workers, the home care workers and nursing assistants who support millions of older people and people with disabilities in various settings.

As part of that work, I learned that the long-term care crisis is affecting millions of people. Whether you’re a family caregiver, a person receiving care, a direct care worker, or an employer, you’re seeing a growing need for long-term care in various settings, and a society that isn’t able to deliver it with quality.

So I developed a civic enterprise called The CareWorks Project that’s aimed at reimagining solutions in long-term care and answering some of these questions:

• How do we work with leaders in the public and private sectors to reimagine how we talk about caregiving?
• How do we develop initiatives and programs that better support workers and care recipients and employers?
• How do we work with foundations and impact investors and the business community to make sure that our care economy is as strong as possible, and that whatever they’re contributing to this broad set of issues resonates with what society is dealing with today.

One of our core premises is that the [current] system isn’t working. We see this any time we need care for ourselves or our loved ones. But it was also designed in a very different time. When you look back at the early 20th century, it was seen as an extension of hospitals. People designing that system couldn’t imagine the demographic growth of older adults, much less the diversity of issues we’re seeing in today’s economy.

Nursing homes in many cases still retain that aesthetic of a hospital. And it’s not what people want…For people who still need 24-hour skilled care, for whom the best option might still be a nursing home, they certainly don’t want to live in a setting that looks like a hospital and treats them like a patient.

Our goal is to move…toward a more person-centered, humane reality so that people feel like they’re living at home regardless of where they’re living, and that the care they receive, whether it’s from a direct care worker or a family caregiver, is the highest of quality and that it really respects the independence, the dignity, and the quirks and personal traits that we all have.

ROA: So how do you balance the ideal and the cost? I’m not sure if “irony” is the right word but, on one hand, direct care workers are not paid very well and don’t have great benefits. On the other hand, they’re really expensive for families to pay for and most families can’t afford to do so for very long. How do you deal with the cost and the ideal?

Espinoza: The cost is probably the biggest issue facing the long-term care system…many people in this country cannot afford more than one or two years on any end of the spectrum [home care to institutional], what you’re dealing with is really a disaster.

The most commonly cited estimate [from the Congressional Research Service] is that the U.S. spent about $564 billion on long-term services and supports in 2023. That’s an incredible amount of money. It’s also an incredible part of our economy. And we don’t think about long-term care as being both a contributor to the economy and…an expense.

And what that figure doesn’t account for are all the unpaid costs. It is emotionally and financially expensive for a family member to provide unpaid care to a loved one. You often see, for example, women leave their jobs or cut their hours in order to care for a [family member].

ROA: The need for care is going to double over the next couple decades as baby boomers age. What can we do to prepare?

Espinoza: Absolutely. We’re going from a crisis to a catastrophe unless states and our federal government invest strongly in the long-term care system.

I want to be hopeful. I also want people to feel like there’s a way in which we can all play a part in making sure that the long-term care system is properly resourced and designed.

In addition to seeing a rapidly growing demographic of older adults, we’re also seeing care become more complex and acute. We’re seeing, for example, a rise in the rates of Alzheimer’s. We’re seeing a rise in long COVID cases. We’re seeing more cardiovascular disease and diabetes. If our care system isn’t properly resourced or our workforce isn’t properly trained to support people with such needs, then those of us who develop them — and many of us will — are not going to get the support we need.

There’s also a crisis in the number of job openings in direct care, jobs like home care workers and nursing assistants and residential care aides. These jobs are super critical for people who rely on that support, yet they are often poverty level jobs, and turnover rates hover between 60% and 100%, often within the first 90 days. They leave for modestly better paying jobs in retail or fast food. The public and the private sector need to create jobs that are salaried with training and advancement opportunities widely available, so they are something that workers want, not just paychecks and ways onto other jobs.

Listen to our entire conversation here.

For more from Harry Margolis, check out his Risking Old Age in America blog and podcast.  He also answers consumer estate planning questions at AskHarry.info.  To stay current on the Squared Away blog, join our free email list.