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The Changing Face Of Mental Illness
April 20,2001

BOSTON (The Boston Globe) - When Kevin Rooney checked in to a psychiatric ward for the first time, he got the best medication available - truth serum to make him confess the real reasons for his breakdown. He also got the most modern therapy known to his doctors - six strapping orderlies who stuck a rubber bit in his mouth so he wouldn't swallow his tongue, then shocked him with so much voltage that he was nearly thrown from the table.

That was half a century ago, when mental hospitals were known as loony bins, patients like Rooney checked in but often didn't check out, and the number of people in state-run asylums in Massachusetts had reached its all-time peak of more than 23,000.

Today, seven of the 11 state hospitals from 1950 have closed, their buildings boarded up, converted or leveled altogether. Had the number of asylum patients kept pace with the state population, there would be more than 32,000 now. Instead, there are slightly more than 1,000, the majority of whom will spend less than a year in an institution.

The story of that change represents one of the most inspiring medical breakthroughs of the last 50 years. Today most mental patients are living in the community, functioning substantially better than people did in the asylum. The shift has been possible partly because doctors began to recognize that conditions such as schizophrenia and depression have a biological basis and can be treated with drugs. Even more, it has been possible because of a change in attitude about mental illness: With one in five adult Americans suffering a major mental illness, it has become clear that the community, rather than the nuthouse of old, is the best place for them to get better.

"This is nothing short of a transformation," said Danna Mauch, who has followed the changes during more than 30 years working in private and public mental health systems in New England. "Most are clearly better off; there are few who dispute that."

That is not the tale advocates typically tell of mental health in the nation as they hammer the system's manifest shortcomings. Thousands are waiting for group homes and other residential services, which generate backups everywhere from psychiatric hospitals to homeless shelters. And too many former mental patients still wander the streets, convinced they are Jesus Christ or Madame Curie.

But such shortfalls notwithstanding, the progress made in treating mental illness has been revolutionary. More than 75 interviews by the Globe in recent weeks - with health professionals and patients, in hospitals, at group homes and on the street - suggest that the mental health system finally has found a series of solutions, even if it lacks the cash to fully implement them.

Nowhere has the revolution proceeded further, faster, than in New England. Governors may have had money in mind when they shuttered mental asylums, but a network of quarter- and halfway houses, overnight shelters and daytime clubhouses has quietly been erected in neighborhoods across the region to replace them. And insurers may still treat mental maladies as less important than physiological ones, but a law that took effect in Massachusetts on Jan. 1 aims to close the gap.

"In the past, the gaps in our system have been more qualitative. The right medicine, treatments and community health programs simply were not there. Now we have those things," says Philip Mangano, head of the Massachusetts Housing and Shelter Alliance, an umbrella group representing 200 programs. "The gap now is quantitative, with not enough of those good things out there."

Kevin Rooney has experienced firsthand the uneven but inexorable march toward answers, enduring four stays in private and public psychiatric wards, 40 sessions of shock therapy and endless trials and errors with often unforgiving drugs. Today, he is what he terms a "success story" - living on his own in Natick, getting counseling, participating in group programs and taking medicine to control his manic-depressive illness.

"There are new drugs all the time, more therapy groups are formed all the time," he said. "Mental illness is accepted more today as an illness rather than a crazy person who should be kept upstairs in the attic."

To understand that transformation, it helps to revisit the 1950s, when the attic and asylum formed the core of the mental health system.

The reasons people checked in to state psychiatric hospitals back then, or were committed, varied wildly. Some were clearly psychotic and needed institutional care. Others were addicted to drugs or drink, were inordinately promiscuous or displayed other behavior that relatives or the community saw as anti-social. Most didn't have much money, and after World War II there was an influx of shell-shocked veterans.

