Filthy living conditions, inadequate care, metrazol induced convulsions, and electroshock therapy without the use of anesthetic: this was the stark reality for the “mentally insane” in insane asylums during the 19th century and leading up to the mid-20th century. The first mental hospital fully supported by state funds in America opened in 1833: Worcester State Hospital, located in Massachusetts (Placzec). Many more followed in the mid-19th century. By the 1960s, large numbers of patients were being transferred out of mental hospitals. Known as “deinstitutionalisation”, this era of downsizing and closures of psychiatric hospitals led to the rise of alternative mental health care in the community (Chow, Priebe 2). Most people stood behind deinstitutionalism, both pro-psychiatry and anti-psychiatry (a movement that viewed psychiatric treatment as more damaging than helpful to patients). Dr. Harry Solomon, President of the American Psychiatric Association from 1957-58, gave his presidential address to the APA advocating for liquidation of large mental hospitals (Slovenko 139); yet, with exceptions, mental hospitals in 1958 were not the “snake pits” they used to be. They were no longer full beyond capacity nor full of horror and confusion. So why did deinstitutionalism happen in the first place? While the reasons may be justifiable, the unforeseen consequences are not.
In 1955, mental hospitals were common institutions for the mentally ill to live in. At the time, America’s population was 165.9 million people, 558,000 of which were institutionalized. In 1994, America’s population reached 260 million. If the percentage of patients institutionalized was constant, in 1994, there would be 885,000 patients. However, in actuality, there were 71,600 patients hospitalized in 1994, but 92 percent of people hospitalized in 1994 no longer were in 1995 (Torrey ch. 1).
My great aunt, Anne Rispone, worked with mental health patients in Long Island from 1976 to 1997. When talking to her, I was surprised to find that neither mental hospitals nor deinstitutionalism matched the preconceived notions I held. Anne recalled how two hospitals, Kings Park Psychiatric Center and Central Islip Psychiatric Center, shut down in the fall of 1996. Each held about 3000 patients. Some patients were relocated to Pilgrim Psychiatric Center, and the rest were released into the communities. This should have been good. Weren’t patients in mental hospitals grossly mistreated? My aunt took pride in her job, and cared about her patients. She found it was similar to many other lines of work; some people do good work, and some do not. “But for the most part I found that the women I worked with were very caring and did an excellent job,” she said. I still was not convinced mental hospitals were safe and well-kept places. Then Anne told me about JCAHO.
JCAHO, The Joint Commission, started accrediting providers of programs and services for people with intellectual and developmental disabilities in 1969. In 1972, the program expanded to include the accreditation of mental health services, including mental hospitals (Facts about Behavioral Health). The wards could not afford to be the “snake pits” they used to be. While accreditation was not necessary, many state-run hospitals would rely on JCAHO to oversee their hospitals. The hospitals would be checked, and, even better, the visits would be random to make sure the hospitals were held up to standard levels. However, thousands of patients across the nation were still being released from hospitals, many into outpatient clinics. I struggled to understand why.
In 1954, Chlorpromazine, marketed as Thorazine, began distribution. This was the first antipsychotic drug approved by the Food and Drug Administration, claimed to treat Schizophrenia, psychotic disorders, manic phase of bipolar disorder, and severe behavioral problems in children (Thorazine Oral). The drug resulted in a weighty shift in treatment from invasive lobotomies to an easily administered drug. With reports of the drug sending schizophrenic hallucinations and delusions into remission, the government saw an opportunity to make the deinstitutionalism vision a reality. President Kennedy is quoted in the New York Times advocating that the new drugs made it “possible for most of the mentally ill to be successfully and quickly treated in their own communities and returned to a useful place in society” (Lindamood). Thorazine proved to be a quick treatment for patients, considering fifty to sixty percent of patients deinstitutionalized were diagnosed with schizophrenia , yet the mentally ill’s useful place in society should still be questioned (Torrey ch. 1).
Drugs supported deinstitutionalism. Yet an even stronger force behind the movement came from the evolving ideology on psychiatry and the mentally ill. In 1962, Ken Kesey published One Flew Over the Cuckoo’s Nest. It is a fictitious book reflecting Kesey’s experience working as a nurse’s aide in the psychiatric wing of Menlo Park Veterans Hospital in California. The novel fixated on the abuse in mental hospitals, and became an international bestseller (Amadeo). Public opinion was turning, especially against electroshock therapy and lobotomies.
Thousands imprisoned: locked up, stowed away, and exiled from society. They played no role in our communities despite not breaking a law. This was the dystopian-like picture often representing the psychiatric hospitals in the 1950s. The Civil Rights Movement saw this image, the images from One Flew Over the Cuckoo’s Nest, and demanded justice.
The goal of deinstitutionalism, further defined by President Jimmy Carter, is to maintain “the 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” (Torrey ch. 1). The mental hospital was deemed a place that deprived liberty and promoted death. The goal was to replace the mental hospitals with community based facilities where one could be cared and treated for if they desired it, at less expense (Slovenko 139). A degree of freedom was afforded to many of the deinstitutionalized when they were moved to Single Room Occupancies (SRO), or adult homes. The people living in SROs rented out a room in someone’s home, where there would be no supervised care. Usually, the patients would have one cooked meal a day. Some patients were put into family care homes. Once the tests started coming out for outpatient clinics, my great aunt went back to school to take them and became a social work assistant. One of her jobs was to check in on family care patients and their homes. “Fortunately, my family care providers were all wonderful and took excellent care of the patients”. These homes were fully supervised with cooks, aids, and people who ran the home. The state even provided them with monthly clothing allowances, so the family care provider would take the patients shopping. Not all were so lucky however. Many of the older population lived in substandard adult homes, privately run homes that had cooks and aids, “and that was very sad”. Most of them were on welfare.
