“Postponement of intervention because of insurance restrictions does not result in savings,” Representative Marge Roukema (Republican, New Jersey) says emphatically. “You’re really building in greater costs.” The House has formed the Working Committee on Mental Health (after it was decided that a Working Committee on Mental Illness sounded dire), which is chaired by Representative Roukema and Representative Kaptur. Discussions in the Senate have been about parity as a civil rights issue. “I’m actually a marketplace guy myself,” says Senator Domenici. “But I think we’re violating civil rights when we take a large group like this and just say, ‘Well, struggle along.’ We can’t treat the mentally ill like they’re some kind of freaks.” Senator Harry Reid (Democrat, Nevada) says, “Now I see a young lady who has problems with her menstruation and we get her to a doctor right away; or a young man who has asthma gets taken care of real quick. But if that young lady and that young man are not talking to anyone, weigh two hundred ninety pounds at five feet tall, you know, so what? ‘Mr. Chairman,’ I recently said, ‘I think we should do a hearing on suicide.’ We spend lots and lots of money making sure that people drive safely. We do so much to make sure airplanes are safe. But what do we do about those thirty-one thousand lives a year that go to suicide?”
In the House, the focus has been on the idea that the mentally ill are dangerous. Various episodes of illness-related violence have become iconic: the shooting of Ronald Reagan by John Hinckley; the Unabomber; the gunning down of two policemen on Capitol Hill by Russell Weston Jr.; the episode in which a diagnosed schizophrenic, Andrew Goldstein, pushed a woman under a New York subway train; the shootings in post offices, and, most of all, the terrible shootings in schools: in Littleton and Atlanta, in Kentucky and Mississippi and Oregon, in Denver and in Alberta. According to recent press releases, over one thousand homicides were attributed in 1998 to people with mental illnesses. Depression is implicated much less frequently than manic-depression or schizophrenia, but agitated depression does lead people to violent acts. The focus on mentally ill people who are dangerous increases stigma and reinforces negative public perception of people suffering from mental illness. It is, however, extremely effective for fund-raising; many people who will not pay to help strangers will gladly pay to protect themselves, and using the “people like that kill people like us” argument enables political action. A recent British study showed that though only 3 percent of the mentally ill are considered dangerous to others, nearly 50 percent of all press coverage of the mentally ill is focused on their dangerousness. “Very intelligent members of Congress are willing to develop a bunker mentality rather than try to understand the conditions that motivate horrendous acts,” Representative Kaptur has said, “and so they want to build barbed-wire fences and increase policing to avoid problems that should be addressed by increasing mental health funding. We’re spending billions of dollars on defending ourselves against these people when for much less we could be helping them.” President Clinton, who had a strong record on defending the rights of the mentally ill and who backed Tipper Gore’s White House Conference on Mental Illness, said to me, “Well, we can only hope that people will sit up and pay attention to the urgency of this problem after the tragedy in Littleton, after Atlanta, after the shooting of those policemen on Capitol Hill. Major legislative change in this area—it takes tragedy after tragedy.”
“People around here, nice or otherwise, don’t make decisions just because they are right in some abstract moral sense,” Representative Lynn Rivers points out. “You have to bring it home to a general population that this is in their best interest.” She is a strong supporter of the bill proposed by Roukema and Kaptur and, like those two representatives, is apologetic about the phrasing of the bill. It does not use the moral language of ethical responsibility. Proposed in the wake of the Weston shooting at the Capitol, it talks about self-protection. “Of course we want to help nonviolent mentally ill people just as much as we want to control violent ones,” Roukema said to me. “But we’re the ones on the inside track. To draw any kind of substantial support, we have to show people that it serves their urgent self-interest to do something about this. We have to talk about preventing atrocious crimes that could be visited on them or their constituents at any moment. We can’t talk simply about a better and more prosperous and more humane state.” The economic arguments have relatively seldom been used, and the idea of getting people off social assistance and into the capitalist system is still obscure for Congress—though a recent study at MIT showed that when people have major depression their ability to do work falls dramatically but returns to base level with antidepressant treatment. Two other studies show that supported employment for the mentally ill is the most economically beneficial way of dealing with them.
Recent research linking depression to other illnesses is beginning to carry weight with lawmakers and even with HMOs. If untreated depression does makes you more prone to infection, cancer, and heart disease, then it’s an expensive illness to ignore. Through an irony of politics, the more expensive untreated depression is, the more money will be made available to treat the illness. John Wilson, a onetime candidate for mayor of Washington, D.C., who committed suicide, once said, “I believe that more people are dying of depression than are dying of AIDS, heart trouble, high blood pressure, anything else, simply because I believe depression brings on all these diseases.”
While arguments about insurance parity rage, there is no discussion of what to do about depression among the uninsured. Medicare and Medicaid supply various levels of service in various states, but they do not provide for outreach programs, and most of the indigent depressed are not able to get themselves together to seek out assistance. The arguments in favor of treatment for the indigent depressed seem to me to be overwhelming, and so I went to Capitol Hill to share the experiences related in the last chapter. I was there in a strange capacity, an accidental activist as well as a journalist. I wanted to know what was being done, but I also wanted to persuade the American government to press forward with reforms that would serve the interests of the nation and of the people by whose stories I had been so deeply moved. I wanted to share my insider’s knowledge. Senator Reid had a real grasp of the situation: “A few years ago, I dressed myself up in disguise, like I was homeless, baseball hat and old bum clothes, and I spent an afternoon and a night in a homeless shelter in Las Vegas and then the next day did the same in Reno. You can write all the articles you want about Prozac and about all the modern miracle drugs that stop depression. That doesn’t help this group of people.” Reid himself grew up in poverty and his father killed himself. “I have learned that had my dad had someone to talk to, and some medication, he probably wouldn’t have killed himself. But we’re not legislating for that at present.”
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 m
entally 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.
The Noonday Demon Page 54
