According to the World Health Organisation, more than one billion people in the world currently experience disability, of which approximately 200 million experience considerable disability in functioning. Such people typically suffer from poor health, lower educational achievements, limited economic opportunities and higher rates of poverty. Hence, initiatives undertaken to improve the lives of people with disabilities, through progressive legislations and/or policies by different local governments and NGOs, are relevant to all corners of the world.
The UN Convention on the Rights of Persons with Disabilities (the “Convention”) was adopted during the sixty-first session of the General Assembly on December 13, 2006, and came into force on May 3, 2008. The objective of the Convention was to promote, protect and ensure the enjoyment of all human rights and fundamental freedoms by persons with disabilities, and to promote respect for their inherent dignity. As per the Convention, persons with disabilities are essentially those who have long-term physical, mental, intellectual or sensory impairments, which hinder their full and effective participation in society on an equal basis with others.
India was amongst the first to have ratified the Convention in the year 2007 itself, while most others including United Kingdom of Great Britain (‘UK’), France and Ukraine ratified the Convention during subsequent years.
Main Concerns faced by Persons with Disability in India
- Disability as a reason for discrimination and denial of reasonable accommodation;
- Lack of education opportunities both at the primary and higher levels and lack of support in the education system;
- Lack of skill development interfaced with market requirements, employment and livelihood opportunities, discrimination in promotions and emoluments;
- Lack of access in the built infrastructure, transport sector, services and products, communication and documentation;
- Denial of access to most Civil and Political rights
- Marginalisation and discrimination faced by women with disabilities
There are four legislations that cover the environment of persons with disability in India, of which two have been replaced by new versions.
I: RPWD Act of 2016
By ratifying the UNCRPD in 2007, India took on a set of obligations to transform the treatment of PwD from being objects of charity to subjects with rights who can claim those rights. The RPWD Act, 2016 is a rights-based legislation, replacing the Persons with Disabilities (Equal Opportunity Protection of Rights and Full Participation) Act, 1995 (the ‘previous Act’), which covered only seven disabilities. The New Act covers more than 15 disabilities including dwarfism, acid attack victims, and specific learning disability. It defines a ‘person with disability’ as someone with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders his / her full and effective participation in society equally with others. This definition under the New Act has been formulated using the text included in Article 1 of the Convention.
Under the New Act, persons with at least 40% of a disability (referred to as “persons with benchmark disability”) are entitled to certain benefits. One such benefit is that at least 4% of the total number of vacancies in Indian Government establishments in specified categories (and 1% in certain others) are required to be reserved for their employment.
Obligations on private establishments in India: While Indian private establishments are exempt from reserving jobs for persons with disabilities, the New Act requires them to adhere to a slew of obligations. The term ‘private establishment’ has been very widely defined to include a company, firm, factory or such other establishment. This would include the Indian presence of any foreign company, be it a liaison office, branch, subsidiary or a joint venture. The New Act makes it unlawful for an establishment to discriminate against a person on the ground of his or her disability unless it can be proved that the discriminating act in question is a proportionate means to a legitimate objective. The Rules make the “head” of the establishment responsible for ensuring that this provision of the New Act is not misused to the detriment of disabled persons.
The New Act requires establishments to prepare and publish an Equal Opportunity Policy (the “EOP”) for persons with disabilities. The EOP must inter alia contain: (a) details regarding amenities and facilities put in place for persons with disabilities; (b) lists of posts identified for such persons; and (c) details of training, promotion, allotment of accommodation and provision of assistive devices and barrier free accessibility for such persons. Furthermore, establishments are required to maintain records relating to persons with disabilities enumerating the following:
- the number of disabled persons employed and the date of commencement of their employment;
- the name, gender and address of employee(s)with disabilities;
- the type of disability that such employee(s) are
- the nature of work being performed by such employee(s); and
- the type of facilities being provided to the disabled employee(s).
The Rules prescribe adherence to standards concerning physical environment, transport and information and communication technology applicable to disabled employees.
