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Saturday, March 28, 2020

Fit to go home, not to homes

Maharashtra has the highest number of long-term patients admitted in mental hospitals. Two months ago, the state government declared they were all treated and fit for discharge. It then moved them to an erstwhile leprosy home, a beggar’s home, old age homes and women shelters, and called it rehabilitation.

Written by Tabassum Barnagarwala | Mumbai | Published: February 10, 2020 12:36:52 am
Maharashtra mental hospitals, Maharashtra leprosy home, beggar’s home, old age homes, women shelters, Maharashtra rehabilitation centers, Maharashtra news, indian express news  As many as 190 mentally ill patients across the state, who have been treated but have no home to return to, or have been abandoned by their families, have all now been moved to beggar’s homes, old age homes, women shelter and a former leprosy home.

Away from the noise of the city, 120 km south of Mumbai, in the 25-acre lush green property of Kolad beggar’s home, formerly a leprosy home, officials are concerned about nine new inmates. Since their transfer from Ratnagiri mental hospital to this beggar’s home last December, they have stopped communicating. So far they have been coaxed only to mouth or write their names on paper. Amongst them Sakharam Zuvekar, treated for schizophrenia, had lived in a mental hospital from 1972. Aged 75, he finds the shift to a new shelter difficult. He keeps to himself, choosing to sleep the entire day on a thin mattress laid on the stone floor in a dilapidated ward meant for detained beggars. Sharing the ward with him is a tobacco addict, two dementia patients, and an epilepsy patient among others.

At the other end, 50 km north of Mumbai, there is a different problem at Jambhul beggar’s home, where officials have 51 new arrivals. They are from Thane mental hospital. They cannot stop talking. They are demanding to be allowed to leave and go home. Mangal Bihari (19) is amongst them. He looks around in despair, “I don’t want to spend my entire life here.”

In mid-2019, Bihari was picked up by the Mumbai police from a footpath after “complaints of disturbing others and getting irritable on minimum provocation”. He was admitted to Thane mental hospital, and diagnosed with psychosis. Medical records within months observed an improvement, and said “he is cooperative, has calmed down”. By December 2019, the records said, “fit for discharge”. Instead of discharge, however, Bihari was transferred to the beggar’s home in Jambhul, a village near the satellite town Ambernath. The Maharashtra government termed this move as rehabilitation.

“Wo bole chalo aaj ghumne chale. Aur humein yahan le aaye (They said let’s go for a ride, and brought me here),” Bihari says when asked if he knew he was being transferred to the beggar’s home. “I wish I could leave, I will work and earn… I want to marry,” he says.

The medical records have no mention of any attempt by the hospital to find his family except a small mention that they live in Bihar. Bihari says his only family member is his father Rampal Bihari, a driver, who lives in Simdega in Jharkhand. He claims he left home and travelled with nine friends to Mumbai to earn a livelihood. “We were poor, so I left to earn money. Then I started having headaches, fits in Mumbai,” he says. After hospitalisation, it took months to recover. He remains stable on medication.

As many as 190 mentally ill patients across the state, who have been treated but have no home to return to, or have been abandoned by their families, have all now been moved to beggar’s homes, old age homes, women shelter and a former leprosy home.

The Maharashtra Social Justice and Special Assistance department claims they have followed a Supreme Court (SC) order to rehabilitate the patients. But while the order asked each state government to build rehabilitation homes, provide skill training, and improve quality of life of these patients, Maharashtra has merely moved them from one institution to another, not only against the consent of these patients, but also to the dismay of shelter home officials who are already struggling with lack of resources.

What the SC verdict said

Following a public interest litigation in 2016 that raised alarm over high number of cured patients in mental hospitals, in 2017 the apex court passed an order to rehabilitate mentally ill patients who are treated and fit for discharge from mental hospitals but were abandoned by their families. It gave a year’s time (until August 1, 2018) for states and Union territories to comply. The Union Ministry of Social Justice and Empowerment then issued guidelines to states on rehabilitation and made an important observation, “This sizeable group of long-term patients not only continue to occupy beds in the hospitals, but also get deprived of their human rights.”

The guidelines directed states to set up rehabilitation homes outside mental hospitals which should have facilities like occupational therapist, psychiatrist, vocational trainer, housekeeping, cultural activities and security. Most importantly, such homes should have skill training and counselling facilities.

