Giving back control: What Mental Health Care Bill, 2013 means for the mentally ill

By Asif Kalam

What might it mean for people who live with mental illnesses to be given control over how they will receive medical care? The Rajya Sabha recently passed the Mental Health Care Bill, 2013, which aims to safeguard the rights of people with mental illnesses. It prioritises choices made by patients, and replaces the archaic Mental Health Act, 1987. One of the Bill’s significant new provisions is the Advance Directive, which allows persons living with mental illness to create a document with instructions on how they must be treated and cared for in the event that they are incapacitated by an episode of illness.

The Bill also allows individuals to nominate a representative to take treatment decisions on their behalf if required. Mental Health Review Boards (MHRBs), quasi-judicial bodies that will be set up in every district, will be entrusted with the certification, custody, review, and arbitration of Advance Directives.

Representational image. AFP

"Part of the terror of mental illness is losing control over your mind, and knowing that you will probably lose even more as you grow older,” says Sneha, a 30-year-old writer based in Bangalore, who is bipolar. “To be able to write advance instructions for one’s treatment helps give back some of that control," she adds, when asked about what it might mean for her to be able to make these decisions for oneself. Manisha*, a 26-year-old writer who lives with borderline personality disorder, seems to echo this when she says, “Having a treatment plan in place — even if it’s as simple as a document stating whom to call, what I do not consent to under any circumstances, whom to treat as my next of kin, what my psychiatric and psychopharmacological history is, who my doctors are — would be a level of visibility and explicitness I’d be grateful for.”

Both Sneha and Manisha say that they are willing to go through the process of paperwork to get these Advance Directive documents in place. This is despite how long the process sounds — they both insist that it is important that the directive allows them to maintain control over their treatment. Manisha says she would do it despite not being clear on how the logistics of such a plan would come together. Sneha also mentions that she is willing to and will need to keep updating it, based on the new developments that take place in her illness, its treatment, and her own world view.

Stakeholders we spoke to were in broad agreement that the Bill seems to be a step forward. It has finally decriminalised attempts to commit suicide, and mandates that governments provide affordable, quality, geographically accessible mental healthcare. Vandana Gopikumar, co-founder of Banyan, a mental health NGO for women, sounded hopeful when she said, “I’m happy that the Bill takes into account the large service gap and mandates access to care as a right. This will address the needs of many who live in low resource contexts, who today have to travel long distances to access care, or often forgo treatment in the absence of a functional health and social care system.”

But while the Advance Directive is seen as greatly significant in recognising the autonomy of people for their treatment and care, some policy experts and rights groups are sceptical. Section 11 of the Bill allows doctors and relatives of a person to approach the Mental Health Review Board (MHRB) to revoke or modify the Advance Directive under certain grounds.

Jayna Kothari, lawyer and co-founder of the Centre for Law and Policy Research, argues that the power of Advance Directive is seriously undermined by Section 11. She says, "On one hand the whole provision is to give people with mental illness the right to autonomy and to recognise that they have capacity to take decisions for their own lives. If those decisions that they have made for themselves can be challenged, then you are basically saying that you can make a decision that we can revoke because we know better.”

The grounds on which other parties can challenge an Advance Directive include considerations of whether the person was well-informed, and had the capacity to take the decision. Manisha says, “No matter how distressed or incapacitated I might be at a particular time, I — and the people I trust — know what’s likely to help me and what’s definitely likely to make it worse.”
Kothari argues that in the case of patients who require treatment for other non-mental-health related illnesses, there is no such provision to challenge their decisions, so why is there a lack of patient autonomy in mental health care? “You don’t even raise these grounds for people in non-mental-health situations,” she says.

When asked how she would react if she learnt that her Advance Directive had been overturned, Manisha says, “I’d be unsurprised but bitterly angry. It’s a question of autonomy and self-determination. In some cases this sense of autonomy and self-determination is hard-won. I’d be shattered to realise that having a mental illness somehow translates to my ownership of my life not mattering.”

*Name changed on request.

