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Fall 2000
Vol. 63, No. 1

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Project Rescue

"It's like being caught in the Bermuda Triangle," says psychiatrist Steven Lamberti, describing the plight of those tough-to-treat mentally ill patients who bounce back and forth from hospital to jail to the streets--with no way out. Project Link, a cooperative University-community program, may have found a way to rescue them.

By Tom Rickey

Yesterday's spaghetti dinner stains the carpet underfoot. Hot dog buns and a 32-ounce bottle of beer constitute the meal plan for the next several days. Flies buzz through the unscreened window. Undone laundry litters the floor.

Amid the squalor, Catherine sits in a cocaine-induced stupor, her arms raised in some sort of weird exercise that has been frozen in mid-stretch. She's oblivious to everything, even the hand-rolled cigarette burning down to the nub and into her fingers.

A gleam of hope: With Project Link's help, "Chuck" is so far staying out of both jail and hospital, working at his first-ever job and enjoying his cat and his music. The program is often the last link to reality for some of the city's most troubled people.

Visitors Nancy Price and Rob Weisman are unfazed. They grab the weapons of choice for professionals in this urban Rochester neighborhood--their cell phones--and send off rapid-fire calls to social workers and welfare experts to make sure that Catherine will be getting the food and other staples of life that most people take for granted.

It's an oft-repeated scene for this pair, who head the "mobile treatment team" for Project Link, a program created five years ago to treat people with severe mental illness who have become entangled in the criminal justice system--the so-called "hopeless cases" who have fallen through the cracks of mental health care.

Catherine, for instance, has spent most of her 35 or so years in psychiatric hospitals, punctuated by brief periods on the "outside," where she has promptly gotten into fights, gone back on drugs, and been bounced to jail for prostitution--the best way she knows to pay for her drugs.

This mix of misdeeds and mental illness is common. The U.S. Justice Department estimates that the nation's jails and prisons hold nearly 300,000 mentally ill inmates, with an additional half million on probation. A graph comparing prison beds to psychiatric-hospital beds shows why: Over the last 40 years the number of prison beds has skyrocketed just as the number of psychiatric beds has been slashed--the result of an effort to move the mentally ill out of the hospital and into mainstream America. The hulking Rochester Psychiatric Center built in 1957 once housed more than 3,000 patients; now the campus has fewer than 200 residents.

"Jails and prisons have become the final destination for the mentally ill in America--it's the most pressing issue facing psychiatry today," says Project Link director Steven Lamberti, a Medical Center psychiatrist. "The Los Angeles County Jail has become the nation's largest mental institution. It holds more people suffering from severe mental illness than any hospital in the country."

Project Link is showing unprecedented success in treating such patients. Last year it was recognized nationally by the American Psychiatric Association as the most outstanding university-based clinical psychiatric program for the mentally ill, and other communities are lining up to copy it. The project is funded by several organizations, chief among them the Robert Wood Johnson Foundation and the Monroe County Office of Mental Health. It is run by the psychiatry department's Strong Ties Community Support Program, which specializes in treating patients with severe mental illness.

The program is often the last link to reality for some of Rochester's most troubled people, and their families.

One, typical, client was referred to the project after chasing his brother around the house with a fork, and after police kicked him out of the storage shed he called home. "I've watched my son's life descend on a downward spiral for the last seven years," his mother wrote. "This young man who was articulate, well read, and happy, is now homeless, estranged from his family, involved with the legal system, and unable to hold a job. It's terrifying to us that prison will be the end of his painful journey."

Such are the stories of the tough crowd that makes up Project Link. Of the current 100 participants, two-thirds never graduated from high school, one-third were homeless at the time they were accepted into the program, and nearly half have felony convictions. About 85 percent have schizophrenia or some other psychotic disorder. Some are arsonists, some have attacked social workers, others have served time for robbery. One client stole Price's laptop and sold it for $60 to buy crack cocaine. Many are awash in drugs and alcohol.

This last is readily evidenced by the empty cocaine bags that litter Catherine's apartment on the day Price, a nurse practitioner, and Weisman, a forensic psychiatrist, stop in on her. "She gets out of jail or the hospital, and immediately she runs right out and does drugs," says Price in mixed despair and exasperation.

She's used to a lifestyle where you get three hots [three hot meals] and a cot, and where your medications show up when they should," adds Weisman. "She does not know how to survive on her own, and that's a hard thing to teach anyone instantly. We do the best we can to provide some structure and support."

