Abstract
The best way to find yourself is to lose yourself in the service of others.
—Mahatma Gandhi 1
In 1945, when the United Nations (UN) was formed, there were some organizations that were neither a part of any government nor for conventional profit business. 2 Thus emerged the concept of nongovernmental organizations (NGOs). 2 However, their discrete identity and definition still needed refinement and consolidation. The UN Department of Public Information (DPI) defines the NGO as “a not-for-profit,” voluntary citizen’s group that is organized on a local, national, or international level to address issues in support of the public good. 3 The Central Statistical Institute of India announced in 2009 that there were 3.3 million NGOs registered in India. 4 There have been more than 10,000 verified NGOs and more than 1,600 certified NGOs on Guide Star India’s (GSI) portal in 2020.
One of the most prominent pieces of the literature in this field is “Role of nongovernmental organizations in mental health in India,” 6 which discussed in depth the role of NGOs in mental health in India, starting from the evolution of NGOs in India, from initial involvement in child mental health to gradual expansion to all other aspects. The role played in varied fields ranged from treatment, rehabilitation, community care, research, and training and capacity-building to awareness and lobbying. The potential role that mental health NGOs (MHNGOs) can play in collaboration with the public health sector, mainly through innovation and accountability, was also put forth. Another major work is “History of psychosocial rehabilitation in India,” 7 where the key concept of psychosocial rehabilitation in community mental health was discussed. It portrayed the role that MHNGOs have played in the history of psychosocial rehabilitation in India, whether it be the Medico--Pastoral Association (MPA) establishing the first halfway home in India for persons with mental illness (PWMI), community-based day care initiated by the Schizophrenia Research Foundation (SCARF). This article conceptualizes MHNGOs as “Not for profit volunteer groups that are organized on a local, national or international level to address mental health issue”.
In India, initially, the NGOs were constituted primarily by religious bodies, and their role was restricted to crucial times, like a disaster, where they provided emergency relief and facilitated rehabilitation. Since independence, NGOs have evolved drastically. There has been a shift from catering to just physical ailments (tuberculosis, leprosy, and HIV/AIDS) to catering to disorders of the mind, which led to the emergence of MHNGOs. They mainly focused on more apparent and disabling problems such as intellectual disabilities and other childhood illnesses that would often lead to neglect and even homelessness. The MPA was the first voluntary organization to be established, in 1964, in the area of mental health. 8 The 1970s and the 1980s saw the evolution of various MHNGOs working on varied aspects of mental health. 8 After the enactment of the Mental Health Act (MHA) by the Government of India in 1987, the next two decades saw further growth of MHNGOs. The focus also shifted from a disability perspective to a more rehabilitative and holistic approach. Although the exact data on MHNGOs is sparse, they have a wide repertoire of work, including interventions at all levels of prevention in childhood illnesses, school mental health, dementia, substance use disorders, and common and severe mental health disorders. 9
The wide treatment gap revealed by the National Mental Health Survey (NMHS), 10 and the national dearth in human resources and infrastructure necessitate decentralization and a community-based approach to mental health care. MHNGOs can bridge this wide treatment gap by creating awareness, facilitating mental health promotion, helping in treatment, training workers about rehabilitation, lobbying for policy change, and doing community-based research. Availability, accessibility, affordability, and acceptability are key factors in ensuring “health for all.” MHNGOs play a major role in fulfilling these necessities. The recently passed Mental Healthcare Act (MHCA) 2017, which is a human rights-based legislation, further opens new vistas in mental health care, including furthering the role of MHNGOs. 11 This article attempts to highlight the role of MHNGOs in realizing the rights of PWMI as enshrined by MHCA 2017.
MHCA and MHNGOs
Compared to its predecessor, the MHCA acknowledges the role of MHNGOs much more discretely. The Act gives a broader meaning to the term Mental Health Establishments (MHEs) and discretely mentions criteria for establishing the same, which was lacking in the previous Act. Although nonmedical setups were included even under the MHA as an MHE, the specific criteria for establishing the same at State and Central levels were not clearly mentioned. Establishments run by MHNGOs are brought under MHE as long as they fulfill the criteria of an MHE. Chapter V, which talks about the rights of PWMI, is the heart and soul of this Act.
