Where Did All the People Go?

Editor’s note: This is the fifth chapter in a series on the history of Oregon psychiatry by Robert Nikkel, who is a former Oregon State Commissioner of Mental Health and Addictions.

In Oregon, there were 5,000 patients in its state hospitals in 1955. This was the start of what is known today as deinstitutionalization—the moving of psychiatric care out of the hospital and into the community.  By 1964, the population in Oregon’s state hospitals declined to 1,260. At the present time there are 705 beds.

Those are eye-catching figures. To gain a national perspective, in 1955 there were a total of 558,239 patients in the United States. By 1994, state hospital population in the US had declined to 71,619. Oregon has been right in line with all the other states. These kinds of figures and the many problems that ensued led E. Fuller Torrey to assert in his book Out of the Shadows that deinstitutionalization was a “psychiatric Titanic.”

The question that this history will try to answer is how Oregonian lives were affected by deinstitutionalization, in three phases. In the first phase, it meant moving thousands of patients from three state mental hospitals.

The First Wave

The first wave of deinstitutionalization was the one with the greatest change in hospital census. The largest of the hospitals was Oregon State Hospital (OSH) in the capitol city of Salem. It peaked at 3,521 patients in 1957.

The two other hospitals were smaller.  One of these was in the Portland area, Dammasch State Hospital, which opened in 1961 with a capacity of 400 patients. It was frequently known by patients as Damage State Hospital. Its purpose was to relieve overcrowding at OSH.

The other, much older facility, Eastern Oregon State Hospital (later renamed Eastern Oregon Psychiatric Center [EOPC]), opened in 1912 on the other side of the Cascade Mountains in the small town of Pendleton. By way of a “special train,” 325 patients were transferred from OSH to EOPC at its opening because OSH had already become overcrowded in less than 30 years. By 1915, EOPC had grown to have a capacity of 580 and by 1963 its census reached 1,200. It housed only 60 patients when it was closed in 2014. Similar to OSH, EOPC served those with head injury, senility, epilepsy, and “drinking moonshine.” EOPC had a few diagnosed with “occult study,” whatever that was.

Although it was the time of the most dramatic decrease in the populations of the state hospitals, the first wave caught little attention from public sources of information. Because of this, there was little controversy. Most patients who were discharged had tuberculosis and intellectual or developmental disabilities. Almost all those with developmental disabilities and seizure disorders were transferred to the Oregon State Institution for the Feeble-Minded (renamed Fairview Hospital and Training Center), which had opened in 1907.

Most all elderly patients who were discharged in this first wave found themselves living in nursing homes and other facilities which were unprepared or not staffed properly. Mostly unnoticed to the outside world, the residents were often found in a stupor, sitting around and doing nothing or watching television programs aimlessly.

Another group of overlooked patients were “alcoholics,” who constituted about 20% of the admissions to OSH. At the peak population of OSH, there were probably about 200 to 400 alcoholic patients, and some reports put the number at 800. While in the hospital, many of these patients were at least able to attend AA meetings and some were able to receive group therapies.

Not much is recorded about efforts to connect them with community supports. They certainly were not the ones sent to nursing homes. Discharging alcoholics had always been problematic and deinstitutionalization meant that some may have ended up cheap hotels or unsafe room-and-boards. It is likely that many of these men and women didn’t last long in such settings and added to the number who relapsed and became homeless. A certain but unknown number became homeless almost immediately. Some committed minor crimes and ended up in local jails. Although there are no statistics, many certainly died prematurely.

The Second Wave

The second phase of deinstitutionalization started around 1960 and is continuing to the present. President John F. Kennedy initiated a national movement to create community mental health programs in 1964. The deinstitutionalization movement articulated by Kennedy was based largely on the view that people in state hospitals were being mistreated and turned into chronic patients—a humane and ethical impulse. The other driver was financial. State hospitals were expensive, and in earlier times had taken up as much as 50% of the total state budget. Discharging people into the community saved the state money, especially when Medicaid was established in 1965, as that allowed part of the community services to be paid for with federal funds.

