A National Disgrace

The public care of the chronically mentally ill in the United States is a national disgrace, and it has been for most of the last two centuries. Twice in that period reforms have been undertaken: the first reform took the patients out of the community and into state hospitals; the second reform took them out of state hospitals and back into the community. Neither one solved the problem. The ideas behind both reforms were sound; it was the failure to carry out the ideas in each case that led to catastrophe. It is now time for a third reform, and this time we need to do it right.

The current deplorable condition of public mental health care can best be illustrated by cases. I will briefly mention three patients whom I will call Helen, Sally, and John. They live in Pennsylvania, Virginia, and New York respectively, but they could be living in any state. All three carry the diagnosis of schizophrenia, the most prevalent of the severe mental illnesses.

Helen—

Here is what Helen’s court-appointed attorney found when she visited her client in jail in the fall of 2000:

“Helen lies inside the windowless cell, which reeks of feces. The room contains a bed with restraint straps. There are no blankets. . . . she can’t get a blanket because the guards are afraid, and maybe she is afraid too, that she will hang herself with it. She is so cold, she says, that she ripped open the mattress and crawls inside it to keep warm.”

Helen had been convicted of disturbing the peace, behavior that was a symptom of her mental illness. Helen is one of the steadily increasing numbers of mentally ill patients held in jails in this country. In many jurisdictions, such as Los Angeles County, more mentally ill patients are held in jails than are treated in hospitals—it is the first time this country has relied on jails for mental health care since the 1840’s.

A few jail administrators accept the fact that they are stuck with mentally ill prisoners and try to care for them, often with a nurse and a psychiatric consultant from the community. Jails even have an advantage over hospitals— in length of stay. As one consultant said to me, “most of the mentally ill prisoners have at least 30-day sentences, which gives us a lot more time than the hospitals have to stabilize their medications and get them ready to go back into the community.” Even so, jails are not and should not be expected to become mental hospitals. Furthermore, the vast majority of jailers have neither the resources nor the motivation to do anything more for mentally ill prisoners than control them through restraint. Some jails, like Helen’s, are even worse.

Sally—

Sally has been schizophrenic for about 15 years. She is about 35, and since she was first discharged from the state hospital she has worked intermittently as a motel chambermaid. When she takes her medication regularly she can hold a job, live in an apartment, and pay her taxes like the rest of us. She still hears voices, but her medication can keep them relatively quiet, and when they are quiet she knows that they are part of her illness.

But when she gets upset about the problems in her life, the voices get louder and are likely to persuade her to stop taking her medication. If at that point she can talk with a counselor, she usually can get back on track and stay out of the hospital. In the last few years, however, as community mental health services have been cut, it has become almost impossible for her to find help soon enough to keep her from losing her job and her apartment, and then she lives in homeless shelters until she ends up in the hospital. More recently her hospital stays have been so brief that she has been discharged before she is ready to return to work. She has now given up trying to get back to work and seems resigned to being a permanent member of the urban homeless.

From one-third to one-half of the urban homeless are mentally ill. They sleep in the streets or in temporary shelters, and although a few efforts have been made to provide them with medications, they are hard to keep track of.

John—

John has been ill about as long as Sally, but he did not respond as well to treatment. Instead of living in his own apartment he has lived in a privately owned “adult home,” licensed by the state and run by the community mental health center. At first he was supervised by trained personnel who distributed his medications, encouraged him to maintain his room and personal grooming, expected him to assist with food preparation for the occupants, and helped him to get a part-time job as a dish-washer.

Initially his care at the home was paid for by a combination of state, community, and federal funds. But as these funds have been cut, trained personnel have been replaced by fewer and less well trained substitutes. John’s medication is now handed out by an attendant with little literacy and no special training; when he does not appear at the prescribed time no one seeks him out. He has now become more withdrawn and preoccupied with his hallucinations; he has lost his job, and he spends most of his time in his room because he is afraid to go out. His clothes are filthy, as he has stopped trying to use the washing machines—which are usually out of order anyway—and his room is infested with cockroaches. State inspectors have recommended closing the home, but since there is no other place for the residents to go, the place stays open.