While living in SROs and family homes, many patients would go to their local mental health clinic once a month for their group meetings, an interview, and medication. When Anne retired, they were consolidating clinics. In her case, they were making three clinics into one. There was not as much follow up as there used to be. People were advocating for patients to have freedom, and that’s what they were given. It’s funny how prison and freedom have their similarities.
Tax cuts and freedom: it sounded good. Many different acts and laws were put into place and taken away throughout deinstitutionalism, but the ones that sparked the movement the most were the Community Mental Health Act, Medicaid and Medicare. President Kennedy wanted mental health patients to thrive in communities. His sister, Rosemary Kennedy, had mental disabilities. She received a lobotomy at 23 years old, but it failed and left her permanently incapacitated. She spent the rest of her life in a mental hospital with little communication with her family. I believe John Kennedy had good intentions. He signed the Community Mental Health Act in 1963, which funded the construction of community based treatment facilities and pushed the responsibility of patients from state to federal. Fifteen years after the Community Health Act was enacted, less than half the promised centers were built (Placzec).
When Anne left her job, there were several buildings at Pilgrim housing with chronic patients in need of hospitalization. After she retired, she heard there was one building left. “I often wonder, if there was a total of 7000 to 8000 patients that were no longer hospitalized, where did they go?” They were supposed to be integrated into the community, but it’s hard to keep track of thousands of mentally ill people. Dr. John Talbott, President of the American Psychiatric Association from 1984-85, gave his presidential address to the APA on deinstitutionalism: “The presence of thousands of severely and chronically mentally ill and gravely disabled Americans wandering aimlessly across our nation’s landscape attests to the failure of our state governments’ policy of mental hospital depopulation” (Slovenko 139). It turns out affordable housing, even if readily available, is not a treatment for mental illness.
In 1967, Reagan signed the Lanterman-Petris-Short Act. This inaugurated a wave of legislation greatly restricting institutionalizing patients against their will or for indefinite amounts of time. It was the law for patient’s rights which people were advocating for. The amount of mentally ill entering the San Mateo’s criminal justice system doubled a year after the law went into effect (Placzec). Several states followed with similar involuntary commitment laws. Deinstitutionalism continued.
In 2004, there were about 100,000 psychiatric beds left in public and private hospitals in America. In the same year, studies show that 16 percent of jail inmates were seriously mentally ill (roughly 320,000 people). Anne told me some of the patients they put into the community were not ready for that, and I believe she was right. In 2004, there was more than three times as many seriously mentally ill people in jails and prisons than in mental hospitals (Amadeo).
“Without these hospitals, there’s too many people in the communities that cannot care for themselves. They can get into trouble, do weird things people don’t understand. Most of them are not violent you know, but they are pathetic.” A new dystopian image has evolved. A young woman, trapped. She does not understand. She is hired to work but cannot keep a job. It is not her fault. She may get out of her box to use the bathroom, but does not know where to go. She urinates in the street. She is arrested for indecent exposure. She may end up in prison, or back in her cardboard box. It does not matter.
I understand the reasons for deinstitutionalism: people wanted patient rights. Advances in psychiatric medicine and tax cuts at the same time as the Civil Rights Movement made deinstitutionalism a reality. Sadly, “Patients’ rights’ now means rights to deteriorate on the streets and die in back alleyways. Originally it meant the right to receive treatment in a human environment” (Slovenko 142). But that does not mean that when we see the unforeseen consequences, we should accept them.
Amadeo, Kimberly. “Learn About Deinstitutionalization, the Causes and the Effects.” The Balance, 14 Mar. 2018.
“Chapters 1, 3.” Out of the Shadows: Confronting America’s Mental Illness Crisis, by E. Fuller Torrey, New York: John Wiley & Sons, 1997.
Chow, Winnie S, and Stefan Priebe. “Understanding Psychiatric Institutionalization: a Conceptual Review.” BMC Psychiatry, vol. 13, no. 1, 2013, doi:10.1186/1471-244x-13-169.
“Facts about Behavioral Health Care Accreditation.” Jointcommission.org, The Joint Commission, 8 Dec. 2017.
Lindamood, Wes. “Thorazine.” Chemical & Engineering News: Top Pharmaceuticals: Thorazine, American Chemical Society, 2005.
Mosholt, Olivia, and Anne Rispone. “Interview.” 26 Mar. 2018.
Placzec, Jessica. “Did the Emptying of Mental Hospitals Contribute to Homelessness?” KQED, KQED Inc., 8 Dec. 2016.
Slovenko, Ralph. “Book Review: Madness in the Streets/How Psychiatry and the Law Abandoned the Mentally Ill.” The Journal of Psychiatry & Law, vol. 19, no. 1-2, 1991, pp. 139–143., doi:10.1177/0093185391019001-209.
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