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USA Today
February 12, 2001
Reprinted with permission. Copyright 2001 USA Today. All rights reserved.
Families lobby to force treatment, Fight polarizes mental health community
By Laura Parker
Rodger Gambs is 28 and suffers from schizophrenia. For much of his illness, he refused care. His parents tried to push him into treatment, but in the eyes of the law, he wasn't dangerous enough to be hospitalized against his will.
The standoff between parents, son, the courts and mental health professionals in San Luis Obispo County, north of Los Angeles, continued for five years. The parents begged for their son to be forced into treatment. The professionals shrugged. Sorry, they said, our hands are tied.
Then, in 1998, Rodger stole two of his father's guns to arm himself against the blood-sucking vampires he said lived in the back yard. That led to felony charges. Only then did Rodger qualify for hospitalization -- at the state hospital for the criminally insane, where he spent four months in 1999. Rodger now lives in a group home, takes medication and is recovering.
Rodger's parents, Roger and Rae Belle, are soft-spoken. But they are still outraged at a health system that allowed their son to go untreated for so long. "You don't have to become a criminal to be treated for a heart attack," Roger says. "No one should have to go through what we went through," Rae Belle says.
But tens of thousands of families do every day. They are at the heart of a deeply divisive debate over how this country should care for severely mentally ill people who forgo treatment. In many regards, it is a struggle between law and medicine: the legal right to control one's destiny and the medical theory that treatment, even when forced, can restore mental patients' health.
The battle, now being waged in a dozen state legislatures, is complicated by ignorance and fear -- and burdened with history. Legal protections written a generation ago to stop mentally ill people from being locked up and abused now are at odds with treatment theories developed since then.
Under patients' rights laws dating from the 1960s, the mentally ill cannot be forced into treatment involuntarily in any state unless they are dangerous or so gravely disabled that they cannot care for themselves. In short, the laws protecting patients' rights also protect their "right" to be mentally ill.
Meanwhile, the demise of state-run mental hospitals in the 1970s and 1980s, as the treatment for the mentally ill was de-institutionalized, left families with the primary burden of caring for the mentally ill. For them, mental illness often becomes a real-life horror movie that siphons away savings accounts, grinds away at family relations and leaves them exhausted and at odds with doctors, judges and the police.
All too often, the struggle ends in tragedy. The most gruesome episodes make headlines. The slayings in 1998 of two police officers in the U.S. Capitol, committed by Russell Weston Jr., 42, a schizophrenic off his medication, are part of a long list of violent outbursts by mental patients. Prosecutors are pressing the court to force him to take medication so that he might become competent to stand trial. Weston faces the death penalty if convicted. His lawyers are resisting.
The headlines flared again last week after Robert Pickett, 47, a mentally ill accountant from Evansville, Ind., fired shots outside the White House and was wounded by the Secret Service. He had been hospitalized for his illness and had attempted suicide at least once, but it was unclear whether he was still being treated. He is likely to face federal criminal charges when he appears in U.S. District Court this week.
More often, mental illness is a private tragedy that ends in suicide. Victims' families are left to ponder whether treatment could have helped.
Anna-Lisa Johanson, whose schizophrenic mother became famous as the woman who stalked television talk-show host David Letterman, knows the feeling. "I was raised the classic liberal, with the idea that you can't force anyone into treatment and you can't force anyone to take medication," she says. "I was wrong."
Johanson's mother, Margaret Mary Ray, refused treatment for most of the 25 years she was ill. Ray committed suicide in Colorado in 1998 by lying down on railroad tracks in front of an approaching freight train.
Johanson and families such as the Gambses are pressing for state laws that would make it easier to force patients to take medication under court order. But they face ferocious opposition from civil libertarians and former patients, who see the issue not as a question of medicine but of civil rights.
"If you're legally competent and not dangerous, you get the right to make your own bad decisions. It happens all the time," says Ira Burnim, legal director of the Bazelon Center for Mental Health Law in Washington, D.C., a group that campaigns for civil rights for the mentally ill. "Do people lack insight when they continue smoking? When they have end-stage heart disease and they don't follow their doctor's advice?"