II

The care, or lack of care, that Helen, Sally, and John are receiving is not typical of the care of all of the chronically mentally ill; many mental health centers are still struggling to maintain the kind of care that the community mental health centers were expected to provide. But virtually all of them are being forced by budget cut after budget cut to limit their services. Many of their experienced personnel, like the psychiatrist I will call Dr. Jean, have left or are leaving.

Dr. Jean—

Dr. Jean works for a mental health center in a small Midwestern city. She is one of a dwindling number of devoted psychiatrists who work with teams of counselors or “case managers” to assist severely mentally ill patients in their efforts to adjust to community life. Dr. Jean prescribes medication, and the team helps patients like John take his medication and so stay out of the hospital; the team also helps patients like Sally find housing and transportation, get and hold jobs, and live reasonably productive lives. The other day at a national meeting I asked Dr. Jean how things were going.

“Worse than ever,” she said. “In fact, I’m so discouraged I’m looking for another job. Our caseload keeps increasing while our budget keeps getting cut and we keep losing personnel. I have no time any more for anything except prescribing medications, and the few counselors left on the team are too overloaded to do anything but attend to emergencies. Counselors used to have 50 patients; even 50 was too many, but now, with 150 patients apiece to counsel, they hardly get to know their names. We can no longer keep patients from relapsing because we no longer have people they can turn to for help. When they relapse and go to the hospital, they are discharged before they’re ready to cope with the outside world.”

Both private and public hospitals now discharge patients before doctors and nursing staff have enough time to build up relationships with them. These relationships set the stage for rehabilitation and also can be used to overcome the kind of crises that occasionally occur. The alternatives to personal intervention to alleviate these crises are the antiquated ways of restraining patients we hoped had been given up. With the current limitations in personal care, however, the old ways are creeping back.

For example, a psychiatric unit in a major teaching hospital, where medical students and residents are expected to learn how to treat the mentally ill properly, was recently cited by a government inspector for overuse of restraints for such minor infractions as “staring down another patient.” Frequent use of restraints was not a tradition in that hospital; for many years they had been used only in emergencies, and neither patients nor staff had been hurt.

This was not an isolated incident; all over the country the use of restraints and other signs of the lack of personal care for both private and public patients are on the increase, in spite of the fact that today’s ward personnel have better medications and, presumably, more knowledge about patient care than ever before. These days patients are shuttled in and out of hospitals so rapidly that psychiatrists, nurses, and other personnel do not have time to get to know them. Without a personal relationship that can be used to deal with patient crises, the staff is too often tempted to fall back on chemical and physical restraints.

III

Throughout history restraint, in one form or another, too often has been the only approach to the public care of the mentally ill. Private psychiatric treatment began in the United States about 200 years ago, when several private mental hospitals were founded. Their patient care was based on what was called “moral treatment,” which combined the predecessors of occupational, recreational, and group therapies with a concern for the patients’ psychological well-being. Moral treatment was also used in a few public hospitals, but they were small and the demand was large, and so patients who did not respond rapidly were discharged, often to local jails or almshouses where restraint was the only intervention. They thus resembled today’s prematurely discharged patients, many of whom end up homeless or in jails or adult homes.

No one paid attention to the plight of these patients until the early 1840’s, when a determined and feisty Boston schoolteacher named Dorothea Dix became concerned. Dix, who had learned about moral treatment at the nearby McLean hospital, saw at first hand how miserably the mentally ill were treated when she began to teach Sunday school to women prisoners in the Cambridge, Massachusetts, jail. She was so horrified by what she saw that she dropped everything else and began a relentless crusade to persuade state legislators all along the East Coast to provide hospitals and moral treatment for those who could not afford private care.

The legislators could see that jails were not proper places to house the mentally ill, and so they agreed to provide more and larger public mental hospitals. They balked, however, at providing moral treatment. It was expensive, and, according to the psychiatrists of the time, it was only a frill to fill in the time for private patients; it was not a justifiable expense for the poorer classes. Besides, the patients were incurable, and so treatment was wasted on them.

