The Noonday Demon (69 page)

When I met with Senator Domenici, joint sponsor of the Mental Health Parity Act, I laid out for him the anecdotal and statistical information I had collated, and then I proposed fully documenting the tendencies that seemed so obviously implied by these stories. “Suppose,” I said, “that we could put together incontrovertible data, and that the questions of bias, inadequate information, and partisanship could all be fully resolved. Suppose we could say that sound mental health treatment for the severely depressed indigent population served the advantage of the U.S. economy, of the bureau of Veterans Affairs, of the social good—of the taxpayers who now pay cripplingly high prices for the consequences of untreated depression, and of the recipients of that investment, who live at the brink of despair. What, then, would be the path to reform?”

“If you’re asking whether we can expect much change simply because that change would serve everyone’s advantage in both economic and human terms,” said Domenici, “I regret to tell you that the answer is no.” Four factors block the development of federal programs to achieve care for the indigent. The first, and perhaps the most formidable, is simply the structure of the national budget. “We are now niched with programs and program costs,” Domenici said. “The question we must confront is whether the program you’re describing is going to grow and
require new funds, not whether there’ll be some overall savings for the Treasury of the United States.” You can’t immediately reduce other costs: you can’t in one year take the money out of the prison system and out of welfare to pay for a new mental health outreach service, because the economic advantages of that service are slow to accrue. “Our evaluation of medical delivery systems is simply not outcome-oriented,” Domenici confirmed. Second is that the Republican leadership of the U.S. Congress does not like to give directives to the health care industry. “It would be a mandate,” Domenici said. “There are people who would support this kind of legislation at every level but who are ideologically opposed to mandating states, mandating insurance companies, mandating anyone.” Federal law, the McCarran-Ferguson Act, makes the administration of health insurance a states’ issue. Third is that it is difficult to get people elected for limited terms to focus on long-range improvement of the social infrastructure rather than on the quick spectacle of immediately visible effects on the lives of voters. And fourth is that, in the sad and ironic words of Senator Wellstone, “This is a representative democracy we’re living in. People defend the causes their voters care about. Indigent, depressed people are at home in bed on Election Day with the covers over their heads—and that means they don’t have much representation up here. The indigent depressed are not what you’d call an empowered group.”

It is always strange to go from intense experiences with an utterly disenfranchised population to intense experiences with a powerful one. I was as much stirred by my conversations with members of Congress as I had been by my conversations with the indigent depressed. The subject of mental health parity cuts straight across party lines; Republicans and Democrats are, in Domenici’s words, “in a bidding war to see who loves the NIMH more.” Congress consistently votes more money to the NIMH than is provided in the budget; in 1999, President Clinton allowed $810 million; Congress, led by Representative John Porter, the extremely capable chairman of the subcommittee on appropriations, who is in his eleventh consecutive term in Congress and who is a big fan of basic scientific research, raised that figure to $861 million. For calendar year 2000, Congress increased funding for the Community Health Services Block Grant by 24 percent, bringing it to $359 million. The president asked his personnel office to make concessions to people with mental illness who are seeking employment. “If we’re going to be compassionate conservatives,” Roukema said, “we might as well start here.” Every significant mental health bill has had Democratic and Republican sponsorship.

Most of the people who battle for the mentally ill in Congress have stories
of their own that have brought them to this arena. Senator Reid’s father killed himself; Senator Domenici has a schizophrenic daughter who is very ill; Senator Wellstone has a schizophrenic brother; Representative Rivers has a severe bipolar disorder; Representative Roukema has been married now for almost fifty years to a psychiatrist; Representative Bob Wise was swayed to enter public service by a college summer spent working in a psychiatric ward, where he developed relationships with mentally ill patients. “It shouldn’t be this way,” Wellstone said. “I wish I’d gained my understanding of this subject solely through research and ethical inquiry. But for many people, the problems of mental illness are still utterly abstract, and their urgency becomes apparent only through intense involuntary immersion in them. We need an education initiative to pave the way for a legislative one.” When the 1996 parity act was heard on the Senate floor, Wellstone, who speaks of the mentally ill as compassionately as though he were related to all of them, stood before Congress and, in a breathtakingly eloquent speech, described his own experiences. Domenici, who is by no means a sentimental man, gave a shorter exposition of his experience, and then a few other senators came down to the floor and told stories of their own friends and relatives. That day in the Senate was more like EST than a political debate. “People came up to me before the vote,” Wellstone recalled, “and said, ‘This really really matters to you, doesn’t it?’ I said to them, ‘Yes, it matters more than anything.’ That’s how we got the votes.” It was from the start more a symbolic act than one that could bring about major change, because it left the decision on whether to increase overall cost of treatment in the hands of the insurers. It did not improve the quality of care for patients.