Those asylums often had their own chickens and cows, vegetable gardens and everything else needed to survive. A sentimentalist might see them as self-sustaining communities where residents worked as they healed. But critics came to see them as "snake pits" designed to segregate patients from society. The good news was that the hospitals offered anyone who needed it food, shelter and treatment; the bad was that much of their day was spent rocking in front of a TV, with depressingly little treatment or hope of getting out soon.

Things started to change in the 1950s. Massachusetts, which in 1662 had opened America's first almshouse and in 1833 built the first state-run asylum, began moving away from the model of the public mental hospital. The discovery of psychotropic drugs such as Thorazine had reduced or eliminated the wildest delusions associated with schizophrenia and other disorders. There also was an evolving alliance between fiscal conservatives worried about the expense of asylums and civil libertarians concerned that they restricted patients too much and helped too little.

The notion that people would be better off in the community than in a big institution wasn't new: In the early 1800s, enlightened caretakers talked of reintegrating patients into the community. Not until the 1950s, however, was such talk widely acted on, causing the population at state hospitals to drop from 23,560 in 1953 to less than 20,000 by 1960. It continued to fall through the 1960s and 1970s, reaching 2,676 by 1980.

One problem loomed, however. Although Bay State governors were eager to close the asylums, they hadn't figured out where the former residents would go. Some seemingly didn't care. Others thought the new medications would let people go back home or that other treatment and housing alternatives would evolve.

The result was that many former mental patients ended up on the streets, homeless and without medicine to fend off their demons.

"We all felt that getting people out of the hospital was a wonderful idea, but we thought it could never work unless there were appropriate places for them to live," said Dr. Bruce Cohen, president of the not-for-profit McLean Hospital in Belmont, which has mirrored changes in the state-run system by substantially trimming inpatient services and expanding outpatient and residential ones.

"We felt frustrated that the appropriate places for them to live weren't implemented at the same time."

Luckily the story does not end there, although few have followed its twists and turns since. State officials have spent the last 20 years filling in the gaps for the thousands of mental patients who would otherwise have been in state asylums.

Any attempt to understand where they went has to start in group homes, the cornerstone of community-based mental health.

In the old days, a halfway house was just what it sounds like, a stopover between the hospital and community, and it came in just one flavor. Today there is a potpourri of approaches, from urban settings like South Boston to outlying ones like Winchendon. Residents stay a year or less in some, permanently at a few others. Some are staffed around the clock; in others, residents work during the day and cook, clean and otherwise care for themselves at home, with counselors coming mainly in emergencies. Many have special restrictions, accepting only men or women, or limited to Asians, Latinos, people who were homeless or those with drug and alcohol addictions.

In 1950, there were no mental patients in group homes or comparable settings in Massachusetts. Today there are 6,237.

A late afternoon visit to a group home in Jamaica Plain finds some residents helping cook dinner, one playing the piano, while others sit and talk about their day. After years of going in and out of mental hospitals, Delois Howell said she cherishes the support and freedom of her current home. Still, she explained, "big Satan" still haunts her every so often, "and I have to go upstairs and lay down then."

The goal these days is for as many of the mentally ill as possible to live on their own - and 3,502 already are, in some sort of subsidized housing, with case managers checking in on them.

Anthony Ferrara is one of them. He started hearing voices when he was 13, telling him to steal a car, and he wielded a screwdriver against a policeman who stopped him. That landed him in a juvenile psych ward, then an adult one.

"I'd sit there like a zombie all day. All I wanted was to go to bed and sleep," Ferrara, now 37, recalls. "In the hospital, when it was time to eat, a buzzer rang. When it was time to sleep, a buzzer rang. When it was time to shower, they told you."

Ferrara now makes those decisions on his own in his apartment, where he is considered a poster child for today's community-centered mental health system. He graduated from a highly structured group home to one where he had more responsibility, then to independent living. He also graduated from the old generation of anti-psychotic drugs like Haldol to newer ones like Zyprexa that keep him more alert. On the older drugs, "I had no sense of direction or time. I lost a lot of years," he said. "Now I'm aware, my illness is stabilized, I function like an average person."