The hospitals built by the states, therefore, became custodial institutions, not too much different from the jails and almshouses they replaced. Most of them were located on farms in remote rural areas where land was cheap and where the patients could be kept out of sight. The hospitals were required to be virtually self-sufficient, so convalescent patients were retained under legal commitment to work without pay on the farms and in the laundries and kitchens. It was not long before these institutions came to look more like slave plantations than hospitals.

They continued to look like slave plantations for the next hundred years. They grew steadily larger, until by World War II some of them warehoused more than 10,000 patients, half of whom had been diagnosed schizophrenic. Throughout the century there was almost no demand for improved conditions, in part because the patients were out of sight of almost everybody, but mostly because the stigma of mental illnesses kept patients’ relatives from insisting on change.

The demand for reform did not surface until after World War II. Returning servicemen had learned to be more accepting of the mentally ill; conscientious objectors were appalled at what they had seen during their alternative service in state hospitals; unions objected to unpaid patient labor; and investigative reporters like Albert Deutsch publicized the atrocious conditions. In his 1949 book, The Shame of the States, Deutsch wrote of conditions worse than Dix had found a century earlier. In one of the state hospitals, he described “scenes that rivaled the horrors of the Nazi concentration camps— hundreds of naked mental patients herded into huge barn-like filth-infested wards, in all degrees of deterioration, untended and untreated, stripped of every vestige of human decency.”

IV

In 1955 Congress responded to the mounting demands for reform by appointing the Joint Commission for Mental Illness and Health, a group of leading experts in psychiatry and other mental health professions, to study the problems and make recommendations for change. The Commissioners recognized that the care of the mentally ill was difficult and often discouraging, but they were nevertheless convinced that with proper treatment many if not most patients with schizophrenia as well as other severely mentally ill patients could adapt to community life. They recommended replacing the large state hospitals with small, community-based mental health centers, which would include acute hospitals, day hospitals, and clinics. They believed that patients who became well enough to leave full timecare should be assured of a place to live in their communities and of transportation to clinics and activities. They would require supervision by staff members and help in adhering to treatment regimens and in adjusting to community life.

The Commission recognized the importance of the care of all mental illnesses and of efforts at prevention, but it emphasized that the care of patients with severe mental illnesses was by far the most urgent problem and so should have first priority. The Commission also recommended that the federal government should finance a steadily increasing share of the costs of the care of these patients.

The Joint Commission’s recommendations were well thought out and, with a few changes, could serve as a blueprint for the reform that is needed today. But when in 1963 Congress wrote the legislation to implement the recommendations and set up a system of community mental health centers, it second-guessed the Commission in two crucial areas: (1), it did not give first priority to the severely mentally ill; and (2), it did not assure ongoing federal funding. These changes essentially guaranteed that this promising effort to reform the care of the chronically mentally ill would fail.

Congress might have given the highest priority to severe mental illness if the timing of the legislation had not fortuitously coincided with the most significant scientific advance in the history of psychiatry, the discovery of the tranquilizing drugs.

The tranquilizing drugs, introduced in the 1950’s, were dramatically successful in reducing the most obvious symptoms of schizophrenia. This initial success, in a field traditionally dominated by pessimism, was so spectacular that both laymen and professionals assumed that, simply by taking the right medication, schizophrenic patients would be able to leave the hospital, return home, and resume a conventional life with a minimum of follow-up care. Without symptoms, it was believed, they would no longer be stigmatized, and without the stigma that had surrounded mental illness for centuries, they would be welcomed back to their communities. The communities and states would then be willing to absorb the costs of running the mental health centers.

Congress went on to assume that if schizophrenia had suddenly become so easy to treat, other psychiatric conditions would soon follow suit. The centers therefore should be able to treat or prevent the whole gamut of mental illnesses, including alcoholism and drug abuse, and even mental retardation—in adults, children, adolescents, and the elderly. In short, the centers were expected to take care of everybody who needed any kind of psychiatric help.

