Deinstitutionalisation

Deinstitutionalisation (or deinstitutionalization) is the process of replacing long-stay psychiatric hospitals with less isolated community mental health services for those diagnosed with a mental disorder or developmental disability. Deinstitutionalisation works in two ways: the first focuses on reducing the population size of mental institutions by releasing patients, shortening stays, and reducing both admissions and readmission rates; the second focuses on reforming mental hospitals' institutional processes so as to reduce or eliminate reinforcement of dependency, hopelessness, learned helplessness, and other maladaptive behaviours.^[1]

According to psychiatrist Leon Eisenberg, deinstitutionalisation has been an overall benefit for most psychiatric patients, though many have been left homeless and without care.^[2] The deinstitutionalisation movement was initiated by three factors:

• A socio-political movement for community mental health services and open hospitals;
• The advent of psychotropic drugs able to manage psychotic episodes;
• Financial imperatives (in the US specifically, to shift costs from state to federal budgets)^[2]

According to American psychiatrist Loren Mosher, most deinstitutionalization in the USA took place after 1972, as a result of the availability of SSI and Social Security Disability, long after the antipsychotic drugs were used universally in state hospitals.^[3] This period marked the growth in community support funds and community development, including early group homes, the first community mental health apartment programs, drop-in and transitional employment, and sheltered workshops in the community which predated community forms of supportive housing and supported living.

According to psychiatrist and author Thomas Szasz, deinstitutionalisation is the policy and practice of transferring homeless, involuntarily hospitalised mental patients from state mental hospitals into many different kinds of de facto psychiatric institutions funded largely by the federal government. These federally subsidised institutions began in the United States and were quickly adopted by most Western governments. The plan was set in motion by the Community Mental Health Act as a part of John F. Kennedy's legislation and passed by the U.S. Congress in 1963, mandating the appointment of a commission to make recommendations for "combating mental illness in the United States".^[4]

In many cases the deinstitutionalisation of the mentally ill in the Western world from the 1960s onward has translated into policies of "community release". Individuals who previously would have been in mental institutions are no longer continuously supervised by health care workers. Some experts, such as E. Fuller Torrey, have considered deinstitutionalisation to be a failure,^[5] while some consider many aspects of institutionalization to have been worse.

Origins

19th century

The 19th century saw a large expansion in the number and size of asylums in Western industrialised countries. Although initially based on principles of moral treatment, they became overstretched, non-therapeutic, isolated in location, and neglectful of patients.^[6]

20th century

By the beginning of the 20th century, increasing admissions had resulted in serious overcrowding, causing many problems for psychiatric institutions. Funding was often cut, especially during periods of economic decline and wartime. Asylums became notorious for poor living conditions, lack of hygiene, overcrowding, ill-treatment, and abuse of patients; many patients starved to death.^[7]

The first community-based alternatives were suggested and tentatively implemented in the 1920s and 1930s, although asylum numbers continued to increase up to the 1950s. The movement for deinstitutionalisation moved to the forefront in various countries during the 1950s and 1960s with the advent of chlorpromazine and other antipsychotic drugs.

The prevailing public arguments, time of onset, and pace of reforms varied by country.^[7] In the United States, class action lawsuits and the scrutiny of institutions through disability activism and antipsychiatry helped expose poor conditions and treatment. Sociologists and others argued that such institutions maintained or created dependency, passivity, exclusion, and disability, which caused people to remain institutionalised. Rosenhan's experiment in 1973 "accelerated the movement to reform mental institutions and to deinstitutionalize as many mental patients as possible."^[8]

A prevailing argument claimed that community services would be cheaper and that new psychiatric medications made it more feasible to release people into the community.^[9] Mental health professionals, public officials, families, advocacy groups, public citizens, and unions held differing views on deinstitutionalisation.^[10]

A key text in the development of deinstitutionalisation was Asylums: Essays on the Social Situation of Mental Patients and Other Inmates, a 1961 book by sociologist Erving Goffman.^{[11][11][12][13]} The book is one of the first sociological examinations of the social situation of mental patients, the hospital.^[14] Based on his participant observation field work, the book details Goffman's theory of the "total institution" (principally in the example he gives, as the title of the book indicates, mental institutions) and the process by which it takes efforts to maintain predictable and regular behavior on the part of both "guard" and "captor," suggesting that many of the features of such institutions serve the ritual function of ensuring that both classes of people know their function and social role, in other words of "institutionalizing" them.

