Vandana Gopikumar is the co-founder of The Banyan, a Chennai-based NGO that works with people with mental illness from low-income groups. This in a country where over 80% of people with mental health issues cannot access the care they need. Among The Banyan’s many projects is ‘Home Again’, which provides patients with long-term care through the concept of shared homes that mimic a family environment.
The programme looks after the health of residents, and also, vitally, facilitates socialisation, creates employment and enables leisure. ‘Home Again’ now looks to ambitiously scale up from its nearly 50 homes in Tamil Nadu, Kerala and Maharashtra to homes across 10 States in India and a region in Sri Lanka. Excerpts from an interview:
A vast proportion of people with mental illness, especially from marginalised communities, find themselves on the streets, in shelters for the homeless, beggars’ homes, prisons. How important is it to create public sector initiatives for the long-term care for this population?
Research has shown that 33% of people living in mental healthcare hospitals across the country do so for anything between a year to 40 years. For one’s identity to be compressed to someone who resides within the four walls of an institution for extended periods is an absolute violation. People with long-term mental health needs must transition from institutions into supportive communities regardless of the extent of disability, or the nature of mental illness.
What does ‘Home Again’ hope to achieve?
It’s simple. ‘Home Again’ is about a group of four or five people who choose to live together, mimicking the values of a family. Some of these people have just transitioned from a hospital and, therefore, in some cases, have lost the ability to engage in basic social processes. This would involve some form of relearning, enabling people to keep the house clean, cook, go to the market, invite guests, go to the movies and so on. Here, they have access to experiences absent in an institution.
A cluster of about seven homes is supervised by a mental healthcare team that comprises a clinical social worker, psychiatrist, psychologist and a peer advocate. A typical day is flexible: some may engage in pujas in the morning, some watch television, some may work at home or in the fields, or learn a new skill if they wish to be self-reliant. So, in a sense, those transitioning from hospitals to ‘Home Again’ can also later move to independent living.
Given the existing stigma, what are the challenges in creating an inclusive community for people with mental illness?
This question is to do with the human condition, and with the frailties that we live with as human beings. We stigmatise another person on the basis of several biases — it could be gender, caste, class, and it could be psychosocial disability. There are some communities that are sensitive and open-minded. And then there are those who are entirely resistant to people who dress differently, or respond differently, for example. We noticed an absolute lack of acceptance of any form of diversity, including neurodiversity.
In a society so caught up with stereotypes, ‘Home Again’ hopes to flip that narrative and challenge all dimensions of segregation, including caste, class and gender.
W hat are the changes you see in the quality of life among people who are rehabilitated into a community?
When we first piloted this model, supported by a grant from the Grand Challenges, Canada, we measured the outcome of a housing intervention, where a person was moving to a regular neighbourhood.
We looked at the changes in quality of life, changes in disability levels and changes in community integration. We figured that with just the housing and supportive services, disability decreased, community inclusion significantly improved, and quality of life also improved because your social world isn’t limited to an institution; your vistas open up.
Most people with mental illness in India live at home, with their families caring for them. What can be done in terms of public policy to support caregivers?
I would strongly push for a basic income type of intervention — a compensation or a disability allowance — for those with psychosocial disabilities. That would definitely decrease caregiver strain. There is a close correlation between poverty, social disadvantage, structural violence, and mental health. Something like a disability allowance would be empowering for both the individual and the family, and prevent a downward spiralling into homelessness.
According to Rights of Persons with Disabilities Act, 2016 and Mental Healthcare Act, 2017, there should be a convergence between mental health and social justice. While the legislation is progressive, it is not uniformly implemented in all States.
The second is access to care through the district mental health programme. In many States, particularly in the central belt, access to mental healthcare is very limited. There is an 80 to 85 percentage treatment gap in India.
In the absence of access, families really don’t know how to care for a person with mental health issues and so seek alternative systems of healing. Then you have this whole culture of locking the person up, tying up the person, and so on. So, the family obviously is a very key component and partner in this journey of recovery. Where does the person go?
We also need to encourage peer leaders to combat stigma and othering. The truth is that 150 million Indians are affected with a mental health issue, and many of us are faring exceedingly well, engaged in the workforce, experiencing a good quality of life. Unfortunately, both in films and media reporting, even in public health discourse, talks are always about ‘supporting’ a person with mental health challenges — which is, of course, true and required, but as much as you support you also learn from the person. There is a large movement globally, also in India, of persons with mental health issues driving the model forward as advocates, managers, peer leaders.
So, I would think this movement should take centre stage, because if you have persons with mental health issues leading the movement, and collaborating with other mental health professionals, then you have an accurate depiction of the person.
After all, every person has multiple identities: you cannot be reductionist and have just mental ill health topple other identities.
divya.gandhi@thehindu.co.in