What if no services exist?
The debate has polarized the mental health community and has been condemned by mental health advocates as a distraction that saps energy from what they see as a larger issue: inadequate services for the mentally ill across the country. What good is court-ordered, or "assisted" treatment, they ask, if no services exist to be ordered?
The primary battlegrounds have been New York and California.
In California, a plan to establish a forced-treatment outpatient program was defeated last year and faces an uncertain future. Opponents showed up at legislative hearings wearing upside-down triangles, the symbols worn by mental patients in Nazi concentration camps. They denounced the bill's chief sponsor, Assemblywoman Helen Thomson, a former psychiatric nurse, as "Nurse Ratched." It was a reference to the antagonist in writer Ken Kesey's 1962 novel, One Flew Over The Cuckoo's Nest, a story so powerful in its portrayal of abuses of the system that it still resonates. In Sacramento, the bill passed the Assembly with broad support but died in the Senate without a vote.
Sally Zinman, who heads the California Network of Mental Health Clients, a patients' rights group, organized the opposition. "Have you ever been in a place where the doors are locked and you don't have the keys?" she asks. "Restraint and seclusion are overused. They have killed people."
The state of New York broke ground in 1999 by enacting a law requiring outpatients to participate in mental treatment if ordered to do so by a court. But the bill passed only after a horrific act of violence that transformed the issue from one of public health into one of public safety. "Kendra's Law" was passed eight months after a Manhattan office worker named Kendra Webdale, 32, was shoved to her death in front of a subway car by Andrew Goldstein, a schizophrenic man off his medication.
Meanwhile, the number of mentally ill who go untreated is rising across the nation. Those who forgo treatment are most visible in jails and among the homeless population. Although estimates of the number of homeless vary widely, from 800,000 to more than 2 million, there is universal agreement among police and health professionals that more than a third of them are mentally ill.
Likewise, jails have become mental wards. A Justice Department study in 1999 found that 16% of the inmates in U.S. prisons suffer from mental illness. There are more mentally ill people in U.S. prisons and jails (283,000 in 1998) than there are in mental hospitals (61,772 in 1996), according to the latest federal figures.
"Nobody is advocating that we re-open the state hospitals, the way it was in the 1930s, '40s and '50s," Assemblywoman Thomson says. But "we have gone from hospital-based care to prison-based care. The opponents who say, 'Don't take my rights away,' refuse to look at what really has happened. The people in the state prison system don't have any rights. They are locked up."
Some question whether the age-old debate about civil rights misses the point.
Mike Summers, a police officer in Sacramento, wonders what freedom means to people so severely mentally ill that they sleep in their own feces. His job is to reduce the number of mentally ill homeless people who end up in Sacramento's jail. The people on his "beat" huddle under bridges and dine from Dumpsters. To vanquish their demons, they consume booze and dope. They are arrested for assault, vagrancy, shoplifting.
"Has the pendulum swung so far that people have the right to die of some disease? To be eaten by rats in some alley?" Summers asks. "The people we see are very ill. We bring them in, they let them out. We bring them in, they let them out. It just goes round and round and round."
Patients' rights laws
About 2.3 million adult Americans suffer from bipolar disorder, also known as manic depression. Another 2.2 million are afflicted with schizophrenia, an even more debilitating illness that causes sufferers to hear voices, experience delusions and lose the ability to distinguish fantasy from reality. They are two of the most severe brain disorders, and there is no known cure for either. But both are treatable with medication, and new drugs offer many patients more hope than ever that they can live normal lives.
Yet fewer than half of those who suffer from these illnesses get the right treatment, according to the U.S. Surgeon General's 1999 report on mental health. The chronically underfunded mental health system is a big part of the reason.
But some people simply refuse treatment. Drugs don't always work, and side effects are significant. Clozaril, used for treatment-resistant schizophrenics, also causes enormous weight gains. Margaret Mary Ray gained 200 pounds before she stopped taking it.
Others forgo treatment because they don't know they're sick. Psychiatrists call this a "lack of insight." One of the symptoms of mental illness is the brain's inability to recognize it's ill.