Franco Basaglia, a leading Italian psychiatrist who inspired and was the architect of the psychiatric reform in Italy, also defined mental hospital as an oppressive, locked and total institution in which prison-like, punitive rules are applied, in order to gradually eliminate its own contents, and patients, doctors and nurses are all subjected (at different levels) to the same process of institutionalism.^[15]

The American Association for the Abolition of Involuntary Mental Hospitalization (AAAIMH) was an organization founded in 1970 by Thomas Szasz, George Alexander, and Erving Goffman for the purpose of abolishing involuntary psychiatric intervention, particularly involuntary commitment, against individuals.^[16] The founding of the AAAIMH was announced by Szasz in 1971 in the American Journal of Public Health^[17] and American Journal of Psychiatry.^[18] The association provided legal help to psychiatric patients and published a journal, The Abolitionist.^[19] The organization was dissolved in 1980.^[19][20]

American psychiatrist Loren Mosher noticed that the psychiatric institution itself gave him master classes in the art of the "total institution": labeling, unnecessary dependency, the induction and perpetuation of powerlessness, the degradation ceremony, authoritarianism, and the primacy of institutional needs over those of the persons it was ostensibly there to serve-the patients.^[3]

In New York ARC v. Rockefeller, parents of 5,000 residents at the Willowbrook State School in Staten Island, New York, filed suit over the inhumane living conditions at that institution, where residents were abused and neglected. A 1972 television broadcast from the Willowbrook State School, titled "Willowbrook: The Last Great Disgrace," outraged the general public. However, it took 3 years from the time the lawsuit documents were filed before the consent judgement was signed. In 1975, the consent judgement was signed, and it committed New York state to improve community placement for the now designated "Willowbrook Class." The Willowbrook State School was closed in 1987, and all but about 150 of the former Willowbrook residents were moved to group homes by 1992.^{[21][22][23][24][25]}

In 1973, a federal district court ruled in Souder v. Brennan that patients in mental health institutions must be considered employees and paid the minimum wage required by the Fair Labor Standards Act of 1938 whenever they performed any activity that conferred an economic benefit on an institution. Following this ruling, institutional peonage was outlawed, as evidenced in Pennsylvania's Institutional Peonage Abolishment Act of 1973.

Many assume that the advent of modern psychotropic medications was the catalyst for deinstitutionalization in the U.S. However, large numbers of patients began leaving state institutions only after new laws made unpaid patient labor illegal. In other words, when patients no longer worked for free, the economic viability of many state institutions ceased and this led to the closing of many state hospitals.^[26]

Consequences

With the closing of these state mental institutions it has become increasingly difficult for people who suffer from severe mental illness to receive treatment in a facility. Many mentally ill individuals were left homeless after Deinstitutionalization, making up one-third of the homeless population (D.E. Torrey). Today the most prominent treatment for the severely mentally ill is incarceration in a correctional facility, where mentally ill individuals are not receiving adequate care for their disorder.^[27]

Community services that developed include supportive housing with full or partial supervision and specialised teams (such as assertive community treatment and early intervention teams). Costs have been reported as generally equivalent to inpatient hospitalisation, even lower in some cases (depending on how well or poorly funded the community alternatives are).^[7]

Although deinstitutionalisation has been positive for the majority of patients, it also has severe shortcomings. Expectations that community care would lead to fuller social integration have not been achieved; many remain without work, have limited social contacts, and often live in sheltered environments.^[28]

New community services are often uncoordinated and unable to meet complex needs. Services in the community sometimes isolate the mentally ill within a new ghetto, where service users meet each other but have little contact with the rest of the public community. It has been said that instead of "community psychiatry", reforms established a "psychiatric community".^[7]