The MHCA also realized the important role that MHNGOs have played so far and the potential role they can play in fulfilling the goal of “mental health for all” (Table 1).
The Role of MHNGOs as Mentioned in Various Chapters of MHCA 2017
MHCA, mental health care Act; MHE, mental health establishments; 87 MHNGO, mental health nongovernmental organizations; PWMI, people with mental illness.
MHNGOs as MHEs
MHA 1987 had mentioned only psychiatric hospitals, psychiatric nursing homes, and convalescent homes as centers for the care of the mentally ill. The mention of MHNGOs is conspicuously absent in this Act. However, Section 2(p) of the new Act defines the term “mental health establishmentas” “to includes any general hospital or general nursing home established or maintained by the appropriate Government, local authority, trust, whether private or public, corporation, cooperative society, organization or any other entity or person.” 12 Hence, according to this definition, any general hospital or nursing home run by MHNGOs is also considered an MHE. They can play a multifaceted role in providing mental health services (Table 2).
MHNGOs and MHEs
IEC, information, education, communication; IPV, intimate partner violence.
Not just the establishment but also the surveillance and monitoring of existing and registered MHEs can be delegated to the NGOs. As mentioned in chapter X, section 67, the audit of MHEs at regular intervals can be spearheaded by NGOs to ensure that minimum requirements are met and that no violation of provisions under MHCA or rights of PWMI has occurred. The erstwhile “Board of Visitors,” as mentioned in the MHA 1987, has been revamped to also include resentatives of NGOs, who under the MHCA have been given the authority to audit registered MHEs. Awareness creation and implementation of the same should be done. 13 The MHNGOs should act as important stakeholders, instead of being entrusted the sole responsibility, and work in partnership with the government in this process to ensure proper quality of MHEs so that there is no violation of human rights. As per section 77, if any rights of PWMI have been violated, for redressal, an application to the appropriate board can be made by a registered NGO after obtaining the consent of the aggrieved. This also highlights the need for National and State Human Rights Commissions to make periodic visits to ensure the protection of basic human rights in this vulnerable population or empower NGOs to do the same.
MHNGOs and Nominated Representatives
Section 14 (4) (e) provides MHNGOs with the authority to function as nominated representatives (NRs) under specific circumstances. When no person is available to be appointed as an NR, a person representing an organization working for PWMI, which includes MHNGOs, may temporarily discharge the duties of the NR after giving a written application to the medical officer in charge of MHE or the psychiatrist in charge of the patient. However, this is only on a temporary basis till the concerned Board appoints someone from the Department of Social Welfare. This becomes even more relevant in the case of the homeless mentally ill who often have no to minimal psychosocial support.
MHNGOs and PWMI
The various ways in which MHNGOs can help the government fulfill the rights of PWMI that are mentioned in the MHCA need discussion. The MHNGOs can reinforce, augment, and embolden the available public infrastructure by a public-private partnership (PPP), which provides an efficient and economical integration for service provision, decreasing the burden on the government (Table 3).
Role of MHNGOs in the Welfare of People With Mental Illness
* Only for representation purposes, there are many other MHNGOs working in the field of mental health.
PPP, public private partnership; CMHA, central mental health authority; 136 SMHA, state mental health authority; MHRB, mental health review board; IEC, information 137 education communication.
Being part of the community and considering the diversity of languages, religions, cultural beliefs, and customs in India, MHNGOs better understand the needs of PWMI and hence can fulfill the unmet mental health care needs. The associated stigma is less as they are not considered a part of the conventional mental health setup. 6 The limited available resources make them more innovative and flexible in their treatment strategies (e.g., the community participatory model of rehabilitation). For example, Sangath’s Manas project demonstrated the successful integration of treatment for common mental disorders with primary care.14,15 The Healthy Activity Program (HAP) 16 and VISHRAM 17 are studies on depression done in primary care and community-based setup, respectively. A study by Ashagram demonstrated the effectiveness of the community-based rehabilitation (CBR) model for the treatment of chronic schizophrenia in a rural setup. 18 Similarly, SCARF has been using telemedicine to expand access to specialist mental health services in rural areas. 6 Such measures ensure that the MHNGOs act as a means of providing mental health for all.
