Title of Article: For Mentally Ill, Chaos in an Intended Refuge

Author: Submitted By: Written By: Clifford J Levy and Sarah Kershaw http://www.nytimes.com/2001/04/18/nyregion/18MENT.html?pagewanted=print 

Article: In the early 1970's, New York was casting mentally ill people out of its grim psychiatric hospitals and hoping to find more humane settings for them. Some were directed to a new residence in Queens called the Leben Home for Adults, where they were supposed to begin leading safe and independent lives.

In the years since that time of promise, Leben Home has amassed a record of neglect and misconduct.

Last year, the home was forced by the state to evacuate its first floor, a warren of crumbling walls and fetid mattresses where 60 people lived before they were led out into the daylight, some clutching belongings in black trash bags.

A few years earlier, the home overlooked the disappearance of a resident, crippling a police effort to find him. Seven months later, his family learned that he had been run over by a Long Island Rail Road train well before the home reported him missing, and had been buried, unmourned and anonymous.

A resident was raped at the home by a janitor in 1995, and two residents were killed, their culprits never found, in 1989.

It all happened in a brick building with a barbed wire perimeter on 45th Avenue in Elmhurst, a place annually deemed by the state as acceptable quarters for 360 people with mental illness, some of whom can routinely be spotted panhandling on surrounding streets or picking through the garbage of the nearby Continental Diner.

In the last few years alone, the home's current operator, Jacob Rubin, has been accused in lawsuits of misappropriating thousands of dollars from residents, of trying to withhold psychiatric treatment from residents as part of a feud with a clinic next door, and of playing a role in a 1998 scheme that got 24 residents to consent to what state officials called "assembly line" and often unnecessary prostate surgery.

All the while, Mr. Rubin, who took over the home in 1992, has been given more than $3 million annually in government money to run the home. In recent years, the residents themselves have been among his employees, mopping floors and doing other odd jobs for $1 an hour.

The state could close Leben and other adult homes like it, but governors back to the 1970's have been reluctant to do so, and their aides acknowledge why: they would have to undertake an expensive effort to find beds elsewhere for the mentally ill.

Mr. Rubin said he had never provided poor care or exploited residents, and that inadequate financing from the state was responsible for whatever problems existed.

Nearly three decades ago, places like the for-profit Leben Home were perceived as compassionate alternatives to sprawling psychiatric hospitals. Instead of languishing in dismal and costly hospital wards, the mentally ill were to live in neighborhoods in what amounted to rooming houses with meals, activities and some supervision.

The vision for deinstitutionalization - which was occurring across the country - was at times realized in New York. Some went to live in small group homes operated by nonprofit organizations. Others landed in larger for-profit residences with solid reputations. But with the change also came the businessmen who over the years have run places like Leben, which is the largest for- profit home for the mentally ill in New York.

The state has conducted sporadic inspections of Leben, and then has tended to turn away. Rarely have the authorities delved into the many unsettling incidents that have occurred there, according to interviews and a review of state, city, police and court records.

A sense of the home's stubborn history can be grasped in the files of a state watchdog agency, the Commission on Quality of Care for the Mentally Disabled.

A visit to Leben on Jan. 22, 1990: "Overall conditions in the facility resemble those one was likely to see in the back wards of mental health institutions a decade or more ago."

A decade later, a visit on May 18-19, 2000: "Many residents were ill groomed and malodorous." Workers were "psychologically abusive" toward residents.

Clarence J. Sundram, a former chairman of the Quality of Care Commission, said the state "has had a history of completely ineffective regulation of this industry."

The commission occasionally inspects these homes, but has no authority to crack down on them, and has faced budget cuts in recent years.

And so at Leben Home, life inside and out goes on with a kind of accustomed disarray. On one recent Sunday afternoon, a woman sat alone in a drab recreation room, lipstick smeared across her face. Another was dancing by herself to salsa music. No aides were present. A woman in a nightgown walked out of the building's front door and urinated in the bushes.

The people at the home include schizophrenics and manic-depressives and chronic alcohol abusers, often suffering delusions and paranoia. Yet even some of the most troubled sense that things do not have to be this way. "Are the mice supposed to be here?" wondered a 59-year-old resident when asked to describe his room.

