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The Rights of Persons with Disabilities Act, 2016: Does it address the needs of the persons with mental illness and their families

2017; Medknow; Volume: 59; Issue: 1 Linguagem: Inglês

10.4103/psychiatry.indianjpsychiatry_75_17

1998-3794

ChoudharyLaxmi Narayan, Thomas John,

Healthcare innovation and challenges

INTRODUCTION After India signed and ratified the UNCRPD in 2007, the process of enacting a new legislation in place of the Persons with Disabilities Act, 1995 (PWD Act, 1995) began in 2010 to make it compliant with the UNCRPD. After series of consultation meetings and drafting process, the Rights of PWD Act, 2016 (RPWD Act, 2016) was passed by both the houses of the Parliament. It was notified on December 28, 2016 after receiving the presidential assent.[1] Principles stated to be implemented for empowerment of persons with disabilities (PWD) are respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons. The Act lays stress on nondiscrimination, full and effective participation and inclusion in society, respect for difference and acceptance of disabilities as part of human diversity and humanity, equality of opportunity, accessibility, equality between men and women, respect for the evolving capacities of children with disabilities, and respect for the right of children with disabilities to preserve their identities. The principle reflects a paradigm shift in thinking about disability from a social welfare concern to a human rights issue. THE PERSONS WITH DISABILITIES ACT, 1995 The PWD (Equal Opportunities, Protection of Rights, and Full Participations) Act, 1995 was enacted to give an effect to the "Proclamation on the Full Participation and Equality of the People with Disabilities in the Asian and Pacific Region."[2] The Proclamation was issued in a meeting of the Economic and Social Commission for Asia and the Pacific Region in December 1992 at Beijing, to launch the "Asian and Pacific Decade of Disabled Persons 1993–2002." The Act listed seven conditions of disabilities, which were blindness, low vision, leprosy cured, hearing impairment, locomotor disability, mental retardation, and mental illness. Mental retardation was defined as "a condition of arrested or incomplete development of mind of a person which is specially characterized by subnormality of intelligence." Mental illness was defined simply as "any mental disorder other than mental retardation." The Act adopted an approach of social welfare in respect of PWD and the main focus was on prevention and early detection of disabilities, education and employment of the PWD. The Act also provided 3% reservation in Government jobs and educational institutions. It stressed on making the barrier-free situations as a measure of nondiscrimination. SALIENT FEATURES OF THE RIGHTS OF PERSONS WITH DISABILITIES ACT, 2016 In the RPWD Act, 2016, the list has been expanded from 7 to 21 conditions and it now also includes cerebral palsy, dwarfism, muscular dystrophy, acid attack victims, hard of hearing, speech and language disability, specific learning disabilities, autism spectrum disorders, chronic neurological disorders such as multiple sclerosis and Parkinson's disease, blood disorders such as haemophilia, thalassemia, and sickle cell anaemia, and multiple disabilities. The nomenclature mental retardation is replaced by intellectual disability which is defined as "a condition characterized by significant limitation both in intellectual functioning (reasoning, learning, problem-solving) and in adaptive behavior which covers a range of every day social and practical skills including specific learning disabilities and autism spectrum disorders." The Act provides an elaborate definition of mental illness which is "a substantial disorder of thinking, mood, perception, orientation, or memory that grossly impairs judgment, behavior, and capacity to recognize reality or ability to meet the ordinary demands of life but does not include retardation which is a condition of arrested or incomplete development of mind of a person, especially characterized by subnormality of intelligence." Persons with benchmark disabilities are defined as those with at least 40% of any of the above disability. PWD having high support needs are those who are certified as such under section 58(2) of the Act. The RPWD Act, 2016 provides that "the appropriate Government shall ensure that the PWD enjoy the right to equality, life with dignity, and respect for his or her own integrity equally with others." The Government is to take steps to utilize the capacity of the PWD by providing appropriate environment. It is also stipulated in the section 3 that no PWD shall be discriminated on the ground of disability, unless it is shown that the impugned act or omission is a proportionate means of achieving a legitimate aim and no person shall be deprived of his personal liberty only on the ground of disability. Living in the community for PWD is to be ensured and steps are to be taken by the Government to ensure reasonable accommodation for them. Special measures are to be taken to ensure women and children with disabilities enjoy rights equally with others. Measures are to be taken to protect the PWD from being subjected to cruelty, inhuman, and degrading treatments and from all forms of abuse, violence, and