Complaints and Penalties: The Rules also lay down the procedure for dealing with complaints relating to discrimination. Complaints about exploitation of persons with a disability can be made to the Executive Magistrate and the local police. Violation of any provision of the New Act invites fines and penalties and in certain cases makes directors and senior officers of an establishment personally liable.
The New Act stipulates a monetary fine of Rs. 10,000/- for the first violation and fines between Rs. 50,000/- and Rs. 500,000/- for subsequent violations. If the violation is committed by a company, both the entity as well as the person(s) responsible for the conduct of the business of the company would be liable. Directors, officers and managers of a company would be individually liable if it is established that the violation was committed with their consent, or is attributable to their negligence.
Failure by an establishment to provide required information, documents or records (as required under the Act) is an offence under the New Act. The monetary fine provided for each such offence by an organisation is Rs. 25,000/-. An additional fine of Rs.1,000/- would be applicable for each continuing day of such failure or refusal, as the case may be.
The Act also imposes criminal liability on anyone who within public view insults or intimidates a disabled person with the intention of humiliating such person. This would also apply to such actions within a workplace. The punishment provided for such an offence is imprisonment for a term between 6 months to 5 years and fine.
Prosecutions for offences under the New Act are triable by a Sessions Court which is required to be notified by State Governments for each district as a ‘Special Court’.
II: Mental Health Care Act, 2017
Though the MHA 1987 addressed some of the principles of the UNCRPD, it fell short of being fully compliant. The new Mental Health Care (MHC) Act 2017 eventually came into force from July 7, 2018 and redefinedmental illness “in accordance with nationally and internationally accepted medical standards (including the latest edition of the International Classification of Disease of the World Health Organisation) as may be notified by the Central Government.” Additionally, the Act asserts that no person or authority could classify an individual as a person with mental illness (PMI) unless it was in direct relation to treatment of the illness.
Advance Directive (AD): An adult with mental capacity can write a directive (as per rules) of how they wish to be cared for and not to be cared for. In addition, a nominated representative (NR) can be appointed irrespective of their past history of mental illness or treatment for mental illness.
Advance directives preserve the autonomy of psychiatry patients. They are not in conflict with each other but are complementary to each other. The MHA 2017 has paved the way to the autonomy of patients through advance directives and nominated representatives. With regard to the justice part of medical ethics, which predominantly deals with the fair distribution of medical facilities, AD’s role is limited because of extreme disparity in medical facilities based on affordability. Advance directives are a positive step toward upholding the rights of the mentally ill patient, and all hospitals or doctors dealing with psychiatric patients should encourage the patients to draft a proper advance directive.
Nominated Representative (NR): Psychiatric illness may cause burden to caregivers and in turn can affect the care of PMI. The MHC Act 2017 has given sections for support of PMI by way of NR. The NR can be a relative or caregiver, suitable person appointed by board, or person of organization registered under societies registration act and may be revoked by board. NR shall not be minor and has to give consent in writing to MHP. The NR can seek information of diagnosis and treatments, rehabilitation, planning discharge, application for admission, and give consent if required.
The Indian Psychiatric Society has highlighted that AD and NR are not patient friendly clauses. However, the 2017 Act provision on ADs and NRs attempted to align with the UNCRPD’s Article 12 – “equal recognition before the law.”
Unfortunately, the barriers to the implementation of ADs in India are poor literacy, limited access to information, insufficient knowledge regarding mental health, mental illness, treatment and management options, and lack of human resources.
Human Rights:There are sections in MHC act 2017 for PMI to have a dignified life, protection from cruel treatment, self-hygiene, privacy, proper clothing, pay for work, living in community, adequate food, no tonsuring, no force of uniforms, emergency and ambulance services, mobile, e-mail facilities, and free legal services. Insurance for mental disorders and treating the PMI according to International guidelines. There are provisions for not separating woman and child below 3 years of age and if separated for more than 30 days it should be approved by authority. This act has given significance for rights of PMI receiving inpatient treatment and grossly neglected the rights of PMI of community. Unemployment is reported to be significant in persons with mental disabilities, when compared to other disabilities, and this issue is not given importance in the 2017 Act.