For those not familiar with Oregon, it is almost two different states in culture and climate, one rainy and somewhat urban in the west and the other rural and dry east of the Cascades. The challenges were very different for discharging those from largely urban areas who had become patients at EOPC. Although EOPC prioritized admission for those from Eastern Oregon, but since that area is sparsely populated, it had to admit a sizeable but unknown number from the west side of the state. Those patients had to be discharged back into their home communities three or four hours away or had to make a new life in the different climate and culture of eastern Oregon.  There has been no attention paid to those patients’ actual experiences.

In 1961, Oregon established a state office, the Mental Health Division, to provide leadership in developing community services. While it was responsible for the state hospitals, the child guidance clinics got most of the attention. As a result, the Mental Health Division responded mostly to the needs of families and children.

The Mental Health Division was also charged with developing supports for people with substance abuse problems, but it lacked adequate resources to do so. It had even less interest in providing for people discharged from the state hospitals, and thus the main resource for these patients was group homes staffed by former state hospital employees. There were almost no professionals associated with these facilities, and there was no training to help non-professionals develop expertise in serving discharged patients.

The problems with deinstitutionalization began to get national attention with the publication of E. Fuller Torrey’s book Surviving Schizophrenia in 1983.  He focused on problems like violence, homelessness and unemployment because in his view people with mental disorders had neurological illnesses with no insight into their disorders. It was because of this lack of insight, he said, they were not getting the community support and treatment that they needed.

For this reason, Torrey began to advocate for involuntary hospitalization and forced medications.  However, increasing the use of forced treatment would have required more underfunded state hospital and other inpatient programs. He seemed to be unaware of what state hospitals and other hospitals had become. In Oregon, funding for both community and hospital treatment was a chronic problem, and the data on suicides, deaths, injuries to staff and patients showed that OSH was not a safe place. There were four homicides at OSH between 1983 and 1986. Diane Goeres-Gardner pointed out that at one point a “virtual arsenal of homemade weapons had been confiscated.” There were 24 suicides between 1976 and 1988 with 9 in 1988 alone. Almost 200 injuries to staff were reported in 1988.

It is commonly assumed that psychiatric medications were mainly responsible for the deinstitutionalization movement. Oregon’s state, academic and advocacy leadership made this point in an Oregon Historical Society publication as late as 2022 when they stated that “To a significant extent, newly discovered medications made deinstitutionalization possible.”

However, a Milbank Memorial Fund article makes note of a revealing study that compared two groups of patients: one, patients who had been discharged between 1947 and 1952 before the advent of psychiatric medications; the other, discharged after extensive use of the drugs between 1967 and 1972. The five year follow-up evaluations “found no substantial difference between the two groups, an unexpected result . . . in view of the absence of psychotropic drugs during the entire five years [in the first group] compared with extensive use of psychotropic drugs [in the second group] . . . evidence of benefits to psychiatric patients, especially those hospitalized over long periods, is not to be found anywhere in the professional literature.” This study casts doubt on the assumptions that deinstitutionalization was largely the result of the new availability of psychiatric medications.

All of this strongly suggests that the idea—often proposed today—for opening more state hospitals and community hospitals and forcing more people into them is not a satisfactory response to the compelling problems related to community care.  The argument that there is shortage of state hospital capacity also fails to recognize the fact that there are far more beds in the community than had been in state hospitals when state hospitals were at their prime.

The National Association of State Mental Health Program Directors decided to take on the task of counting psychiatric beds in America. Their analyses make it clear that the dominant narrative about deinstitutionalization is off-base. The real problem in Oregon is that the residential programs have not been well-matched to the needs of people who are still stuck in OSH. It has become more apparent too that factors like abuse of alcohol and drugs, the scarcity of safe, affordable housing, and criminal activity are increasing the demand for more state hospital capacity.

