Summary and Key Recommendations
The nurses would make us have the medications in front of them. If I complained that there were too many tablets, the nurse would sometimes forcefully put the pills in my mouth and stroke my throat to send them down, the way I feed my dogs…I woke up one night and I couldn’t move; my body was in intense physical pain. A nurse came and jabbed an injection into my body, without even taking off my clothes. You are treated worse than animals; it’s an alternate reality.
— Deepali, a 46-year-old woman with a perceived psychosocial disability, Delhi, August 25, 2013.
I feel suffocated here. I don’t like it here, it’s a hospital. Will you take me home with you?
—Priya, a 22-year-old woman with an intellectual disability institutionalized against her will, to a Human Rights Watch researcher, June 13, 2013.
Vidya, a 45-year-old woman was alone at home in Mumbai one night a few years ago when three people knocked on her door. Posing as government health workers conducting vaccinations in the area, they ignored her attempts to resist them, sedated her, and took her away. The next morning, she awoke in a private mental hospital, where she was forced to stay against her will for over a month with virtually no contact with her family or friends and medicated against her will. Without her consent or knowledge, she was also forced to endure electricity passing through her brain in order to induce seizures, a process known as electroconvulsive therapy (ECT). “I was like a vegetable,” she said. “It was only many years later that I found out that I was being given ECT.”
Vidya is perceived as having a psychosocial disability, or mental health condition. She later discovered that her husband had institutionalized her, which he was able to do under the terms of the Mental Health Act without the need for a court order. Even after she was discharged from the mental hospital, her husband continued to take her to a local private clinic where she received electroconvulsive therapy under anesthesia without her knowledge or consent. Vidya claims that her husband wanted to label her as “insane” to be able to get a divorce without paying alimony. Her mother finally managed to get her discharged from the hospital over a month later.
Based on research in Delhi, Mumbai, Pune, Kolkata, Bengaluru, and Mysore, this report focuses on abuses against women and girls with psychosocial or intellectual disabilities in India. Between December 2012 and November 2014, Human Rights Watch visited 24 mental hospitals and state residential care facilities and interviewed over 200 women and girls with psychosocial or intellectual disabilities, their families, caretakers, mental health professionals, service providers, government officials, and members of the police.
While men and boys with psychosocial or intellectual disabilities also face abuses, this report focuses on documenting the experience of women and girls with these disabilities since they are particularly marginalized because of their gender and are especially vulnerable to unique forms of neglect and abuse.
The 2011 Census data estimates that only 2.21 percent of the Indian population has a disability – including 1.5 million people with intellectual disabilities and a mere 722,826 people with psychosocial disabilities. However, the Indian Ministry of Health and Family Welfare claims over 6-7 percent of the population has psychosocial disabilities alone.Yet just 0.06 percent of India’s federal health budget is devoted to mental health and available data suggests that state spending is similarly negligible.
Human Rights Watch found that stigma, the dearth of appropriate government community-based services, and a lack of awareness about disability and available services among family members and individuals with disabilities make those with psychosocial or intellectual disabilities especially vulnerable to institutionalization.
The prevalent mindset is that people with disabilities, particularly women and especially those with intellectual or psychosocial disabilities, are incapable, weak, and lack the capacity to make any meaningful decisions about their lives. Institutions to which they are sent are overcrowded and poorly managed: all women and girls with psychosocial or intellectual disabilities currently or formerly living in institutions interviewed by Human Rights Watch experienced forced institutionalization; most faced a range of abuses in institutional care, including neglect, physical or verbal abuse, and involuntary treatment.
For instance, Deepali, a 46-year-old mother of four, told Human Rights Watch that her family institutionalized her against her will in 2012, after she had a fight with her husband and eldest child— despite her medical file and a letter from her treating psychiatrist stating she did not have bipolar disorder and did not need medication or hospitalization.
Two bills currently before parliament, the Mental Health Bill and the Rights of Persons with Disabilities Bill, do not fully guarantee the rights of women with psychosocial or intellectual disabilities. Instead, they perpetuate institution-based care instead of shifting to a community-based model of services and support mandated by the disability rights treaty.
The government should ensure that the bills protect the rights of women and girls with psychosocial or intellectual disabilities and promote adequate and accessible voluntary community-based services, in full compliance with the Convention on the Rights of Persons with Disabilities (CRPD), which India ratified in 2007.
Lack of Government Services and Support
Human Rights Watch found that there is a severe shortage of accessible and appropriate government services for women with psychosocial or intellectual disabilities and their families. Although women and girls with disabilities are technically included in healthcare, education, rehabilitation, and employment schemes that the government provides for all women and children, in reality they often lack meaningful access. There is also a gap in services, particularly gender-sensitive health care, geared towards supporting women and girls with psychosocial or intellectual disabilities in their daily lives.
