What are the rights of family carers in India?

Family is the 24X7 care provider. It is ridiculous to engage in big academic debates about rights of the family carers. More than 70% of mentally challenged patients live in their families. Hence unless the family base is strengthened, the care and rights of the mental patients are likely to be compromised irrespective of the national programs like the NMHP and DMHP launched by the Govt of India. Unfortunately, the rights of care givers are not clearly spelt out in the Indian Mental Health Act unlike that of UK or Australia. The first organization to publish a Code of Family Rights was the Schizophrenia Fellowship of New Zealand. "NR" or near relatives is the generic term used in UK law but in India, the Law has an implicit assumption of family members as "ENEMIES" rather than "ENABLERS". For example, the family has no right to identify or nominate a legal guardian. This is done by the District Courts as per Ch VI of the Mental Health Act. ( Visit MoHFW website of GOI for this Act). ACMI is actively fighting this misconception by seeking rights of family carers to be recognised in Law.

Generally speaking, the family must be legally allowed to exercise the following rights preferably in association with the patient whenever the latter's condition permits the same.

• The right to choose the Mental health Professional/s for the treatment.
• The right to participate in the treatment by seeking information on the diagnosis, medication/ side effects and allied information, and prognosis. This inevitably involves providing information about the patient.
• The right to participate on the need for admission, time of admission, discharge etc.
• The right to refuse a particular line of treatment or seek second opinion
• The right to ask for a Status Report about the patient.
• The right to be represented in all policy making forums
• The right to be part of the board of Visitors and inspectors in the facilities and services run for mentally ill persons.
• The right to file a petition in the Court or to any appellate authorities to seek justice on any discrimination or grievances pertaining to their wards.
• The right to choose and identify a legal guardian as just a guardian which can be communicated thru formal and informal means. For example, the WILL can be recognised as a legal instrument to accept the family's choice of a guardian.
• The right to be recognised as part of the Care services delivered for the patient so that it can seek support services like family therapy, or even financial support etc.

What are the rights of patients (users or consumers)?

India is one of the few countries that has a dedicated mental health legislations known as the Mental Health Act 1987. Though it is not rights based legislation, the Act entitles patients to the following rights.

• Right to voluntary admission, treatment and discharge.
• Right for custodial care by the State for orphaned MI person.
• Right for legal representation for the poor.
• Right to be protected from abuses arising out of medical research and experiments.
• Right to privacy of communication by way of letters addressed to one.
• Right for protection of property and care by persons appointed by the District Courts.

The above rights are hardly in practice on account of the poor awareness about the legislation and non-implementation of the Act by the Central and State Mental Health Authorities under the Act.

MI is officially recognised as a disabling illness under this Act on par with other physical and mental disabilities. Though the Act ensures equality of opportunities and rights, it denies the right to employment for MI persons. Secondly, the provision for free education is only up to the age of 18 yrs. This does not help the MI persons because their diagnosis is only around that age and by the time the manifestation of disabilities takes much longer. Nevertheless, PDA has brought MI into the disability mainstream and benefits therein. Benefits vary from State to State. For obtaining Disability Certificate(DC),contact the Commissioner for Disabilities or District Disability official of your State. At an all India level, the MI persons are entitled for the following benefits provided they get the DC.

The Convention marks a shift in orientation from welfare to human rights by mainstreaming of persons with mental and intellectual disabilities, firstly within the disability scheme and then within the broad human rights agenda. In other words, the CRPD upholds equality of MI on all aspects including their mental and legal capacity on par with other citizens in any country. Though CRPD is not an Indian Law, it embodies the 21st century thinking on Human Rights as an undivided holistic package of rights covering all aspects of life, health, civil, economic, social, political etc. As a signatory to the CRPD, India is expected to incorporate UN principles in its existing legislations wherever the latter is in conflict with the former.

Some thoughts for caring and sharing.

On most occasions, it is the family that bears the brunt of the patient's anger. When asked why it is so,

• One patient replied that it is an outburst of his frustration with a family that says "I love you" but does nothing to show it in action. He wants them to meet a counsellor to learn how to communicate with him; or even about the illness itself. But the family members say that everything is okay with them and that he is not well. What is your view?
• Another patient said that she is scared of throwing up temper tantrums with outsiders whereas she expects the family to understand! Do you believe it?
• Yet another patient said that the family is unable to accept that he is ill and does not believe him. Is this possible?
• One girl said that all her actions and statements are construed to be symptoms by family members. She felt that they do not even think that she has some personality of her own apart from the illness. Hence she shouts at them. Are you one such care giver?
• One user (ACMI addresses patients as "users") stated that all decisions are taken about him as if he does not exist! While he knows that he is not always in a good mood, he also thinks that he must be respected and considered as an integral part of the family even if he has gone "mad". Do you agree that the mental patients also have some rights?