The Rights of Persons with Disability Act, 2016: Challenges and opportunities.

India signed the United Nations Convention on the Rights of Person with Disabilities (UNCRPD) and subsequently ratified the same on October 1, 2007. The UNCRPD proclaims that disability results from an interaction of impairments with attitudinal and environmental barriers which hinders full and active participation in society on an equal basis. Further, the convention also mandates the signatories to change their national laws, to identify and eliminate obstacles and barriers, and to comply with the terms of the UNCRPD. In this regard, the Government of India initially undertook the amendment of laws such as Persons with Disability Act, 1995 (PWD Act 1995). The Rights of PWD Act, 2016 (RPWD Act 2016) replaced the PWD Act 1995 to comply with the UNCRPD. The new act was fine-tuned considering the socio-cultural and local needs of the society, and the available resources. Persons with Mental Illness (PMI) are often stigmatized and discriminated, which hinders their full and active participation in society. This is a much larger issue, especially in women, gender minorities, backward communities, and the poor and the migrated populations. Adding to the complexities, PMIs are often not aware of their illness, refuse the much-needed treatment and often are not in a place to exercise their rights. There is an urgent need to address this issue of attitudinal barrier so that the rights of PMI are upheld. Hence, this article discusses challenges and opportunities in the RPWD Act 2016 from the perspective of PMI.

INTRODUCTION

The World Health Organization (WHO) and the World Bank published the first-ever world report on disability, which stated that one billion people, or 15% of the world's population, experience some form of disability.[1] Discrimination and stigmatization of people with mental illness have persisted throughout history, and it continues to prevail in the ppresent civilized world. Persons with Mental Illness (PMI) are, or can be, particularly vulnerable to abuse and violation of their rights.[2] Mental illness can have a devastating impact on any family, especially when the primary breadwinner suffers from the illness. PMI drift to poverty, adding to the suffering, which is a double disadvantage.[3] Stigma and discrimination lead to pervasive human rights violations against people with mental and psychosocial disabilities in low-and middle-income (LAMI) countries. The discrimination is no doubt a basic human rights violation under the United Nation's International Covenant on Civil and Political Rights, International Covenant on Economic, Social and Cultural Rights, and Convention on the Rights of Persons with Disabilities (CRPD).[4] These are legislations/instruments by the United Nations to ensure that the countries that ratified the convention, develop appropriate, adequate, timely, and Humane health care services. It also helps in the protection of human rights of the disadvantaged, marginalized and vulnerable citizens.[5]

CRPD is an International Human Rights Treaty of the United Nations intended to protect the rights and dignity of persons with disabilities. It was adopted by the United Nations General Assembly on December 13, 2006.[6] The Preamble of the United Nations CRPD (UNCRPD) acknowledges that “disability” is an evolving, dynamic and complex phenomenon. Generally, disability results from an interaction of impairments with attitudinal and environmental barriers which hinders full and active participation in the society on an equal basis. Attitudinal barriers, rather than resource constraints, often create the strongest barriers in ensuring the rights of the person.[17] This convention makes a paradigm shift from “charity” based approach to “rights”-based approach for persons with disability, thus marking the dawn of the new era.[7] The UNCRPD mandated its signatories to change the existing laws in order to bring them in conformity with the principles of this Convention. The ratification of the UNCRPD in October 2007 by India,[6] brought in the drafting of new legislation, “the Rights of Persons with Disability Act (RPWD Act), 2016”[8] and “the Mental Healthcare Act, 2017.”[910] Mental disorders (specifically, major depression, alcohol dependence, schizophrenia, bipolar affective disorder, and Obsessive Compulsive Disorder (OCD) account for five of the ten leading causes of disability.[11] This article discusses the challenges and opportunities of the RPWD Act 2016 from the perspective of PMI.

RIGHTS OF PERSONS WITH DISABILITY ACT, 2016

RPWD Act, 2016, received the assent of the President on December 27, 2016. The preamble of this act clearly states that it aims to uphold the dignity of every Person with Disability (PwD) in the society and prevent any form of discrimination. The act also facilitates full acceptance of people with disability and ensures full participation and inclusion of such persons in the society. The act contains 17 chapters with 102 sections.[8] It defines PwD as any person with long-term physical, mental, intellectual, or sensory impairments which on interacting with barriers hinder effective and equal growth in the society. Further, it also defines “Person with Benchmark Disability” as a person with not <40% of specified disability.

Its sections 12, 13, 14, and 15 are of crucial role for PMI. Section 12 (Right to access to justice) dictates that appropriate government shall ensure that persons with disabilities can exercise the right to access any court, tribunal, authority, commission, or any other body having judicial or quasi-judicial or investigative powers without discrimination based on disability. The implication for PwD is that they can approach any court without having to prove that they are not actively symptomatic.

Section 13 (Legal Capacity) states that appropriate government shall ensure that the persons with disabilities have rights, equally with others, to own or inherit property, movable or immovable; to control their financial affairs; and to have access to bank loans, mortgages and other forms of financial credit. The implication for persons with mental disability is that they can enjoy legal capacity on an equal basis with others in all aspects of life and have the right to equal recognition everywhere, like any other person, before the law.

Section 14 (Provisions for guardianship) articulates the provisions of limited guardianship and total guardianship. A person with a mental disability can seek “guardianship” based upon the extent of support they require. When the designated authority finds that a PwD is unable to take legally binding decisions, he/she may be provided with further support of a limited guardian to take legally binding decisions on his/her behalf in consultation with such person with disability. In certain other situations, the designated authority may grant total guardianship, thereby ensuring support to a PwD, who requires multiple limited guardianships to be granted repeatedly. The National Trust Act for autism, cerebral palsy, mental retardation, and multiple disabilities discusses the procedure of applying for guardianship under the act. However, on notification of the RPWD Act, 2016, the dilemma is where one should approach for guardianship certificate ?: whether under the RPWD Act, 2016 or the National Trust Act, 1999?

