For Homeless Indians With Mental Illness, Institutional Care Need Not Be Final Destination
Chennai: A majority of homeless women with mental illness (73%) were able to reintegrate into community life after they were discharged from the institution where they were under care and reunited with their families, according to a study.
The study was conducted by The Banyan, a Chennai-based institution for homeless women with mental illness and the Banyan Academy of Leadership in Mental Health (BALM) in 2010, and was funded by Tata Trusts. It studied a sample of 75 women discharged from the institution and reunited with their families in Chennai.
The reintegrated women had severe mental disorders: 58.7% were diagnosed with schizophrenia, 18.7% with mood disorders, 4% with intellectual disability and psychosis. No diagnosis was available for the remaining 18.6%.
Nearly one in two women (48%) were in the 30-44 year age group; 33.3% were 45-59 years old; 17.3% were 60 and above and 1.3% were in the 15-29 age bracket. Nearly eight in 10 were literate and one in five were employed. Informed verbal consent was taken from women and their caregivers for the study.
Although India has had a District Mental Health Programme (DMHP) since 1996, discrimination, neglect, stigma and social exclusion act as barriers to the care of the homeless mentally ill, said the National Mental Health Survey (NMHS) 2015-16. Expenditure by states and union territories on the DMHP is less than a third of the approved budget in India, as per the Financial Management Report, 2016-17, of the National Health Mission.
In India, social responses to this vulnerable segment of the population is still driven mostly by ignorance and fear. On February 24, 2018, a mentally ill man from Attapadi, the tribal belt in Kerala’s Palakkad district, was lynched by a mob that accused him of stealing from a shop.
There were 1.7 million homeless/wandering persons in India and of them, 726,169 (41%) were women, according to the 2011 Census. And nearly 50% of this population was likely to have a mental illness, as per a report by Institute of Human Behaviour and Allied Sciences (IHBAS).
“The bidirectional relationship between poor mental health and homelessness is widely recognised--mental illness is both a cause and consequence of homelessness,” said KS Jacob, professor, department of psychiatry, Christian Medical College, Vellore. “Poverty (due to their inability to sustain employment), disaffiliation (from family and friends because of differences in thinking and action) and personal vulnerability (with loss of resilience and resourcefulness) of people with severe mental illness can result in homelessness. Homelessness, in turn, exacerbates poor mental health through lack of basic needs like clean water, sanitation, food, clothing, shelter, physical safety, education, employment, health care, social security, etc.”
In addition to the post-discharge services provided by the institution, family and community acceptance plays a role in the individual reclaiming her life, the study found. This research was critical because there have been very few inquiries into the aftercare of homeless women with mental illness, said Alok Sarin, a policy group member of the National Mental Health Policy of India, 2014, and psychiatrist at Sitaram Bhartia Institute of Science and Research, New Delhi.
“The study has attempted to explore outcomes after the primary intervention or ‘rescue’ of homeless women with psychiatric disorder, and make a rather persuasive case for the intervention modality and bring to light the importance of both the primary intervention and on-going aftercare,” said Sarin.
84.4% of women adhered to treatment, proving the importance of aftercare
The women featured in the study were discharged after their symptoms reduced and social functioning improved at The Banyan, which has been operating a Transit Care Centre (TCC) since 1993. The centre has a free aftercare programme comprising outpatient clinic, disability allowance, readmission, home visits, telephonic reminders, family support groups, training/awareness programmes and employment support for the reintegrated women.
In order to ensure adherence to treatment and reduce the financial burden on caregivers, The Banyan provided a cash transfer (disability allowance) of Rs 200 and transport allowance of Rs 80 to women who attend the clinic regularly. The reintegrated women told us that this modest cash transfer made them feel that they had an independent source of income and could contribute towards household expenditure. Caregivers mentioned how this assistance helped in covering transportation expenses.
More than eight in 10 women adhered to the treatment, indicating that the continued care had been effective. Among the women who continued with treatment after discharge, nine in 10 were regular with medication, reflecting the benefits of home visits, awareness programmes and involvement of caregivers.
Day-to-day functioning restored among 61% women; post-discharge, 49.3% reported minimal disability
Why is reintegration important for those who had been moved to institutional care for mental health problems? “Countries and cultures, which claim to be civilised, have a duty to break the cycle of mental illness and homelessness by caring for the most disadvantaged people in society,” said Jacob. “Population and public health approaches, which provide basic needs and social security, will help in prevention while individual intervention strategies will reduce the impact of mental illness and homelessness.”
Although, very few of the women were employed, integration with their occupational roles can also be gauged by their involvement in household duties: 61.3% of women were engaged with some activity in their household and another 12% helped to some extent with household work. However, 22.7% of them were not involved in any household activity.
If we break up the tasks that the women were able to perform independently, 52% were independent in activities of daily living and 18.7% in visiting the health facility, data from the study showed.
Mental illness can limit an individual’s ability to take care of oneself and to interact with others in social and work settings. Disability among the reintegrated women was measured using the Indian Disability Evaluation Assessment Scale (IDEAS), which scores four domains: Self-care, interpersonal activities, communication and understanding, and work. Each item is scored between 0-4 or from no to profound disability. Adding the scores on these four items gives the total disability score for an individual.