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Finding love in an ableist world | Latest News & Updates at Daily News & Analysis

Gargi Gupta

In a society where the dice is heavily loaded against them, the differently-abled find that the insensitivity and ignorance they battle daily get amplified when it comes to romance and marriage. Gargi Gupta gets a sense of the challenges they face and how they cope

Preeti Monga was just six years old when she lost her vision. What followed next is a story more or less common to most differently-abled people in India – or used to be back in the 1960s, when Monga was growing up in Amritsar. She was chucked out of school in class VIII, and married off at 23 – "’Arrey, hamare baad koi toh ho isko dekhne wala (There should at least be someone to look after her after us),’ my parents thought," says Monga.

Except that it didn’t happen that way; her husband turned out to be abusive and a compulsive liar. That would have stumped many a woman, especially a visually-challenged one with two children. Not Monga. She got back to school, sat for the class X board exams via open school, learnt aerobics and started her own classes. Then, after becoming economically self-reliant, she filed for a divorce. "But I didn’t want to spend my life alone. I wanted romance, I wanted a partner," she says with disarming candour. And so, she proposed to a colleague she liked. Monga, at the time, was sales manager with a pickle brand. "He was ten years younger and said no. So I asked him again and again every day for 22 days until he said yes," she laughs. "When you want something, you should be ready to go for it. There’s nothing to feel shy about."

Preeti and Ashwini completed two decades of marriage this September.

It’s a heart-warming story, but Ashwini Monga is an exception in a country where the differently-abled battle staggering degrees of insensitivity and ignorance, attitudes that get amplified manifold when they seek a partner, someone to fall in love with, or marry.

More hurdles for women

Sweta Mantrii, a 29-year old freelance writer, editor and documentary filmmaker in Pune who has spina bifida, a condition where the vertebral column bones do not cover the spinal cord entirely. Mantrii studied in a regular school, has an MBA in communications management from a reputed private institute, worked and lived by herself in Mumbai for a year before coming back and has many friends, male and female. Yet, six years ago, a distant relative, presumably invited by her parents to help in their search for a groom for Mantrii, asked her to "Show me how you walk".

That was about six years ago, and her parents are still at it. Mantrii isn’t against marriage; she would like, like many girls her age, a partner, home, love, companionship. But it’s been a difficult quest marred by rejections and jolts to her self-esteem. Families of prospective grooms, says Mantrii, have "implied" to her parents that they expected a financial incentive in exchange for marriage.

"The problem is our social conditioning. Even men with disabilities expect to marry an able-bodied woman," says Versha Kewalramani, 29, a corporate lawyer in Mumbai who has a rare skin condition called epidermolysis bullosa, characterised by skin blisters. Kewalramani speaks of a gendered bias in marriage prospects of the physically-challenged. "While a man, if educated with a well-paying job, expects to marry an able woman, a woman is expected to only marry someone with a disability," she says. Kewalramani, by her own confession, has a "liberal, well-to-do" background, grew up in cosmopolitan Mumbai, went to a regular school and has a mother who pushed her to go out, travel the world, get a career and be independent. She’s just broken up with an able-bodied man she’d dated for a few months. This was her second boyfriend – her first had been a differently-abled man with whom, too, she broke up after a few months. "We found that we our personalities didn’t match," she says.

Romantic liaisons such as Kewalramani’s, with or without marriage in mind, may be fairly common especially among white-collar professionals in cities, but it is practically unthinkable for the differently-abled. As Mantrii found to her cost, her able-bodied male friends were fine with friendship, but were hesitant when it came to romance.

For those from somewhat conservative backgrounds, it’s often their own inhibitions that get in the way. "Unfortunately, most differently-abled people have a poor sense of dignity and self-worth, which gets in the way of finding happiness with a partner. And it’s the parents themselves who are responsible for not giving them a sense of self-confidence. Disabled members of a family are often not invited to come out and interact with visitors – as if they are a shame on the family," says Monga, who also counsels the differently-abled, including couples. "If their own families don’t give them confidence, then how do you expect them to overcome their inhibitions and take a chance with happiness?"

