The International Journal of Psychosocial Rehabilitation
Deinstitutionalization or Disowning Responsibility

'The more things change, the more they remain the same.'
Alphonse Karr.





Dr Hitesh C Sheth
Superintendent and Psychiatrist
Hospital for Mental Health

 


Citation:
Sheth HC.  (2009). Deinstitutionalization or Disowning Responsibility
. International Journal of Psychosocial Rehabilitation. Vol 13(2).   11-20

 





Correspondence: 
   Dr Hitesh C Sheth
    Superintendent and Psychiatrist
    Hospital for Mental Health
    Vikas Gruh Road 
    Jamnagar 
    Gujarat ,India
    Email: hiteshcsheth@rediffmail.com
 


Abstract:
The well intentioned deinstitutionalization movement which started with a noble aim of treating and rehabilitating mentally ill patients in community itself, so to reduce human rights violations and mitigate their sufferings, has almost failed to achieve its aim. Human right violations which are supposed to occur behind impregnable walls of mental hospitals, occurs right in front of opened eyes of society, as a result of which mentally ill patients  suffers in jails, prisons, beggar’s home, shelter homes and streets. These problems can be solved by building more mental hospitals of a small size with an open ward facility and rehabilitation center; providing employment to mentally ill patients, building more halfway homes, quarter way homes, daycare centers, sheltered workshops; providing a housing facility to the improved patients; establishing the special courts which deals with the cases pertaining to mentally ills on a preferential bases and along with it enacting the laws to protect rights of mentally ill patients.
Key Words:  Deinstitutionalization, Trans-institutionalization, Human rights violations, Mental Hospitals, Psychosocial Rehabilitation

Introduction:
Today new trend is towards the deinstitutionalization of mental hospitals, means treating the mentally ill patients in a community itself.  The policy of was deinstitutionalization was started in mid 1970. In 1963, it was believed that state mental hospitals were too often institutions for quarantining the mentally ill. In response to this perceived mental health problem,  Congress passed the Community Mental Health Centers Act to move the mentally ill out of prolonged confinement in overcrowded state custodial institutions into voluntary treatment at community mental health centers. On Oct. 31, 1963, President Kennedy who believed mental hospitals as 'snake pits' signed the Community Mental Health Centers Act into law. The policy was said to be initiated by concern for mentally ill patients. But economic consideration was not rule out. However policy of deinstitutionalization has failed miserably. President Bush’s New Freedom Commission on Mental Health has described American public mental health system as “in shambles” (Mental Health Commission Report, 2003). The results from the National Alliance for the Mentally Ill's (NAMI’s) national survey of its membership were also disappointing, it illustrated the failure of the mental health system (Hall et al. 2003). Here I have tried to discuss that how deinstitutionalization movement is affecting the mentally ill patients in both developing as well as the developed countries alike.

Problems
Deinstitutionalization or Trans-institutionalization:
An estimated 4.5 million Americans today suffer from the severest forms of brain disorders, schizophrenia and manic-depressive illness. And out of 4.5 million 1.8 million or 40 percent are not receiving any treatment on any given day, resulting in homelessness, incarceration, and violence. And one of the reasons for this condition is a failure of the deinstitutionalization policy (Fact Sheet, Treatment Advocacy Centre).So it is hardly surprising that approximately one third of homeless persons suffer from severe and disabling mental illnesses (Morrissey & Dennis, 1986; Morrissey & Levine, 1987). In Oklahoma researchers are examining whether there is a correlation between the growing number of suicides and the downsizing of the state mental hospital (Borenstein, 2001).

 Same facts are echoed in testimony of US Congressman Ted Strickland (Strickland, 2000). According to him thousands of mentally ill patients are being dumped out of state hospitals into communities that do not have the adequate services to receive them. These efforts known as "the deinstitutionalization movement", has resulted in trans-institutionalization, in which huge numbers of mentally ill individuals lands in jails, prisons, homeless shelters, and flop houses. No wonder in one study done recently, around 40% inmates of ‘Beggar’s Home’ were having mental illness (Thakker et al; 2007).