exploitation. For conducting any research, free and informed consent from the PWD as well as a prior permission from a Committee for Research on Disability to be constituted in the prescribed manner. Under section 7(2) of the Act, any person or registered organization, who or which has reason to believe that an act of abuse, violence, or exploitation has been, is being or likely to be committed against any PWD, may give information to the local Executive Magistrate who shall take immediate steps to stop or prevent its occurrence and pass appropriate order to protect the PWD. Police officers, who receive a complaint or otherwise come to know of violence, abuse, or exploitation, shall inform the aggrieved PWD of his right to approach the Executive Magistrate. The police officer shall also inform about particulars of nearest organization working for the rehabilitation of the PWD, right to free legal aid, and right to file complaint under the provisions of this Act or any other law dealing with such offence. Equal protection and safety in situations of risk, armed conflict, humanitarian emergencies, and natural disasters are to be provided to PWD. Children with disability are not to be separated from parents except on the order of a competent court and information about reproductive rights and family planning to the PWD is to be ensured. Accessibility in voting and access to justice without discrimination to the PWD are to be ensured. Public documents are to be made available in accessible formats. It is to be ensured that all PWD enjoy legal capacity on an equal basis with others in all aspects of life and has the right to equal recognition everywhere as any other person before the law and have the right, equally with others, to own and inherit movable and immovable property as well as control their financial affairs (Sec 13). It is also provided that a PWD with benchmark disability who consider himself to be in need of high support, he/she or any other person or organization in his behalf may apply to the authority appointed by the Government for the same and the authority shall take steps to provide support accordingly (Sec 38). However, the PWD would have the right to alter, modify, or dismantle the support system and in case of conflict of interest, the supporting person would withdraw from providing the support [sec 13(4&5)]. It has been provided in the section 14 of the Act that a District Court or any designated authority, as notified by the State Government, finds that a person with disability, who had been provided adequate and appropriate support but is unable to take legally binding decisions, may be provided further support of a limited guardian to take legally binding decisions on his behalf in consultation with such person, in such manner, as may be prescribed by the State Government. It is also provided that the District Court or the designated authority, as the case may be, may grant total support to the person with disability requiring such support or where the limited guardianship is to be granted repeatedly. In these cases the decision regarding the support to be provided shall be reviewed by the Court or the designated authority, as the case may be, to determine the nature and manner of support to be provided. Limited guardianship has been explained to mean a system of joint decision which operates on mutual understanding and trust between the guardian and the person with disability, which shall be limited to a specific period and for specific decision and situation and shall operate in accordance to the will of the person with disability. It is also provided that on and from commencement of the Act, every guardian appointed under any other law for time being in force shall be deemed to function as a limited guardian. The Bill provides for the access to inclusive education, vocational training, and self-employment of disabled persons without discrimination and buildings, campuses, and various facilities are to be made accessible to the PWD and their special needs are to be addressed. Necessary schemes and programs to safeguard and promote the PWD for living in the community are to be launched by the Government. Appropriate healthcare measures, insurance schemes, and rehabilitation programs for the PWD are also to be undertaken by the Government. Cultural life, recreation, and sporting activities are also to be taken care of. All Government institutions of higher education and those getting aid from the Government are required to reserve at least 5% of seats for persons with benchmark disabilities. Four percent reservation for persons with benchmark disabilities is to be provided in posts of all Government establishments with differential quotas for different forms of disabilities. Incentives to employer in private sector are to be given who provide 5% reservation for persons with benchmark disability. Special employment exchanges for the PWD are to be set up. Awareness and sensitization programs are to be conducted and promoted regarding the PWD. Standards of accessibility in physical environment, different modes of transports, public building and areas are to be laid down which are to be observed mandatorily and a 5-year time limit is provided to make existing public building accessible. Access to information and communication technology is to be ensured. The