‘Rights’ Leave Mentally Ill Families in Legal Limbo: Oped by Beth Barber

A paranoid schizophrenic who drifted in and out of reality, in and out of hospitals, in and out of compliance with his medication regime, walked into the Capitol a year ago and killed two security officers.

Rusty Weston is now in a federal corrections unit in North Carolina. He awaits a court decision on whether corrections officials can force him to take his medication.

If the court says yes, Weston may become competent enough to stand trial for the murders.

If the court says no, rejecting medication may well free Weston from trial and conviction. It won’t free him from the prison of his disordered mind.

What kind of system waits to invoke mandatory medication until a man so severely ill has killed two people? The kind that insists on presuming that an irrational man makes rational decisions about his mental-health care. The kind that then fails both the incompetent and the innocent.

Had Weston been consistently on medication, odds are two lives would have been saved, and a third spared legal and mental limbo.

Rusty Weston was and is among that 40 percent of the 3.5 million Americans with schizophrenic or bipolar disorders whose illness goes untreated on any given day.

He is among the relatively small but growing number of untreated mentally ill who commit an estimated 4.3 percent of the nation’s homicides each year.

That’s not because nobody cares. It’s not because no effective treatment involving drugs and psychotherapy exist. According to the National Alliance for the Mentally Ill, “the success rate for treating severe mental illness – once access is secured – is relatively very high: 80 percent for bipolar disorder, 65 percent for major depression and 60 percent for schizophrenia, compared to 45 percent for heart disease.”

It’s because these severe disorders interfere with that portion of the brain which tells people they are ill, yet most minions of the law presume them competent to direct their own care; in fact, presume their right to do so.

A “right” to be dysfunctional, delusional, even dangerous? A “right” to refuse medication essential to function, even with due-process safeguards against reversion to Nurse Ratched?

Like the Bedlam of old that it was intended to supplant, that “right” of refusal leaves thousands of the severely mentally ill to their own devices and demons, but on the streets instead of in dungeons.

You don’t have to be mentally ill to be homeless, but it helps.

Some 35 percent to 45 percent of the homeless have a history of severe, untreated mental illness. That makes SMD – severe mental disability – the second-most-prevalent cause of homelessness, according to Dr. E. Fuller Torrey, a clinical and research psychiatrist specializing in severe brain disorders.

That percentage translates to about 200,000 Americans. And that, Torrey notes, is “twice as many severely mentally ill individuals as are presently hospitalized in state psychiatric hospitals.”

Some 200,000 more Americans with serious brain disorders – about a tenth of the nation’s incarcerated population – are in jails and prisons, their offenses slightly more likely to have been violent than other inmates’.

Bedlam, the street, prison: These aren’t the only choices for alleviating the dismal consequences of decades of deinstitutionalization of the mentally ill.

But the middle ground, the community-based facilities licensed to provide housing and mental-health services, hasn’t been the answer advocates of deinstitutionalization sought.

Why the dismal results? Lack of funding, the mental-health community insists. But the federal government spent $38 billion in 1994 on services for the mentally ill. Last year, the Cuyahoga County Mental Health Board spent $75 million, at least $3.7 million of it on services to the homeless. That’s not peanuts.

A fortunate few seem to benefit.

Mental Health Services, an agency under contract to Cuyahoga County, runs two shelters for the severely mentally ill who cannot handle typical shelters and rules, who require a “low-demand, low-expectation” environment.

According to its annual progress report for November 1997 to November 1998, 36 homeless people were referred to MHS. Eleven entered the program. For various reasons – recent violence, substance abuse, more appropriate care elsewhere, lack of vacancies – 15 did not enter the program. Ten refused to participate.

MHS is a caring, professional outfit that boasts some “phenomenal successes” in outreach to the homeless mentally ill. Among them is the homeless woman who filled her days filling her grocery cart with road kill. After six years of gaining her trust, the MHS team persuaded her to substitute stuffed animals for the carcasses.

Six years? Only given the aversion of the law to mandatory medication, and of professionals who helped write and interpret it, is that a success.