Everybody who needs any kind of psychiatric help includes, according to the latest statistics, 19 percent of the population. Since effective treatment turned out not to be nearly as easy as the tranquilizers made it seem at first, one-fifth of the population is many times the number that all the trained personnel in the country can cope with, so the task assigned to the centers was much more than they could handle. Consequently, the centers had no choice but to be selective in the patients they treated, and only a few, like the center where Dr. Jean works, focused on the chronically ill patients who, according to the Joint Commission, were most in need of care.

Even those centers that tried to care for the chronically ill soon found that the tranquilizers by themselves did not cure schizophrenia, nor did they eliminate stigma. But by that time, the state hospitals had inundated the centers by discharging, or “deinstitutionalizing,” the majority of their patients.

V

The first patients to be deinstitutionalized were those who had been working on the farms and in the kitchens and laundries; when the hospitals were no longer permitted to use unpaid labor, these patients became expendable. Many of them were well enough to adjust to their communities, but the rest of them were not nearly as ready. Since, however, the hospitals could not meet their budgets without unpaid labor, they soon discharged most of the rest of their patients.

Enormous numbers of patients were discharged. In New York state alone the hospitals’ census plunged from 93,000 patients in 1955 to only 6,000 by 2000, and other states reported similar discharge rates. Once back to their communities, patients needed much more than simply drugs. They needed the individual, on-going help of trained staff if they were to adjust to their new lives and to take their medications. All of the drugs had unpleasant side-effects, and without a great deal of psychological support many patients simply stopped taking them. When they stopped taking their medications, their psychotic symptoms returned. Many patients ended up in jail like Helen, in shelters like Sally, or in adult homes which, as in John’s case, too often offered little or no care.

Even centers like Dr. Jean’s that took a realistic view of the tranquilizers and, against substantial odds, were able to set up effective programs for the follow-up care of deinstitutionalized patients have been unable to sustain their programs because they could not find enough money. There had not been enough federal money to start with, and there was less and less of it as time went on.

There was progressively less money because in the 1960’s the federal government had provided start-up financing for the community mental health programs in the same way a private foundation provides start-up funding for experimental projects. The federal funding, like a foundation grant, decreased over time, with the expectation that the communities would take over an increasing proportion of the costs.

But the planners did not take into account either the stigma of mental illness or the poverty of many communities. Many communities refused to spend more each year on mental health services; others could not afford to; still others feared that if they provided effective services they would be inundated by peripatetic patients in search of services. Caught in a bind as federal funds diminished and communities and states objected to picking up the check, by the 1990’s many centers were forced to turn to health insurance or to medicaid to cover their costs. Neither was adequate, however, even for the costs of direct treatment and neither permitted money for such crucial indirect costs as housing, transportation, and vocational and recreational activities.

The irony of it is that cutting aftercare budgets for the chronically mentally ill does not save money in the long run. The annual costs in the United States of the care of patients with schizophrenia, the most prevalent of the severe mental illnesses, have been estimated at $65 billion, $19 billion in direct treatment costs and $46 billion in such indirect costs as the loss of productivity. The costs of Helen’s jail time, Sally’s repeated hospital stays, and John’s adult home more than balance the costs of the kind of care that would reduce the numbers of their trips to hospitals and jails and would increase their chances of becoming productive members of their communities. Most of the savings would be in the indirect costs—the loss of productivity and, for many patients, the diminished chances for prolonged remission or cure.

VI

Reform is urgently needed before the system completely falls apart. Reform for the most part only requires implementing the basic recommendations of the Joint Commission for Mental Illness and Health. Implementing these recommendations does not mean that we should abandon the community mental health center approach and start over, but it does mean that the new priorities and funding need to return to the priorities and funding that were recommended by the Joint Commission. As the Commission stated in 1961,

“A national mental health program should recognize that major mental illness is [its] core problem and unfinished business. . . and that the intensive treatment of patients with critical and prolonged mental breakdowns should have first call.”