Central and State Advisory Boards on disability are to be constituted to perform various functions assigned under the Act. District level Committees are also to be constituted by the State Government. Chief Commissioner and two Commissioners for PWD are to be appointed by the Central Government at the central level for the purposes of the Act. Similarly, State Commissioners for PWD are to be appointed by the State Governments. National Funds for PWD and State Funds for PWD are to be constituted at the central and state levels respectively by the appropriate Governments. Contraventions of the provisions of the Act have been made punishable by a fine of an amount up to ten thousand for first contravention and fifty thousand extendable up to five lakhs for subsequent contraventions. Atrocities on PWD have been made punishable with imprisonment of 6 months extendable to 5 years and with fine. Fraudulently availing of the benefits meant for PWD has also been made punishable. THE RIGHTS OF PERSONS WITH DISABILITIES ACT, 2016 AND PERSONS WITH MENTAL ILLNESS On perusal of the Act, it is observed that though mental illness has been included as a condition of disability, special needs of persons with mental illness (PMI) and their families have not been properly addressed. PWD with mental illness require special and different types of attention and care due to the nature of their illnesses. Frequently, persons with severe mental illness are not in a position to be aware of their illness because of the lack of insight. In these circumstances, their families are great asset in providing them care and support. In our country, where personnel resources in mental health care are extremely scarce, family is a very important asset in the management of mental illness.[3] Family members need to be involved to the greatest extent in the mental healthcare and family support should be encouraged as it provides moral, emotional, and physical support to the PMI.[4] However, the provisions of the section 7(2) of the Act may result in a situation, in which the family members and other caregivers may be less willing to be proactive and rather be scared to provide the required help.[3] Anyone who steps in and tries to do something for such a PWD having mental illness can be reported against by any person walking on the street as violating this law and can be held to be doing as such by the law enforcing authorities. Thus, the Act criminalizes the service provider and the family for providing treatment of persons with severe mental illness even though the person may be at a clear risk to himself or to others. The section 7(2) has been inserted for a good cause of protecting PWD from acts of abuse, violence and exploitation. But its application to those with mental illness needs proper modification to address this problem. The existing state of affairs of scarcity of mental health services very appalling in our country. The Government run mental health services are not available in most of the districts and in about one-third of the districts in the country, there are no mental health services at all. Vast number of PMI with high support needs have no support available to them except that of their family members. Strong family and social bond that exist in our country are of great help for these PMI. If the importance of family for this purpose is discouraged, persons living with mental illness and intellectual impairments may get abandoned and may be left to roam on the streets. Section 38 provides that any person with benchmark disability, who considers himself to be in need of high support, or any person or organization on his or her behalf, may apply to an authority to provide high support. Thus, the Act puts the onus to seek support upon the PWD, relies excessively on the NGOs, and fails to see the importance of the family. Moreover, it denies the possibility that a person living with mental illness or with intellectual disability may not be able to seek support at all or may not be able to take a decision even when all the supports are made available. While ignoring the role and importance of family in the care of PMI, the Act is silent on how the vast support system would be built for such a large country with millions of persons suffering from severe mental illness. Even if any support system is actually built in urban and semiurban areas, how can be it imagined that the PMI living in remote villages would get access to them where even the most basic health facility is not available? In the RPWD Bill presented to the Rajya Sabha, there were provisions of limited and plenary guardianships in appropriate circumstances to be granted by the District Court for "a mentally ill person."