President’s New Freedom Report on Mental Illness: Four Criticisms

National Review
July 29, 2003
Reprinted with permission of the authors. All rights reserved

Commission’s omission

The president’s mental-health commission in denial

By Sally Satel and Mary Zdanowicz

Last week, the president’s New Freedom Commission on Mental Health released its much-awaited report, “Achieving The Promise: Transforming Mental Health Care in America.” President Bush had charged the 22-member group with making a “comprehensive study” that would “advise [him] on methods of improving the system.”

Unfortunately, the report is woefully incomplete. The commission did not take on the most difficult cases.

Andrew Goldstein was a hard case. In 1999 the 29-year-old New Yorker killed Kendra Webdale by pushing her in front of a subway train. Goldstein suffered from schizophrenia and according to his court-appointed attorney had stopped taking his antipsychotic medication. Every year thousands of people with psychotic illnesses stop taking their medications; often because they do not even think they are ill.

They do not all murder, of course, but the consequences are dire nonetheless. Severe and persistent mental illness is a factor in 10-15 percent of violent crimes, according to a 2000 Lewin Group report. This rate is much higher than the two percent of people with a psychotic condition (schizophrenia or manic-depressive illness) in the population and the incidents occur most often because they are untreated. They swell the ranks of the homeless and incarcerated as well. Taxpayer costs aside, the human toll is staggering.

The commission, however, ignored this hard-to-treat group. Instead it focused on “consumers” — the politically correct word for psychiatric patients — who are willing and able to make use of treatments, programs, and opportunities. The commission even prided itself on soliciting testimony revealing that “nearly every consumer…expressed the need to fully participate in his or her plan for recovery.” But they did not hear from the sickest silent minority that is languishing in back bedrooms, jail cells, and homeless shelters. They are too paranoid, oblivious, or lost in madness to attend hearings, never mind testify.

Dubbing its vision the “recovery model,” the commission believes that sufficient therapy, housing options, and employment programs will enable people with schizophrenia or manic-depressive illness to take charge of their lives. Many will, it’s true. But thousands won’t. Over half of all untreated people with a psychotic illness do not acknowledge there is anything wrong with them. These people aren’t avoiding treatment because services are unattractive (though many are indeed dismal) or because of “stigma,” as the report repeatedly claims, but because they don’t even know they need care in the first place.

The problem with the recovery vision is that it is a dangerously partial vision. It sets up unrealistic expectations for those who will never fully “recover,” no matter how hard they try, because their illness is so severe. What’s more, exclusive emphasis on recovery as a goal steers policymakers away from making changes vital to the needs of the most severely disabled.

One long-overdue change is helping those who need intensive long-term institutional care. Not only does the report fail to recognize the paucity of psychiatric hospital beds, it ignores a blatantly discriminatory aspect of federal law. The Medicaid Institutions for Mental Disease (IMD) exclusion law prevents states from receiving federal reimbursement for facilities with more than 16 beds, simply because its residents are treated for psychiatric disorders.

It is a policy with devastating consequences, especially considering the condition of state budgets. Just last month, the IMD exclusion forced the closure of several beds for mentally ill felons in Miami who may now be forced to live under far less-supervised conditions.

The commission also neglected to advise the president on how to manage severely mentally ill people who stop taking their medications. There was no mention, for example, of proven strategies, such as assisted outpatient treatment (civil court-ordered community treatment), which is often necessary for those who have a reliable pattern of spirally into self-destruction or dangerousness when off medication. The commission’s hesitancy to address this treatment mechanism is especially odd given the results from instituting such measures. For instance, in New York, of those placed in six months of assisted outpatient treatment, 77 percent fewer were hospitalized, 85 percent fewer experienced homelessness, 83 percent fewer were arrested, and 85 percent fewer were incarcerated.

Doubtless the timid commission was afraid of censure from mental-health groups who reflexively charge civil-liberties violations at the slightest hint of coercion. But in fact, anti-psychotic medication, even when taken by a resistant patient, restores personal liberty, freeing him to make his own decisions again. Studies consistently show that the majority of patients initially treated without their consent agree with the decision when asked about it in retrospect. Newer mental-health courts, another coercive option, use judicial persuasion and the threat of jail to keep minor offenders with psychosis in treatment and on medications at least long enough for them to make informed decisions about treatment.

