Deinstitutionalization Hasn’t Worked

These notes are relevant to the growing problem of homelessness. 

Here is a quote I captured at my old blog in 2007 which was eight years old even then. I have no idea where it came from because the link no longer works and I can't find it with my browser. 

Hundreds of thousands of vulnerable Americans are eking out a pitiful existence on city streets, under ground in subway tunnels, or in jails and prisons due to the misguided efforts of civil rights advocates to keep the severely ill out of hospitals and out of treatment. The images of these gravely ill citizens on our city landscapes are bleak reminders of the failure of deinstitutionalization. They are seen huddling over steam grates in the cold, animatedly carrying on conversations with invisible companions, wearing filthy, tattered clothing, urinating and defecating on sidewalks or threatening passersby. Worse still, they frequently are seen being carried away on stretchers as victims of suicide or violent crime, or in handcuffs as perpetuators of violence against others. 

All of this occurs under the watchful eyes of fellow citizens and government officials who do nothing but shake their heads in blind tolerance. The consequences of failing to treat these illnesses are devastating. While Americans with untreated severe mental illnesses represent less than one percent of our population, they commit almost 1,000 homicides in the United States each year. 

At least one-third of the estimated 600,000 homeless suffer from schizophrenia or manic-depressive illness, and 28 percent of them forage for some of their food in garbage cans. About 170,000 individuals, or 10 percent, of our jail and prison populations suffer from these illnesses, costing American taxpayers a staggering $8.5 billion per year. 

In 1965, Congress excluded most payments to state psychiatric hospitals and other "institutions for the treatment of mental disease" (IMDs) from Medicaid because the Federal Government did not intend to take over what historically had been a state responsibility, and because it intended to implement a system of community mental health centers that would replace the state psychiatric hospital systems.

Here is an excerpt from Chapters 1, 3 and the Appendix of: Out of the Shadows: Confronting America's Mental Illness Crisis by E. Fuller Torrey, M.D. (1997)

Deinstitutionalization is the name given to the policy of moving severely mentally ill people out of large state institutions and then closing part or all of those institutions; it has been a major contributing factor to the mental illness crisis. (The term also describes a similar process for mentally retarded people, but the focus of this book is exclusively on severe mental illnesses.) 

Deinstitutionalization began in 1955 with the widespread introduction of chlorpromazine, commonly known as Thorazine, the first effective antipsychotic medication, and received a major impetus 10 years later with the enactment of federal Medicaid and Medicare. Deinstitutionalization has two parts: the moving of the severely mentally ill out of the state institutions, and the closing of part or all of those institutions. The former affects people who are already mentally ill. The latter affects those who become ill after the policy has gone into effect and for the indefinite future because hospital beds have been permanently eliminated. 

The magnitude of deinstitutionalization of the severely mentally ill qualifies it as one of the largest social experiments in American history. In 1955, there were 558,239 severely mentally ill patients in the nation's public psychiatric hospitals. In 1994, this number had been reduced by 486,620 patients, to 71,619, as seen in Figure 1.2. It is important to note, however, that the census of 558,239 patients in public psychiatric hospitals in 1955 was in relationship to the nation's total population at the time, which was 164 million. 

By 1994, the nation's population had increased to 260 million. If there had been the same proportion of patients per population in public mental hospitals in 1994 as there had been in 1955, the patients would have totaled 885,010. The true magnitude of deinstitutionalization, then, is the difference between 885,010 and 71,619. In effect, approximately 92 percent of the people who would have been living in public psychiatric hospitals in 1955 were not living there in 1994. Even allowing for the approximately 40,000 patients who occupied psychiatric beds in general hospitals or the approximately 10,000 patients who occupied psychiatric beds in community mental health centers (CMHCs) on any given day in 1994, that still means that approximately 763,391 severely mentally ill people (over three-quarters of a million) are living in the community today who would have been hospitalized 40 years ago. That number is more than the population of Baltimore or San Francisco. 

Deinstitutionalization varied from state to state. In assessing these differences in census for public mental hospitals, it is not sufficient merely to subtract the 1994 number of patients from the 1955 number, because state populations shifted in the various states during those 40 years. In Iowa, West Virginia, and the District of Columbia, the total populations actually decreased during that period, whereas in California, Florida, and Arizona, the population increased dramatically; and in Nevada, it increased more than sevenfold, from 0.2 million to 1.5 million. The table in the Appendix takes these population changes into account and provides an effective deinstitutionalization rate for each state based on the number of patients hospitalized in 1994 subtracted from the number of patients that would have been expected to be hospitalized in 1994 based on that state's population. It assumes that the ratio of hospitalized patients to population would have remained constant over the 40 years. 

Rhode Island, Massachusetts, New Hampshire, Vermont, West Virginia, Arkansas, Wisconsin, and California all have effective deinstitutionalization rates of over 95 percent. Rhode Island's rate is over 98 percent, meaning that for every 100 state residents in public mental hospitals in 1955, fewer than 2 patients are there today. On the other end of the curve, Nevada, Delaware, and the District of Columbia have effective deinstitutionalization rates below 80 percent. 

Most of those who were deinstitutionalized from the nation's public psychiatric hospitals were severely mentally ill. Between 50 and 60 percent of them were diagnosed with schizophrenia. Another 10 to 15 percent were diagnosed with manic-depressive illness and severe depression. An additional 10 to 15 percent were diagnosed with organic brain diseases -- epilepsy, strokes, Alzheimer's disease, and brain damage secondary to trauma. The remaining individuals residing in public psychiatric hospitals had conditions such as mental retardation with psychosis, autism and other psychiatric disorders of childhood, and alcoholism and drug addiction with concurrent brain damage. The fact that most deinstitutionalized people suffer from various forms of brain dysfunction was not as well understood when the policy of deinstitutionalization got under way. 

Thus deinstitutionalization has helped create the mental illness crisis by discharging people from public psychiatric hospitals without ensuring that they received the medication and rehabilitation services necessary for them to live successfully in the community. Deinstitutionalization further exacerbated the situation because, once the public psychiatric beds had been closed, they were not available for people who later became mentally ill, and this situation continues up to the present. Consequently, approximately 2.2 million severely mentally ill people do not receive any psychiatric treatment 

Deinstitutionalization was based on the principle that severe mental illness should be treated in the least restrictive setting. As further defined by President Jimmy Carter's Commission on Mental Health, this ideology rested on "the objective of maintaining the greatest degree of freedom, self-determination, autonomy, dignity, and integrity of body, mind, and spirit for the individual while he or she participates in treatment or receives services." This is a laudable goal and for many, perhaps for the majority of those who are deinstitutionalized, it has been at least partially realized. 

For a substantial minority, however, deinstitutionalization has been a psychiatric Titanic. Their lives are virtually devoid of "dignity" or "integrity of body, mind, and spirit." "Self-determination" often means merely that the person has a choice of soup kitchens. The "least restrictive setting" frequently turns out to be a cardboard box, a jail cell, or a terror-filled existence plagued by both real and imaginary enemies.