The ministry suggested ‘half-way home’ or ‘long-term stay home’ as two kinds of rehabilitation homes for patients.

After a year, in 2018, petitioner and advocate Gaurav Bansal filed a contempt petition in the SC stating non-compliance of its order by multiple states. The SC granted time until November 2019 for all states to “strictly comply”.

A task force report prepared by the central government in 2019 shows that across India, there are 13,613 mentally ill patients in hospitals. Of them, 4,935 have been living in mental hospitals for over a year. Maharashtra has the highest — 1,358 of 3,722 admitted mentally ill patients are long-term patients across its four government mental hospitals. West Bengal comes second, by a huge margin, with 971 long-term patients and Tamil Nadu with 612 such patients.

How states implemented the SC order, what Maharashtra did

Under the Mental Healthcare Act, 2017, maximum hospitalisation for three-six months is suggested unless the mental illness is advanced. But several who could have been treated as out patient department patients were hospitalised because they were homeless or abandoned. After treatment got over, no one came to discharge them and the hospitalisation continued.

On January 11, 2017, daughter Jyoti dropped Vijaysahu Waiyangankar (51) at Thane mental hospital. That was the last he saw her. Within a few months, medication helped calm his aggression. From a Vashi (Navi Mumbai) address provided by Jyoti in medical records, the hospital mailed her a letter that her father was ready for discharge. Later, a social worker reached out to her on the contact number she provided. She refused to accept him. His medical file notes “poor family support for patient”. His wife is dead, and of three daughters two remain unmarried. When a social worker was physically sent to Jyoti’s address, it turned out to be fake. The hospital informed the local police. The efforts reached a dead end there.

Waiyangankar claims his address is not Vashi but Parel, in South Mumbai. “My daughter must have given false address,” he claims. He worked in a bank selling tea before hospitalisation. And before that he worked as a peon in the Bombay High Court, he claims.

When The Indian Express met him, he said, “I want to go back and work. Even if my daughters don’t accept me, I will live on my own.” But Waiyangankar was never offered that option from hospital. On December 20, he was shifted from Thane mental hospital to Jambhul beggar’s home. “I didn’t want to leave the hospital. But the social worker told me if I go to another institution they will help me find my family. So I came here.”

He has recovered, and remains on medication. Since he has been shifted to the beggar’s home, he keeps requesting to be discharged. The highlight of his day is once in the morning and evening, when he distributes medicines to inmates. “I know who takes which medicine,” he says.

Following the SC order, Delhi rehabilitated its 44 patients by setting up rehabilitation homes but UP is yet to construct them, says petitioner Bansal. NGO The Banyan is working in Kerala and Tamil Nadu to rehabilitate mentally ill patients in rehabilitation homes where they are also allowed to work and earn.

Maharashtra, which has the highest treated patients, also has the most abysmal conditions. The Banyan has recently begun operations in Maharashtra and rehabilitated 14 such patients. “But the Maharashtra government is yet to sign a memorandum of understanding to begin full-scale rehabilitation,” says Lakshmi Narasimhan, senior management member at The Banyan.

In mid-2019, Maharashtra Chief Secretary Ajoy Mehta took a decision to not construct rehabilitation homes. He instead passed an order to transfer these patients to existing government institutions — beggar’s homes, old age homes, women shelters and a former leprosy home. Officials say the huge financial cost of constructing new rehabilitation homes was the reason. Despite multiple calls and messages, Mehta did not speak to The Indian Express.

The 190 patients were shifted to these existing shelters on December 19, 20 and 21 of 2019. Eighty-five of them were transferred to beggar’s home. This is just the first batch, more are expected to be transferred.

“We had proposed construction of rehabilitation homes, but the chief secretary said there are existing government homes with vacancy where these patients can be accommodated,” said Dinesh Waghmare, Secretary, Social Justice and Special Assistance department.

Documents accessed by The Indian Express show, three days before these patients were shifted, on December 17, 2019, the Public Health Department wrote to the Social Justice department stating that “the SC order and Mental Healthcare Act clearly mandates construction of half-way home, sheltered accommodation and supported accommodation” for cured patients for “complete rehabilitation”. But the objection appears not to have been taken into account.