The deinstitutionalization policy, which is improperly implemented is acting like a misguided missile, because of which the helpless and defenseless inmates of the mental hospitals begs and roams on roads and footpaths; takes refuge in shelter homes and beggar’s homes; starves on streets and eats from garbage bins; are jeered in society and physically, verbally and sexually assaulted in alleys; languishes in jails and suffers in prisons; shivers in cold and simmers in heat; and sleeps on a bed of earth with a blanket of sky. We have shifted problems of mental hospitals to the streets, jails and shelter homes. While making backyards of our mental hospitals beautiful, we have made our streets ugly. The process of deinstitutionalization has turned deadly. There seems to be some truth in a saying that deinstitutionalization caused people to “die with their rights on”.

Dangers of Half Treated or Neglected Patients:
Deinstitutionalization which has now become synonym for neglect was supposed to be about creating a new system of services and supports that would allow people with mental illness and mental retardation to thrive in their communities outside of hospital settings during all of the times when they did not need hospital services (Bernstein, 2007).However purpose of the deinstitutionalization has not been served.
 
A study done by Klassen(1988) and O’Connor(1990) found that approximately 25%-30% of male subjects with at least one violent incident in their past are violent within a year of release from the hospital.  In 1993, sociologist Henry Steadman studied individuals discharged from psychiatric hospitals. He found that 27 percent of released patients reported at least one violent act within four months of discharge. Another 1992 study, by Bruce Link of Columbia University School of Public Health, reported that seriously ill individuals living in the community were three times as likely to use weapons or to "hurt someone badly" as the general population. In recent times, a    MacArthur Foundation study done by Eric Silver(2000) found that people with serious brain disorders committed twice as many acts of violence in the period immediately prior to their hospitalization, when they were not taking medication, compared with the post-hospitalization period when most of them were receiving assisted treatment.

According to a 1994 Department of Justice, Bureau of Justice Statistics Special Report, "Murder in Families," 4.3 percent of homicide committed in 1988 were by people with a history of untreated mental illness. In 1998, law enforcement officers were more likely to be killed by a person with a mental illness (13 percent) than by assailants who had a prior arrest for assaulting police or resisting arrest (Brown et al, 1998). Swanson et al. (1990), in commenting on their ECA data, stated, public fear of violence committed by the mentally disordered in the community is "largely unwarranted, though not totally groundless" (p. 769). This policy of deinstitutionalization has rendered vast swathe of mentally ill patients-dangerous to self or others- untreated or homeless.  

Prisons or Mental Hospitals
There are more persons with mental illness in jails and prisons than there are in state hospitals (Torrey, 1992).At least 9,000 people with psychiatric disabilities are released annually from New York jails and prisons without adequate housing or support services(Martell,1995). Same facts are confirmed by researchers in other way when they  found that as many as 40 to 50 percent of clients in the community mental health system might have a history of criminal arrest (Solomon, 1999).There is direct relationship between closing of mental hospitals and opening of new prisons. According to the U.S. Department of Justice, 40 mental health hospitals have closed in the past decade. During the same period, 400 new prisons have opened up (The Olympian (Washington), October 9, 2003).

The condition in a developing country like India is not so different. The writ petition filed in Supreme Court of India by Ms Sheela Barse, a social activist claimed that many children and adults were committed to jail in Calcutta as lunatics were not mentally ill at all. (Supreme Court in Writ Petition (Crl) No 237/1989.Sheela Barse versus Union of India and others, August 17, 1993) .Some were normal, some temporarily under stressor undergoing a phase of mental disturbance, and a few were mentally retarded. The commission appointed by the Supreme Court in response to this petition echoed the same facts. It said that when a mentally ill is sent to jail, which doesn’t managed them as a sick person, it results in deprivation of liberty in several ways which is more excessive than is required either for the protection of the mentally ill person or for the safety of society. The commission also rued over the fact that jails had no specialist psychiatrist position. The visit of psychiatrist was weekly fortnightly or monthly but rarely daily. And some districts even lacked that facility. Former chairman of the National Human Right Commission, Justice Ranganath Misra had issued notices to chief ministers of all the states some years ago, saying:” No mentally ill person should be kept in any jail of the country after October 31, 1996”. Still there is no improvement in condition. The caseloads are astronomically high, people routinely fall out of the community mental health systems, and over the years the number of people with mental illnesses who are put in jails and prisons has skyrocketed (Bernstein, 2007).
 