Angel Viruet, 30, a resident since 1992, considers himself something of a guardian for the most lost residents, often turning his room into a makeshift salon and giving haircuts. "It has always felt like hell, and to this very day it still feels like hell," he said.

Until recently, the State Health Department said, it had levied a total of $5,000 in fines against Mr. Rubin. But after it became public last month that the home played a role in the mass prostate surgeries, the department responded by fining Mr. Rubin $60,000 and said it would try to revoke his license and install another operator.

"We are looking for dramatic, widespread, immediate changes," said John Signor, a Health Department spokesman.

Meanwhile, the home stays open and Mr. Rubin remains unapologetic. "When I took over Leben, the place was 10 times worse than what the first floor was," Mr. Rubin said in an interview. "And I have made constant improvements."

Mr. Rubin and his lawyer, Jay L. T. Breakstone, said they were confident that criticisms of the home could be answered. "We are in this for the long haul," Mr. Breakstone said.

Angelina LaChapelle has boxes of documents on the home that suggest that he is right. Ms. LaChapelle lived next to Leben for 25 years, and kept a detailed record of its turmoil and her futile attempts to get something done about it.

From her yellowed notes: 1980, "Attempted suicides. Two male residents jumped from windows"; 1990, "The police are constantly there. Also, ambulances and fireman at all hours."

"Things like this shouldn't be going on today," said Ms. LaChapelle, who finally moved a few miles away in 1999.

Oversight: Haphazard From the Start

Leben Home opened in the early 1970's in the former administration building of an aircraft parts factory (Leben means "life" in Yiddish and German). It was intended to house elderly people, but like many other adult homes in the city, it soon shifted missions. With the state emptying psychiatric hospitals, the adult homes saw a source of new clients. The homes had no mental health expertise, but the state did not object. What resulted was a jury-rigged system of care that still endures, with adult homes in the state now housing about 11,000 mentally ill people.

"These are today's back wards," said Karen Schimke, president of the Schuyler Center for Analysis and Advocacy in Albany. "The people who live in the adult homes are out of sight, out of mind."

Regulation was haphazard from the start. Though the State Department of Health now oversees the homes, its inspectors do not have mental health training. The department tends to concentrate on nursing homes, which provide health care and are more numerous. State mental health officials do little if any supervision of the adult homes.

The state actually bars the adult homes from offering mental health services, with the rationale largely financial: the federal government will shoulder part of the cost of such care if it is delivered in clinics or hospitals, not in the adult homes. The homes arrange for residents to receive psychiatric care elsewhere.

Mr. Rubin did not need an extensive mental health background to get an operating license in 1992. He had recently moved to New York from California, and spoke vaguely to local officials about his family's involvement in health care.

The Health Department, which sometimes fails to inspect Leben as regularly as it is supposed to, learned of the squalor on the home's first floor last year only after the Quality of Care Commission, an independent agency, conducted an inspection.

The Health Department then evacuated the 60 first-floor residents, many of whom were taken to live temporarily at Pilgrim Psychiatric Center on Long Island. They were brought back after repairs were made.

Mr. Rubin said the conditions on the floor were not serious enough to require evacuation. He said he might not have made repairs in the months before the evacuation, and explained that he was having a dispute with his landlord and was not sure that he would continue operating the home. He said he had frequently received excellent inspection reports from the state, but did not follow through on his offer to produce them.

Adult homes earn less in state aid than nursing homes. The adult homes receive roughly $830 a month for each resident, which comes out of residents' government disability benefits.

Mr. Rubin said state aid was so low that he was losing money on the home, but declined to say how much. While required to file financial disclosure forms with the state, he has not, at least for the last few years. He said his accountant had forgotten to do so.

Care: Violence Abounds Instead of Help

Unruly behavior, residents inexplicably missing, even violent crimes -interviews and inspection reports portray Leben as frequently in turmoil. Residents have few limitations on their time. But the staff is required to monitor them, and if they appear troubled, to inform their doctors, therapists or family members.

Examples abound that basic oversight is lacking. One resident hammered holes in his bathroom door last year while drunk. When staff members tried to talk to him, he jumped from his room's first-floor window and ran away. It was not the first time, yet the resident's case file for the prior two years was blank.

For months last year, another resident had a blank file even though he refused medication, had body lice and had smeared rotting food on his room's walls and furniture.