Last, we come to the matter of stigma. The commission thinks that irrational fear and disapproval of the mentally ill explain public indifference to their welfare. While many are indeed fearful their attitudes are not inexplicable — they come from reading lurid headlines or dodging menacing or hallucinating individuals on the street. “The perception of people with psychosis as being dangerous is stronger today than in the past,” according to the 1999 U. S. Surgeon General’s Report on Mental Health. Unfortunately, the logical conclusion eluded the commission — stigma will continue unabated until we stem threatening and erratic behavior.

Despite our dismay, the commission got many things right. Among them it urged integration of funding agencies, medical, and social services. It promoted evidence-based treatments and programs and condemned the awful double bind in which many are forced to remain on meager disability income because taking on paid work would mean losing Medicaid coverage.

These recommendations, while solid, are not enough to help a deeply troubled system recover. Ever since deinstitionalization began closing doors to state hospitals in the late 1950s, we have abandoned the sickest of the mentally ill to the streets and jails. Four decades later, the commission opted for the safe route and abandoned them as well.

— Sally Satel, M.D. is at the American Enterprise Institute. Mary Zdanowicz is a lawyer and executive director of the Treatment Advocacy Center in Arlington, VA.

Leaving the mentally ill out in the cold

By E. Fuller Torrey

The report of President Bush’s Commission on Mental Health, appointed to take stock of the nation’s broken mental health system and “to recommend improvements,” is a tremendous disappointment. True, the report, released in July, acknowledges that the system is “fragmented, disconnected and often inadequate,” and it rightly notes that nearly half of all homeless people have “had a mental health problem within the previous year” and that the nation’s prisons and jails teem with inmates suffering from serious mental illnesses. But as Yogi Berra might well have commented, this is “déjà vu all over again”: President Carter’s mental health commission made similar points 25 years ago. In fact, the 2003 report, reflecting the misguided thinking of Washington’s mental health establishment, fails to gauge the full extent of the mental health system’s crisis, and its 19 recommendations are a hodgepodge of boilerplate and evasion. All that saves the report from being a total waste is a hint that suggests a better way forward.

Read through the report and you quickly discover just how many of its recommendations are mere platitudes, crafted to patch over disagreements within Washington’s fractious mental health community over such controversies as compulsory treatment and the legitimate purview of “mental health.” We must “promote the mental health of young children,” the report declares, as if anybody would object to such a goal. Or: we need to “create a comprehensive state mental health plan”—neglecting to mention that states already must have such plans in place in order to qualify for federal mental health grants.

Other proposals are marvels of evasion. For example, the commission calls for a national campaign to “reduce the stigma” of mental illness, without addressing what multiple studies (and common sense) show to be the main cause of that stigma: untreated mentally ill individuals committing acts of violence—from pushing subway commuters into the path of oncoming trains, as has happened time and again in New York in recent years, to shooting the president, as John Hinckley did in 1981. The psychiatrically disabled—less than 1 percent of the U.S. population—commit 1,000 murders a year in America, 4 to 5 percent of the nation’s total yearly homicides.

The commission says nothing about such incidents because it is politically incorrect within the psychiatric community to link violence with mental illness. These are “isolated incidents,” mental health professionals like to say, and focusing on them itself leads to stigmatizing the mentally ill. But this ostrich-like response doesn’t make the problem go away. The typical citizen is well aware that untreated mentally ill individuals can be dangerous, whether professionals want to speak about it or not. All he needs to do is open his morning paper. To try to combat stigma without dealing with the violence committed by the mentally ill is like trying to control a flood without finding out where the water is coming from.

