A Holistic Intervention with Homeless Mentally Ill Person: India's Disability Policy

Abstract:

Ashadeep: A Holistic Intervention with Homeless Mentally Ill Persons in Northeast India

This chapter begins with a brief review of disability policies in India, particularly those that apply to homeless mentally ill persons living on the street. Does India’s disability policy guide social work, psychology, and other related disciplines in how to intervene in the plight of homeless mentally ill persons?  What are the strengths and opportunities, the gaps and challenges in India’s disability policy that frame services for this population?  Most importantly, in what way do India’s disability policies contribute to the development and implementation of holistic intervention models that help mentally ill persons recover and return to their homes and families?  The chapter is contextualized in the north-east region of India, where the milieu of disability consists of diverse ethnic groups with different historical and cultural backgrounds.  In an effort to look at India’s disability policy from the ground up, the chapter outlines the work of Ashadeep, a nongovernmental organization that for more than 30 years has developed a holistic intervention model for homeless, mentally ill persons.  The chapter concludes with a discussion of social work education to disability policy and programs in Northeast India.

Keywords:   Disability, Intervention, Policies, Northeast India

Introduction

The Census of India 2011 records that 2.68 Crore persons are disabled in India. They comprise 2.21% of the total population. Among the disabled population, 56% are male and 44% female (Ministry of Statistics and Programme Implementation (2016). In India, as in the rest of the world, there is little agreement on definitions of disability.  This results in the difficulty of measuring and assessing the concept, and in designing uniform and comprehensive policies.  The World Health Organisation suggests that disability results from problems associated with body functions or structure, inhibitions faced in carrying out an activity or task, and life situations that restrict meaningful participation in society. The United Nations Convention on the Rights of Persons with Disabilities (2006) lays the framework for defining disability as a multi-dimensional concept. Following the enactment of the Persons with Disabilities Act in the year 1995, the 2001 Census gathered information on five types of disability– seeing, speech, hearing, movement, and mental disability. Census 2011 included eight types of disability, namely, disability in seeing, hearing, speech, and movement, mental retardation, mental illness, and multiple disabilities, and any other types.

Although the 2011 Census provided a count of persons with disabilities, there is little information on disabling life situations that prevent people from meaningful participation in the society. Cultural and structural impediments continue to marginalise persons with disabilities in education, employment, mobility and other significant life areas. Cultural barriers, such as, beliefs and stereotypes obfuscate and stigmatise persons with disabilities, while, structural impediments, such as, poverty, lack of development, illiteracy, unemployment, caste, class, gender and ethnicity affect thesurvival and life-chances of persons with disabilities. In this regard and in such circumstances, Mehrotra (2011) calls for models of intervention that aim at prevention and rehabilitation.

This chapter begins with a brief overview of disability policies, particularly those that apply to homeless mentally ill persons living on the street in India.  To look at India’s disability policy from the ground up, the chapter outlines the work of Ashadeep, a nongovernmental organization that for more than 30 years has developed a holistic intervention model for homeless, mentally ill persons.  The chapter concludes with a discussion of social work education to disability policy and programs in Northeast India.

Disability Policy in India

The Constitution of India provides the framework for safeguarding and ensuring dignified life to the persons with disabilities within the Indian state. The Preamble to the Constitution of India stipulates that it secures for all its citizens, social, economic and political justice, and promoting among them all fraternity, dignity ad unity of the nation. The Fundamental Rights demarcated in Chapter III of the Constitution of India aim at removing inequaltiy, untouchability, status-caste and religious considerations and economic exploitations.  Article 41 of the Directive Principles of the Indian Constitution supports the right to work, to education and public assistance. Article 45 commits to the provision of free and compulsory education for all children up to the age of 14 years. In keeping with the Jometian World Declaration on Education for All (1990), through the Constitution (Eighty-sixth Amendment) Act 2002, a new article 21A was inserted within the Fundamental Rights Chapter. The article provides for “free and compulsory education to all children of the age of six to fourteen years” as a fundamental right. It also bound the state to provide for early childhood care and education until the children completed the age of six years while holding the parents or guardians accountable for providing educational opportunies for their children.

