Could the U.S. force treatment on mentally ill people (again)? : Planet Money : NPR


National Archives and Records Administration/National Building Museum

National Archives and Records Administration/National Building Museum

One of the most difficult and expensive questions that a society faces is how to care for those who cannot care for themselves, and how to pay for it. Over the last century, the United States has radically changed how it answers this question when it comes to treating people with severe mental illnesses. Now we appear to be on the brink of another major change.

In the mid-to-late 20th century, America closed most of the country’s mental hospitals. The policy has come to be known as deinstitutionalization. Today, it’s increasingly blamed for the tragedy that thousands of mentally ill people sleep on our city streets. Wherever you may stand in that debate, the reform began with good intentions and arguably could have gone much differently with more funding.

In October 1963, just weeks before he was assassinated, President John F. Kennedy signed into law landmark legislation that aimed to transform mental healthcare in the United States.

For decades, the United States had locked away people deemed to be mentally ill in asylums. At their height, in 1955, these state-run psychiatric hospitals institutionalized a staggering 558,922 Americans.

Investigative journalists, government officials, and heartbreaking books like 1962’s One Flew Over The Cuckoo’s Nest exposed Americans to the horrors of the asylum system and sparked a movement for reform. Meanwhile, new pharmaceuticals like chlorpromazine (also known as Thorazine) burst onto the scene, holding the promise to treat people with mental afflictions without the need for around-the-clock supervision. The asylum system was a massive cost to taxpayers, which helped reformers unite with fiscal conservatives to build a coalition for change.

For President Kennedy, the movement to reform mental healthcare was personal. His younger sister, Rosemary Kennedy, had been born with intellectual disabilities — and her treatment is illustrative of some of the horrors of the asylum era. Kennedy’s parents had spent years sending Rosemary to special clinics and allowing doctors to subject her to experiments, like injecting her full of hormones as an adolescent. In 1941, surgeons convinced the Kennedy patriarch, Joseph Kennedy, of the need for a newfangled medical procedure: a lobotomy. The procedure involved cutting out part of Rosemary’s brain.

Rosemary’s surgery went terribly wrong (even for a lobotomy, which is now a medically suspect and extremely rare procedure). The surgeons removed too much of her frontal lobe. In an instant Rosemary became completely disabled, losing the ability to talk, walk, and control her bodily functions. Fearing embarrassment for his ambitious family, Joe Kennedy had his daughter institutionalized — and he kept his family and the public in the dark about what had really happened to her. It wasn’t until 1958 when then-Senator John Kennedy tracked down his sister and secretly paid her a visit. He was shocked by what he found.

Like his sister, Eunice Kennedy Shriver, who would go on to found the Special Olympics, President Kennedy was inspired by his sister to fight for a better future for people with mental disabilities. And so, in 1963, he signed into law the Community Mental Health Act. The bill provided funding for research into mental disabilities and, more importantly, sought to dismantle the sprawling asylum system. It was the last bill Kennedy would sign into law.

“Under this legislation, custodial mental institutions will be replaced by therapeutic centers,” President Kennedy said when he signed the bill into law. “It should be possible, within a decade of two, to reduce the number of patients in mental institutions by 50% or more.” In fact, due to this law and other policy changes, by the 2000s, the number of people in asylums would end up plummeting over 90%.

Meanwhile, supporters of civil rights for mentally ill folks won a string of victories in state legislatures and the courts that made it harder to detain and medicate people against their will.

Rather than locking them away in state-run psychiatric hospitals, Kennedy and other reformers hoped to give people with mental illnesses the freedom to live in their communities and receive care from local organizations. However, the Community Mental Health Act failed to provide enough funding for the 1,500 community health centers that lawmakers had initially envisioned. Congress left much of the funding to the states, and, ultimately, only about half of the health centers ended up being built and those that did end up getting created were largely underfunded.

Both in the 1960s as governor of California and in the 1980s as president, Ronald Reagan was an important figure in cutting funding to community health centers. But this was only one part of a broader — and bipartisan — set of actions and inactions that have led to collective neglect for this vulnerable population. One reason may be that people with mental disabilities aren’t exactly a powerful voting bloc.

Today, many of those who would historically be institutionalized in asylums are now instead incarcerated in jail, cycling in and out of emergency rooms, and living on the streets. Nowhere is this more clear than the city of Los Angeles, which has a swelling population of homeless people, many of whom suffer from mental illness.

In a new book titled Sons, Daughters, and Sidewalk Psychotics, UC San Diego sociologist Neil Gong grapples with the system of mental healthcare that Los Angeles has adopted in the wake of the closure of asylums.