Aversion to unpleasant truths mars the report in other areas too. The commission frequently emphasizes that mental health “consumers” should be able to “choose their own programs” in a system based on their “needs and preferences.” That’s fine for the 50 percent of individuals with schizophrenia or manic depression (the two diseases that make up most severe mental illness) who are aware that they are sick. But research shows that the other 50 percent suffer from an impairment in brain function that interferes with self-awareness. Such individuals rarely seek treatment or accept medication voluntarily, since they don’t think that there is anything wrong with them. They make up the vast majority of the 35 percent of the homeless and 16 percent of the incarcerated who are mentally ill.

For such individuals, mandatory treatment laws are essential—laws that require severely mentally ill people to comply with their treatment and take the medication that keeps their symptoms under control or else to face forced hospitalization. These laws protect both society and patient. Since New York passed “Kendra’s Law” in 1999—mandatory treatment legislation named after receptionist Kendra Webdale, hurled to her death under a New York City subway train by a man suffering from untreated schizophrenia—the state has seen a 77 percent decline in hospitalizations for mental illness, 85 percent fewer arrests of mentally ill individuals, and a substantial drop in the number of mentally ill homeless. Under New Hampshire’s coercive-treatment law, episodes of violence by the mentally ill have plummeted 81 percent. Many states now have such laws on the books.

Yet despite mandatory treatment’s proven effectiveness, the president’s commission makes no mention of it—or, for that matter, of the self-awareness problem. The mental health establishment whose mindset dominates the commission remains under the sway of the 1960s-bred horror of coercive treatment as an infringement of the “rights” of the mentally ill. To which psychiatrist Darold Treffert offers the perfect rejoinder: “What kind of ‘freedom’ is it to be wandering the streets severely mentally ill, deteriorating, and getting warmth from a steel grate or food from a garbage can?” That’s not freedom, Treffert rightly says, “that’s abandonment.”

Perhaps the commission’s most glaring weakness, however, is its failure to confront directly the irrational and counterproductive way the nation funds the mental health system. Nobody can plausibly claim that the system lacks money. When the first President’s Commission on Mental Health issued its report in 1961, the nation spent approximately $1 billion a year on mental health care. Converted to today’s dollars and allowing for the increase in population over the last four decades, that would work out to roughly $8 billion in 2003. Yet in 1997 alone, the U.S. spent $71 billion on “treating mental illness”—nearly nine times more in constant dollars than in 1961. The amount spent is swelling at the rate of $3 billion a year, alarming even by federal budget standards. Given the “often inadequate” treatment of the mentally ill that the commission mentions, though, it’s clear that this largesse hasn’t done much good.

Part of the reason is the outdated ideas of the psychiatric community. But government bureaucracy bears much of the blame too. Federal officials at the Baltimore headquarters of the Centers for Medicare and Medicaid Services dole out two-thirds of that $71 billion and decide what services to fund. These bureaucrats lack adequate knowledge of local conditions and resources, which vary widely from place to place, and they have had no reliable way of determining whether a program actually helps patients or is cost-effective—a recipe for inefficiency and waste. (See “Reinventing Mental Health Care,” Autumn 1999.)

It wasn’t always this way. Back in the early sixties, state governments paid 98 percent of the total cost of the mental health system. But the states soon discovered that, by closing down beds in state psychiatric hospitals, they could shift the burden of paying for psychiatric patients to four federal programs that, from the 1960s on, offered benefits to mentally ill individuals, but only if they were not receiving care in a state mental hospital—Medicaid, Medicare, Supplemental Security Income, and Social Security Disability Income. In a classic example of unintended consequences, these federal programs, originally designed to give a little help to newly deinstitutionalized mentally ill patients, soon took over the primary responsibility for funding the whole system. No longer did mental health officials ask, “What is best for patients?” The question now became, “What will the federal government pay for?”

The consequences for the mentally ill have been grim. State mental institutions, under pressure from state governments to cut costs, released scores of patients who should have remained hospitalized, and they had little incentive to find out what happened to them afterward. Many fell through the cracks of the system, landing in jail or on the streets. Making matters worse, the federal SSI and SSDI paychecks, worth $500 and $700 a month, respectively, went to patients with no strings attached, and often fueled drug or alcohol habits instead of treatment.