Community health programs, most of which retrenched with cuts in the late nineties, are regularly blamed for the violent actions of those who are supposed to be under their care; if they could keep everyone quiet, they would, by the standards of much of the world, be doing their job. Their inadequacies in protecting the healthy from the ill win them excoriation in the press. The question of whether they are serving the interest of the well is often examined; whether they are helping their target community seldom comes up. “Huge numbers of federal tax dollars are going to these programs,” Representative Roukema said, “and there is strong evidence that the money is being diverted into all kinds of irrelevant local projects.” Representative Wise described the Clinton health care debate of 1993 as “a depressing experience in and of itself” and said that the NIH is not providing the concrete information that would show local chambers of commerce why universal parity would be to their advantage. Community mental health clinics, where they do exist, tend to focus on relatively uncomplicated conditions such as divorce. “They should be for
giving out medication and for follow-through and for verbal counseling for a full range of complaints,” Representative Kaptur said.

Institutionalization is a point of contention between a legal community that supports civil liberties and a social-work and legislative community that sees people who are crazy and suffering and feels that it is criminal not to intervene. “Civil libertarians who take extreme views on this matter are both incompetent and inconsequential,” Roukema said. “Under the guise of civil liberties, they’re inflicting cruel and unusual punishment on people despite the fact that society has science that can make a better way. It’s cruelty; if we were doing that to animals, the ASPCA would be after us. If people don’t take their medication and follow through with their treatment, maybe it should be mandated that they be reinstitutionalized.” There are precedents for such policies. The treatment of tuberculosis is one such example. If someone has TB and is not disciplined enough to take the right medications at the right times, in some states a nurse will actually go out and find him and give him his isoniazid every day. Of course TB is communicable and, uncontained, can mutate and cause a public health crisis; but if mental illness is dangerous to society, intervention may be rationalized on the TB model.

Involuntary-commitment laws were the great issue of the 1970s, during the heyday of the institution. These days, most people who want treatment have trouble getting it; large institutions are closing down; and short-term-care facilities push out people who are not yet ready to face the world on their own. “The reality,” the
New York Times Magazine
said in the spring of 1999, “is that hospitals can’t get rid of [patients] fast enough.” While all this is happening, however, there are also people who are being incarcerated against their will. It is better, where possible, to seduce people into treatment than to force them into it. Further, it is important to come up with universal standards on the basis of which force may be used. The worst abuses have occurred when unqualified or malignant individuals have assigned themselves the power to judge who is ill and who is not and have incarcerated people without due process.

You can be hospitalized in an institution with open doors. Most of the patients at long-term-care facilities are free to walk down the driveway and off to the streets; only a limited number are on twenty-four-hour supervision or in forensic units. The contract between a care facility and its denizens is voluntary. Legal scholars tend to favor letting people run their own lives even if they run themselves into destruction, while psychiatric social workers and anyone else who has actually dealt closely with the mentally ill tend to be interventionist. Who is to decide when to give someone the liberty of his mind and when to deny it? Broadly
sketched, the view of the right is that crazy people must be locked away so that they don’t drag down the society—even if they don’t pose an active threat. The view of the left is that no one should have his civil liberties infringed on by people who are acting outside of primary power structures. The view of the center is that some people do need to be brought into treatment while others do not. Because resistance to diagnosis and despair about a cure are among the symptoms of mental illness, involuntary commitment continues to be a necessary part of treatment.