Beginning in 1994, several laws secure the rights of people with disabilities (See Table 1). Of note, the fruition of Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act of 1995 owed “much more to international pressure than to lobbying and protests by disability rights groups… [it] touched the lives of masses of disabled persons and pushed for a more disabled-friendly environment in the country” (Mehrotra, 2011, p. 65). An analysis of the politics and practice of disability in India shows that several factors were involved in the rise of disability movements in the late 1980s and 1990s. These included the push for state accountability, and the influence of women’s movements and international pressure, all combined to create a conducive space for mobilization and emergence of the movement for the rights of the disabled.  These movements aided in changing interventions to focus on the rights of the persons with disabilities. Prior to this landmark shift, most approaches and services for the disabled in India followed the biomedical model in which hospitals and health centres provided services aimed at curing, correcting or ameliorating the disabling conditions of the individual,and making them as “normal” as possible. Even the term “handicapped” was retained in all policy documents until 1995.

<Table 1 about here>

The Rights of Persons with Disabilities Act of 2016 pushed for a social model to address the issues and rights of the persons with disability. Though the Act promoted inclusion in all walks of life, it lacked a transition strategy. Implementation of the Act has been thwarted by the absence of a barrier-free environment, a lack of trained personnel to support the needs of persons with disabilities, and inadequate investment by government and private institutions (Cherian, 2016).  There have been several criticisms about the ability and will of the state to deliver on these fronts. For instance, critiquing the role of state in providing quality care and education for the disabled in Manipur, Haokip (2017) stated that despite a multiplicity of schemes and programmes adopted by the government, there was a lag in the implementation for creating an inclusive system. Some of the schemes intended for assisting disabled school-goers were meagre and of little use in the present-day context. Bhasin (2016) states that the district officials, church leaders and the larger community, by and large, lacked awareness and empathy in dealing with persons with disability.

In April 2017, The Mental Healthcare Act was passed to protect, promote and fulfill the rights of and services for persons with mental illness. The 2017 Act is an outcome of India’s mandate to fulfill its obligtion to the Conventions on Rights of Persons with Disabilities and its Optional Protocol, and replaces the Mental Health Act of 1987, which was designed to address the needs of persons with mental illness through a welfare approach and institutionalization. The 2017 law addresses the needs of persons with mental illness through a framework of rights where the state is the duty-bearer and the persons with mental illness are right-holders. Though a progressive piece of legislation, there are signs of warning in the areas of political will and funding that are crucial to its implementation. Portions of the legislation are ambiguous, vague, and opaque, and the Act specifies discrimination only in healthcare. The fulfillment of the Act will depend on whether other legislations are updated in line with its spirit and word (Duffy & Kelly, 2017).

In summary, there have been policy improvements in addressing disability issues and providing services for the children and adults with disabilities in India. Nevertheless, the country still lacks a “reliable database, effective implementation of legislation and policies, and development of effective, accessible, and affordable interventions (Girimaji & Srinath, 2010, p. 441). Singal (2006) argues that the policy for inclusive education has wide usage, but mainly functions as rhetoric in government, academia and the mass media.