Solutions
To Give Work In Appropriate Industry:
In Chinese language a synonym of difficulty is opportunity. When giving a work to mentally challenged patients, our aim should be to transform their limitations into the strengths. This has been successfully  demonstrated by Niseeth Mehta, CEO of  ‘Microsign Products’ a company located in Bhavnagar, and produces plastic fasteners and supplies to the quality conscious companies like ‘Volvo’, ‘Mercedes’, ‘Tata Motors’, Helwett-Packard and  ‘Reliance Industries’. Although ‘People with Disability Act, 1995’ (PWD, 1995, India), reserves three percent jobs for differently abled people. The company’s 60 percent staff is differently abled. The person whose hearing is impaired is given a job at noisy engineering machine. Similarly intellectually challenged boys have been assigned a job-which any other person would find monotonous- which doesn’t affect their productivity and motivations. This doesn’t mean that one should compromise with a quality of work. The Company has almost zero attrition rates and has met tough ‘ISO-9002’ and ‘QS-9000’ quality control standards.

 Similarly a person with autistic disorder, who does repetitive works or activities, can be assigned monotonous tasks, which normal person may abhor performing, but a mentally ill patient may enjoy it. The Day care centers, halfway homes and quarter way homes should be turn into the production houses and manufacturing units of goods and articles. A person who has recovered completely or has a single episode of schizophrenia can be appointed as a supervisor who can better empathize and understand the problems of mentally ill patients.

Advantage: Western countries:
According to facts compiled by Dr. Michael Friedman, the Director of the Center for Policy and Advocacy of the Mental Health Associations of NYC and Westchester, from 2000 to 2030 the 65 and older population in the US will double from 35 million to 70 million and comprise about 20% of the American population (Friedman, 2006). In the UK in 2004, there were approximately 4 working age individuals (aged 20-64) for every 1 person aged 65 and over. By 2056 this ratio is predicted to fall to about 2:1(Tetlow, 2006).

In the western countries, where the population is stagnating or declining, providing an employment to the mentally ill patients is a good strategy to counter a labor shortage which is going to arise in future. Employment provides not only a monetary recompense but also ‘latent’ benefits — non-financial gains to the worker which include social identity and status; social contacts and support; a means of structuring and occupying time; activity and involvement; and a sense of personal achievement (Shepherd, 1989).

Thus by gainfully employing mentally ill patients we can surmount the challenge of labor shortage, which is going to arise in future. Thus we can transform not only individual’s limitations but also developed nation’s limitations into the strength.

Government of Gujarat Policy: Without Tender Purchase:
The other measures that government can take are to provide the incentives to the industries, which employ mentally ill or mentally challenged people. The Government of Gujarat (India) has given example worthy to emulate. It has issued a circular according to which goods and products made up by’ ‘Rehabilitation centers’ of ‘Hospitals for Mental Health’s’ can be purchased without issuing the tenders. The other benefit government is providing is tax benefit and free bus and railway pass at a concession rate which help to ease burden on patient’s family.

The other thing government can do is to provide subsidies or tax sops to industries which employs differently abled people. And in these efforts government is not losing any tax revenue, because it’s social and financial responsibility to rehabilitate the patients is carried out by the industries and in this way Government’s time and energy both are saved.
 
To Start More Day Care Centers and to Provide Housing Facilities:
Despite consistent evidence that access to housing and services significantly reduces hospitalizations, incarcerations, shelter use, and other expensive emergency interventions, there is a reluctance to adequately increase housing stock (Culhane, 2001). Subsequently, people with mental illness are often forced to wait years in expensive and inappropriate institutions, prisons, homeless shelters, and other emergency settings before they gain entry to housing (Stricevic, 2004). In a prospective study, Belcher (1989) found that 36% of the mentally ill patients discharged from a state hospital became homeless, at least temporarily, within six months of their discharge. Homeless people with either mental illness or substance abuse problems are more likely to return to institutional care if they are not provided with adequate housing (M. V. Kline et al., 1987; Lipton, Nutt, & Sabatini, 1988; Wittman, 1989).

