Why India needs more half-way homes for the mentally ill
The 2017 International Mental Health Day holds special significance for India as this year the new Mental Healthcare Act was passed and was welcomed for being less regressive than its predecessor and for making the State responsible for the establishment of halfway homes for cured mental patients. As the gaze of the world shifts to the status of mental healthcare, Hardnews visits the only State-run half-way home in Delhi and looks at the status of treated mental patients across India
THE INSTITUE OF Human Behaviour and Allied Sciences (IHBAS) is located in a desolate corner of Dilshad Garden, a subdivision of the sprawling national capital.. The red brick buildings on the campus immediately set it apart as a government-run institute. Its women’s psychiatric ward is nothing like what one is used to seeing in the movies: it’s not eerie and has ample open space in the form of a courtyard. The ward houses patients suffering from various kinds of mental disorders, from paranoia and bipolar disorder to schizophrenia and dementia. The building’s exits are locked to prevent them from running away. The patients in this ward have been admitted to the hospital a few months ago and are in the process of trying to adapt to a lot of changes around: closed doors, limited open space, new medications and a life without the comforts of home.
As soon as the grills are unlocked and a doctor enters the corridor, he is surrounded by a group of women who complain that the medications make their limbs shiver and ask for permission to go home. The doctor says he would be more than happy to discharge them as soon as they get better. The scene is telling because even after recovery, only a small percentage of the women will return to their homes. Although the number of long-stay patients at IHBAS is limited, a lot of such patients lodged in mental hospitals across the country are never taken back by their families.
According to a series of RTI applications filed by advocate Gaurav Kumar Bansal, at least 786 mental patients who are fit to be discharged are languishing in hospitals across the country. Since the figures have been obtained from only 14 of the 43 mental institutions in the country, the actual number could be higher. Institutions catering to mental health issues in a country with a population of 1.3 billion are few, and yet these facilities are clogged with patients who are fit to be discharged but have nowhere to go.
Even after recovery, only a small percentage of the women will return to their homes. Although the number of long-stay patients at IHBAS is limited, a lot of such patients lodged in mental hospitals across the country are never taken back by their families
A public interest litigation (PIL) filed by Bansal prompted the Supreme Court to intervene and direct the Centre to frame guidelines for the rehabilitation of patients who have been cured of mental illness. It was decided that state social welfare departments will be tasked with establishing halfway homes. In July this year, the court directed the states and Union Territories to implement the norms, set up halfway homes and file a status report after a year. Such homes are quite popular abroad and offer a non-custodial rehabilitative facility for people who have been cured of mental disorders. The facilities are supposed to be halfway between a hospital and a home and play an important role in integrating those who have suffered from mental disorders back in society. Patients are meant to stay in this facility for one to two years.
When Hardnews met Bansal in his office in south Delhi, he was getting ready to appear on a news channel for an interview, asking his staff to arrange for a matching waistcoat and his advocate’s coat. He is a known face on TV channels and has filed a number of PILs on various issues, ranging from the protection of rivers to filling up vacancies in the National Green Tribunal (NGT) and seeking implementation of the Protection of Children from Sexual Offences Act (POCSO). He filed an RTI application on the number of people living in mental hospitals only because it was one of the many issues that he was concerned about. “Families don’t want them back. Some families leave wrong addresses and phone numbers in hospital records and can never be traced. And then there are those who cannot take their relatives back because they had to brave episodes of violent behaviour in the past, and are afraid it could continue. With no State-run facility to absorb them, they continue to live in hospitals. I have met patients who have been in hospitals for at least four to five decades,” the advocate notes.
IN INDIA, AWARENESS about mental health is poor. Social stigma surrounds those who have braved disorders of the mind. Madness is also often considered a supernatural affliction and in many cases, people often rope in faith healers to get their dear ones cured. Psychiatrists or counsellors come into the picture only after everything else fails. At the end, patients are often brought to the doors of a mental healthcare institution and left there to fend for themselves.
During his visit to the Bareilly mental hospital in Uttar Pradesh, Bansal saw healthy people living with patients suffering from acute forms of mental illness in the same ward. With disorders that can make a comeback anytime because of psychological triggers, keeping cured and mentally ill patients in the same ward raises the risk of a relapse. It places them in a vicious circle of psychological instability where there is little hope for recovery.
Sitting in his spacious office in IHBAS, Dr Nimesh G. Desai, director of the hospital, who has been at the forefront of the setting up of Delhi’s first government-run model halfway home, says that the idea was to set an example. Following a tussle between the health and the social welfare departments as to who should be responsible for managing halfway homes, it was decided that IHBAS would set up a model facility for the social welfare department to follow. “When we started out, we were only experienced in providing hospital-like care. But this was different. This facility had to look and feel like a home. We had a number of patients who had been living in the hospital for several decades and who could not be sent back to their families. So we thought, let’s start with them,” he explains.