Nearly 50% of the reintegrated women had only mild levels of disability. Given that nearly nine in ten women had mental illness for more than 11 years, this is a positive outcome.
73% women exited homelessness after discharge, but one in five experienced it again
The findings show that although 73.3% of women exited homelessness after discharge, around one-fifth of them reported that they had again experienced it after discharge. Nearly 5% of the discharged women wandered around a fixed radius near their homes during the day and returned to their homes or doubled up with their relatives in the night. Discharged persons with mental illness may experience episodes of homelessness owing to cramped housing, frequent shifting of house, family members’ refusal to accommodate them, poor adherence to medication, relapse and wandering tendency.
Many of the respondents who did not experience homelessness after reintegration spoke about the positive role played by their families and neighbourhood in understanding their situation and including them in day-to-day life, which made them feel accepted and respected.
Selvi (name changed to protect identity) had suffered mental illness for more than 10 years and was homeless till she was rescued from the street by The Banyan. She was treated and made enough progress to be discharged and reunited with her family. She has not experienced homelessness again.
“As my family and immediate neighbourhood included me in their social life and with continuity of treatment being assured, there was minimal family conflict,” she said. This enabling social environment and awareness among families to seek medical help in the event of emergencies has played a major role in the reintegration of the women who were discharged.
The reintegration process sometimes happens only after a long stay at the institution because the client cannot remember any details about her family or home. A woman who had been at The Banyan for almost 35 years was recently reunited with her family because of her doctor’s perseverance. All she could recall was a Sri Raghavendra Swamy Mantralayam temple in front of her home in Karnataka. The doctor located the temple and found that a woman at one of its kiosks resembled the client. She turned out to be the client’s mother. The daughter, who now lives with her family and looks after her mother, works and lives in the community.
Caregivers face challenges at work, isolation in society
Nearly three-fourth of the women featured in the study had been re-admitted at least once since their first discharge, data show. This was also because for some of them, the mental healthcare institution represents a form of surrogate residential arrangement.
The findings suggest that some of them will require short admission facilities to address medical emergencies and their need for a temporary shelter, without which they are vulnerable to homelessness.
Manimekalai (name changed to protect identity), a former homeless woman with mental illness who experienced readmission, spoke about the need for continued care and readmission services. “My family and I feel secure that The Banyan will always keep its door open for me in the event of any need,” she said. “I know that there is a possibility of relapse. But because I am a regular user of the aftercare programme, I am confident that I will not be homeless again.”
Among caregivers of those reintegrated, 26.7% reported facing employment and marital issues. Caregivers who were employed in the informal sector had to change jobs or take time off on loss of pay to care for the discharged women. Marriage prospects of other family members in the household were affected in the case of more than a quarter of caregivers because families of prospective brides/grooms were not keen on marrying into a family with a history of mental illness.
Spouses of the discharged women experienced marital discord: 16% of caregivers reported that they faced problems related to housing access and 10.7%, education. There are instances where the family has had to move houses because they were evicted by the landlord due to complaints from neighbours about the behavior of discharged women. Elderly caregivers experienced the highest level of difficulty in caring for the discharged women.
Need for affordable, early treatment and social care
For the provision of accessible and affordable mental healthcare at primary health facilities, it is important that the DMHP, launched in 1996, be strengthened. Early treatment along with social care and support can prevent homelessness due to mental illness. Also, health providers have to plan for the fact that some of the persons discharged from mental healthcare institutions may need short-term admission in the event of an emergency.
Families and communities need to be sensitised to the needs of individuals who are in the process of social integration. To reduce the stress on caregivers--and ensure that institutional care is not the only option for homeless people with mental illness--it is important to invest in community-based services. For families below poverty line, continuity of care and government entitlements can go a long way in alleviating economic difficulties.
The National Mental Health Policy (NMHP) 2014 states that all in-patient facilities must be linked to community care to ensure continuity of care for persons who are discharged from institutions. It argues for developing a multiplicity of care models for persons with different needs.
Some organisations like Iswar Sankalp in Kolkata have mixed approaches like admission to a transit shelter as well as engaging with homeless persons with mental illness on the street without institutional care. Others like Anjali rehabilitate clients admitted to government mental healthcare institutions in the community. Some organisations also provide long-term institutional care for persons who have high care needs and do not have alternatives in the community, like elderly persons with mental and physical health issues.
“The fact of the matter is that for a small group, institutional care is perhaps needed, and for a majority, community aftercare is the answer,” said Sarin. “So, it may not necessarily be a binary of one vs. the other, both perhaps have a place. It may be wise to remember that what we are ‘rescuing’ these women from is an uncaring community.”
In addition to mental healthcare needs of homeless persons, it is also important to have social protection strategies in place to address their poverty-induced vulnerabilities. This could include the provision of disability pension and livelihood options.
(Balagopal is a consultant with The Banyan Academy of Leadership in Mental Health and Abraham is a programme officer at Tata Trusts. The authors were helped in the task of data collection by Vijay Kumar of The Banyan and students of Loyola College, Chennai.)
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