Most states, including Ohio, have laws that permit involuntary hospitalization and treatment under certain narrow circumstances; that is, generally when a person is a danger to himself or others.

Some states, including Ohio, have laws permitting outpatient commitment; that is, conditioning the mentally ill person’s freedom in society on taking the medication that keeps him functional.

But such laws are seldom used, even as the last resort they are intended to be. By the same token, rules governing caretakers of the mentally ill prescribe in excruciating detail how medication may and, more to the point, may not be given.

That approach suffices for many of the mentally ill. Yet, Torrey and others note, those most resistant to taking medication are the likeliest to need it most.

Those most likely to become dangerous are those most often caught in the cycle of short hospitalizations with medication and long days on the street without it.

According to a Duke University study, those clients under a North Carolina court order to take medication as outpatients experienced fewer psychiatric admissions, fewer days in the hospital and fewer episodes of violence.

Yet the emphasis remains on getting the mentally ill homeless housed, preferably in their own apartments or in group homes with varied levels of supervision. Even there, however, shades of Bedlam hover.

New York, Vancouver, Seattle and other cities have reported much success housing scores of the mentally ill in an apartment building offering varying levels of supervision. Still, official reluctance here and elsewhere to house more than a handful in a group home makes buying properties, hiring staff, monitoring client conduct more cumbersome and costly than need be.

According to the Ohio Department of Mental Health, a federal rule that residents in facilities for 16 or more are ineligible for Medicaid discourages larger facilities.

The official refusal to mandate a medication component of treatment not only contributes to the NIMBY response of neighbors. It impedes the success of group homes and, most important, decreases the well-being of the mentally ill themselves.

“Until the problem of involuntary treatment is addressed at the state level,” Dr. Torrey told a congressional hearing, “there will be no appreciable decrease in homeless individuals with severe psychiatric disorders, no matter what housing programs are provided.”

The effort to change that emphasis has been only slightly less uphill than the course of Sisyphus’ rock. But those pushing are building muscle.

New York’s legislature is considering “Kendra’s law,” named for a woman killed when an untreated schizophrenic with a recent history of 13 violent episodes pushed her under a subway train. It would permit outpatient commitment.

North Carolina’s mental health director has requested legislation to allow physicians to recommit the severely mentally ill who stop taking their medication.

Illinois law allows “advance directives” (or “proxy directives”) in which patients – or, in some cases, their doctors – name someone else to decide their care if they are incapacitated. The Ohio Department of Mental Health has a working group researching advance directives.

But a Vermont law on directives is being challenged as inconsistent with the Americans with Disabilities Act. And a countermovement among lawyers and mental-health professionals also lobbies against them.

With the laws on advance directives in flux, they cannot replace court-ordered outpatient commitment. As Jerry Dincin, the executive director of Illinois’ largest psychiatric rehabilitation center, wrote in the Chicago Tribune after a scary episode last month, “How many experiences with mayhem must we have before we help mentally ill people take their medications?”

Opponents of involuntary outpatient commitment point out that predicting who will be dangerous is dicey.

So is predicting who won’t be.

And why presume that danger to self and others must be the only criterion for involuntary outpatient commitment?

The policy adopted and recommended by the National Alliance for the Mentally Ill includes strict due-process provisions. But it also proposes that states add three standards for involuntary commitment or court-ordered treatment that are “broader, more flexible” than “imminently” or “provably” dangerous: grave disability, substantial deterioration or lack of capacity.

NAMI also recommends that “court-ordered outpatient treatment … be considered as a less restrictive, more beneficial and less costly treatment alternative to involuntary inpatient treatment.”

It can save time in treating incapacitated patients, and time saved is money saved to meet related needs of the mentally ill.

Beyond a roof, food, therapy and education for the mentally ill lies the prospect of a life with family, friends, school, work; liberty from the imprisonment untreated illness imposes; and the pursuit of happiness untreated illness denies. That, most of all, is the reason for such commitment: to save many a family’s helpless anguish, and many a patient’s sanity.

The Cleveland Plain Dealer August 8, 1999

Reprinted with permission. Copyright 1999 The Cleveland Plain Dealer. All rights reserved. EDITORIAL