NYAPRS Note: The following article well describes a long brewing conflict between those who would rebuild hospitals to address the needs of people with the most extensive mental health conditions and those who would provide a broad continuum of health and recovery promoting services to help people avoid institutionalization. Proponents for reopening asylums point to the failure of deinstitutionalization…but the failure didn’t lay in the services themselves but in federal and state government’s failure to provide enough of them.
We now know how to engage and support people who struggle with the most challenging conditions and circumstances. The question lies in whether our policy makers and public are willing to fund them.
Here’s an apt response in a letter to the Times offered by Dr. Ralph Aquila, Medical Director of one of the world’s first and most prominent community rehabilitation centers, Fountain House as well as its pioneering Sidney R. Baer Jr. Center.
“As debate brews about whether asylums should be reopened and psychiatric beds increased, “Trump Wants More Asylums — and Some Psychiatrists Agree” (The New York Times, March 5) there is very little, if any, conversation about the role people with mental illness are capable of playing in their own recovery. There is also little recognition that there is hope for this population to achieve fulfilling lives that include working, going to school and contributing to society.
As Medical Director of Fountain House and The Sidney R. Baer Jr. Center – the first integrated health home for people with serious mental illness in the US – I have spent decades approaching patients from a motivational rather than diagnostic perspective. As a result, I have witnessed them move beyond the management of their symptoms to the realization of their life goals.
Rather than focusing on asylums, which in the past have proven to be costly and inhumane, we must invest in Community Systems of Care that combine psychiatric and primary care with social interventions in the areas of employment, education, and housing. A 2017 study by NYU confirms the efficacy of this approach, demonstrating a 21% reduction in Medicaid costs by Fountain House members.”
Trump Wants More Asylums — and Some Psychiatrists Agree
By Benedict Carey New York Times March 5, 2018
In the wake of the horrific school shootings in Parkland, Fla., President Trump has called repeatedly for building or reopening mental institutions.
Strangely, perhaps, he has echoed an argument made by some experts who study the mental health care system.
It’s not that they believe that having more institutions would somehow prevent spree killings, as Mr. Trump apparently does. The majority of these murderers appear to be angry, antisocial individuals — with access to guns — whom the mental health system probably could not have spotted in advance.
The proposal to bring back asylums — in a modern, transparent form — is very much alive for other reasons among some policy experts, psychiatrists and bioethicists.
But a modern incarnation does not impress advocates for people with mental disabilities, who want the very idea dead and buried, along with transorbital lobotomy, insulin-shock therapy and other cruelties visited on people with mental disorders in times past.
The intensity of this debate — and the rare points of agreement between partisans — provide a guide to the maze of the American mental health care system for anyone trying to navigate it while watching a loved one sink into delusion, mania or suicidal despair.
“When people are going back and forth from prisons to hospitals, that’s a sign they might have benefited from longer-term treatment options,” said Dominic Sisti, a medical ethicist at the University of Pennsylvania School of Medicine who was co-author of a 2015 paper subtitled “Bring Back the Asylum” in the journal JAMA.
“For this really seriously mentally ill population, our resources have dried up, and I find that to be an ethical social-justice violation,” he said.
Yet Jennifer Mathis, the director of policy and legal advocacy at the Bazelon Center, which litigates on behalf of those with mental disabilities, called the idea offensive on its face.
“It took a lot of effort to move away from the practice of warehousing people,” she said. “Locking people up long-term is no treatment at all. The idea that we could be going back to those days — we did this before, and it failed and failed badly — it’s crazy and discriminating.”
Dark History
One thing few experts dispute: soul-crushing abuses have occurred in mental institutions, and still do, across the world.
The first therapeutic asylums, established in Europe at the beginning of the 19th century, were just that: asylums, retreats, closer to present-day yoga spas than clinics. They coincided roughly with the founding of what is now modern psychiatry.
Through the 1800s, Quakers in the United States established retreats based on a similar principle: that respite and patient care were the best remedy for “mental breakdowns” of all kinds.
The first mental hospitals were intended to provide a humane, protective environment, too, and there were “pockets of decency” in many of them, the late Dr. Oliver Sacks wrote in the New York Review of Books — especially in facilities that pursued some semblance of the Quaker example.
But these institutions, particularly the state hospitals, soon became repositories for society’s unwanted and adrift, alcoholics, the indigent and vagrant, mixed in with those experiencing psychosis and severe mood problems.
Funding tapered off through the first half of the 20th century. Staffs shrank, and in some facilities, a single doctor was responsible for hundreds of residents, who often lived in squalid, abusive, dangerous conditions.