Social Work Education in India

Social work in India was born with the spirit of voluntarism against the backdrop of socio-cultural and religious reforms mainly by Gandhian ideology and nationalist sentiments.  The Servants of India Society was founded by Gopal Krishna in 1905 and the Social Service League was started by Gandhian social workers in Bombay (renamed Mumbai in 1996) in 1924 to provide voluntary training for engaging in social development programmes. These trainings were based on the philosophy of dharma, where one is expected to help the needy to attain moksha rather than aiming at social change and transformation  (Jaswal & Pandya, 2015). Formal social work training in India started with the formation of the Nagpada Neighbourhood House by the American Marathi Mission. It sought to address social problems in a slum setting caused by settlements of migrant labourers in the city. The focus of the training included addressing poverty, gambling, and prostitution. It was headed by Dr. Clifford Manshardt, an American missionary, who was later instrumental in the establishment of the first school of social work, the Sir Dorabji Graduate School of Social Work (now known as the Tata Institute of Social Sciences, Mumbai) in 1936, which introduced the professionalization of social work in India (Dash, 2017). Tata Institute of Social Work remained the only school for professional social work education for ten years between 1936 and 1946 (Jaswal & Pandya, 2015).

After India’s independence, social work education in India was profoundly influenced by the American ideas through the following developments. Influence came primarily from greater exposure of Indian social workers to American social work education through study tours and the appointment of American trained social workers on the faculties of the schools of social work in India. American influence came most systematically through the US government’s Technical Co-operation Mission and the Council of Social Work Education Exchange Programme. Under this programme, during 1957–62, American social work educators came as consultants or conducted faculty development programmes in the Indian schools. In exchange, faculty members from Indian schools of social work went for study to the schools of social work in the US (Pathak, 1975, as cited in, Jaswal and Pandya, 2015).

The introduction of specializations in social work emerged primarily under the American influence and partly due to the felt need.  Various specializations that emerged due to situational demands and offered by TISS are discussed at length by Jaswal and Pandey (2015).  As a corollary, a major source of influence was the extensive use of American books and journals in schools of social work in India. Though the need of indigenous study material had been urged by social work educators time and again, the situation remains unaltered, as pointed out by Nagpaul (1986) and Desai (2002) in an analysis of social work study materials in use in India in 1972 and 1986. Hence, social work education in India had combination of both American and British influence. Although there were efforts to indigenize social work by invoking the socio-cultural and religious philanthropic traditions of India, and making it responsive to the social, political and economic questions of India’s context, indigenization has remained wanting and neglected (Narzary, 2014).

The process of restructuring of courses by TISS in 2006-07 introduced foundation courses and re-organized traditional specializations into concentration methods and specific fields of intervention. Foundation courses sought to broaden students’ multi-disciplinary understanding of social work: theories, approaches, and interventions. This has located social work education as interdisciplinary by drawing from sociology, anthropology, psychology, law, economic, political science, and history (see for example TISS Prospectus, 2006-2007).  In addition, in classes attended by students pursuing different programmes at the Institute social work students are introduced to current affairs of India and the world.  This has paved the way for the establishment of centres to study and offer course in both theory and intervention models did not find adequate space in the earlier scheme of social work education. For instance, Women Studies, Dalit and Tribal Social Work, Disability Studies and Action emerged as strong areas of focus within the new scheme of social work education.  Thus, social work education in India keeps a curricular focus on understanding of realities of the vulnerable within the emerging domain of development; whilst a larger understanding of development debates, new emerging forms of injustice and oppression such as displacement and disaster related vulnerabilities (Jaswal & Pandya, 2015, p. 144). Collated from Mehrotra, Singh, and Saini (2016) and collected from websites of various colleges and universities, Table 2 shows the universities offering programmes on disability studies in India.

<Table 2 about here>

Social Work Education in Northeast India

India’s Northeast region is renowned for its socio-cultural and linguistic diversity. It is also known for complex issues ranging from poverty, conflict, human rights violation, governance and insurgencies, but the education system in the Northeast has not gone beyond traditional social sciences for many decades. However, over the last decade, especially from 2005-2010, there has been a sudden blooming of social work education offered by government and private institutions in the Northeast much like the sudden explosion of social work education in other regions of India in the 1960s and 70s (Riamei, 2014). One example is the development of Assam Don Bosco University, the first private university in Northeast India. The large new Tapesia campus, built from the ground up, is dedicated to bringing social work education and a full range of university programs to this underserved area.  Table 3 shows the institutions and universities offering social work education in Northeast India.