 In USA the Fair Housing Amendment of 1988 extended protections of federal fair housing legislation to people with disabilities. It forbids discriminatory intent or effects of regulations concerning housing for mentally ill individuals. However situation is still grim. While there are at least 60,000 adults living with a psychiatric disability throughout the New York State who need housing, only 23,731 units of community-based housing have been developed for this population (Residential Indicator Report, 2004). As Koegel and Burnam (1988) pointed out, we must concentrate on creating environments rather than instituting treatment programs. Structure, support, and protection may be particularly critical for the most vulnerable subgroups of the homeless population, and homeless persons themselves often seek these elements (Drake et al., 1989).

The good rehabilitation strategy would be to start the more day care centers attached with a rehabilitation center.  The strategy would have a dual advantage, the  patient would remain in the institution in a day time so their relative wouldn’t have to worry about him and in night he may return at his home so he can also live in the society. The patient would be gainfully employed so he would also have a job satisfaction. The other thing is chance of relapse would also decreased as there is reduced chance of exposure to ‘Expressed Emotion (EE). As patients in high expressed emotion settings were more likely to relapse (56% compared with 17% for low expressed emotion)(Leff & Vaughn, 1985).

A scheme may be designed for the rehabilitation process for those who are not having any backing, or lack of support in the community. The Scheme may be on the basis of quarter way homes (Supported Shared Home-Like Accommodation) for all patients ready to be discharged, but are not being discharged due to family not taking them back, or lack of support in the community. They can be placed in a home-like accommodation created on the hospital campus itself (Orders of Supreme Court of India in a Civil Writ Petition No 334/2001 & 562/2001,Saarthak registered society and ANR versus Union of India and ORS,12th April 2002). This accommodation could be an existing ward converted to have a home-like environment, wherein patients can be taught of house keeping skills, cooking, shopping and can also be encouraged to take up responsibilities in the hospital for which they should be paid for and then gradually encouraged to go to the community for the work.
 
Empowering Mentally Ills by Means of Appropriate Laws
 
The Government of India has passed 'People with Disability Act', 1995(PWD ACT, 1995) to protect rights of mentally ill patients. Next important step is a proactive role of court which by giving bold judgments can set precedents that would help to mitigate suffering of mentally ill patients. In one such instance one employee who developed schizophrenia was terminated from the job. The Honorable Bombay High Court, upholding section 47 of the PWD Act which deal with nondiscrimination, ruled that the authorities should either shift employee concerned to another post with the same pay scale and service benefits or create supernumerary post until a suitable post is available(Times of India 17th November Ahmadabad Times Edition, 2004).

A similar bold judgment was delivered by the Honorable Supreme Court of India on 24/10/2007, in favor of under trial having mental illness. A supreme court of India’s bench said that all cases will be closed against those mentally unfit offenders who have been in custody for periods more than the maximum punishment prescribed for the offence allegedly committed by them. The Bench also ruled that those accused of serious offences that carry punishments of life imprisonment or death will be released on bail if they have undergone five years in custody. (Indian Express 24th October 2007). This will help to protect people like Machal Lalung, the 77 years old who spent 54 years in mental hospital at Gauhati, in Assam, as an under trial, despite of being declared 'fit to stand trial' twice(Time of India, 11th January 2006 Ahmadabad Times Edition). He was however lucky because when Honorable Supreme Court of India came to know about this case they promptly ordered to discharge him and also directed the government to pay 3 hundred thousand rupees of compensation. Many such laws and judgments are needed to protect rights of mentally ill patients

Other things that can be done is to train the police on how to identify the mentally ill patients and direct them into available treatment facility. The government can also  fund jail and prison programs that screen, evaluate and treat mentally ill inmates
 
Establishing ‘Mental Health Courts’:
One of the important steps is to create mental health courts to direct non-violent mentally ill defendants out of the revolving door of recidivism into long term, wrap-around treatment (Strickland, 2000). The America’s Law Enforcement and Mental Health Act (H.R. 2594), which has provision to establish ' Mental Health Courts' in order to direct nonviolent mentally ill offenders out of jail, into long term treatment, is right step in direction to protect right of mentally ill patients. Mental health courts are uniquely effective at reducing the recidivism of seriously mentally ill offenders because they use the power of the criminal justice court to ensure that the defendants receive long term mental health treatment (Strickland, 2000).