Existing patients are often discharged without sufficient preparation or support. A greater proportion of people with mental disorders become homeless or go to prison.^[7] Families can often play a crucial role in the care of those who would typically be placed in long-term treatment centres. However, many mentally ill people are resistant to such help due to the nature of their conditions. The majority of those who would be under continuous care in long-stay psychiatric hospitals are paranoid and delusional to the point that they refuse help, believing they do not need it, which makes it difficult to treat them.^[29]

Violence

Victimisation

Moves to community living and services have led to various concerns and fears, from both the individuals themselves and other members of the community. Over a quarter of individuals accessing community mental health services in a US inner-city area are victims of at least one violent crime per year, a proportion eleven times higher than the inner-city average. The elevated victim rate holds for every category of crime, including rape/sexual assault, other violent assaults, and personal and property theft. Victimisation rates are similar to those with developmental disabilities.^[30][31]

Misconceptions

Despite perceptions by the public and media that people with mental disorders released into the community are more likely to be dangerous and violent, a large study indicated that those without substance abuse symptoms are no more likely to commit violence than others without substance abuse symptoms in their neighborhoods, which were usually economically deprived and high in substance abuse and crime. The study also reported that a higher proportion of the patients than of the others in the neighborhoods reported symptoms of substance abuse.^[32]

Findings on violence committed by those with mental disorders in the community have been inconsistent and related to numerous factors; a higher rate of more serious offences such as homicide have sometimes been found but, despite high-profile homicide cases, the evidence suggests this has not been increased by deinstitutionalisation.^[33][34][35] The aggression and violence that does occur, in either direction, is usually within family settings rather than between strangers.^[36]

Worldwide

Asia

Hong Kong

In Hong Kong, a number of residential care services such as halfway houses, long-stay care homes, supported hostels are provided for the discharged patients. In addition, community support services such as rehabilitation day services and mental health care have been launched to facilitate the patients' re-integration into the community.

Japan

In Japan, the number of hospital beds has risen steadily over the last few decades.^[7]

New Zealand

New Zealand established a reconciliation initiative in 2005 to address the ongoing compensation payouts to ex-patients of state-run mental institutions in the 1970s to 1990s. A number of grievances were heard, including: poor reasons for admissions; unsanitary and overcrowded conditions; lack of communication to patients and family members; physical violence and sexual misconduct and abuse; inadequate mechanisms for dealing with complaints; pressures and difficulties for staff, within an authoritarian hierarchy based on containment; fear and humiliation in the misuse of seclusion; over-use and abuse of ECT, psychiatric medications, and other treatments as punishments, including group therapy, with continued adverse effects; lack of support on discharge; interrupted lives and lost potential; and continued stigma, prejudice, and emotional distress and trauma.

There were some references to instances of helpful aspects or kindnesses despite the system. Participants were offered counselling to help them deal with their experiences, along with advice on their rights, including access to records and legal redress.^[37]

Africa

Uganda has one psychiatric hospital.^[7]

Europe

In some countries where deinstitutionalisation has occurred, "re-institutionalisation", or relocation to different institutions, has begun, as evidenced by increases in the number of supported housing facilities, forensic psychiatric beds, and the growing prison population.^[38]

Some developing European countries still rely on asylums.

Italy

Italy was the first country to begin the deinstitutionalisation of mental health care and to develop a community-based psychiatric system.^[39] The Italian system served as a model of effective service and paved the way for deinstitutionalisation of mental patients.^[39] Since the late 1960s, the Italian physician Giorgio Antonucci questioned the basis itself of psychiatry; from 1973 to 1996 Antonucci worked on the dismantling of the psychiatric hospitals Osservanza and Luigi Lolli of Imola and the liberation – and restitution to life – of the people there secluded.^[40] In 1978, the Basaglia Law had started Italian psychiatric reform that resulted in the end of the Italian state mental hospital system in 1998.^[41]

The reform was focused on the gradual dismantlement of psychiatric hospitals, which required an effective community mental health service.^[15]:665 The object of community care was to reverse the long-accepted practice of isolating the mentally ill in large institutions and to promote their integration in a socially stimulating environment, while avoiding subjecting them to excessive social pressures.^[15]:664

The work of Giorgio Antonucci, instead of changing the form of commitment from the mental hospital to other forms of coercion, questions the basis of psychiatry, affirming that mental hospitals are the essence of psychiatry and rejecting any possible reform of psychiatry, that must be completely eliminated.^[42]

United Kingdom

In the United Kingdom, the trend towards deinstitutionalisation began in the 1950s. Enoch Powell, the Minister of Health in the early 1960s, criticized psychiatric institutions and called for most of the care to be transferred to general hospitals and the community. In 1983, the government of Margaret Thatcher began the Care in the Community initiative to reduce the number of mental hospitals.