Neha*, a 29-year-old accountant with a real-estate firm, exemplifies such diffidence. Polio-affected and wheelchair-bound, she is apprehensive about marriage. "At home, I have everything to cater to my needs. My family is sensitive and cares for me. I am independent. I don’t know whether another person or family can be as sensitive to my problems. I’d rather be unmarried than find myself in an unhappy relationship. I am lucky my parents agree with me about this," she says.

Women with disabilities may have the dice loaded heavily against them, but men also face constraints when contemplating marriage or finding a partner. Forty-one-year old Ankur Dhir, who runs a small stationery business in Delhi and suffers from muscular dystrophy, says the thought of marriage has until recently been far from his mind. "It’s not just my disability. I first need to earn enough to support a wife and family before thinking of such things," he says. "It was hard because my parents died when I was young and I had little support. It’s only in the last two years that I feel I have the income and a household to offer a partner."

Blame it on the infrastructure

Others like Jatin Agarwal*, a software consultant in a Gurgaon MNC, want a partner who understands them and share the same values. "I’d like to get married to a differently-abled girl because I feel only someone who is differently-abled herself can understand me. But I also would like someone who is educated and independent and will fit in with my family," says Agarwal, who’s registered on several matrimonial sites in his search for a bride.

"The problem, even in cities, is that there are so few places where the physically-disabled can meet and interact," says Kalyani Khona, co-founder of Inclov, a matchmaking app for the differently-abled and people with long-term illnesses. Inclov launched early this year and runs an off-line initiative, Social Spaces, where the differently-abled who’ve registered on Inclov can meet. Khona, just 23 years old, points to her own difficulties in finding a public space with requisite accessibility facilities for the event: "How many restaurants in the city have ramps and toilet facilities for the disabled, or passageways wide enough for wheelchairs? In a place like Delhi, there are just one or two like that."

The discourse on the differently-abled, says Preeti Monga, has until now been largely limited to inclusive schools and colleges and making sure they find employment. "These are important, but more important, I feel, are avenues for social networking. After all, what’s the point if you don’t have friends or a family to come home to?" she asks.

It is needs like these that Inclov are helping to meet. In just nine months, the app has notched up 4,000 registered members and brought about one marriage. Monga herself runs a similar initiative called Fusion, which brings together the differently-abled and able-bodied so they can network for jobs or romance.

These are, as yet, isolated and periodic efforts. Inclov has had six such meet-ups in Delhi, Mumbai, Chennai and Bangalore, while Fusion meets have been held only in Delhi until now. But both Khona and Preeti Monga recognise the initiative needs to reach into small town India to be really effective. Inclov, for one, instituted an "ambassador" programme under which it will support anyone who volunteers to organise a Social Spaces meet-up. Monga, meanwhile, is trying to get the Rotary Club, with its wide network, to support Fusion so the differently-abled can take part in their meetings.

The idea is to get the differently-abled out and about, interacting with those like themselves and others, gaining in confidence. Marriage or romance can follow.

(*Names changed on request)

| Sun, 4 Sep 2016-06:35am , Mumbai , dna

The Mental Health Care Bill, which sees mental health care only as a repair job, fails to recognise the value of psycho-neural diversity.

THE HINDU ARCHIVES During a tug-of-war contest in a mental hospital in Kerala, a file picture. It is important that all persons with mental disability are treated as autonomous persons worthy of respect.

By AMITA DHANDA

IN his classic study on famines, Amartya Sen contended that avoidance of famines did not just require food stocks but also the freedom to raise one’s voice against dwindling stocks. To prove the point, Sen referred to China, where people died of starvation just kilometres from well-stocked granaries because they did not have the freedom to speak of their piteous condition. Sen was arguing for the indivisibility of rights and contending that people could not be asked to choose between food and freedom, and that they needed both as the absence of one could result in the loss of the other. Despite Sen’s highly persuasive reasoning, it is often believed that freedoms are the luxuries of the endowed and there is no point in offering a choice to the deprived as it is obvious what they would choose. Material goods and facilities are not accorded greater importance only when issues of hunger and starvation are discussed. They are also seen to be critical for other survival needs. It is often claimed, not just in India, that in order to promote mental health, the development of infrastructure, personnel and services should be given greater importance than the will and preference of the persons receiving the services; that questions of choice and preference can be addressed after a robust system of mental health care has been established.