Establishing More Mental Hospitals with Adequate Staff Strength:
There are now 37 psychiatric hospitals in India with total bed strength of 18,024 (National Human Rights Commission, 1999). The beds are grossly inadequate in comparison to number of patients and population. It has been seen that despite of development of new drugs, in 30 to 40 of cases prognosis of schizophrenia is poor. As Lehman et al. (2004) noted, "Despite the availability of these treatments, most patients remain some what symptomatic and/or vulnerable to relapse. Persevering impairments are common, and long-term outcome, while heterogeneous, still represents significant morbidity for most patients”.

In large-scale follow up studies of adult schizophrenia patients, outcome was good in only 25 percent of patients; about 50 percent achieved at least partial remission, and 25 percent remained permanently hospitalized or grossly impaired (Mason 1995, Harrison 2001). When these chronically ill patients are kept in a community rather than in the institute, not only productivity of mentally ill patients is affected but also productivity of his family members is affected.           

The prevalence of schizophrenia in general population is one percent, out of which 30 to 40 percent have a poor prognosis. It means that 0.3 to 0.4 percent of population is chronically mentally ill. If we assume that one chronically mentally ill patient affects average 5 members of his family, leave alone his neighbors with whom he resides. It means that about 2 percent of population is affected by the illness directly or indirectly. MacGilloway et al (1997s) reported that 30 to 60 percent caregivers of psychotic patients had significant distress. These findings are similar to finding of Heru and Ryan (2002) study which reported that 72% of caregivers of recurrent mood disorders report positively for depressive disorders.

The solution is to establish more psychiatric hospitals with adequate staff strengths in each and every district and county rather than to build mammoth hospitals which usually have poor human right records and are difficult to manage. The bed strength of hospitals should be ideally between 50 to 100 patients. There should be a facility of open ward in which a family member can stay with patient. So hospital would be under an indirect vigil of public, which in turn would reduce incidence of human right violations and would make atmosphere similar to that of other general hospitals. The hospital should also have a rehabilitation complex, which will help in rehabilitation of patients in society.
 
Assertive Community Treatment:
In case of patients who are improved but repeatedly relapse into illness. Assertive Community Treatment is best solution which will reduces admission rate and lessen burden on psychiatric hospitals. Assertive community treatment  includes a mobile interdisciplinary treatment team comprising a psychologist, a psychiatrist, a social worker, a case manager and a nurse that establishes close, consistent relationships with the individual, providing him with a high level and scope of services and supports if needed and backing away when he is doing better(Berstein,2007). Mobile treatment at the doorsteps would also help patients who cannot come for regular follow up for treatment because of their inability to afford bus fare or train fare (Sheth, 2005).

Conclusion:
The outpatient mental health system appears to be at least as saturated with criminally involved individuals as the criminal justice system is with mentally ill individuals and it shows almost a failure of policy of deinstitutionalization. We must wake up before problem created by policy of deinstitutionalization backfires and explodes on a face of society.  To prevent jails and streets into the de facto asylums for the mentally ill and to prevent the overburdening of relatives of mentally ill patients this policy need rethinking. This doesn’t mean we should deride the policy of deinstitutionalization, which was formulated to counter the perils of institutionalized life, but process of deinstitutionalization should be with a humane face. The pendulum which went to one extreme of institutionalization should no go to other extreme of deinstitutionalization. The delicate balance between two processes is necessary for betterment of our patients. We must have patience till a sure cure of mental illness is found. When it is found, someday we would be able to disband psychiatric hospitals like a TB sanatoriums of past, which were made redundant by discovery of effective drugs. The truth is, by helping the seriously mentally ill we help ourselves. As one wise sage wrote, ‘No one will be saved till all are saved’.



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