A gamut of MHNGOs is working in the field of rehabilitation, providing services ranging from halfway homes and sheltered and supported accommodation to assisted living. 6 The inception of day boarding services and respite care centers by MHNGOs may benefit, either directly or indirectly, the health of PWMIs and caregivers alike. The Richmond Fellowship Society (RFS, an NGO) Bangalore branch provides facilities like a halfway home (Asha), daycare center (Chetana), and long-stay home (Jyothi). MHNGOs set up various camps in the community as well. They provide vocational rehabilitation training, financial aid, legal aid, and long-term care facilities. They also run special schools for children with developmental disorders and intellectual disabilities. Umeed is an MHNGO that runs a school for differently-abled children. 6 Similarly, SCARF offers a one-year diploma in mental health care and counseling in collaboration with the National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, and doctoral research (PhD) in mental health in affiliation with the Dr MGR Medical University. These MHNGOs play a major part in ensuring the reintegration of patients with mental illness into society, enabling them to live a life of dignity and giving them the opportunity to live in least restrictive environment. 6
Various MHNGOs advocate for the rights of PWMI for better living conditions and treatment, including access to food and better sanitary conditions. Many of those MHNGOs may have been actually started by “prosumers,” who, having seen both sides of the coin, are better equipped to understand the perspectives of PWMIs, caregivers, and health care providers, enabling them to be better advocates. The MHNGO Banyan in Chennai provides shelter for the homeless mentally ill and helps in their rehabilitation. The MHNGO Shraddha works exclusively for the destitute and wandering mentally ill. 19 Many MHNGOSs work specifically with women, children and adolescents, and older adults, all of whom are vulnerable sections of society who are more likely to be neglected. This is particularly important in already marginalized communities such as migrant, indigenous, and tribal populations, where NGOs are more likely to succeed than a traditional mental health setup. Anjali, a Kolkata-based nongovernmental mental health rights organization led by Ratnaboli Ray, works in collaboration with the government to ensure full rehabilitation of PWMI, with a special focus on the marginalized section of society. It is also involved in advocacy, research, and campaigning. 20
MHNGOs can complain to the concerned authorities on behalf of PWMI when their rights are being violated or in case of inadequate care and services. They can file PILs to highlight any deficiencies in the system, discrimination or exploitation by the system, or lack of proper infrastructure of the system (e.g., MHEs not meeting minimum requirements). A prominent example is the case of Gaurav Kumar Bansal vs. The State of Uttar Pradesh on July 10, 2017, wherein the activist filed a writ petition. He is an activist lawyer who has on many occasions legally represented NGOs. Such collaborations can ensure better legal support and representation of NGOs. 21 At the same time, working with the NGOs would provide these activist lawyers with the necessary resources. Similarly, action for mental illness India (ACMI) is an advocacy initiative working for the rights and needs of PWMI. 6
The MHNGOs can embolden the access to legal aid to the PWMI and their families by including in their panel lawyers and advocates with experience in mental health legislation and in making PWMI aware of their rights, as many of them may be bereft of primary caregivers on account of homelessness and stigma. MHNGOs can act as facilitators of justice in these often exploited and vulnerable populations. India Justice Foundation (IJF) is an MHNGO that provides counseling and legal assistance to low-income citizens on civil and family disputes.
MHNGOs have been working to ensure that the rights of PWMI are fulfilled. The MHCA acknowledges this and further emboldens MHNGOs to continue their work.