India’s public health system faces an acute shortage in human resources, a fact reflected in the mental health sector. There are 43 state-run mental hospitals and three psychiatrists and 0.47 psychologists per million people in India. Although a number of private institutions have mushroomed across the country, they do not always have legal registration and are not adequately monitored.
The dearth of mental health services is particularly striking in rural areas where 72 percent of the population lives but only 25 percent of the health infrastructure is located, resulting in a severe treatment gap. Although the government launched the National Mental Health Programme in 1982 to provide community-based services, its reach is limited and implementation is seriously flawed in the absence of monitoring mechanisms. The District Mental Health Programme is only present in 123 of India’s 650 districts and faces a number of issues including lack of accessibility, manpower, integration with primary healthcare services, and lack of standardized training.
In October 2014, the Indian Ministry of Health unveiled its first ever mental health policy which sets as its primary goal to reduce the treatment gap by providing universal access to mental health care through increased funding and human resources. The policy draws attention to the paucity of mental health services and data on mental health in India and the stigma, marginalization, abandonment and discrimination that people with psychosocial disabilities face.
The policy includes important provisions on amending or replacing discriminatory laws or policies, providing wide-ranging support for families or caregivers and creating assisted living services. Despite several references to community-based services, the policy does not include an explicit call for de-institutionalization nor a shift from institutional to community-based care.
The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities provides multiple schemes and services, including health insurance, for persons with developmental or intellectual disabilities, but its scope and reach are limited. As a result, families lack awareness and support in their day-to-day lives. Unable to cope with caring for a relative with a psychosocial or intellectual disability, families often dump them in state mental hospitals or residential care institutions. Once in there, people with disabilities experience a range of abuses and even death.
Human Rights Watch interviewed 52 women and girls with psychosocial or intellectual disabilities who were in institutions at the time of the interview or formerly in institutions, all of whom were admitted without their consent. In several institutions visited, women and girls called out to Human Rights Watch researchers, “send me home” or “take me home with you.”
In 25 cases documented across five cities, Human Rights Watch found families had hidden or abandoned their female relatives in mental hospitals or residential facilities due to stigma and the lack of support services available to them. In the case of psychosocial disability, the Mental Health Act allows a family member or guardian to admit a relative to an institution without their consent or any judicial review.
The police also pick up women and girls with psychosocial or intellectual disabilities found wandering on the streets if they have reason to believe they are “dangerous” to themselves or others, or incapable of taking care of themselves.
The women are then admitted to these institutions through court orders with no real possibility of appeal. They are unable to leave the institution and can be kept there for life if no family member comes to take them home.
In one of cases, a woman who was declared “fit for discharge” in the 1990s was still in the institution as of August 2013 because of the lack of alternative settings for her.
Once in these closed institutional settings, women with psychosocial or intellectual disabilities have no say in what happens to them. Several Indian incapacity laws classify persons with psychosocial or intellectual disabilities as being of “unsound mind,” stripping them of their legal capacity—the right to give consent or make decisions about one’s life. Under the Mental Health Act, either a family member or guardian, including the head of a residential institution, is authorized to make decisions on their behalf.
A person with a psychosocial or intellectual disability may be deprived of the right to exercise legal capacity in India in three main ways: (1) if he or she is declared to be of “unsound mind” by a competent court; (2) if parents assume de facto guardianship following a medical diagnosis; or (3) upon a request made for guardianship to a committee set up by the Board of the National Trust, a body set up under the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999. Laws depriving legal capacity violate India’s obligations under the Convention on the Rights of Persons with Disabilities (CRPD), which grants legal capacity to all persons with disabilities on equal basis with others.
Conditions in Institutions
Once they are in institutions, women with psychosocial or intellectual disabilities face a range of abuses, including prolonged detention, unsanitary conditions, neglect, involuntary treatment and violence.
Four of the government institutions for people with intellectual or psychosocial disabilities that Human Rights Watch visited were exceptionally overcrowded, dirty and lacked adequate sanitation.
For example, as of November 2014, Asha Kiran or Avantika, a government institution for persons with intellectual disabilities in Delhi, is home to just under 900 people, nearly three times its capacity. At Pune Mental Hospital, Dr. Vilas Bhailume, the hospital’s superintendent, told Human Rights Watch that there were just 25 working toilets for more than 1,850 patients. “Open defecation is the norm,” he said. Researchers found that lice were rampant in most state-run institutions visited: during interviews at 10 government institutions, women and girls constantly pulled lice from their hair. Instead of providing medicated shampoos and improving hygiene, many women were forcibly shaved, further humiliating them. Ameena, a 40-year-old woman with schizophrenia described receiving soap just once a week, on a Friday. “We don’t even get towels. We brush our teeth with tooth powder using our fingers. We change clothes every two days and have to stay naked while the laundry is being done,” she said.