“With hindsight, the triumph of deinstitutionalization looks more like a tragic irony: an unlikely coalition of civil libertarian liberals and fiscal conservatives pushed for the destruction of an abusive and neglectful system that had nonetheless housed, fed, and organized the lives of over half a million people,” Gong writes.

A Crisis Within A Crisis

As we’ve covered before in this newsletter, research suggests that the homelessness crisis in states like California is primarily a story about housing supply and demand. There’s not enough housing for folks who need it. Most of the people facing homelessness are not mentally ill.

However, mental illness is a huge predictor of who becomes homeless — and especially of who stays homeless for a long time. Research estimates that over 20% of Americans experiencing homelessness — and a larger percentage of those experiencing long-term homelessness — suffer from severe mental illnesses.

Gong calls the approach that cities like Los Angeles have taken to this problem “tolerant containment.” Basically, the city tolerates things like encampments, bizarre behavior in public, and drug use as long as it’s contained in segregated areas that are mostly out of sight of the majority of city residents.

Whether you’re a progressive or conservative, especially in California, it’s pretty universally accepted that this status quo is not working. It’s both inhumane and also surprisingly expensive. Letting this at-risk population languish on the streets imposes a whole bunch of downstream taxpayer costs like repeat emergency room visits, police work, crisis care, and incarceration — none of which measurably improve the long-term outcomes for this population. The question is: what should we do now?

Many progressives have advocated for a “housing first” solution to the problem of homelessness. Basically, they argue, instead of focusing on getting this at-risk population psychiatric help or rehab, the priority should be getting them into stable housing first and then focusing on providing other services. However, Gong suggests, in Los Angeles and other cities, too often the focus has become what you might call housing only. “Because these public or nonprofit providers are under-resourced and understaffed, it kind of ends there,” Gong says. This policy sometimes can be effective, he says, but sometimes it means “abandoning people to self-destruct.”

A randomized controlled trial conducted in Santa Clara, California, found that providing chronically homeless folks with permanent housing and voluntary supportive services had an 86% success rate in terms of keeping them from returning to living on the streets. This and similar findings by other studies have been hailed by advocates as a slam-dunk validation for the housing first approach to tackling homelessness. But, Gong says, it also suggests there’s still a sizable population — the remaining 14 percent — that need more than just housing and access to what’s currently available to them for services. In a state like California, which has a massive population of chronically unhoused people, an 86% success rate suggests there would still be thousands of people living on the streets.

“I do believe that if we are able to deliver the kind of community-based services that were promised 60 years ago, we could whittle that number down,” Gong says.

However, Gong acknowledges that, even with permanent housing and better quality social and psychiatric services, there would still be some small percentage of folks who would still wind up living on the streets. And for those folks the government, he argues, may need to impose “more assertive or coerced treatment, including even, in some cases, longer-term in-patient care.” In other words, a modern, more humane version of a mental asylum or something similar.

For this population who gets forced treatment, Gong stresses, we really need to be careful. He cites research that this sort of compulsory care can be really traumatizing for patients and even result in a greater risk of suicide. “So one thing we really need to figure out how to do is to make the small amount of forced treatment that we might need better.”

Reinstitutionalization

We’re now at a crossroads where there’s a bipartisan movement for what you might call reinstitutionalization. We’re not going back to the horrors of lobotomies and forced sterilizations of the asylum era, but a growing number of Democrats and Republicans claim that it’s now necessary to use greater force to require treatment for mentally ill folks in the quest to end homelessness.

New York City mayor Eric Adams has for the last couple years pursued a pilot program that gives the police and medical workers the power to involuntarily hospitalize the mentally ill.

Late last year, former president Donald Trump posted a video on his campaign website, remarking, “When I am back in the White House, we will use every tool, lever, and authority to get the homeless off our streets.” He continued: “And for those who are severely mentally ill and deeply disturbed, we will bring them back to mental institutions, where they belong… with the goal of reintegrating them back into society once they are well enough to manage.”

Recently, California voters narrowly passed Proposition 1, which was championed by Governor Gavin Newsom. Groups like the ACLU opposed this ballot measure on the grounds that it would strip funds from community health organizations and “primarily fund forced treatment and institutionalization.”

Neil Gong admits he’s fearful that the pendulum is swinging back to a more draconian and less humane approach to how we treat the mentally ill. “I definitely worry that we’re going to move to this kind of heavy-handed, lock-people-up, get-them-outta-sight-in-the-cheapest-way-possible approach,” Gong says. But, he says, with so much apparent political will to do something about the problem, he maintains hope we can build a better future for some of the most vulnerable people in our society.

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