“You need to treat these people as people, to respect their individuality, but to connect them up to the mainstream,” Representative Kaptur explains. The American Civil Liberties Union (ACLU) takes the moderate position. It has published a statement that “the freedom to be wandering the streets, psychotic, ill, deteriorating, and untreated, when there is a reasonable prospect of effective treatment, is not freedom; it is abandonment.” The problem is that the choice is too often between total commitment and total abandonment: the present system is predicated on categorical psychosis and grossly lacks the intermediary-care solutions most depressives require. We must check out the people who gibber on our streets, assess the fluctuations of their suicidality, determine their potential danger to others—and then attempt to predict who, after resisting a cure, will upon recovery be grateful that the cure was thrust upon him.

No one really wants to be depressed, but some people do not want to be made well as I would define
well.
What options should they have? Should we let them withdraw into their illness? Should we pay the social expense of such withdrawal? Through what due process should we determine these matters? The potential for bureaucracy is terrifying, and the delicate negotiation of who needs what will never be well resolved. If one accepts that perfect balance will be impossible, one must assume that we have two options: to imprison some people who should be free, or to free some people who will destroy themselves. The question, really, is not so much
whether
treatment should be foisted on people as
when
it should be foisted on them and by
whom.
I cannot look at this problem and turn away from Sheila Hernandez, the poor HIV-positive woman who fought against her imprisonment at Hopkins, who wanted to be left free to die—and who is now delighted to be alive and has her cell phone ringing every minute. But I am reminded also of the Korean boy with cerebral palsy, a patient with acute multiple disorders, including physical disabilities that prevent him from committing suicide, who is forced into a life in which there will be no happiness and from which he is not permitted to escape. Despite much pondering and consideration, I cannot find the right answer to this question.

The problem of aggression has spawned defensive laws; though few depressives are violent, they are in the purview of schizophrenia’s legalities. The mentally ill are a diverse body, and the monolithic approach to mental illness laws causes intense suffering. Since the landmark 1972 action against Willowbrook, an institution for the mentally retarded that was, among other things, doing experiments on uninformed patients, the policy of providing the “least restrictive placement” possible has held sway. While the mentally ill may be deprived of rights because of their aggressive behaviors, they also lose out on rights because the state assumes
parens patriae
power, taking a protective position, much as it does toward minors. The ACLU does not believe that
parens patriae
should be extended, and certainly the idea of
parens patriae
was abused in places such as the Soviet Union; it is a phrase too much associated with paternalistic police power. But how much suffering should be supported in defense of such a legal principle?

The Treatment Advocacy Center (TAC), based in Washington, D.C., is the most conservative body on treatment, and its position is that people should be incarcerated even if they do not pose a clear and present danger. Jonathan Stanley, the assistant director of the center, complains that it is only the criminal element that is receiving treatment. “People will pay a whole lot more attention to a one-in-two-million chance that they’ll be pushed under a subway than they will to a one hundred percent chance that they’ll run into twenty psychotics on a given day in Central Park.” For Stanley, deinstitutionalization was the unfortunate result of civil libertarians’ defending the “wrong” people while the government went wild about cutting costs. Deinstitutionalization was supposed to translate into a diverse range of care in the community, but nothing of the sort has occurred. The consequence of deinstitutionalization has been the disappearance of a multitiered system of treatment in which people are gently shoehorned back into their communities: far too often, patients are in for total incarceration or they’re out on their own. The idea of providing a full social-work force to ease people from despair to high levels of functioning has not yet caught on in government circles. The TAC has strongly backed legislation such as Kendra’s Law, a New York act that allows suits to be brought against mentally ill people who fail to take their medications, criminalizing the ill. Depressed people are taken to court, fined, and then are released again into the streets to fend for themselves, since there is no room or budget for providing more extensive treatment. If they cause too much trouble, they are incarcerated as criminals: the result of deinstitutionalization has in many instances been to shift people from hospitals to prisons. And in the prisons, where they receive inadequate and inappropriate treatment,
they cause a terrific amount of trouble. “No one else,” Stanley maintains, “wants a good mental health system so much as a jailer does.”