In three of the residential institutions visited, girls with psychosocial or intellectual disabilities were not given adequate access to education, even though India has passed the Right to Education Act that mandates free and compulsory education for all children between the ages of six and 14. Some girls with psychosocial or intellectual disabilities in two of these institutions attend non-formal education within the institution or at a local school. However, the curriculum is not adapted to their needs, limiting their learning.
As one member of the child welfare committee at an institution told Human Rights: “We send children to Asha Kiran with a very heavy heart because we know whatever skills and socialization—shaking hands, basic conversation and tasks—they have learned here will go [away] in a couple of weeks.”
Women with psychosocial or intellectual disabilities also do not have any meaningful activities to keep them engaged within institutions. Aparna, a woman with bipolar condition and epilepsy, told Human Rights Watch: “I have studied a little and can read a book if you give me one, but they don’t give books here. Nothing happens here. You wander around, eat, drink, sleep, that’s all.”
Forced Treatment and Denial of Adequate and Appropriate Healthcare
In many institutions that Human Rights Watch visited, women and girls with psychosocial or intellectual disabilities are routinely forced to take medication. The staff in these mental hospitals and residential care institutions openly shared with Human Rights Watch that they hold down women and girls with psychosocial disabilities or forcibly open their mouths to coerce them to comply with medication. If that fails to work, staff members told us that they routinely force-feed women food and drinks, such as bananas or tea, laced with medicines. Women can be given medication up to three times a day, but they may not even know it.
Human Rights Watch documented cases of 20 women and 11 girls who had undergone electroconvulsive therapy (ECT) without their consent. Some women, like Vidya, are not even informed that ECT is being administered. In a government hospital, a psychiatric nurse admitted that ECT was commonly used not only on violent and suicidal patients but also on new admissions who tend to be unmanageable. ECT is even used as a threat to coerce people to take their medicines or to scare them if they do not listen to staff. A nurse in a government mental hospital said:
They fear this (ECT). We say, ‘if you don’t take your medicine, we will take you to the ECT room’ and immediately they say, ‘please don’t take me to that room, I won’t do that again.’
In February 2013, the UN special rapporteur on torture called on all states to impose an absolute ban on forced electroconvulsive therapy.
Women and girls living in residential care institutions lack access to appropriate and adequate general healthcare. For even minor ailments, staff has to take women and girls with disabilities to the closest government hospital for treatment. And as a result of limited staff and vehicles, women or girls with disabilities requiring treatment in the institutions Human Rights Watch visited are often denied adequate medical care for days.
Even when women and girls with psychosocial or intellectual disabilities are taken to general hospitals for treatment, they are often low on the priority list. According to Dr. Sanjeev Jain, professor of psychiatry and former head of the department of psychiatry at the National Institute of Mental Health and Neurosciences (NIMHANS):
Most government hospitals refuse to admit ‘mentally ill’ people in ICU [Intensive Care Unit] care. They ask: ‘Why are you blocking a bed that could be put to better use?’ This year, one of our patients died. She was diagnosed with breast cancer two or three years ago so we took her to a government hospital. The doctor there said, ‘Please think if you would be adding anything to her life by giving her treatment.’
Violence and Exploitation
Human Rights Watch documented cases of women and girls who had faced physical, sexual and verbal abuse at the hands of caretakers in institutions, many of whom are not adequately trained. For example, staff use derogatory language such as “pagal” (mad) or “mentally retarded,” perpetuating the social stigma against these women and girls. In 12 of the 24 institutions visited, residents or staff exploited women and girls with psychosocial or intellectual disabilities, forcing them to cook, clean toilets, or bathe other women with more severe disabilities.
In the course of its visits to institutions, Human Rights Watch found 12 cases of verbal, 38 of physical, and four of sexual violence against women and girls with psychosocial or intellectual disabilities. While physical and verbal abuse is an everyday occurrence in every state-run institution and mental hospitals Human Rights Watch visited, sexual violence remains hidden as victims are less likely to talk about it.
A welfare officer at a residential care institution for women told Human Rights Watch:
Women have gone to [a hospital] for three months and have come back one month pregnant. It’s happened in a lot of cases but when the woman can’t say who got her pregnant, what can we do? We found out this because…the women undergo a check-up and mandatory urine pregnancy test [when they are re-admitted into the residential care facility].
Lack of Access to Justice
While access to justice continues to be a concern for many in India, particularly disadvantaged groups, women and girls with disabilities face unique barriers. Among the 128 cases of institutional abuse that Human Rights Watch documented, none of the women or girls had successfully filed a First Information Report (FIR) or accessed redress mechanisms for being institutionalized against their will or facing abuse within the institution. Most of the women and girls with psychosocial or intellectual disabilities interviewed were not even aware of mechanisms for redress.