North America

United States

The United States has experienced two waves of deinstitutionalization. The first wave began in the 1950s and targeted people with mental illness.^[1] The second wave began roughly 15 years later and focused on individuals who had been diagnosed with a developmental disability.^[1] Deinstitutionalization continues today, though the movements are growing smaller as fewer people are sent to institutions.

Numerous social forces led to a move for deinstitutionalization; researchers generally give credit to six main factors: criticisms of public mental hospitals, incorporation of mind-altering drugs in treatment, support from President Kennedy for federal policy changes, shifts to community-based care, changes in public perception, and individual states' desires to reduce costs from mental hospitals.^[1]

Criticisms of public mental hospitals

The public's awareness of conditions in mental institutions began to increase during World War II. Conscientious objectors (COs) of the war were assigned to alternative positions which suffered from manpower shortages.^[1] Around 2,000 COs were assigned to work in understaffed mental institutions.^[1] In 1946, an exposé in Life magazine detailed the shortfalls of many mental health facilities.^[1] This exposé was one of the first featured articles about the quality of mental institutions.^[1]

Following WWII, articles and exposés about the mental hospital conditions bombarded popular and scholarly magazines and periodicals. The COs from the 1946 Life exposé formed the National Mental Health Foundation, which raised public support and successfully convinced states to increase funding for mental institutions.^[1] Five years later, the National Mental Health Foundation merged with the Hygiene and Psychiatric Foundation to form the National Association of Mental Health.

During WWII, it was found that 1 out of 8 men considered for military service was rejected based on a neurological or psychiatric problem.^[1] This increased awareness of the prevalence of mental illnesses, and people began to realize the costs associated with admission to mental institutions (i.e. cost of lost productivity and of mental health services).^[1]

Since numerous individuals suffering from mental illness had served in the military, many began to believe that more knowledge about mental illness and better services would not only benefit those who served but also national security as a whole.^[1] Congress passed the National Mental Health Act of 1946, which created the National Institute of Mental Health (NIMH). NIMH was pivotal in funding research for the developing mental health field.^[1]

In New York ARC v. Rockefeller, parents of 5,000 residents at the Willowbrook State School in Staten Island, New York, filed suit over the inhumane living conditions at that institution, where residents were abused and neglected. A 1972 television broadcast from the Willowbrook State School, titled "Willowbrook: The Last Great Disgrace," outraged the general public. However, it took 3 years from the time the lawsuit documents were filed before the consent judgement was signed. In 1975, the consent judgement was signed, and it committed New York state to improve community placement for the now designated "Willowbrook Class." The Willowbrook State School was closed in 1987, and all but about 150 of the former Willowbrook residents were moved to group homes by 1992.^{[21][22][23][24][25]}

In 1973, a federal district court ruled in Souder v. Brennan that patients in mental health institutions must be considered employees and paid the minimum wage required by the Fair Labor Standards Act of 1938 whenever they performed any activity that conferred an economic benefit on an institution. Following this ruling, institutional peonage was outlawed, as evidenced in Pennsylvania's Institutional Peonage Abolishment Act of 1973.

