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Mobilizing for the Rights of Persons with Psychosocial Disabilities in India

Lessons from the Centre for Mental Health Law & Policy’s work during the COVID-19 pandemic

Oct 06, 2021   Authors: Meera Damji, Manisha Shastri & Dr. Soumitra Pathare | Centre for Mental Health Law & Policy   Blog Posts   Health

The COVID-19 pandemic has overwhelmed healthcare systems the world over, with disproportionate effects in low- and middle-income countries. India, the world’s largest lower middle income country, responded to the pandemic with a nationwide lockdown on March 24, 2020. The lockdown restricted people’s movement, limited access to essentials, and abruptly shut down schools and colleges, along with other far-reaching effects. For example, most of India’s workforce is engaged in the informal sector and faced sudden economic and food insecurities.

India was experiencing a kind of mental health crisis even before the pandemic. We knew that 8 out of 10 Indians who suffer from common mental conditions like anxiety and depression lacked access to adequate mental health care and treatment. The prolonged periods of isolation, loss of loved ones to COVID-19, increased unemployment, and livelihood insecurity caused by the pandemic will likely have lasting effects on the mental health and wellbeing of not only people with pre-existing conditions but all individuals and communities. And the pandemic has only further exacerbated barriers to already difficult-to-access mental health care and treatment. Poignantly, persons residing in mental health establishments or receiving inpatient care were hastily asked to return home, leaving them with little to no access to mental health services.

The new and exacerbated mental health challenges posed by the pandemic have spurred us at the Centre for Mental Health Law & Policy to redouble our efforts. At a time like this, when barriers to timely information can have fatal consequences, we targeted communities in low-resource settings to provide them with information that would enable them to take care of their own as well as their loved ones' mental health and wellbeing. Drawing from the core tenets of Atmiyata, our community-led mental health intervention, we developed a set of videos for different groups (people with disabilities, caregivers, the elderly and children) that provided practical tips on how to care for one's mental health and emotional wellbeing. These videos were then translated into 6 local Indian languages and disseminated by Atmiyata's volunteers among their community networks via commonly used platforms like WhatsApp.

Atmiyata, which means ‘shared compassion’ in Hindi, aims to improve access to mental health care and social care in rural India by training community volunteers (e.g. former teachers, community leaders, etc.) to identify and provide primary support and evidence-based counselling to persons with emotional stress and common mental health disorders. Throughout the pandemic, our volunteers not only provided psychosocial support through phone calls to community members, but also provided information about COVID-19 to counter disinformation and myths. Atmiyata is currently being implemented in 525 villages of rural Mehsana district in Gujarat, covering an adult population of one million. The intervention has been recognised as one of the 25 human rights oriented good practices for community outreach mental health services in the world.

The Centre also routinely relies on its first-hand experience in the field to inform systemic advocacy efforts. For example, the Centre has provided technical support to India’s Ministry of Health and Family Welfare in drafting legislation to replace the 1987 Mental Health Act. The 2017 Mental Healthcare Act takes a rights-based approach to mental health care and provides for publicly funded universal mental health care. It draws upon the principles in the United Nations Convention on the Rights of Persons with Disabilities, which India ratified in 2007. Although the law has its limitations, it also presents important opportunities to ensure that accessing mental health care does not imply sacrificing fundamental human rights.

Notably, the Mental Healthcare Act marks a significant shift from practices of substitute decision-making and guardianship to paradigms of supported decision-making. Under the legislation, Advance Directives and the appointment of Nominated Representatives are new two tools that are made available to persons with mental illness to exercise their agency and autonomy in decisions pertaining to their care and treatment.  Although the Act became effective in 2018, there remain significant gaps in its implementation. To bridge these, the Centre works to build the capacity of various stakeholders, including mental health practitioners, judicial personnel, and caregivers, using resources it has developed for both service providers and another for caregivers.

Prior to the Mental Healthcare Act, there was no mandate for insurance companies to provide coverage for treatment of mental health conditions in India. The Mental Healthcare Act recognises treatment for mental health conditions as a statutory right, and the pandemic has only highlighted the need for board coverage. To this end, the Centre has been conducting research to advocate for all health insurance policies to include treatment for mental health conditions. The Centre’s India Mental Health Observatory (IMHO) reviewed over 270 medical insurance policies to their compliance with the Mental Healthcare Act and has created an open access dashboard to disseminate information on the various policies available and their coverage.

Suicide prevention has been another thematic area of the Centre’s work reinforced by the environmental stressors precipitated by the pandemic. Even though India reports the highest number of suicides globally, India lacks reliable data that track deaths by suicide or suicide attempts in real time. Thus, the Centre’s IMHO undertook a research study to assess whether deaths by suicide and attempted suicides in India had increased during the lockdown. For this, we compared online news reports on suicide and attempted suicide between March 24 to May 3, in the years 2019, and 2020. We found that there was a 70% increase in these reports, from 220 in 2019 to 369 in 2020.

While analysing news reports for this purpose, we noticed that despite the media being an important ally in suicide prevention, few publications followed the guidelines issued by the WHO for reporting suicides responsibly. Media reporting of suicides is a known risk and protective factor- there exists ample evidence showing this correlation. This led to the inception of Project SIREN: Suicide India Reporting Watch, an initiative of the IMHO to assess the quality of media reporting on suicides. We developed a scorecard based on a list of positive and negative parameters based on the WHO resource guide for media reporting of suicides. Since its launch in September 2020, Project SIREN has assessed over 7,000 news reports on suicide from the 8 most widely read English language newspapers and 18 online publications.

While some challenges posed by the COVID-19 pandemic will fade, its impact on mental health and wellbeing will be long-lasting, especially for populations in low resources settings and among vulnerable and marginalised groups. At the Centre, we firmly believe that mental health is integral for a just and equitable world and requires collaboration between stakeholders across the spectrum to strengthen and transform the mental health of our communities to be holistic and responsive in addressing individual and collective wellbeing. The pandemic has further strengthened our belief that to promote and improve individual and collective wellbeing, mental health needs to be viewed and addressed from a rights-based, development lens and not be seen as just a subset of health care delivery.

To learn more about our work, visit www.cmhlp.org or follow @CMHLPIndia on Twitter, Instagram, LinkedIn.

By the Centre for Mental Health Law & Policy | Meera Damji, Manisha Shastri, & Dr. Soumitra Pathare