Just down the dingy corridor of Catherine's low-budget hotel, the mobile treatment team finds a happier scene. An upbeat client shows off the brightly colored clothing he's been given. He also proudly displays his drawerful of neatly arranged plastic bags and drinking cups. Then he brings out his coffee maker, along with the whole beans he's using to make his brew. The beans will have to be ground, Weisman reminds him, a fact the man notes and takes in stride. After touching base with the client about an upcoming dentist appointment--"I need my teeth," he says through a smile filled with gaps --Price and Weisman move on.

Other stops include a visit to Chuck, a young man holding down a job for the first time, who enjoys making music in his apartment thick with cigarette smoke. And then there's Brandon, who was referred to Project Link, Price says matter of factly, "after stabbing his sister-in-law in the neck with a screwdriver in response to commands from aliens."

It's a typical workday for Price and Weisman: tracking down and visiting clients wherever necessary, sometimes treating them with medications, sometimes putting them back in touch with their case managers, sometimes just touching base to make sure they're all right.

This form of what's been called "assertive service delivery" is only one of the innovative features of Project Link. For one thing, the program's management is shared by a diverse group of key community organizations, among them Action for a Better Community, the Ibero-American Action League, Monroe County Clinic for Socio-Legal Services, Unity Health System, and the Urban League of Rochester. A representative of each group makes up a governing board that sets policy and hires the program's equally diverse case-advocate staff--the people closest to the patients who, as Lamberti phrases it, act as "the eyes and ears of the treatment team."

"The diversity of the partnership and the diversity of the staff is what makes this work," says Gladys Santiago of the Ibero-American league. "Case managers need to know the culture and the language of the people they serve--it's a fact of life."

Another distinguishing feature is the project's close working relationship with the criminal justice system. "Most treatment teams are based in the mental health world, and clients disappear when they go into jail," Lamberti notes. "Our team is part of both worlds; they're as comfortable in the jails as they are in the hospitals."

Team members are present if a client is brought in for breaking the law, and they're frequently in courtrooms and jails trading insight and information with once-skeptical judges, public defenders, police, and lawyers.

It's easy to let the skepticism flow. Rochester judges readily recognize many of the Link participants, who have cycled through various programs and jails for years. "There was lots of skepticism from potential funders, too," says Weisman. "One visitor came through and said, 'Where I'm from, we lock these people up and throw away the key.' That summarizes what a lot of people think. But we've developed a system to treat these individuals successfully, and it saves taxpayers money in the process."

"With some of these people," admits Rudo Munondo-Ashton, who coordinates the program's case managers, "you look at their clinical summaries and you just want to say, 'They're never going to make it.' But we give them a chance, and some really surprise you."

A recent study comparing the "before and after" experiences of 54 Link clients proves the point. In the year before joining the program, they spent an average of 109 days in jail and 105 days in the hospital. In their first year in Project Link, those numbers plummeted: Clients averaged just 40 days in jail and 14 days in the hospital. The average annual cost of caring for a participant dropped as well, from $62,500 per person to about $14,500 per person, including the cost of the program.

And many of these patients improved dramatically in their ability to take care of themselves: They managed money better. Their personal hygiene improved. They were able to get to appointments on their own. And they cut down on drugs and alcohol.

Such improvements are rarely seen in people as troubled as these, despite the efforts of armies of professionals. Too often, says Lamberti, mental health professionals, police, and social service workers clash in their attempts to help these patients or to protect society. "Before this program, it was as if they were lost in the Bermuda Triangle: They bounced from jail to the hospital to the street with no hope of finding their way out."

"Our clients are the folks who tend to fall through the cracks," Weisman adds. "We're the last stop for a lot of people who have no other place to go. With traditional services, if they miss their first appointment, they're lucky to get a second one. Our program provides a third chance, a fourth chance, a fifth chance. . . ."

All those chances came in handy for the first person admitted to the residential portion of the program, where 10 clients live in supervised housing. He started taking night-time strolls to buy drugs at a crack house a few doors away. When his money dried up, he stole the residence's TV and VCR and traded them for crack. The program took him back again and again, including after the time he served in jail for the theft and drug use. Now he's off drugs and holding down a job.

He can, and no doubt will, backslide again. But the important thing is that he's still hanging in there. And that, to Lamberti, is an enormous victory. In this world, he says, "you don't get accolades for surviving. And these people should. They're fighting the worst mental illnesses known to mankind and getting no recognition for the little victories, like staying out of jail or the hospital.

"I'd much rather run the decathlon or face Mt. Everest than the illnesses consuming their lives. They're the ones who deserve the medals."

Tom Rickey is senior science editor for the Office of University Public Relations.

The names given to clients discussed in this story are fictional.

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