Yet though the President’s Commission on Mental Health says little about this perverse funding arrangement, its report does have hidden within it a signpost that points the way toward a better system. Crucially—though almost in passing—the commission says that the federal government should grant states “increased flexibility” in spending federal money on the mentally ill, “in exchange for greater accountability and improved outcomes.”

Here, truly, is ground for hope. Nothing would improve mental health care more swiftly than giving states not just greater flexibility—the commission is far too cautious—but as much control as is politically feasible in spending mental health–care dollars, and then holding them accountable by measuring various outcomes, which could include quality-of-life ratings by patients and their families, the number of homeless and incarcerated mentally ill, the employment rate of mentally ill people, quality of housing, and so on. The federal government would need to collect accurate data from the states in all these areas, woefully lacking at present. The feds would then reward states that did a good job by giving them more funding; states that let homeless mentally ill individuals use government funds to stay drunk and live on the streets would lose money. As a first step, federal officials could set up an experimental program in half a dozen states and analyze the results.

Local innovation, as the commission recognizes, has already created most of the nation’s best mental health programs. A prime example: the so-called clubhouse model, which originated with New York’s Fountain House. In these community facilities, mentally ill people can come together in a low-key, friendly atmosphere and receive vocational and social help. Clubhouse staff don’t prescribe medicine or provide therapy, but they do remind clients to take their medicine and are on hand to give guidance and encouragement. These inexpensive programs are a big success, as their clients’ high employment and low re-hospitalization rates prove.

Another example of an effective local initiative: Wisconsin’s Assertive Community Treatment teams. Each team consists of ten professionals or paraprofessionals, including a psychiatrist, linked to a hospital or community mental health center. Rather than wait for seriously mentally ill people to seek out treatment themselves, the teams search for the untreated in homeless shelters and jails, and get them on the right medication and treatment routine. The teams also visit recently released hospital patients to help them ease back into society. Thanks to its 120 ACT squads, Wisconsin has slashed re-hospitalization rates 90 percent.

Turning responsibility for mental health over to the states, while holding them accountable, would unleash many more such policy experiments, just as states that received waivers from the federal government to pursue welfare initiatives during the late 1980s and nineties came up with effective welfare innovations that set the stage for federal welfare reform.

If the commission had not been so timid and obsessed with mental health P.C., it might have made several additional recommendations. Treatment programs should give priority to patients with the most severe illnesses. After all, these are the individuals who, without treatment, wind up homeless, in jail, or bashing some stranger over the head with a brick.

SSI and SSDI benefits to mentally ill people should also be tied to compliance with a treatment plan, so that public money no longer subsidizes substance abuse. As for the seemingly inexorable swelling of those two programs, plus Medicaid and Medicare, it’s past time to freeze federal funds for treating mental illnesses, except for increases to keep up with inflation. The current yearly sum of $71 billion—if spent properly, instead of being wasted on counseling for the worried well and the administrative costs of managed care—is more than enough to provide decent care for all mentally ill Americans.

Another pressing need, unmentioned by the commission, is for a national database of individuals with severe mental illness who also have a history of dangerous behavior. Law enforcement personnel have become de facto frontline mental health workers in most communities and yet often must respond to situations in which they have no information on an individual’s mental status or dangerousness. Tragedy often ensues.

Finally, Congress should require that the National Institute of Mental Health dramatically increase the proportion of its funds (currently, about 28 percent) spent on research into the causes and treatment of mental illnesses. The failure of NIMH to support this kind of nuts-and-bolts research sufficiently for the past two decades in favor of studies on music aesthetics, public health, bird brains, and innumerable other trendy projects has reduced the number of effective new treatments available to schizophrenics and manic-depressives.

For a president committed to “compassionate conservatism,” there could be no better demonstration project than transforming the mental health system along these lines, which would go far toward rescuing the most desperate of our homeless population. Too bad his commission, for the most part anyway, didn’t see the opportunity.

Mistreating the mentally ill

By Rich Lowry

I encounter the mentally ill every day. I step over them on the sidewalks, I ignore their rantings, I look the other way when they rummage through the trash. I do this not because I’m hardhearted, but because I live in New York City, and there’s really no other choice. Anyone living in any major urban area in America probably does the same.

