“I just want to run away; want to fly. I have been living here for the last 17 years**, waiting for my brother to come and take me. We have a bakery shop. He will come and take me back.” The raw words expressed by a woman with mental illness (or Persons with Mental Illness, PMIs), living in the Institute of Human Behaviour and Allied Sciences, Delhi. She, and others like her, had been abandoned. Some are rescued by NGOs while some get a new label, ‘homeless with mental illness’.
Many a time, according to psychiatrist Dr Shashi Rai, family members put PMIs on a train to an unknown destination. “I had a male patient who was from a very well-to-do family,” recalls Dr Shashi Rai. “After his parents death, the brother, well-off and his only sibling, became his caregiver. But after a few years, he became indifferent and one day he put his brother on a train. Today, I do not know where he is. So, what I want to highlight is that PMIs are often abandoned, irrespective of their gender. But yes, it happens more with women.”
Just two days before Sujatha turned 30, her husband took her to a private mental health institute in New Delhi. She was diagnosed with a serious mood disorder and needed regular treatment. After a year of battling her mood swings and manic episodes, one day the husband took her to a different city and left her on the pretext of going out to ‘bring food,’ He never returned. The address given in the hospital was false.
Sujatha stayed in the hospital until she stabilised. Once discharged, she began her life again. “I know where my husband lives but I will never return to him,” says Sujatha. “He left me when I needed him. Had the institute not been generous, I would have become homeless”.
Persons with mental illness are abandoned because they are considered a burden. According to Dr Mridula Seth, it is not always the fault of the families. She writes in her book, Minding The Mind: “The state has little to offer to families of the PMIs. There is no economic security or concession of any sort. And medical help is very costly.”
There is no data about homeless or abandoned PMIs. The new Mental Health Act, 2017 has made it the responsibility of the state to keep PMIs’ dignity and respect intact. “The onus of providing care for the Homeless Persons with Mental Illness (HPMI) has shifted to the state,’ says Dr Shashi Rai. “Community and families are responsible for safeguarding the dignity of the PMIs.”
But is it happening?
Psychiatrists and the government promote family and community support. But often it becomes too much of a responsibility. “It is like walking on the eggshells,” says Arti (32), caregiver to her 24-year-old sister Neha, who suffers from Schizophrenia. She became the caregiver after their mother’s death during COVID-19. “It is thankless and painstaking. It unsettles the family and the finances. It is a huge responsibility. What we need is more rehabilitative centres at concessional rates. It is not that I do not love my sister but the responsibility is too overwhelming.”
Caregivers do feel burnt out. They do feel the guilt of not being able to help their near and dear ones with mental illness. The question ‘who after us?’ often haunts them. There are hardly any alternatives.
“There should be more rehabilitative centres, halfway homes and easy access to psychiatrists and counsellors,” says Rukmani, who lives in Ghaziabad and is caregiver to her son. “In my colony there is no psychiatrist. I have to travel nearly 20-25 kilometres for his regular check-up. Maybe, this forces caregivers to abandon the PMIs.”
Presently, India has only 9000 psychiatrists. This means 0.75 psychiatrists per 100,000 population. Caregivers and psychiatrists feel there is an urgent need to involve families and communities. Post COVID-19 mental health needs of the people should be relooked at. States like Meghalaya, Nagaland, Arunachal Pradesh, Mizoram and Chhattisgarh do not have any psychiatry training institutes. Smaller states and rural areas are totally deprived of mental health facilities. “We are sitting on a mental health time bomb,” say mental health experts. “Our mental health policies need to be revisited”.
Interview: “There are no uniform guardianship laws for PMIs”
Dr Nirmala Srinivasan is a mental health expert and founder of FACEMi – Families Alliance on Mental Illness. She has been working pan-India for the rights and needs of persons with mental illness. We spoke to her about various aspects of mental illness and care, and here are some excerpts from the conversation:
On Guardianship rights
What happens is that in severe mental disorders often a person lacks the capacity to make decisions, particularly related to finances. In such cases, a legal guardian is appointed who can decide on behalf of the affected PMI.
After the natural guardian (parents) who can become the guardian?
Interestingly, natural guardians are also considered legal guardians. The RPWD (Rights of Persons with Disabilities) Act was passed n 2016, according to which 21 disabilities were recognised. It was for the first time that mental illness was recognised and included in the 21 disabilities. Before 2016 guardianship of PMIs was covered by Mental Health Act, 1987, chapter 6, section 52. Anybody could apply for guardianship through the court. In 2016, Chapter 6 was taken out of Mental Health Act 1987 and was integrated and elaborated on a wider canvas covering all other 21 disabilities: visual, speech, autism, neuro-disabilities, Parkinson’s, etc. Mental illness also became a part of it.
On Mental Health Act, 2017 and RPWD Act 2016
The 2017 Mental Health Act did not have any provision for guardianship. It was only health legislation, elaborating on admission, discharge, treatment, medicines, right to privacy in the hospitals, etc. The question of ‘supported decision making’, which a guardian is supposed to do, is not elaborated on.
I am using the word “Supported” but let me explain that until 2016 the word used was “Substituted”. It meant that PMI could not take any decision on his own. He could not even buy a cigarette or a toothpaste on his own. Guardian’s confirmation was necessary, even though the PMI was capable of making a decision. So in 2016, the phrase “substituted decision making” was replaced with “supported decision making”.
Hence, the 2016 RPWD Act is a landmark. It included PMIs with other disabilities and somewhere it lessened the stigma attached to mental illness.
On legal guardianship laws in states
There are no uniform guardianship laws in the country. The government gave freedom to each state to form its laws. In some states, like Karnataka, West Bengal, Bihar, Odissa, Tamil Nadu, etc. families do not have to go to court for guardianship rights. It is the district collector that looks into the guardianship rights of the families. While in Delhi and Haryana it is done through court intervention and this takes a long time.
** Note: The quote has been modified slightly from the first published version for the sake of better clarity.