The piteous condition of the inmates of Berhampore Mental Hospital and the unanimous passage of the Mental Health Care Bill, 2013, by the Rajya Sabha were two pieces of news that were widely reported recently. This simultaneous surfacing of the problem and the solution causes one to ask, will the new mental health care law improve the life chances of those abandoned in these obsolete institutions? Does the Mental Health Care Bill have an exit plan for the inmates of these hospitals? Does it ensure that such institutions will be phased out?

The Bill starts on an ambitious note, promising every person the right to access mental health care and treatment from mental health services run or funded by the government. This mental health care has to be affordable, of good quality, plentiful, available to all without discrimination and, most significantly, “provided in a manner that is acceptable to persons with mental illness and their families and caregivers”. If for a moment it is presumed that the person with mental illness, the family and the caregivers have identical expectations from mental health care, this generic phrase has the potential to forge a link between services and choice. Unfortunately, this has not happened and instead the Bill has proceeded in the opposite direction.

The Bill allows a person, who so desires, to formulate in advance a direction to the doctors on permissible treatment and the manner in which it may be administered. Considering that the legislation makes patient preference in the manner of providing mental health care a right, it would be expected that the honouring of advance directives would be an article of faith. Instead, the Bill designs both the making of the advance directive and its subsequent implementation an obstacle race for the maker. Successful completion of the race does not ensure that the doctors and the family are obliged to obey the directive; both the doctors and the family can bypass the directive by following the procedure provided in the Bill. The discomfiture with following patient preference also comes to the fore when the doctors are exonerated from any liability, which may arise if they follow the patient’s advance directive.

In a similar fashion, the facility to appoint a nominated representative has been converted from a right of the patient to a power of the state. Thus where the patient does not nominate a representative, the statutorily designated list takes over. This is like asking a student to choose her working partner and as she is weighing her choices, a partner is provided and the teacher believes the student was provided an opportunity to choose.

As already mentioned, there was a possibility to construct the mental health care system premised on the preferences of persons living with mental illness. This required policymakers to accord respect to the choices made by them. Yet, the legislation only refers to drugs and treatments devised in allopathy and other systems of medicine such as Ayurveda, Unani, and homeopathy and yoga. No reference is made to the recovery interventions devised by persons with psychosocial disability, be it peer support, open dialogue, family therapy or culture-based interventions such as faith and temple healing, which even the mental health programmes of the country have admitted to provide relief to some persons with psychosocial disability. The Bill does not bar these preferences; but neither does it permit them. And users relying on these services cannot be sure of their choices being respected as the Bill requires persons with mental illness, unlike the rest of the populace, to prove they possess legal capacity. Just the presence of mental illness does not mean that the persons lack legal capacity, but the presence of mental illness is sufficient to question the legal capacity to make contemporary choices or issue advance directives.

So when the Bill refers to an essential drug list or state-of-the-art treatment facilities and medical insurance on an equal basis with persons with physical illness, it is primarily referring to the biomedical interventions provided by allopathy. For other medical systems, the Bill concedes inclusion in the essential drugs list if they have any drugs. Non-drug interventions which are being preferred by a number of people with psychosocial disability have just been ignored. If an ambulance or other means of swift and safe travel is provided to take an individual for the medical or other intervention they desire, then the ambulance service is perceived as support, but if the service is provided to transport an individual to a service they detest, then the home service would be seen as arrest and abduction. If a person with physical illness is provided an emergency treatment and he or she wishes to discontinue it after the emergency is over, they are free to do so. The same freedom is not available to persons with mental illness and this situation has not been remedied by the Bill.