[5] However, the reference to "mentally ill persons" is now replaced by "a person with disability," i.e., to include the PWD due to other reason too and the term "plenary guardianship" have been dropped to be replaced by a clause "may grant total support to the person with disability" leaving a lot of ambiguity in its meaning and application. It is pertinent to note here that the provisions of judicial inquisition in the MHA-1987 have been dropped and there is no such provision in the Mental Health Care Bill (MHCB), 2016. Now, the references to "a mentally ill person" and "plenary guardianship" have also been modified in this Act. After going through all these provisions, it seems that a universal legal capacity in all PWD has been presumed including in those with severe mental illness and the existence of mental impairment in mental illnesses is denied. However, the Act itself, in some of its sections, presumes lack of legal capacity in respect of the PMI. Sections 62(1) and 68(1) disqualify "a person of unsound mind and stand so declared by a competent court" from becoming the member of the Central and State Advisory Boards respectively. Disproportionately, lower number of jobs reserved for persons living with mental illness, persons with intellectual impairment, autism, specific learning disability and multiple disability (1% for all five taken together) also suggest an assumption of incapacity of the PMI. Chapters of education, vocational, and self-employment are silent on the specific measures that need to be taken to ensure the realization of the rights for PMI. An assumption of incapacity to some extent or other in PMI seems to work here too. Moreover, considering the attitudinal and environmental barriers faced by PMI, there should have been special emphasis and social welfare measures to bring them into mainstream.[6] Law recognizes the impairment of mental state and understanding in severe mental illness, sometime giving benefit to the PMI (like section 84 of the IPC absolving them from the criminal responsibility), and sometime to the detriment for them (like disqualification clauses in holding various public offices including holding the offices of membership of advisory boards as above). The subsection 3 of the Act as above has a exception clause of "a proportionate means of achieving a legitimate aim." Recognition of impairment of mental state and understanding in the process of treatment and care would be a legitimate aim and some special provision in this respect may be in fact highly beneficial for proper care for the PMI and ultimately, the society at large would be benefitted. THE RIGHTS OF PERSONS WITH DISABILITIES ACT, 2016 AND PSYCHIATRISTS The RPWD Act 2016 contains 17 chapters with 102 sections. All these chapters are important to Psychiatrists while chapters 1,5,10 and 11 hold special importance as the provisions in these chapters are closely associated with the ethics of physical and mental health professionals. The definitions of specified disabilities given at the end of the Gazette Notification as a 'Schedule' are an extension of definitions given in chapter 1, section 2(zc). Mental health disabilities like intellectual disabilities, specific learning disabilities and autism spectrum disorders are clubbed together creating confusion for the certifying doctors and implementing Government departments. By this definition it looks like that these three items are one and the same. It has to be rectified immediately before framing rules for implementation of the Act. In the initial draft bill released in 2012 the definitions of these three items were clear. This Act contains a new disability known as 'Chronic Neurological Disorder'. The term 'Person with Disability' denotes long term impairment. Still the word chronic is added for more clarity during certification. It would have been nice to prefix the term 'chronic/ long standing/ prolonged' before Mental Illness as a disability. Chapter 5 deals with health care, research, rehabilitation etc for persons with disability while Chapter 10 deals with certification procedure. While framing rules under this Act, the professional ethics and freedom of expression of Psychiatrists should be protected. Chapter 11 deals with constitution of Advisory Boards and nomination of members. Psychiatrists should have adequate representation in these bodies at National, State and local levels. CONCLUSION It would have been better if the specific aspects concerning the persons living with mental illness, such as the matter of their protection from abuse, violence and exploitation, and guardianship (limited or otherwise), was covered by suitable and comprehensive provisions in the MHCB, 2016 leaving only general provisions to be covered by this Act.[7] However, due to reasons unknown, it was not done. Intellectual Disability (Mental Retardation), Autism and Multiple Disabilities which were well covered earlier by National Trust Act of 1999 will face similar situation like people with Mental Illness by this Act. It is pertinent to note that Indian Psychiatric Society, the largest professional association of psychiatrists in India with more than 90% of qualified psychiatrists in its fold, was not involved as a stakeholder during the process of drafting of the RPWD Act, 2016 though it made its representation on its own initiative at various stages. It must be recognized that the psychiatric professionals hold expertise in the field of treatment and care of the persons living with mental illness, autism and intellectual disability. Therefore, their advice must be given due importance while drafting any legislation in this field. Practical difficulties anticipated to occur in the treatment and care of the PMI and in the delivery of mental health services have been discussed here. These facts should be taken into consideration and necessary measures should be undertaken while framing rules by the central and the state Governments for implementation of this Act.