Soon afterwards, an unoccupied hostel was located on the campus and renovated into a model halfway/long-stay home. The task of managing the home fell into the lap of Himanshu Singh, who was already working in the Department of Psychiatric Social Work at IHBAS. He had to first convince the patients to relocate, which wasn’t easy. For the long-stay patients, the open ward at IHBAS had become their home. To convince them, they were asked to take a tour of the halfway home and a grih pravesh (pooja performed before entering a new home) was held. “It was then that they could feel like this was meant to be a home. Forty-one people consented to move to the new facility in March and only a few stayed back at the ward,” says Singh with a wide smile.
As a relic of the inhuman treatment these patients once received, he has preserved the ruins of an old ward on the IHBAS campus where patients were chained and kept in isolation. Now overgrown with moss and wild plants, the decrepit structure looks more like a jail than a hospital
The home, named Saksham, aims at enabling people who have battled mental illnesses to live a normal life outside of the hospital ward. There are two separate wings for men and women. Each wing has a sunny courtyard with rooms on the periphery with one or two beds each. At Saksham, patients wear the clothes they please. Some are particularly well-dressed, like Geeta*. She is an old lady with hair that has started turning silver at the roots. The home staff said that her husband had died, but she does not remember his death. So she wears a thick line of vermilion in her hair and tucks a flower into her plait every day.
The changes that have come with shifting to this new facility seem to have made everyone happier. A former English teacher at Kendriya Vidyalaya, Kanchan*, who is battling Parkinson’s disease and is now housed at Saksham, says, “It is better. We are happier over here because it is quieter. We have separate rooms and there aren’t so many people as in the ward.” Neelam* does not remember anything about her home except that it is in the state of Uttarakhand. She has been at the hospital since she was five, and has been living at the hospital for the last two-three decades at least. Her family could never be traced. Singh says that Neelam wants to learn how to make chapattis and efforts are on to find a way to get it done. Then there’s Ramlal, who is the oldest resident in the facility. He feels a compulsion to wear his slippers to bed and doesn’t let anyone take theirs off as well.
Apart from the neat beds and the ample sunlight that lend the facility a warm feel, the one quality that truly makes it a home is that it has the capacity to absorb the idiosyncrasies of a varied crowd of people with different kinds of cognitive makeup. Admitting this with a sigh of satisfaction, Dr Desai says, “With Saksham, we have made an attempt to change our mindsets. We have always been mindful of the fact that it should not be run like another ward.” After the patients shifted to the new ward, Himanshu Singh took it upon himself to get them enrolled for Aadhaar. Prior to it, many of them, who had been living in the hospital for a long time, did not have any kind of identification proof.
One of the biggest challenges faced by Singh has been to get the residents involved in everyday activities. “They are used to hospital care, which is more custodial in nature. In a home-like environment, one can expect those who are fit to take care of their own chores, like washing and bathing. In order to instil a sense of responsibility and routine, we have given each one of them a plant to water,” says Singh, pointing towards a green patch of land with plants that have a nameplate mounted on a stick with the names of Saksham’s residents. Recreational classes are held from time to time. Singh says that while some take part in all the activities with much gusto, there are some who need to be persuaded to come out of their shells and join in.
The case is often quoted to show the apathy with which society looks at those who have suffered from mental illnesses. Even families that are well-off and well-placed in society decline to take responsibility for their mentally ill relatives.
“What you witnessed at the IHBAS halfway home is not something you will be able to find anywhere else. Mental hospitals in the rest of the country function in abysmal conditions where patients have to suffer inhuman treatment. If I go and stay with them for 10 days, I am sure I will lose my sanity,” says Bansal whose PIL sparked the debate on the fate of cured mental patients. In a system that is crippled by its own weight and lack of empathy, IHBAS and the National Institute of Mental Health and Neuro-Sciences (NIMHANS) in Karnataka are not shining examples but anomalies, he says.
At the heart of this apathy towards mental illnesses, says Dr Desai, is the fact that as a society, we look at mentally ill people as non-persons. As a relic of the inhuman treatment these patients once received, he has preserved the ruins of an old ward on the IHBAS campus where patients were chained and kept in isolation. Now overgrown with moss and wild plants, the decrepit structure looks more like a jail than a hospital. He points out that the ward was functional till two decades ago. “The new mental healthcare Act entitles the patients to all the rights that are available to anyone else. And that’s a good thing, that the idea is now a part of the legal, ethical and administrative framework. It needs to be accepted socially and personally as well but that will happen in time,” he notes.
Of the 41 patients at Saksham, there is a possibility that two of them will go home. The rest, however, will stay. One of the most widely reported cases where the family refused to take back one of the cured patients at IHBAS still finds mention in the conversations involving long-stay patients at the hospital today. Rupali was admitted in 2002 after being diagnosed with bipolar disorder following the death of her father, who was a Navy officer. In 2009, she was declared fit to go home, but her mother disowned her and even sent a legal notice to the hospital, asking IHBAS to not contact the family ever again or legal action may be initiated against it for harassment. The case is often quoted to show the apathy with which society looks at those who have suffered from mental illnesses. Even families that are well-off and well-placed in society decline to take responsibility for their mentally ill relatives.
“We should not expect everything to turn hunky-dory immediately. Our best chance is that with time, we will be able to reduce the stigma, but it will continue to exist in some percentage. However, the government does need to step in and create more such facilities for those who have nowhere to go,” says Dr Desai.