The other measures include conducting programmes for suicide and stigma prevention. Measures for increasing human resources of mental health services were mentioned. Regarding confidentiality, information of PMI has to be made available only to NR and MHP and has to be protected from others except in threat to life.
Admission and Treatment: Voluntary admission as per the MHA 1987 is changed as independent admission (Section 86 of MHC act 2017 and Section 17 of 1987) and refers to admission of PMI who has the capacity to make MHC and treatment decisions or requires minimal support in making decision and has mental illness of severity requiring admission, likely to benefit or understand the nature and purpose of admission. Informed consent has to be taken.
In cases of PMI not able to understand the purpose or nature of treatment resulting in not accepting the treatment and also unable to take care himself, violent, then the PMI has to be admitted as supported admission (Section 89 of MHC act 2017 and Section 19 of MHA 1987) after application given by NR provided PMI shall not be readmitted within 7 days.
PMI who are wandering, not capable of taking care of self can be taken under protection by police officer and after informing NR they may produce before public health establishment (100 of MHC Act 2017, 23 of MHA 1987).
Emergency treatment: Medical treatment can be given for mental illness by registered medical practitioner to a PMI either at MHE or at community for a maximum period of 72 h with informed consent of NR to prevent any undesirable event. Electroconvulsive therapy (ECT) cannot be used as form of treatment in this section of emergency treatment.
Penalties: Fines for contravention of the rules range from imprisonment of 6 months/Rs 10,000 to 2 years/Rs 5,00,000.
In view of communication and travel difficulties, there are provisions for Northeastern states regarding relaxations for time frames.
Other changes include:
- Broadening the scope of mental health professional (MHP) to include psychiatrist, professionals having a postgraduate degree including Ayurveda in Mano Vigyan Avum Manas Roga or Homoeopathy in Psychiatry or Unani in Moalijat (Nafasiyatt) or Siddha in SirappuMaruthuvam, and also a professional registered with the concerned State Authority under Section 55 (clinical psychologists, mental health nurses [MHNs], and psychiatric social workers) making them eligible for assessing mental capacity and eventually for admitting them as inpatient in independent admissions.
- Expanding the ambit of the Mental health establishment (MHE) to include all health establishments that provide care for PMI.
- MHPs practicing at outpatient services or establishments without registration, have to follow some of the sections of the Act like, advance directive (AD), aspects of confidentiality, rights to access basic medical records by patients, and provisions of treatment procedures such as electroconvulsive therapy (ECT), psychosurgery, seclusion, and emergency treatment.
Other legislations
The other two legislations, namely, The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999; and the Rehabilitation Council of India Act, 1992 remain unchanged.
Extracted from:
UNCRPD. United Nations Convention on the Rights of Persons with Disabilities 2006. Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.
Kochhar R, Lysyk D, Carney B, Sfeir F, Gonzalez-Schiaffino A. Rights of Persons with Disabilities in India and Other Jurisdictions: France, India, Mexico, Ukraine, United Kingdom; Legally India Spring 2018 Digital Print Issue.
Math SB, Gowda GS, Basavaraju V, Manjunatha N, Kumar CN, Philip S, Gowda M. The rights of persons with disability act, 2016: Challenges and opportunities. Indian J Psychiatry 2019;61, Suppl S4:809-15. Available from: http://www.indianjpsychiatry.org/text.asp?2019/61/10/809/255557
Philip S, Rangarajan SK, Moirangthem S, Kumar CN, Gowda MR, Gowda GS, Math SB. Advance directives and nominated representatives: A critique. Indian J Psychiatry 2019;61, Suppl S4:680-5
Reddy Avula VC. Autonomy and advance directives in psychiatry patients in India – Mental Healthcare Act 2017 perspective. Arch Ment Health 2020;21:1-3