During recent decades, we have literally dumped severely mentally ill people onto our streets, abandoning them to their disease and delusions. This is a great national shame, hidden in plain view. On July 22, President Bush’s New Freedom Commission on Mental Health released a report that was an opportunity to address this neglect, but it, disgracefully, took a pass.

Most of the mentally ill roaming the streets are too sick to know they are sick. Roughly 50 percent of schizophrenics and those with bipolar disorder do not know they are mentally ill. Therefore, if seeking treatment is left as an entirely voluntary choice — as it has been in recent decades — these people will choose continued illness and misery.

Powerful forces oppose caring for the unwilling mentally ill: the American Civil Liberties Union, which maintains essentially that there is a right to be an untreated schizophrenic; the Scientologists, who hate psychiatry as a matter of faith; and “psychiatric survivors,” the formerly mentally ill who were treated involuntarily and are ideologically committed to keeping it from happening to anyone else ever again.

The president’s commission aped the language and concerns of this anti-involuntary treatment bloc, calling the mentally ill “consumers” and emphasizing the need for their participation in their “plans for recovery.” That’s fine, so long as the mentally ill people in question know they are ill.

The focus on “choice” fits with a long-running trend toward deinstitutionalization. In 1955, there were 559,000 people in state psychiatric hospitals. Today there are less than 50,000. If the situation in 1955 had held, adjusting for population growth, there would be more than 900,000 people in state hospitals today. Many of these people are out in their communities and doing fine, but others are living a nightmare on the streets or in jail.

There are some 450,000 homeless people in the United States, and about a third are mentally ill. Roughly 16 percent of prisoners in state and local jails have psychiatric illnesses. According to Dr. Fuller Torrey, president of the Treatment Advocacy Center: “The Los Angeles County jail, with 3,400 mentally ill prisoners, is de facto the largest psychiatric inpatient facility in the United States. New York’s Rikers Island jail, with 2,800 mentally ill prisoners, is the second-largest.”

Opponents of involuntary treatment maintain that the severely mentally ill would choose to get care if only mental health services were better. Nonsense. Says Torrey, “You could set up a suite in the local Hyatt with free coffee and cigarettes and these people would show up, but they still wouldn’t take their treatment.”

Opponents also argue that the “stigma” of mental illness keeps sick people from admitting that they need help. This is self-defeating nonsense. It is allowing mentally ill people to go untreated and roam the streets, free to do harm to themselves and others, that adds to the stigma of psychiatric disorders.

The severely mentally ill refuse treatment simply as part of their illness. The only answer is to treat them involuntarily, and there is a budding trend toward this solution in state laws. According to Sally Satel and Mary Zdanowicz, critics of the Bush commission’s work, “Studies consistently show that the majority of patients initially treated without their consent agree with the decision when asked about it in retrospect.”

There is no liberty in psychosis, and it is medication that offers mentally ill people true freedom. Unfortunately, the president’s commission lacked the moral courage to make a stark statement to this effect and recommend policies in keeping with it. Meanwhile, on street corners all over America, very sick people are left to rot.

Rich Lowry is editor of National Review, a TownHall.com member group.

TownHall.com

July 31, 2003

A crisis ignored

by E. Fuller Torrey

The report of President Bush’s Commission on Mental Health, appointed to take stock of the nation’s broken mental-health system and recommend improvements, is a tremendous disappointment. All that saves it from being a total waste is a hint that suggests a better way forward.

Two brand-new studies underscore the degree to which our jails have become our de facto mental-health care system: One in five of the 2.1 million Americans in jail and prison is seriously mentally ill, a report from Human Rights Watch says – outnumbering by far the mentally ill in mental hospitals. The other study, from the Correctional Association of New York, notes that one in four New York state prisoners in solitary confinement is mentally ill.

Yes, the commission report, among other acknowledgments of the systems failings, notes that the nation’s prisons and jails teem with inmates suffering from serious mental illnesses. But President Carter’s mental-health commission made similar points 25 years ago. Most of the report’s recommendations are mere platitudes (e.g.: We must “promote the mental health of young children”). Others are marvels of evasion.

