The Hidden Rules Behind Long-Term Care in America

In the early days of the COVID-19 pandemic, when New York City became the epicenter in the United States, the crisis was impossible to ignore. Sirens cut through neighborhoods at all hours. Hospitals overflowed. Fear was constant. And yet, alongside the visible emergency in hospitals, another crisis was unfolding more quietly—across nursing homes, private residences, and long-term care settings where millions of people depend on daily support to live.

That moment revealed something fundamental: long-term care in this country isn’t just under pressure—it’s built on a set of hidden assumptions that shape who gets care, who provides it, and under what conditions. These aren’t always written into law or policy, but they show up everywhere—in how services are delivered, how workers are treated, and how families navigate the system.

I’ve come to think of this as the Caregiving Divide™: a set of interlocking forces that quietly structure the long-term care ecosystem. To understand why so many people struggle to access or provide care—and why the system so often falls short—we have to make those forces visible.

The following is an excerpt from the full article:

In March 2020, when the COVID-19 pandemic exploded, and New York City became its epicenter in the U.S., I was living in a 500-square-foot studio apartment in Brooklyn. My place was evenly situated, miles apart, between two major hospitals, which meant that for the first few months, every half hour or so, an ambulance would blare through our neighborhood, reminding everyone of COVID’s widespread clutches and impending doom.

While this moment in history was characterized by omnipresent death and crisis, it also contained acts of humanity at its best. One evening, a photo depicting a group of Colorado doctors flying to our city to help overwhelmed hospitals went viral. I felt for a short while, as did many, that our better nature would prevail through this crisis as it traversed immune systems and borders without mercy, going first, as always, for the most medically and politically vulnerable.

Two of those populations were nursing home residents, where the virus raged like a machine gun, and direct care workers, who were deemed essential, especially in congregate care settings. They could not imagine abandoning their clients in such a moment, yet they could not place their own families’ lives at risk. The existential fear, emotional burden, and staffing shortages that hospitals were navigating extended—though less visible in telethons or in the news—to long-term care settings.

Unlike doctors and nurses, direct care workers lack portable credentials—a standardized licensing landscape that allows them to carry their skills from one setting to another without retraining—that would have enabled such workers from nearby states like New Jersey and Connecticut to drive 20 minutes to NYC and save lives. Though these workers are as worthy as physicians and nurses, they are grossly undervalued and underpaid. Yet this lack of standardized training requirements and portable credentials blared like any other siren during this time.

This element of the pandemic reflected the deterministic nature of place (or “geographic setting”) in a health and long-term care ecosystem fragmented by location. In this country, your zip code determines how—and even if—you live and work. Ultimately, it determines what level of care you can access. And it leaves a trail of casualties, flailing and dying prematurely or working themselves deeper into poverty and financial ruin. “There’s no place like home,” says Dorothy in The Wonderful Wizard of Oz—for better and for worse.

This excerpt is just one part of a broader exploration of the six dimensions of the Caregiving Divide™—ideas, systems, place, resources, power, and narrative—and how they shape care in America.

To read the full piece in English or Spanish, visit Substack.