Not everyone is lucky enough to make it to a group home or out on their own, or to last there if they do. Those who can afford it can get private treatment and accommodations. For the rest, there are other options.

One is to check into a full-service facility such as Cambridge Hospital, which has its own state-of-the-art psychiatric emergency room and more than 100 psychiatric beds. Insurers generally allow patients to remain only about two weeks, hoping whatever crisis they experienced stabilizes and they can return to outpatient treatment, or that they can find a bed at a state mental hospital for longer-term care.

The state still runs four of its own mental hospitals, along with inpatient units at five mental health centers and two public health hospitals. While some are at the same sites, those facilities don't have much in common with the asylums of the 1950s. It's not just that they are smaller. There also are fewer locked wards, less use of restraints and more freedom to roam the campus.

State hospitals today are part of a continuum - a place for people who at least temporarily require intensive supervision, but who are being prepared to make their way to group homes or back with their families. To make that point, hospitals feature "quarter-way houses" - group homes on the grounds that ready residents for similar settings outside.

What about the other tens of thousands who left the asylums of the 1950s, or who would have been there if they had been living then?

Some 7,000 of them live on their own, or with family or friends, but get support from state programs. Clubhouses like Center Club near North Station offer meals and job training, a place to spend the day and a way to help in the kitchen or on the computer. There are crisis-response units at places like Cambridge Hospital that bring help directly to people's homes. Outpatient clinics and day hospitals, social clubs and an array of other programs, meanwhile, try to fill perpetually forming fractures in the system.

That does not mean there are no gaps remaining in the safety net. There are. Big ones.

The most visible are on the streets, where statewide there are an estimated 2,000 homeless people with severe and persistent mental illness. Some go in to shelters, but many are too sick - or too distrustful - to accept a bed and a meal. One stop on a recent night by the Boston-based Health Care for the Homeless suggests the problem's dimensions: Workers offer clothing, food and basic treatment to an elderly black woman named Stella lying on a bench in South Station. But she insists she doesn't need it because she is an heir to the Rockefeller fortune.

Prisons are another place the mentally ill turn up in disproportionate numbers. One study suggests that at least 1,600 inmates at state and county facilities suffer from major depression, bipolar disorder or schizophrenia, while others suggest there could be many more.

The Department of Mental Health compiles its own lists of those it wants to help, but can't right now. They show 13,385 adults waiting for a case manager to review their problems, 229 needing help with a job and more than 3,000 waiting for group homes or somewhere else to live. Some on the residential waiting list are homeless. Others are in hospitals or other highly supervised settings, ready to leave but without a home to go to, which creates a backup for those waiting to be admitted to a state hospital, private psychiatric facility and at every other tier of this intertwined network.

The lists may be faceless, but they include Kristen Hall, a 26-year-old with blue eyes and freckles. She checked into Westborough State 27 months ago after trying to kill herself while suffering from depression that she said was "like imagining the worst feeling you can ever have, then multiplying that by a million."

In many ways, Hall embodies all the uplifting changes in mental health: The hospital helped stabilize her depression with drugs, relieved her substance abuse with therapy, got her used to working again by baking at the on-site Classic Cafe and prepared her for independent living. Little of this was conceivable, despite good intentions, 50 years ago.

But Hall was ready to leave nine months ago, and there are no openings for her at either a group home or a government-subsidized apartment. The state has allocated incrementally more money every year to help with housing, but it is not enough to keep pace with the increased need and eliminate the backlog.

Hall doesn't follow the budget debates, but she can tell you precisely how long she has been ready to go and what it feels like having to stay.

"It's very frustrating," she said as she finished lunch in the recreation room. "This is a good place to be if you need help, but it's not a way of life to be living here."

Copyright 2001 The Boston Globe. All rights reserved.

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Chrome 2001
Chrome 2001