Rosenhan's experiment in 1973 "accelerated the movement to reform mental institutions and to deinstitutionalize as many mental patients as possible."^[8]

Pharmacotherapy

During the 1950s, new drugs became available and were incorporated into treatment for the mentally ill. The new drugs effectively reduced severe symptoms, allowing the mentally ill to live in environments less stringent than institutions, such as halfway houses, nursing homes, or their own homes. Drug therapy also allowed many mentally ill to obtain employment.^[1]

President Kennedy

In 1955, the Joint Commission on Mental Health and Health was authorized to investigate problems related to the mentally ill. President John F. Kennedy had a special interest in the issue of mental health because his sister, Rosemary, had been lobotomized at the age of 23 at the request of her father.^[1] Shortly after his inauguration, Kennedy appointed a special President's Panel of Mental Retardation.^[1] The panel included professionals and leaders of the organization. In 1962, the panel published a report with 112 recommendations to better serve the mentally ill.^[1]

In conjunction with the Joint Commission on Mental Health and Health, the Presidential Panel of Mental Retardation, and Kennedy's influence, two important pieces of legislation were passed in 1963: the Maternal and Child Health and Mental Retardation Planning Amendments, which increased funding for research on the prevention of retardation, and the Mental Retardation Facilities and Community Mental Health Centers Construction Act, which provided funding for community facilities that served people with mental disabilities.^[1] Both acts furthered the process of deinstitutionalization.

Shift to community-based care

In general, professionals, civil rights leaders, and humanitarians saw the shift from institutional confinement to local care as the appropriate approach.^[1] The deinstitutionalization movement started off slowly but gained momentum as it adopted philosophies from the Civil Rights Movement.^[1] During the 1960s, deinstitutionalization increased dramatically, and the average length of stay within mental institutions decreased by more than half.^[1] Many patients began to be placed in community care facilities instead of long-term care institutions.^[1]

Changing public opinion

While public opinion of the mentally ill has improved somewhat, it is still often stigmatized. Advocacy movements in support of mental health have emerged.^[1] These movements focus on reducing stigma and discrimination and increasing support groups and awareness. The consumer or ex-patient movement, began as protests in the 1970s, forming groups such as Liberation of Mental Patients, Project Release, Insane Liberation Front, and the National Alliance on Mental Illness (NAMI).^[1]

Many of the participants consisted of ex-patients of mental institutions who felt the need to challenge the system's treatment of the mentally ill.^[1] Initially, this movement targeted issues surrounding involuntary commitment, use of electroconvulsive therapy, anti-psychotic medication, and coercive psychiatry.^[1] Many of these advocacy groups were successful in the judiciary system. In 1975, the United States Court of Appeals for the First Circuit ruled in favour of the Mental Patient's Liberation Front of Rogers v. Okin,^[1] establishing the right of a patient to refuse treatment.

A 1975 award-winning film, One Flew Over the Cuckoo's Nest, sent a message regarding the rights of those committed involuntarily. That same year, the U.S. Supreme Court restricted the rights of states to incarcerate someone who was not violent. This was followed up with a 1978 ruling further restricting states from confining anyone involuntarily for mental illness.

NAMI successfully lobbied to improve mental health services and gain equality of insurance coverage for mental illnesses.^[1] In 1996, the Mental Health Parity Act was enacted into law, realizing the mental health movement's goal of equal insurance coverage.

In 1955 for every 100,000 US citizens there was 340 psychiatric hospital beds. In 2005 that number had diminished to 17 per 100,000.

Reducing costs

As hospitalization costs increased, both the federal and state governments were motivated to find less expensive alternatives to hospitalization.^[1] The 1965 amendments to Social Security shifted about 50% of the mental health care costs from states to the federal government,^[1] motivating the government to promote deinstitutionalization.

The increase in homelessness was seen as related to deinstitutionalization.^[43][44][45] Studies from the late 1980s indicated that one-third to one-half of homeless people had severe psychiatric disorders, often co-occurring with substance abuse.^[46][47]

A process of indirect cost-shifting may have led to a form of "re-institutionalization" through the increased use of jail detention for those with mental disorders deemed unmanageable and noncompliant.^[48][49] When laws were enacted requiring communities to take more responsibility for mental health care, necessary funding was often absent, and jail became the default option,^[50] being cheaper than psychiatric care.^[48]

In summer 2009, author and columnist Heather Mac Donald stated in City Journal, "jails have become society's primary mental institutions, though few have the funding or expertise to carry out that role properly... at Rikers, 28 percent of the inmates require mental health services, a number that rises each year."^[51]

South America

In several South American countries,, such as in Argentina, the total number of beds in asylum-type institutions has decreased, replaced by psychiatric inpatient units in general hospitals and other local settings.^[7]