<Table 3 about here>

While there has been a spurt in the response of social work to the needs of people with disabilities, educational programs in general have not been engaged critically in developing innovative intervention programs or in advocating for policy change.  Thus, the chapter presents a brief case discussion of the work of Ashadeep, a nongovernmental organization working with homeless mentally ill individuals in the Assam region for more than 30 years.  The case offers some insight into an organization dedicated to homeless schizophrenic people, and the way in which Ashadeep developed its programs and advocated for policy change over the past many decades of disability laws in India.

ASHADEEP: An Intervention Model in Northeast India

The Northeast part of India with its distinct geo-political and cultural context, is connected to the rest of India with a narrow stretch of land, commonly referred to as the chicken’s neck. The region lacks mental health services, programmes, policies and interventions, both at the government as well as non-governmental level, thereby creating a vacuum in this critical component of health.  Mental health continues to be least talked, characterized, and experienced by a sense of humiliation, stigma, neglect and rejection. Health seeking behaviour in general varies from community to community based on the area’s socio-political and cultural context, but this is more evident when it comes to mental health. People prefer going to quacks, performing religious rituals or keeping the presence of disabilities hushed up to the extent that often leads to grave consequences. Professional services of counsellors, psychologists and psychiatric social workers have just begun in this region.  As educational institutions offer such coursework, professional services will help to improve and strengthen the mental health situation in the region. However, as often is the case, academia lags behind the real and felt needs of the community.  This is certainly true when it comes to developing programmes and services for mentally ill homeless persons.

Started in the year 1996, Ashadeep was the first organization working in the field of mental health in Assam. In the initial years, the work was very challenging. Awareness, perception and orientation to the needs of people with disabilities was extremely low at the societal level, and more so because of the apathy of the government to understand and implement policies and programmes for this marginalized section of society.  A ray of hope came about when a couple, Mukul and Anjana Goswami, decided to start services for mentally disabled individuals with the aim of creating a space wherein these people could lead a life of dignity and realize their full potential.  They had undergone the struggles involved in seeking treatment for a family member with schizophrenia.  Their experiences of caregiving and rehabilitation over a period of nearly ten years made them realize that there were many families like them whose lives had changed because of having a mentally disabled person at home. This experience motivated them to start Ashadeep, a mental health organization, dedicated to post-clinical rehabilitation.

There are very few organizations working in mental health in Assam, and most of them have been founded by family members who have experienced the pain and agony of living with persons with mental disability. This has given them a better understanding of the situation and the reality. It has fostered cooperation amongst these organizations to work together in programme implementation and advocacy. Ashadeep has worked against all odds to improve the mental health services for people through its various programmes, advocacy and training and research activities. Ashadeep’s development over the last 21 years reflects the challenges, as well as the changes and growth, that have evolved in terms of policies, schemes, programmes, perception, attitude and knowledge of the people and the government of this region. Although not as much as necessary, there has been progress in adoption of policies in mental health and its implementation in this part of the country.

Programs and Services of Ashadeep

Before moving to the other districts of Assam, Ashadeep started the Day Rehabilitation Centre in Japorigog, Guwahati to provide rehabilitation and psychosocial support programmes for people with disabilities in 1996. The Centre serves persons disabled through mental illness and mental retardation and associated developmental disorders. Ashadeep works both with children with special needs – CWSN (intellectual disability, autism spectrum disorder, etc) and PWMI (persons with mental illness). Together with the day rehabilitation centre, they also opened a sheltered workshop for CWSN and PWMI. Vocational training with an emphasis on income generating activities was a major component of the rehabilitation process. Table 2 provides an overview of the growth of Ashadeep.