Several shelter homes’ in-charge were caught off guard, informed only a day or two before the patients were shifted. In Chembur’s Kasturba Mahila Vastigruh shelter home, where 15 women were shifted, in Jambhul beggar’s home, where 51 were taken, and in Kolad home where nine patients were shifted, the information came two days before the patients were brought.

The immediate challenge for these homes was the shortage of staff to look after the new arrivals. Kasturba Vastigruh has only three caretakers and a helper for a total of 44 inmates. Jambhul home has four caretakers for over 60 inmates. Kolad home has seven staffers to look after 22 inmates.

“We wrote to higher authorities to fill all vacant posts and train staff to handle mentally ill patients. Since the transfer, these patients are not talking. We are struggling to handle them. They have to be bathed daily,” an official from Kolad beggar’s home said.

It was only a year ago that the home, which used to house leprosy patients, was categorised as a beggar’s home. Of 35 sanctioned staff posts only seven are filled. The Kolad home is housed in a 1945-constructed dilapidated British structure. A big ward has mattresses laid for inmates. “A lot of inmates here are homeless and detained by the police under the Bombay Prevention of Begging Act. They have infectious diseases like tuberculosis. We fear the infection may spread to others,” a medical officer at the home said. When The Indian Express visited, of 13 detained beggars, one was a tobacco addict, one a diabetic, one suffered from epilepsy and two had dementia.

On December 20, 2019, the superintendent of Chembur home also wrote to Thane mental hospital to appoint three trained nurses and one caretaker for the patients. They have received no response. The existing staff has not been trained in handling these patients, and they have no on-duty doctor.

In Jambhul, a post for carpenter for skill training has been vacant since several years. “We want to do some vocational or skill training for these patients, but we have no human resources,” an official said. Thane district officer Mahendra Gaikwad said a proposal to start agriculture is under way for Jambhul inmates.

How human rights of these patients are violated

The Convention on the Rights of Persons with Disabilities and its Optional Protocol, to which India is a signatory in the United Nations in 2007, mandate a state to provide the disabled a chance to live independently in community.

Under the Mental Healthcare Act, 2017, too, each patient has “the right to leave mental health establishment” upon completion of treatment. The Act mandates “informed consent” for treatment or admission from patient if the patient is in stable mental condition. In none of the 190 cases, the patient’s written consent was taken to transfer them to beggar’s home, old age homes, and women shelters. There was a small number of patients who were in advanced stage of mental illness and the hospital took decision on their behalf. But of remaining several that The Indian Express spoke with, did not even know they were being moved to another institution.

State officials have expressed helplessness. “The families admit these patients and never return. We send mails, but receive no response,” said Dr Sadhana Tayade, director of Directorate of Health Services.

While hospitals manage to reach out to a few families through the addresses the patients give them, in a large number of cases, the families are never traced and remain ‘unknown’ during hospitalisation. The four mental hospitals have 25 social workers deputed to trace families of patients and rehabilitate them. With over 4,000 patients in all four hospitals, social workers are seriously overburdened.

A 2012 report by the Social Justice and Empowerment ministry stated that 48 per cent of patients in mental hospitals were long-stay patients (7,307 out of 15,349).

Dayalji, aged 53, is named ‘room number 13, unknown’ in medical files from his stay at Ratnagiri mental hospital, where he was admitted in 2005 with schizophrenia and epilepsy. “I took a train from UP to Bombay,” he says. In Kolad, his medical records have no mention of attempts made to trace his family. “We can only reach out to police in that state, but they only take our complaint. There is no follow up,” a state government official from mental health cell said.

The Banyan has reunited 1,500 with their families in Tamil Nadu, Kerala and Maharashtra. Each patient is counselled over several days, encouraged to give all family details, and multiple visits are made to trace the family. Shraddha Foundation, based in Karjat, has rehabilitated 8,000 mentally ill persons since 1988 when they began work of rehabilitating mentally ill destitutes.

“Schizophrenia cases are very sensitive. They need family support, and family must be counselled. Otherwise their condition will deteriorate,” said psychiatrist Archana Singh, who is currently monitoring the rehabilitated cases in Kolad beggar’s home and Karjat’s women shelter.

Until government frames a better policy, these patients, meanwhile, continue to live an imprisoned life.

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