MHNGOs and Statutory Bodies
According to MHCA 2017, the Central (chapter 7, section 34.1.o) and State (chapter 8, section 46.1.n) mental health authorities (CMHA and SMHA) need to have representation of members from NGOs working in the field of mental health. This reiterates the importance of MHNGOs in the collaborative care of PWMI. Thus, MHNGOs can play a part in policymaking and lobbying for a change to address the unmet needs of PWMI. Because the norms for different types of MHEs will be formed by the CMHA, the inclusion of MHNGOs will help bring about their viewpoint and might ease the process of integrating MHNGOs under the broader ambit of MHE. The rights of PWMI are ignored mainly because of the low awareness coupled with the stigma associated with mental illness. 22 The raison d’etre for most MHNGOs has been advocating for the needs of underserved and underprivileged sections. A few prominent ways of improving mental health care are through documentation and dissemination of relevant facts and research and through lobbying policymakers for changes in the law. Research on schizophrenia done by SCARF in Chennai in collaboration with WHO is a prime example of NGO work in this field. Similarly, its international film festival frame of mind 6 helps to improve awareness and deal with stigma. The Hans Foundation, a public charitable trust, supported the study “National strategy for inclusive and community based living for persons with mental health issues” in collaboration with the Ministry of Health and Family Welfare (MoHFW) and various other institutes. 23 The inclusion of mental disabilities in the disability legislation of the country is another such renowned example of the success of efforts of MHNGOs in this regard. 6
MHNGOs will also be part of the Mental Health Review Board (chapter 11, section 74.d) (one Board in each district). The Board (chapter 11) shall ensure the implementation of the MHCA, overlook the NR and the advanced directives, ensure that the rights of PWMI are not violated, certify mental health fitness, and look at high supports needs admissions. This will ensure adequate representation of PWMI in the decision-making process.
MHNGOs and In-Patient Care
In case of admission of a PWMI under section 89 (high support needs) or section 90 (supported admission beyond 30 days), an MHNGO can appeal to the Board if it feels that the person no longer needs supported admission [section 89(10)], after due consent of the person or his NR, for review of the decision of the medical officer or mental health professional. This will ensure that the rights of PWMI are not neglected.
MHNGOs and Suicide
Suicide has always been a sensitive topic; the MHCA tries to destigmatize it and allay the fears of the patient, family, and clinicians dealing with it. Section 115 of the MHCA decriminalizes suicide and presumes that anyone who attempts suicide must be under severe stress unless proven otherwise. It says, “The appropriate government shall have a duty to provide care, treatment and rehabilitation to a person, having severe stress and who attempted to commit suicide, to reduce the risk of recurrence.” MHNGOs can play a major role in this; they can not only have a preventive role by providing helpline facilities and acting as gatekeepers but also ensure that these people can access the necessary mental health care needs and rehabilitation. MHNGOs can act as a bridge by ensuring that people undergoing severe stress can access the necessary help. However, the legalities involved are still in the grey area. Section 309 of the IPC has not been repealed, and the exact legal procedure to be followed in these situations (e.g., filing a police complaint, making it a medico-legal case, etc.) needs to be more lucid to make the process less cumbersome for the caregivers and clinicians. MHNGOs can ease this process by providing legal aid.
Setting up an MHNGO–Past and Future
MHNGOs can be harnessed to provide services either by PWMI (prosumers), their caregivers, professionals working in providing services to PWMI, or a combination of any of the three. Prior to the MHCA, an MHNGO had to be set up like any other NGO, which was a protracted and often tiresome procedure, differing from state to state. Depending on the specific states’ legislation, they could be registered under the Indian Trust Act, Society Registration Act, Company Registration Act, or any other act/law.
As per the MHCA, establishments run by NGOs come under the umbrella term of MHE. Hence, provisions for setting up an establishment by an MHNGO are similar to those of any other MHE. It would require approval from CMHA or SMHA.
Outpatient services are excluded from the term MHE. This leads to the exclusion of MHNGOs functioning on an OPD basis and undermines their importance. Although minimum standards for MHEs have been published, there is no mention of the different categories of MHEs or any specific provisions regarding MHNGOs. The process of registration of MHNGOs under MHCA, already registered under various Acts, needs further clarity. The state of Chhattisgarh, under its ambit, has spearheaded the development of minimum requirements for varied MHEs by specific categorization depending on the nature of the MHE, leading to specifications particular to NGOs. However, this is yet to be implemented.