"You can create the most beautiful treatment situation in the downtown Hilton hotel and give out free coffee and free cigarettes, but people will not accept medication if they don't think they're sick," says E. Fuller Torrey, a psychiatrist who heads the Treatment Advocacy Center in Arlington, Va., which campaigns for tougher commitment laws. "That's why people with severe mental illness must be treated involuntarily."
Yet the words "involuntary commitment" still conjure up a dark history.
Until the 1960s there were few treatment options, so many mentally ill people were kept in big, state-run mental institutions. Some were lobotomized and sterilized and never let out. At the peak of the institution era, in 1955, there were 558,922 mental patients hospitalized in the country.
The development of tranquilizers and anti-depressants gave rise to hope for treatment, instead of warehousing. In 1963, President Kennedy launched an effort to close mental hospitals and return patients home as outpatients. But funding for community-based care never materialized. As hospitals closed in the 1970s and the 1980s, the mentally ill were left to wander the streets.
Meanwhile, as hospital abuses were exposed, all 50 states drafted laws protecting the right of patients to make their own decisions about treatment. Under these laws, states could detain a mentally ill person only if he was dangerous or suicidal, or unable to scrounge for food and clothes. California's law, passed in 1967, limits involuntary confinement to six months for those who meet the state test.
One family's frustration
Rodger Gambs never met that test.
He was diagnosed with schizophrenia in 1990, when he was 18. His parents say they initially had no notion of what was about to consume a decade of their family's life.
When Rodger's illness set in, his parents noticed him doing "funny things." He talked to trees. He took up nocturnal wandering. He called the voices in his head "aliens," and asked his father to help escort them out of the house.
He took medication and saw a psychiatrist for a year. Then he stopped, and began, as is common, "medicating" himself with booze and street drugs. He was arrested many times for petty crimes: vagrancy, trespassing, traffic violations. But none of these acts was sufficiently serious to trigger court-ordered treatment. "We were always asking for treatment," Rae Belle says. "They were always fining him."
Over five years, the Gambses called the county crisis team so often it stopped coming to the house. There were repeated court hearings to determine whether Rodger was dangerous, suicidal or gravely disabled. He was not. County medical professionals advised the Gambses to evict Rodger so he would deteriorate enough to qualify for involuntary commitment to the county mental ward. Instead, he simply became homeless. The Gambses took him back in.
He stole the two guns from his father's locked closet in April 1998. By then, his psychotic episodes had become increasingly bizarre. He explained to his parents that he needed the guns to ward off blood-sucking vampires that lived in the back yard. Then he raised the stakes: He said he thought his parents might be vampires.
Now, surely he was dangerous in the eyes of the state. But a county hearing officer said no. Desperate, the Gambses took the advice of a sympathetic police sergeant. They filed criminal theft charges. Their complaint led to three felony weapons charges with a maximum sentence of four years in prison.
Rodger was kept isolated in the county jail in a padded cell, known as a "rubber room," for four months. He also was provided a court-appointed attorney. This gave the Gambses a new concern: What if he wanted a trial instead of treatment?
The Gambses hired a lawyer to negotiate with the prosecutor, the public defender and the judge. After three months, all agreed that Rodger needed treatment, not prison time.
One hurdle stood in the way, another reminder that nothing comes easy in trying to treat mental illness. Under California law, a plea of "not guilty by reason of insanity" required Rodger -- who for years had insisted that he was not mentally ill -- to tell a judge he was insane.
If he refused, he'd go to prison. With Rodger, there was always that chance. But the Gambses got lucky: Rodger complied.
He spent the winter of 1998-99 at Atascadero State Hospital, a 1,000-bed facility for mental patients in California's criminal justice system. It is the largest facility of its kind in the world, and plans to add 258 beds to accommodate the growing population. In Spanish, atascadero means mudhole, and there are many who find the translation apt. But Rodger seemed to find his footing.
He was discharged that spring into California's highly successful conditional release program, which requires him to follow a prescribed treatment or return to Atascadero. In many ways, it is the criminal justice system's version of court-ordered treatment.
Thomson says she will try again this year to pass a bill setting up court-ordered treatment for outpatients. The odds, she says, are long.
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