Admission to the limited community services in the 1980s was granted by the tag, “Serious and Persistently Mentally Ill” (SPMI). A typical caseload was about 150 for each case manager. Counties could choose whether to accept federal funding, and some Oregon counties refused to take advantage for fear that the funding would not continue. Missing was any incentive or policy to design services and supports for patients who were diagnosed SPMI. The services usually centered around medication management.

So it can be argued that deinstitutionalization itself wasn’t the problem. It was the way it was implemented. To this day, community supports and services have consistently mismatched the needs of people discharged from Oregon’s state hospitals.

The Third Wave: A Turn for the Better

Oregon would have done better much better in working on the third phase if it had known of the Vermont study started in the 1940s with George Brooks (who was not related to Dean Brooks, the superintendent of OSH at that time). The Vermont project was envisioned as a direct attack on institutionalization. This project selected the most difficult patients in Vermont State Hospital. Some of these patients were so ill they smeared their own feces, had remained silent for years and had other major behavioral problems. None of them had any kind of therapeutic response to psychiatric medications.

Brooks started the study by acknowledging that he didn’t know what to do and, maybe more importantly, he admitted it to these patients and so he asked them what they wanted. Somewhat to his surprise, they told him they wanted to get out of the hospital and lead a different life. Brooks then asked them more questions about what it would take. Based on their responses, he began to think in terms of recovery. He provided them with consistent staffing, housing and other community supports, and it turned out to have a profound effect.

Courtenay Harding began to study what happened to these patients over the long term, and she also compared their outcomes with another large, matched group in Maine.  She recounted the results of the Vermont study in her recent book, Recovery from Schizophrenia. The outcomes she assessed were directly related to the goals of deinstitutionalization—fewer symptoms, more employment and social functioning. Harding’s comparative data analysis showed that “Vermont, with its comprehensive, coordinated system and innovative model demonstration rehabilitation program, appeared to have produced significantly more employment, fewer symptoms, and much better community functioning” compared to the Maine group.

Oregon began to employ the findings and principles of the Vermont study in 1980. First, it began contracting with an entirely peer organized agency, Mind Empowered Inc. (MEI), in the late 1980s, to run a consumer-operated day program. The executive director, Garrett Smith, served as the evaluator for the Dual Diagnosis Demonstration Project starting in 1987. The state’s Mental Health Division, led by the commissioner, Barry Kast, recognized that MEI could also operate an additional service, so it funded the Office of Consumer Technical Assistance.

Oregon also made progress by starting a program to increase safe and affordable housing. It was staffed by a person with expertise in developing housing in the state’s mental health office.

Partly as a result of the Dual Diagnosis Demonstration Project, the state also began developing programs with the recognition that 50% of people in the community with major mental health problems were also struggling with substance use. These were people who were ending up being “trans-institutionalized” into jails and prisons.

In 1990, a consumer case management project operated by MEI was funded and assigned the 35 most difficult to discharge patients from Dammasch. It began by training peers who had been patients themselves to be the case managers. It worked for almost all of the patients. This was obviously an unorthodox approach to deinstitutionalization. The program was recognized in the US Surgeon General’s Report on Mental Health as one of the first consumer-operated service approaches in the United States. It was described in Hospital and Community Psychiatry in an article published in The Chronic Patient, a column by the leading researcher in the world on deinstitutionalization, Leona Bachrach. Among other lessons, this kind of approach took state leadership, courage and financing.

A forced deinstitutionalization initiative came about in 1994 when a state fiscal crisis and the overcrowded, severely troubled Dammasch State Hospital, with nearly 400 beds, had to be closed. The decision was made after an 18-year-old patient had been choked to death by aides using a hospital- approved policy called “The Bum’s Rush.” Several seniors had also choked to death on breakfast that was too difficult to swallow. Because these fatal incidents and fiscal problems occurred at the same time, there was an immediate need to empty the hospital in 1994 by discharging as many patients as possible. This was done by creating individualized services in the community and using Medicaid funding to pay for them. Service planners evaluated each patient who could be discharged, and created housing slots and residential programs at secure facilities. Two hundred patients gained access to these programs.