<Table 2 about here>

The majority of the persons with mental illness do not have access to rehabilitation services and more so with the people from the lower income group. The Centre was able to cater to people who required these services in order to reintegrate them back to society. Gradually, residential and outreach programmes were added.  Ashadeep has focused upon the need of bringing mentally challenged individuals in the mainstream and building an inclusive society. The growth of Ashadeep has initiated the realization of the needs of the Northeast region with respect to mental health, and has been made fruitful by the various projects that have catered to the needs of the people of this region. Through its work, Ashadeep addresses the impact and associated burden of mental illness for the affected individual as well as his or her family. This approach moves beyond a mere clinical and medical intervention for persons with mental illness, by providing rehabilitation and care at the family level and the community.

Community mental health programme is a more intensive approach of Ashadeep’s outreach intervention aimed at empowering the community on mental health. Community based treatment approach emerges as the best alternative avenue available for people in the developing countries to access treatment. It is a multidimensional intervention process that effectively meets the community’s need for appropriate mental health services through engaging the available resources at the local, tertiary and national level and stimulating commitment and awareness from all stakeholders (WHO, 2009). A community care approach also signifies “power to treat mental disorders” is shifted from the institutions to the community. This programme consists of identification of persons with mental illness, their referral to primary health centres, follow-up to ensure continuation of medication and facilitation of income generation activities for mental illness.

In 2006, Ashadeep started Navachetana Homes, a three-tier program of transit care, rehabilitation, reintegration with their families, or group homes.  Psychiatric and other medical treatment and psychosocial support is provided to these women by a team of psychiatrists, psychologists, counsellors, social workers and trained health care staff. When the women are reintegrated with their families, follow-up and support, counselling and free medicine is provided on a regular basis.  Ashadeep’s Roshmi Home Again is a group living that simulates an extended family household.  Roshmi is for those who have recovered and are ready for reintegration but the whereabouts of their families could not be traced throughout India, or for other reasons cannot return to their extended families of origin.  This is a process of de-institutionalization and giving them an opportunity to live as a family, to earn some kind of income for their own use, and to go freely into the community.  This is a service provided by Ashadeep both in the urban setting and rural settings in space given by the government. It is heartening to meet a family of five women living in an apartment and managing their home–from planning what to cook for their meals, shopping and managing their daily household chores. During the day time they go to the vocational unit of the organization to work and get trained. This is creating a space for them in the society and building an inclusive environment.

The government has provided infrastructure funds for the implementation of a Roshmi group living model in rural areas.  The families in the rural setting, both men and women, are engaged in farming, agriculture, weaving, and sewing. This gives them a sense of independence, freedom and space to manage their lives which in turn builds their self-esteem and confidence. A study with a controlled group living in institutions and in family settings is being conducted in collaboration with another organization to gauge and measure critical parameters which would establish whether living in institution or in family setting is better for the growth and development of formerly homeless mentally ill persons.  In the final analysis, both models may prove useful and effective.  Both institutional and non-institutional care are a critical part of rendering service to this population.

Ashadeep’s Influence on Government Policies and Programmes

As Ashadeep ventured into advocacy, research, and training, it played an active role with government in planning policy and developing action plans for the well-being of homeless persons with mental illness. According to Mr. Goswami, to ensure the rights of people with disabilities, it is imperative that the government and non-governmental organizations work in close collaboration. In Assam, the Department of Social Welfare has the mandate of implementing the mental health policies and programmes enacted and formulated by the Ministry of Social Justice. Thus, a lot depends on the timely intervention of this Department.

Community based interventions are being implemented in partnership with local organizations in the Sipajhar block of Darrang District, Mayong block of Morigoan District and Boko block of rural Kamrup, Assam. Ashadeep acts as a catalyst by initiating services in these areas with the local partners, thereby building their capacity and later withdrawing from the area. This leads to sustainable programmes through local ownership. In partnership with the local NGO or Government PHC/CHC, regular monthly mental health camps are held in various locations, each for a period of 12 to 18 months. This community psychiatry approach has resulted in the appointment of a psychiatrist by the Health Department in each of these centres. Leading the government to adopt a policy of appointing a psychiatrist in these centres was a very important part in addressing needs of the people.