For example, the commission calls for a national campaign to “reduce the stigma” of mental illness, without addressing what multiple studies (and common sense) show to be the main cause of that stigma: untreated mentally ill individuals committing acts of violence – from pushing subway commuters into the path of oncoming trains, as has happened time and again in New York in recent years, to shooting the president, as John Hinckley did in 1981.

The psychiatrically disabled (less than 1 percent of the U.S. population) commit 1,000 murders a year in America, 4 to 5 percent of the nation’s total yearly homicides.

The commission says nothing about such incidents; it is politically incorrect in the psychiatric community to link violence with mental illness. But the typical citizen is well aware that untreated mentally ill individuals can be dangerous, whether professionals want to speak about it or not. All he need do is open his morning paper.

Perhaps the commission’s most glaring weakness, however, is its failure to confront directly the irrational and counterproductive way the nation funds the mental-health system.

Nobody can plausibly claim that the system lacks money. When the first President’s Commission on Mental Health issued its report in 1961, the nation spent about $1 billion a year on mental-health care. Adjusted for inflation and population growth, that’s roughly $8 billion in 2003. Yet in 1997 alone, the United States spent $71 billion on “treating mental illness.”

Given the “often inadequate” treatment of the mentally ill that the commission mentions, though, it’s clear that this largesse hasn’t done much good.

It wasn’t always this way. Back in the early ’60s, state governments paid 98 percent of the total cost of the mental-health system. Then they discovered that, by closing down beds in state psychiatric hospitals, they could shift the burden of paying for psychiatric patients to four federal programs – Medicaid, Medicare, Supplemental Security Income, and Social Security Disability Income. (From the 1960s on, these offered benefits to mentally ill individuals, but only if they were not receiving care in a state mental hospital. )

No longer did mental-health officials ask, “What is best for patients?” The question now became, “What will the federal government pay for?”

The consequences have been grim. State mental institutions released scores of patients who should have remained hospitalized. Many fell through the cracks of the system, landing in jail or on the streets.

The President’s Commission on Mental Health says little about this perverse funding arrangement, but its report does have a hidden signpost pointing toward a better system: The commission says Washington should grant states “increased flexibility” in spending federal money on the mentally ill, “in exchange for greater accountability and improved outcomes.”

Here, truly, is ground for hope. Nothing would improve mental-health care more swiftly than giving states not just greater flexibility – the commission is far too cautious – but as much control as is politically feasible in spending mental health-care dollars, and then holding them accountable by measuring various outcomes. (These could include quality-of-life ratings by patients and their families, the number of homeless and incarcerated mentally ill, the employment rate of mentally ill people, quality of housing, and so on.)

The federal government would need to collect accurate data from the states in all these areas, woefully lacking at present. The feds would then reward states that did a good job by giving them more funding; states that let homeless mentally ill individuals use government funds to stay drunk and live on the streets would lose money. As a first step, federal officials could set up an experimental program in half a dozen states and analyze the results.

Local innovation, as the commission recognizes, has already created most of the nation’s best mental-health programs. A prime example: the so-called clubhouse model, which originated with New York’s Fountain House.

In these community facilities, mentally ill people can come together in a low-key, friendly atmosphere and receive vocational and social help. Clubhouse staff don’t prescribe medicine or provide therapy, but they do remind clients to take their medicine and are on hand to give guidance and encouragement. These inexpensive programs are a big success, as their clients’ high employment and low re-hospitalization rates prove.

Turning responsibility for mental health over to the states, while holding them accountable, would unleash many more such policy experiments, just as states that received waivers from the federal government to pursue welfare initiatives during the late 1980s and ’90s came up with effective welfare innovations that set the stage for federal welfare reform.

For a president committed to “compassionate conservatism,” there could be no better demonstration project than transforming the mental-health system along these lines, which would go far toward rescuing the most desperate of our homeless population. Too bad his commission, for the most part anyway, didn’t see the opportunity.

E. Fuller Torrey is an M.D. and president of the Treatment Advocacy Center in Arlington, Virginia. The article is adapted from the new City Journal.