The need for care and rehabilitation of the chronically and severely mentally ill is so urgent that it must have first priority over such important concerns as the treatment of the ambulatory, less disabled mentally ill. Accordingly, every community mental health center should have emergency, in-patient, day hospital, clinic, rehabilitation, and housing and transportation services geared to the special needs of schizophrenic and other chronic mental illnesses. The only exceptions are sparsely populated areas such as rural Alaska, in which regular clinic visits are not feasible and greater use of radio and local public health personnel is required.

Ideally every center will also include services to the less severely ill, as is the case in most centers today. These services currently have varied sources of funding and probably should continue to do so. Funding arrangements will depend on the local situation as more such services emerge and they will be either affiliated with the center or independent of it, according to community demand and capacity. However, no arrangement for supplementary services should interfere with the center’s main mission, the care of the severely mentally ill.

The need to care for patients who may take many years to respond to treatment must be faced; otherwise there is a risk that active treatment facilities become filled with patients who have not as yet shown signs of improvement. This phenomenon, inelegantly titled “silting up,” has been a challenge to the mental health establishment since the time of Dorothea Dix. In those days, if a small hospital was full, as it usually was, it responded to a new admission by sending home the patient who had been there the longest. That somewhat Draconian policy routed many patients to jails and almshouses who, Dix believed, would have benefited from continuing treatment. On the other hand, responding to new demand by enlarging the hospitals and keeping all patients overwhelmed and eventually discouraged all treatment efforts.

The alternative that makes most sense today, is to provide treatment opportunities wherever patients are living: in board and care homes in the community, in nursing homes, or in state hospitals. The late start to improvement or recovery that can occur in chronically ill patients has been dramatized in the case of the mathematician John Forbes Nash; one does not have to be a Nobel laureate to derive late benefit from prolonged care. The risk, as history has repeatedly demonstrated, is that prolonged treatment is prematurely abandoned as an economy measure.

In the early days of community mental health, federal funding made it possible to build up a mental health care system that, despite its failure to give enough emphasis to the conditions most in need of care, was the best the nation had ever seen and had the potential for becoming even better as it readjusted its priorities. But since the states and communities have taken over the financing, economy measures have whittled down the support of mental health centers and have dispersed the professional teams that were built up under federal funding.

Reform of mental health care, therefore, starts with reform in funding. Funding for the reformed centers requires a commitment by the federal government to take over the care of the severely mentally ill, not as an experiment but as an ongoing responsibility, as with the medical care of veterans. Only with ongoing federal funding will the new reform succeed. It is unrealistic to expect communities, even if they were willing, to bear the costs of mental health care, as the poorest communities have much the greatest burden. During the last century and a half the states have consistently made it evident that they cannot or will not adequately support care, and there are no signs that they will change. Private insurance funding through managed care is not a viable option: its eligibility rules keep out the people in greatest need, and its emphasis on cost-cutting has severely constricted clinical psychiatric services and has never provided essential supportive services such as housing, transportation, and vocational rehabilitation. The federal government has by far the best record and is the only logical choice.

The federal government should buy or lease existing state or community facilities and build new ones. It should either operate the facilities or contract with competent nonprofit agencies to operate them. The reformed system should not be viewed as an economy measure; to make the necessary changes in the current disgraceful and expensive system of care will be impossible without an initial and ongoing expenditure of substantial government funds. In the long run, however, a reformed system will more than pay for itself, not in direct savings but in the reduction of the indirect costs of mental illness.

A federally supported program for the mentally ill will not guarantee that Helen or John or even Sally will live happy and productive lives and never again require hospitalization, but it can greatly reduce the likelihood of further hospitalization and greatly increase the chances that they will hold jobs, maintain themselves in their communities, and pay taxes rather than requiring lifelong public assistance. It can make the cure of schizophrenia, still a rarity, into a much more likely possibility.

By this time we have learned to be more realistic in our expectations and in our funding projections, and we are beginning to recognize the complexities of mental illness and its care. Our priorities are clearer than ever before, and we have made some progress in overcoming the stigma of mental illness. Our next need is a groundswell of popular support to provide the kind of care that will give Helen, Sally, John, and thousands like them the opportunity for recovery or rehabilitation that they deserve.