Ashadeep took a lead role with the government of Assam in framing a policy for homeless people with mental disabilities, and developing an SOP (Standard Operating Procedure) for the same. Since the city of Guwahati is linked with rail routes across the country, this proved to be a destination point for many destitute mentally ill people, including women. It has been a common phenomenon to see people with mental disability on the streets of Guwahati as well as in the other districts of Assam. Ashadeep responded to the needs of this marginalized, discriminated and unwanted group of people by rescuing, rehabilitating and re-integrating them. Rescuing homeless mentally ill persons was a great challenge as there was no specific policy and adequate facilities for them. However, once Ashadeep started its rescue operation, it became a practise for citizens to call up Ashadeep when they identified people with mental disabilities wandering on the streets. This came as a relief for many who wanted to help, but did not know how to reach out. However, this was not as simple as it sounds because doubts and apprehensions were voiced by the various sectors of society on the intentions of the organization rescuing such people. Ashadeep was not deterred by such allegations. They worked with the government of Assam to frame a policy for this vulnerable group of people. Now, when police see or get information from concerned citizens, they conduct the rescue.  In every district, there are committees consisting of the District Administration, the Department of Health, the police department and civil society organization to facilitate this process.

A further development to this effort is that the Social Welfare Department of Assam took the initiative to provide the infrastructure and the funds to set up a Rehabilitation Home for Homeless Men with Mental Illnesses at the Permanent Liability Home campus of the Government at Bamunigaon, Boko. This has been a respite to homeless men with mental disability, who were a vulnerable group left out from care and treatment. Another programme initiated by the Department of Social Welfare provides higher education for this group of people. Though higher education may not be feasible for them, a plan for early detection of the disability, imparting basic skills, pre-vocational training stage and final vocational training stage is being planned and discussed. If implemented, this would be very useful to help them become self-sufficient.

Mr. Mukul expressed satisfaction that the present government and the officials of the Department of Social Welfare have established a platform for discussing important decisions with the members of organizations working in this area. Earlier the government would disburse money to organizations without ascertaining the outcome of the programmes.  Now, a system of monitoring and accountability is in place which is extremely important for ensuring quality, standards and proper implementation of the policies and programmes. Currently, with representatives from Ashadeep and stakeholders from civil society, the State government is formulating the State Rules for the Rights of Persons with Disability Act that was passed in 2016.  This move to include representatives from society and making it participatory will help in the incorporation of provisions that are specific and appropriate for this region, which will in turn augment the mental health delivery system.

In summary, the mental health scenario is gradually gaining momentum, though there is a long way to go. The new laws and policies are clearer and broader in their definitions which include more categories of disability, thereby extend and expand the reach of mental health programmes to many more people.  With the provision of the new Act, Ashadeep can open bank accounts for people in treatment and long-term care.  What remains important is paying attention to the number of acts, policies and programmes with amendments being made from time to time, so that there is proper implementation and monitoring on the part of the government.

After working in this area for 21 years, Mr. Goswami was acknowledged and recognized by the government with the Padmashree Award for his untiring contribution to this field.  His view is that non-governmental organizations should be supportive to the government in its endeavour to promote mental health, but they cannot substitute for the role of the government. Due to the limitations faced by the organizations, including staff, resources, and grant funding, in the final analysis, it is primarily the government ’s role to protect and promote mental health.  Non-governmental organizations should support government efforts in the implementation of the policies and programmes to address needs, reduce human suffering, and promote a positive environment for mental health.

Discussion

Conclusion

it is essential that disability studies expand and form a core focus of all educational institutes and universities to address the wide scale social exclusion of the persons with disabilities in the Indian society.

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Table 1. Historical Development of Disability Policy in India

Table 2: Educational Institutions Offering Programmes on Disability

Table 3. Overview of the Growth of Ashadeep and its Programmes