Mr. Rubin said he did not accept people with severe behavioral problems, and said that when the state pointed out errors in supervision, he corrected them. "I try to go over and way beyond, to do even better than they want," he said.

In 1989, before Mr. Rubin took over, Gladys Landau, 72, was beaten and locked in her bedroom closet. Her wounds were serious but not life-threatening, yet no one noted her disappearance, and she died there.

Citing evidence uncovered in a subsequent lawsuit, her family's lawyers said she could have been missing at least eight days before being discovered. Using police records, the lawyers depicted the home as rife with drug dealing, assaults and other crimes. The lawsuit was settled for $400,000.

Another woman was killed at the home the same year. In both incidents, the culprits were never found.

The disarray can leave residents' families deeply scarred.

In the summer of 1997, the home discovered that a resident named Ralph Thompson was missing. The home, which is required to notify the police when a resident is gone for 24 hours, insisted to detectives on Aug. 7 that he had last been seen on Aug. 6.

With that information, the detectives looked for him, disregarding any fatalities of unidentified people that occurred before that date. They found no trace of him.

Seven months later, his son, Marc, working with the police, determined that his father had been hit by a Long Island Rail Road train in Queens on Aug. 2 and buried in potter's field. In other words, Ralph Thompson had been missing at least four days before the home had even reported him gone.

"People forget that the mentally ill are human beings," said Marc Thompson, who is suing Leben.

Mr. Rubin said he was unfamiliar with the details of the case. He said the home tried to keep track of residents, but "people slip by us."

The body of Ralph Thompson remains in potter's field. His mother could not bear the thought of exhuming it. A memorial service was held for him at his church, and his family and friends sang one of his favorite gospel songs, "I'm Going Up a Yonder."

Financial Control: Money and Therapy Are Central Issues

Money is a perpetual source of tension at Leben. There is not a lot of it, and residents often have scant control over what is theirs. From their disability payments, most receive about $5 a day in spending money.

And so, as Angel Viruet, the 30-year-old resident who gives haircuts in his room, says, people are preoccupied with scrounging for money and buying what tiny pleasures it promises: a cigarette, a cup of coffee, a lottery ticket.

With supervision lax, some residents easily take advantage of others. Petty loansharking is common, inspectors have found. There have also been state reports that sex gets bartered in the quest for spending money.

The person with the most influence over residents' finances is Mr. Rubin, who often gains control of disability benefits for those too ill to handle their own money. And like some other adult home operators, Mr. Rubin has been accused of stealing it.

In 1997, Mr. Viruet and his lawyer, Julia Price Rosner of MFY Legal Services, sued, saying that Mr. Rubin had not told him that he had been awarded $45,000 in retroactive disability payments. Mr. Viruet said Mr. Rubin deposited the money into the home's operating account.

Four other residents joined the suit, asserting that Mr. Rubin had misappropriated as much as $3,000 of their money. And the residents said they had been coerced into working at the home for meager pay - Mr. Viruet, for one, said he received only $20 for a monthlong job painting Leben's large smoking room.

Mr. Rubin settled the case without admitting wrongdoing, agreeing to transfer $28,000 into a new account opened for Mr. Viruet, and paying amounts ranging from $425 to $2,800 to the other residents.

Mr. Rubin said he had never hidden money from any resident. He said the work for low wages was a kind of therapy for the residents intended to bolster a sense of responsibility.

Mr. Rubin has also been feuding over a lease with a nonprofit clinic used by the residents, New York Psychotherapy and Counseling Center, which rents space from the home.

The clinic said Mr. Rubin had sought to discourage or prohibit residents from seeking psychiatric care there. It said Mr. Rubin was giving residents money and cigarettes to induce them to use another clinic. Mr. Rubin would not comment on the matter.

Mr. Rubin has responded to the state's scrutiny of Leben in recent months by renovating and improving staff training. Despite Leben's legacy, some residents say they hope that Mr. Rubin can address the state's objections and stay on. They have no confidence that there is a better alternative.

A 48-year-old resident who has been at Leben for four years said many at the home were afraid it would be closed by the state. The resident, who has paranoid schizophrenia, dislikes the food, the care and conditions at the home. He has often said he believes the home is a "funeral parlor," and "the city morgue."

Still, he said: "It's not the prettiest conditions to live in. But a home is a home."