For many, there was no path out, nowhere else to go. Hospitalization was a life sentence, or close to it.
“It is hard to describe the smell,” said Joseph Rogers, 66, executive director of the National Mental Health Consumers’ Self-Help Clearinghouse, who spent stretches of up to six months on locked wards, mostly in Florida, after a psychotic episode at age 19.
“I guess it is the smell of caged humans. Someone once told me that part of the smell comes from the medication everyone is on.”
He added: “You’re told when to go to bed, where to go, what to eat and when. They take all your freedom away, and in my eyes they’re not placed where you get any help.” He later founded the clearinghouse, which provides assistance and advocacy for people with psychiatric diagnoses.
By 1960, doctors had the first drug that could effectively blunt psychosis — chlorpromazine, brand name Thorazine — giving tens of thousands of residents a chance to live independently. In 1963, President John F. Kennedy initiated the Community Mental Health Act, intended to end institutional abuses and create a system of community-based care.
The idea was that those released from the institutions would move back into neighborhoods, with easy access to a doctor, therapists, at-home services if needed. The money saved by closing the hospitals would be used to support independent living.
Deinstitutionalization
The downstream consequences of that legislation are now generally accepted. State governments, with some exceptions, did not make good on promises to provide adequate community care, like well staffed local clinics, supports for housing, employment and daily living.
Under budgetary strain, they offloaded much of the expense of mental health care to federal programs like Medicaid. Homelessness swelled in the nation’s cities well through the 1980s.
In more recent decades, an increasing number of people with mental disabilities landed in prison, usually for nonviolent offenses. Today there are at least 100,000 inmates with psychosis, far more if those with severe mood problems and drug problems are included, experts estimate.
During this time, the number of public psychiatric beds available has plunged, to 11 per 100,000 people from 360 per 100,000 in the 1950s, according to Dr. E. Fuller Torrey, founder of the Treatment Advocacy Center, which lobbies for more investment in psychiatric beds for people with severe mental illness.
“There’s simply nowhere to put people with severe mental illness to stabilize them,” Dr. Torrey said.
“No one seemed to care enough a generation ago, when so many become homeless,” he added. “Now that they’re going to prison, well, these are horrendous tragedies, and if there were beds available, you wonder how many of these tragedies could be avoided.”
Dr. Torrey estimated that more than 90 percent of people with psychosis could be stabilized and discharged within a few weeks or so — that is, with short-term or acute care. This is a clinical point on which both sides of the debate generally agree: Many people with psychosis need acute care in a hospital, finding the treatments that help before returning to their families. The loss of psychiatric beds means less care of this type is available in many areas.
Dr. Torrey parts ways with opponents of asylums in that he favors longer-term institutionalization for the 5 percent or so who do not improve with acute care, along “with continual, unannounced inspections” to prevent abuses.
Cost of Care
The third, and perhaps most critical, point of agreement in the asylum debate is that money is lacking in a nation that puts mental health at the bottom of the health budget. These disorders are expensive to treat in any setting, and funds for hospital care and community supports often come out of the same budget.
In his paper arguing for the return of asylums, Dr. Sisti singled out the Worcester Recovery Center and Hospital in Massachusetts.
This $300 million state hospital, opened in 2012, has an annual budget of $80 million, 320 private rooms, a range of medical treatments and nonmedical supports, like family and group therapy, and vocational training. Its progress is closely watched among mental health experts.
The average length of stay for adolescents is 28 days, and the average for continuing care (for the more serious cases) is 85 days, according to Daniela Trammell, a spokeswoman for the Massachusetts Department of Mental Health.
“Some individuals are hospitalized for nine months to a year; a smaller number is hospitalized for one to three years,” she wrote in an email.
Proponents of modern asylums insist that this kind of money is well spent, considering the alternatives for people with mental disabilities in prison or on the streets. Opponents are not convinced.
“When you set up a place like Worcester, one issue is there are no eyes on, no one outside watching, and that becomes an invitation to abuse,” said David J. Rothman, a historian at Columbia University. He and Sheila M. Rothman, his wife, wrote “The Willowbrook Wars,” the definitive account of the notorious Willowbrook State School on New York’s Staten Island, which closed in 1987.
It costs some $150,000 or more annually to house a resident at modern state mental facilities like Worcester, compared to about $30,000 a year for good community care, including housing, experts estimate.
“The more you spend on these hospitals, the less is available for community care,” Dr. Rothman said.
At the heart of the modern debate over new asylums are two questions awaiting answers: What is good mental health care, really? And what does its quality say about the society attempting to provide it?
https://www.nytimes.com/2018/03/05/health/mental-illness-asylums.html