One major factor that hinders their access to justice is dependency on caretakers. In the cases of the women and girls with intellectual or psychosocial disabilities documented by Human Rights Watch, many had been abused by family members or caretakers on whom they relied for financial or other support.
Women with psychosocial or intellectual disabilities told Human Rights Watch that they seldom report abuse against caretakers and fellow residents for fear of the repercussions. In the 24 institutions and hospitals Human Rights Watch visited in 2013, there were no adequate mechanisms to report abuse. The only existing mechanism in some institutions was to report abuse to the institution’s staff, which does not constitute an independent mechanism, as staff themselves may be perpetrators of the abuse.
The Way Forward
One key concern is the lack of adequate monitoring of both state-run and private mental hospitals and residential care institutions for women with psychosocial or intellectual disabilities. It is essential that State Mental Health Authorities as well as independent bodies such as the National Human Rights Commission regularly monitor residential care institutions as well as community-based services such as the District Mental Health Programme to ensure quality of care and informed consent. States that have passed the Clinical Establishments (Registration and Regulation) Act (2010) can also leverage it to regulate and monitor mental hospitals.
Despite India’s international obligations under the Convention on the Rights of Persons with Disabilities (CRPD), the rights of persons with psychosocial or intellectual disabilities, particularly women, continue to be restricted and violated. Under the treaty, this population has the right to access all services including education, health care, and rehabilitation on the same basis as others. The government is also required to provide access to the support they may need in exercising their legal capacity. However, India’s courts continue to appoint guardians to take decisions related to financial, legal, and health care matters without the free and informed consent of people with psychosocial or intellectual disabilities.
Human Rights Watch calls on the Indian government to amend the bills currently before parliament to ensure that they are in full compliance with the CRPD and protect the rights of women and girls with psychosocial or intellectual disabilities. The government should adopt policies and mechanisms to prevent and redress abuses against women and girls with psychosocial or intellectual disabilities in institutions and develop adequate and accessible voluntary community-based mental health and support services. International donors should work with the Indian government to fund programs and appropriate services and provide technical assistance to such community-based services.
As Dr. Jain, told Human Rights Watch:
Ultimately all the restrictions governing people who are not of sane mind need to go. They should be able to operate a bank account, get admission in college, have access to employment, be able to join the armed services, stand for election and even be the president of India. The government of India can’t have laws that discriminate.
To the Central Government
For Mental Health Facilities and Residential Care Institutions
Ensure the human rights of people with psychosocial or intellectual disabilities are respected by:
For Legal Reform and Policy Implementation
- Instead of using a medical definition of disability, take a rights-based approach using the CRPD definition of disability, which views disability as a result of the interaction between persons with impairments and attitudinal and environmental barriers that hamper their full participation in society.
- Recognize the legal capacity of all persons with disabilities on an equal basis with others and the right to exercise it. Remove clauses that allow for plenary or limited guardianship. Instead provide accommodations and access to support where necessary to exercise legal capacity.
- Ensure a twin-track approach with regard to inclusion of women and girls with disabilities in the bill; in addition to covering them under general clauses, provide special protections for them through dedicated articles.
- Include all persons with disabilities under the bill, including persons with psychosocial disabilities, instead of covering them under the mental health law.
- Recognize the legal capacity of all persons with disabilities on an equal basis with others and the right to exercise it. Remove clauses that allow for plenary or limited guardianship, “supported admission,” and a “competency test” which could result in treatment without informed consent of the person concerned. Instead provide accommodations and access to support where necessary to exercise legal capacity.
- Ensure that advance directives cannot be overruled by mental health professionals, caregivers, or family members. Ban all forms of involuntary treatment, including electroconvulsive therapy, without the person’s free and informed consent.
- Mandate a shift from institutional care to access to voluntary community-based mental health and other support services for people with psychosocial disabilities.
To State Governments
For Mental Health Facilities and Residential Care Institutions
- developing guidelines for sanitation, hygiene, and living conditions and prohibiting arbitrary detention without judicial review and involuntary electroconvulsive therapy;
- developing and implementing guidelines that prioritize making the institutional environment accessible and making medical forms, particularly consent forms, available in local languages and in easy-to-read formats;
- create an independent complaint mechanism that can receive and investigate complaints, including on a confidential basis, about ill-treatment of persons with psychosocial or intellectual disabilities in institutions;
To National and State Human Rights Commissions
To National and State Commissions for Women
To National and State Commissions for Protection of Child Rights
To International Donors, including the World Bank, Asian Development Bank, and Bilateral Government Donors
Continue reading this comprehensive report on HRW.org. The Human Rights Watch discusses in depth, with detailed analysis and reporting of the current conditions, and how these conditions can be lawfully corrected and improved.
Source: Kriti Sharma of Human Rights Watch.
Follow Kriti Sharma on Twitter: @ks7s