Critical Evaluation of MHNGOs
The role of MHNGOs is crucial in meeting the unmet mental health needs of the Indian population of approximately 138 crores. However, presently, they are in too nascent a stage of development to be envisioned as the next harbinger of radical change in the mental health field. They are plagued by several administrative problems, including a paucity of trained staff and a shortage of adequate funding and financial support. The lack of a fixed and constant source of funding leads to employment being not guaranteed, causing a high turnover of the staff. Often, the NGOs may be used by unscrupulous individuals for illegal activities and money laundering, as donations received may be exempted from taxes.24,25. Many of the MHNGOs in India may be run on religious principles and may come with their baggage of orthodox, religious, or cultural viewpoints, which may not necessarily align with evidence-based medicine, predisposing to violation of human rights.
The profile of individuals initiating and managing an MHNGO may need some regulation to prevent exploitation and abuse under the façade of caregiving. 26 Generally, NGOs try to evade the careful scrutiny in the garb of altruistic posture, and one should be aware of this reality too. The meager number of MHNGOs itself acts as a barrier to systematically study and build evidence of the role of MHNGOs in the treatment of mental illnesses, compounded by the limited initiative of research in this domain. Currently, the majority of the MHNGOs are concentrated in urban areas. Thus, the government needs to make conscientious efforts to foster MHNGOs in underserved rural areas where they can play a major role. To summarize, MHNGOs are undoubtedly required and have to be nurtured under appropriate regulations.
Future Directions
MHNGOs are a boon to society as they facilitate care and advocacy by adopting a holistic and bio-psycho-social model of illness and disability. They can facilitate recovery and reconceptualization of goals as one starts convalescing from the illness. MHNGOs, especially in context to the Indian society, act as pathways to care and treatment. In the background of a collectivistic society, these organizations are often bereft of the stigma attached to consulting a psychiatric facility, especially for common mental disorders. The “worried well” population, lying between severe recalcitrant mental illness and normalcy, may have the maximum to gain from MHNGOs, because they might not be able to reach specialist care. Programs such as lay counselor training and gatekeeper training may further embolden these underutilized organizations. The new MHCA fathoms a more community-level approach to mental illness, focusing on unburdening the load on tertiary care centers in the background of the huge treatment gap. According to ancient Indian belief, Dava (medicine) and Dua (prayers) together cure problems faster. Following the incident in Erwadi, Tamil Nadu, in 2001, where 25 mentally challenged people were charred to death as they could not escape the fire because they were chained, it was mandated to care for the mentally ill person and to ensure treatment and rehabilitation. On this background emerged the concept of “Dava and Dua,” that is, to provide modern scientific mental health services along with traditional faith healing to such people. The program is being run by the MHNGO Altruist in collaboration with the government and is funded by the Gujarat government.27,28 Integration of traditional Indian practices like yoga, along with modern practices, should be proactively encouraged in the future by the government and should serve as blueprints for MHNGOs. This would ensure better acceptance and adherence to treatment.
Conclusion
The role of NGOs in mental health has been substantial and shall be unified further. The full implementation of MHCA might lead to a more poignant role for MHNGOs in mental health care in the following decade. Concerted efforts can overcome the huge treatment gap and the problems related to lack of resources. Recognition of MHNGOs by law and policymakers will help bring about the necessary systemic-level changes. This can foster and hasten the strengthening of NGOs in terms of identification as MHEs, the involvement at a policy-level systematic evaluation of effects on mental health, and the reducing of impediments to health-seeking and help-giving. Thus, NGOs are no more an accessory but a necessity for the government to deliver mental health care, and thus, they need to be nurtured to utilize their full potential.
Footnotes
Acknowledgements
We acknowledge all the MHNGOs that are working for the welfare of people with mental illnesses and safeguarding of their rights, names of many such MHNGOs doing exemplary work may have been inadvertently missed and the authors are cognizant of the same.
Declaration of Conflicting Interests
The authors have no potential conflicts of interest to declare with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.