CRPD and the Bill

This is the case even when the Bill is being enacted in order to bring the mental health law in the country in consonance with the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which was adopted by the world body in 2006 and ratified by India in 2007. Equality and non-discrimination is the centrepiece of the Convention and the full inclusion of persons with disabilities within the polity its overarching objective. Singling out persons with mental disability for legal capacity questioning and allowing such disability to be a criterion in procedures ordering compulsory institutionalisation are provisions that are in breach of the equality mandate of the CRPD. In acknowledgement of the fact that the perceptions of the non-disabled world do not match with the lived experience of persons with disabilities, the CRPD was drafted with the active participation of persons with disabilities. Absence of persons with disabilities could cause prejudice to resurface and stereotype to rule. To avoid this consequence, the CRPD expressly obligated the states to make all laws and policies relating to disability in active consultation with disabled persons and their organisations. The two-member team that drafted the Bill as also the Standing Committee for Parliament consulted disabled persons and their organisations and did introduce some amendments in the 2013 Bill on the strength of those representations. However, all submissions asking for recognition of will and preference, ouster of compulsory care and guardianship have been ignored.

What is the consequence of this selective engagement? The Bill makes some commitment in relation to services, essential medicines, and non-discriminatory medical insurance, but these services and medicines are not linked to actual preferences of persons with disabilities but what professionals and practitioners consider suitable. People with disabilities whose preferences are in line with what the professionals suggest stand to gain; others are left in the cold or made to accept whatever is on offer. Nobody asks whether recovery can result from such forced interventions. During the negotiations, persons with mental disabilities testified before the Ad Hoc Committee of the United Nations on how the humiliation of the forced intervention prevented them from seeking any treatment from the formal system.

If force and compulsion closes communication and drives persons into isolation, then is there not a case to legislate dialogue and negotiation?

The Bill has several provisions addressing the rights to liberty, expression, information and the right to legal capacity. However, these provisions primarily provide for procedures by which these rights may be deprived or curtailed. The legislation does not speak of means and methods by which these rights can be promoted, respected and realised. If this effort is not made, then can it be claimed that the Bill upholds the CRPD when the CRPD states that in no case shall a person with disability be deprived of liberty by reason of disability?

The quality of services is known to improve when the users of the service are empowered persons whose voices would be heard. Inmates of institutions, who have the highest stake in improving the quality of services, can do little in the matter as they enter the service voiceless and powerless. Lawmakers are concerned with wrongful admission, and they do not want institutions to be used if services that impose lesser restrictions on inmates are available. And yet there is no obligation to create such institutions. And the responsibility for ensuring that nobody obtains wrongful admission is placed on a Mental Health Review Commission, courts and legal aid. These are all review mechanisms external to the institution, and the Bill has no inbuilt correction mechanism. It has not built alliances with the natural watchdogs of any institution—the inmates themselves.

To go back to the question raised at the beginning of this piece, will the new law help the inmates of the Berhampore Mental Hospital? Despite all the additional resources the Bill promises to pour into the sector, the answer remains a reluctant no. For the inmates of the Berhampore hospital to have a better deal, it was important that all those with mental disability were treated as autonomous persons worthy of respect. If even one person can be forcibly treated or projected as dangerous or incompetent, then all overt, covert and hibernating persons with disabilities can be so treated. By not recognising this reality, the Mental Health Care Bill has failed to create a regime of universal mental health care.

The legislation has not looked at freedom and services as one indivisible whole, and thus services are being created not according to what persons with disabilities want and need but according to what the experts in the field believe they need. The decade of the brain tried to prove that “mental illness” was just a biomedical aberration. It failed. The descriptor “psychosocial disability” on the other hand captured the idea of a differently wired mind which is excluded by social norms, practices and beliefs. The biomedical approach towards mental diversity is concerned with fixing the individual, whereas the psychosocial is geared towards acceptance. Evidently, a robust mental health care law and policy require both. The Bill, in only seeing mental health care as a repair job, has failed to recognise the value of psycho-neural diversity.

With the Bill having such a smooth ride in the Upper House, its passage in the Lok Sabha is assured. However, just because the Lok Sabha has the numbers to enact the Bill is no reason to do so. A psychiatrist colleague has referred to the Bill as a work in progress. I agree. My only submission is to let the progress in the Bill happen when it is debated in the Lok Sabha and not a decade later. There are possibilities of transformation in the Bill, and I hope that those possibilities are seized by the House of the persons so that the most excluded members of the polity get their just due.

Amita Dhanda is professor of Law and Head, Centre for Disability Studies, at NALSAR University of Law, Hyderabad.