See also

• Obligatory Dangerousness Criterion
• Outpatient commitment
• Homeless dumping
• Giorgio Antonucci

General

• Ablism
• Institutional syndrome
• Involuntary commitment
• Inclusion (disability rights)
• Mental health
• Public housing
• Psychiatric survivors movement
• Right to housing

References

Bibliography

• Borus, J.F. (August 1981). "Sounding Board. Deinstitutionalization of the chronically mentally ill". New England Journal of Medicine. 305 (6): 339–42. doi:10.1056/NEJM198108063050609. PMID 7242636. 
• Pepper, B.; Ryglewicz, H (1985). "The role of the state hospital: a new mandate for a new era". Psychiatric Quarterly. 57 (3–4): 230–57. doi:10.1007/BF01277617. PMID 3842522. 
• Sharfstein, S.S. (August 1979). "Community mental health centers: returning to basics". American Journal of Psychiatry. 136 (8): 1077–9. doi:10.1176/ajp.136.8.1077. PMID 464136. 
• Torrey, E. Fuller; Zdanowicz, Mary (4 August 1998). "Why deinstitutionalization turned deadly". Wall Street Journal. 
• Davis, DeWayne L.; Fox-Grage, Wendy; Gehshan, Shelly (January 2000). "Deinstitutionalization of Persons with Developmental Disabilities: A Technical Assistance Report for Legislators" (PDF). National Conference of State Legislatures. 
• Torrey, E. Fuller (1997). "Deinstitutionalization: A Psychiatric "Titanic"". PBS Frontline. 
• Torrey, E. Fuller (1997). Out of the shadows: confronting America's mental illness crisis. New York: John Wiley. ISBN 0-471-16161-6. 

Further reading

• Taylor, S.J.; Searl, S. (1987). "The disabled in America: History, policy and trends". In P. Knoblock. Understanding Exceptional Children and Youth. Boston: Little, Brown. pp. 5–64. 
• Arce, A.A.; Vergare, M.J. (December 1987). "Homelessness, the chronic mentally ill and community mental health centers". Community Mental Health Journal. 23 (4): 242–9. PMID 3440376. 
• Institute of Medicine (US) Committee on Health Care for Homeless People (1988). Homelessness, Health, and Human Needs. Washington, D.C: National Academy Press. p. 97. ISBN 0-309-03832-4. 
• Kramer, M. (1969). "Statistics of Mental Disorders in the United States: Current Status, Some Urgent Needs and Suggested Solutions". Journal of the Royal Statistical Society. Series A (General). 132 (3): 353–407. doi:10.2307/2344118. JSTOR 2344118. 
• Lamb, H. Richard; Weinberger, Linda E (April 1998). "Persons With Severe Mental Illness in Jails and Prisons: A Review". Psychiatric Services. 49 (4): 483–492. doi:10.1176/ps.49.4.483. PMID 9550238. Retrieved 13 November 2010. 
• Rochefort, David A. (1993). From Poorhouses to Homelessness: Policy Analysis and Mental Health Care. Westport, Connecticut: Auburn House. ISBN 0-86569-237-8. 
• Rudin, E.; McInnes, R.S. (July 1963). "Community Mental Health Services—Five Years of Operation Under the California Law". California Medicine. 99 (1): 9–11. PMC 1515154. PMID 13982995. 
• Sharfstein, Steven S. (May 2000). "Whatever happened to community mental health?". Psychiatric Services. American Psychiatric Association. 51 (5): 616–20. doi:10.1176/appi.ps.51.5.616. PMID 10783179. 
• Stavis, Paul F. (April–May 1991). "Homeward Bound: The Developing Legal Right to a Home in the Community". Quality of Care Newsletter (48). New York State Commission on Quality of Care and Advocacy for Persons with Disabilities. Archived from the original on January 11, 2009. 
• Apollonio, D.E.; Malone, R.E. (December 2005). "Marketing to the marginalised: tobacco industry targeting of the homeless and mentally ill" (PDF). Tobacco Control. 14 (6): 409–15. doi:10.1136/tc.2005.011890. PMC 1748120. PMID 16319365.