February 22, 2021

Commemorating World Disability Day 2020

Fifteen years ago, Janaki was wandering on the streets of Chennai (South India), confused and distressed when The Banyan found her. She was diagnosed with schizophrenia. A lack of access to care and support systems in her hometown, in Govindakuruchi village in Trichy District, had contributed to her ending up on Chennai’s streets, a long way from home. Once she began to regain her sense of self and achieve clinical recovery, she decided to move back home and live with her sister Amili and her daughter. Amili too, had her own demons to battle with her husband having died by suicide, a young child to support and limited financial resources, and therefore experienced intermittent bouts of depression.  

With extensive engagement from The Banyan, Amili and Janaki began to feel better supported and ready to make a fresh start together, stronger as a unit as well. Janaki resumed her work as a registered nurse and Amili remarried. But tragedy struck a few years later when Amili’s husband was killed in an accident, leading to recurrence of her depression. Both of them, however, did not feel entirely settled in their current identities and wanted to achieve more, give more.  

Everything came together when The Banyan requested them to lead ‘Home Again’ in their village.  The Banyan made multiple visits to understand the socio-political landscape and assess the feasibility of the project in their context. Owing to the community’s unfettered faith in both of them, passion towards the cause, and Amili’s untapped entrepreneurial potential, the project was set up in 6 months.  

Janaki and Amili now work with 32 women in Trichy district with long-term psychosocial needs; those employed to care for them are also distressed women, many single parents having lost their husbands and economically deprived.  

Direct gains support 32 women with severe mental illness (likely to increase) while secondary gains include supporting  12 female mental health facilitators and their families (including children, who may be educated as a result).  

The success that Amili and Janaki have had in Trichy with the Home Again model, has helped us recognize their deep-rooted enterprising nature that extends beyond the task of care-giving and includes empowering, inspiring and motivating those in their care to achieve more than they thought was possible.  

The NSO (National Statistical Office, India) survey reports prevalence of disability in India at 2.2% of the population. Mental health care is accorded very low priority in India with only 1.3% of its total health budget being apportioned for mental health service delivery; the treatment gap for mental disorders is a staggering 83%. 11% of homeless persons with severe mental illness remained within in-patient facilities in government and private hospitals. Lack of awareness, stigma, accessibility, scarcity and unequal distribution of resources are some of the systemic barriers that further complicate the issue and make necessary a paradigm shift in the approach to mental health care.

Home Again is an intervention under the RIST Centre for Mental Health and Development, which is supported by the RIST Endowment Grant. The intervention offers non-clustered housing and personal recovery support as key interventions. 4-5 women in each home, form affinity groups and live together in formed families with opportunities to engage with the community and normalize mental illness. The community living experiences create organic changes in self-care and learning through observation and social comparison and impacts individual and group behavior.  

Further, social mixing enthuses communities to challenge prejudice and through social connection better understand individuals with mental illnesses. More importantly, disrupting the specialist driven care trajectories, peer leaders have anchored home again in rural contexts, adhering to standardized protocols, but integrating their unique wisdom to develop a vibrant version of the prototype.

Over the last 3 years, The Banyan has set up nearly 50 such homes across Tamil Nadu, Kerala and Maharashtra. Nearly 80% of these homes are supported by RIST directly or via The Hans Foundation.

The Banyan’s unified vision along with RIST is to reach out to individuals in mental hospitals and attempt to promote inclusive living options through facilitating exit options and providing continuity of care. The reintegration, restoration and aftercare program is aimed at ensuring persons who are treated are in a position to return home. Following their return home, a robust aftercare program ensuring continuity of care is critical to ensure sustained well being, and prevent descent into a state of ill-health / recurring states of homelessness.

In the context of the COVID19 pandemic, safety protocols were quickly and effectively put into place to ensure the safety of clients across program. On-going support to clients and their families who are daily wage laborers without income and identified homeless populations were provided on a priority basis. Apart from essential life-sustaining care services, efforts were made this period to understand immeasurable uncertainties faced by cohorts and local context interplay. Incremental support was offered to continue care and prevent descent into recurrent homelessness and mental illness. Teams anchored distribution of direct benefit transfers, dry rations and livelihood support directly and through partner organizations especially for those living out of state.