With guidance from Bachrach, an “extended care management team” was created to work with people who could be moved to lesser levels of care when they were ready to do so, which opened up capacity for discharging more state hospital patients. The final 197 patients had to be transferred to OSH, but at least no one was discharged to the community without a plan. The closure project was successful enough that in the next legislative session 200 more individual placement resources were approved and implemented.

Dual Diagnosis Anonymous of Oregon (DDA) is another example of a peer resource that may at first seem out of place in this history of deinstitutionalization, but it has supported hundreds of people who would otherwise be at risk for hospitalization or jail. One member said this when asked by DDA to provide a quote:

“DDA helped me face my addiction and mental health struggles before they cost me my freedom—or my life. The fellowship gave me the support I needed to stay sober and out of prison. It taught me how to ask for help and take my recovery seriously. Because of DDA, I started The Sober Sailor to give back and help others find the same hope.”

Like AA and NA, DDA uses the 12 steps, but adds an additional five steps that are specific to people dealing with mental health challenges. Meetings are more flexible than the better-known self-help groups, plus DDA organizes picnics, camping trips, bowling and other social outings.

Their symptoms have often made the DDA people unacceptable and stigmatized in regular 12-step meetings. Most have spent time in psychiatric hospitals, jails or prisons. Members have almost always been diagnosed and understand themselves through their diagnoses. But they begin to shed their diagnostic identities, and are understood by others who have been through similar experiences. They relate to each other because of those experiences and feel accepted by each other. They learn from each other, and give support that most professionals cannot. Here is an example shared by a member of the value of being a member of DDA, when asked by the DDA to provide a quote:

“DDA does amazing things for the dual diagnosed and drug affected population. This is the kind of help our community desperately needs! DDA is a game changer for so many people, without DDA there would be so many people lost. I have experienced the rewards of going to and facilitating DDA meetings. It gives a feeling of acceptance and understanding that is not found in other places. DDA is my life. I would not be sober without it. DDA is a must have. DDA has helped me change my life around for the better.”

Another example of improved community services that exist today is Oregon’s Peer Respite program. The legislature has approved the creation of four respites, with a grant of up to $6 million total. One of the four—Folktime in Portland—is now open. These respites will provide an alternative to hospitalization and be operated entirely by people who have experienced mental health problems themselves and who work for organizations that are themselves entirely peer run. The peer respites strive to provide crisis services in homelike, short-term environments to prevent psychiatric hospitalizations. They are modeled after programs in California, Connecticut, Florida and many other states.

There is one more program designed to prevent people from being admitted to state hospitals or jails or prisons. The individuals at risk were those who “don’t make appointments.” Many of these “high risk” individuals become involved in the criminal world and end up in a state hospital as a result of their mental health challenges.

This program identified people who had stayed away from mental health supports that would help them stay out of trouble. The program assigned peers to do initial outreach to find them, engage with them, and, when the person was ready, found other peers who, one at a time, “became like furniture” in the person’s life. They provided peer support and helped them engage with ways to recover so they would not end up hospitalized or arrested. This kind of program is voluntary and is built on their developing trust in non-clinical people to help them make better decisions for themselves, such as developing other supportive relationships and staying away from alcohol and drugs. This program has proved to be quite successful in reducing hospitalizations and arrests.

Lessons to Be Learned About Deinstitutionalization in Oregon

1. Deinstitutionalization did not stop with the initial discharge of patients in the early and most dramatic decreases in state hospital capacity. It has continued in phases up to the present time.
2. The problems that came with deinstitutionalization were not with deinstitutionalization itself but the way it was implemented.
3. There were ways to provide services to replace beds in state hospitals but they were not known and, in many cases, built on a medical model that could not accept the concept of recovery. Instead, they were built on the belief that major mental health challenges were life-long and that professionals know best.
4. Oregon provides evidence that programs built on giving hope and given the necessary resources, especially those offered by peers, can help people recover and build new lives.
5. State leadership and financial supports are necessary to get such programs started and funded.

My sixth chapter in this series will report on individuals who have advocated for significant changes in Oregon’s mental health system over the past four decades.