The RPWD Act 2016 proposes free health care in the vicinity, especially in rural areas subject to “such family income” as may be notified. The RPWD Act should be amended “keeping the rights-based” spirit of the legislation. The amendment needs to modify the clause as “every person shall have a right to access physical and mental health care without any income limitation.” This would be the real empowerment and rights-based legislation for persons with disability. Certainly, the RPWD Act 2016 states that “State authorities shall do this within their economic capacity and development.” This is against the idea of providing “Rights” and allows the “State” to absolve from its duties. The act mandates that PwD shall have the right to live in the community. However, PMI or severe intellectual disability may have to stay long-term in (closed) rehabilitation centers, to receive adequate care, keeping in mind, the larger interest of the PMI.

Further, Section 92 of the act discusses the punishment for atrocities against persons with disability. The imprisonment sanctioned under the legislation in such atrocities is 6 months, extendable to 5 years with or without fine. The atrocities mentioned are (a) intentionally insulting/intimidating with intent to humiliate within public view, (b) assaulting with intent to dishonor or outrage the modesty of a woman with a disability, (c) knowingly denying food or fluids to a PwD, (d) sexually exploiting a woman/child with disability, (e) voluntarily injuring/damaging/interfering with the use of any limb/sense/any supporting device of a PWD, and (f) performing/conducting/directing any medical procedure on a woman with disability which causes or can lead to termination of pregnancy, without her or her guardian's expressed consent, and without the opinion of a registered medical practitioner. To streamline the system, the act suggests Special Courts be established in each district. The implication of this section from the perspective of a person with a mental disability is that atrocities against them are punishable. This clause will be most beneficial for PMI, who are discriminated, stigmatized and can be particularly vulnerable to abuse and violation of their rights.

MENTAL ILLNESS AND MENTAL DISABILITY

The term “mental disability” is used when a psychiatric illness significantly interferes with the performance of major life activities such as self-care, working, moving and getting around, understanding, communication, interpersonal activities, and participation. Further, attitudinal and environmental barriers hinder full and active participation of PMI in the society on an equal basis. Mental illnesses continue to be underdiagnosed, undertreated, and underestimated in official statistics and discriminated against.[12] This situation becomes worse with regard to providing care and social welfare measures to PMI in the low-and middle-income (LAMI) countries.[4] PMI face significant challenges during the assessment of disability due to the following reasons;[7]

Mental disability cannot be seen,[12] hence it is often called “invisible disability”

Mental illnesses are difficult to diagnose through any laboratory instrument

Mental illnesses are often fluctuating, episodic and dynamic in nature

PMI often find it difficult to communicate the challenges they face in day-to-day life

Myths, stigma, and discrimination of mental illness prevailing within the society can lead to a denial of their rights, and

Providing early and adequate treatment can considerably reduce disability in certain cases.[7]

CHALLENGES IN INDIAN MENTAL DISABILITY ASSESSMENT SCALE

The scale for assessment of mental disability needs to be accurate, easily administrable, and not time-consuming. There should be adequate safeguards so that public funds are not miss-utilized. In this regard, the WHO Disability Assessment Schedule (WHO-DAS 2.0) has been modified and adapted to Indian context by the Rehabilitation Committee of the Indian Psychiatric Society who evolved an assessment tool called the Indian Disability Evaluation and Assessment Scale (IDEAS).[1314151617] IDEAS had been field-tested at eight centers in India.[15] The instrument is simple and comprehensive in quantifying mental illness disability. IDEAS was initially devised and advocated for four important psychiatric disorders: schizophrenia, bipolar disorders, OCD, and dementia.[15] However, as per the Ministry of Social Justice and Empowerment, Government of India, gazatted to use IDEAS to assesses disability on five dimensions: (”Self-Care,” “Work,” “Interpersonal Activities,” “Communication and Understanding,” and “Duration”) and to assess the disability for all mental disorders.[514] Compared to IDEAS, administration of the WHO-DAS 2.0 requires more time, and training of the workforce to administer WHO-DAS 2.0 is more difficult. IDEAS have been found to be very useful in the field for assessing mental disability. Hence, IDEAS is more suited to the Indian setting. However, IDEAS has the following pitfalls such as:

It is not comprehensive

It does not cover all the mental disorders

Currently, it becomes difficult to compute the total duration of illness for episodic illnesses such as Bipolar Disorder and Depressive Disorder. In the original version, as submitted by the authors, the method used was called “MY 2Y” months of illness during the last two years. It can be used for calculation of duration of continuous illness in PMI. Hence, IDEAS requires further refinement in assessing mental disability.

CHALLENGES IN PSYCHIATRIC DISABILITY CERTIFICATION

Disability is very well established in mental retardation,[18] schizophrenia,[19] anxiety disorders,[20] OCD,[21] mood disorders,[22] depression,[23] dementia,[24] and posttraumatic stress disorder.[25] Do all mental disorders need to be certified for disability? There have been strong debates across the world whether substance use disorders, personality disorders, paraphilias, and gender identity disorder should be considered for Disability Benefits. As per the gazette notification, disability certificates can be issued for all mental illness[8] irrespective of the diagnosis. Mental health professionals need to know that disability certificate is not based on the diagnosis, but the amount of disability experienced by the individual. Regarding this issue, policymakers in India have thought beyond the conventional way and included all mental illness for disability assessment and benefit.

Certainly, many psychiatrists do not agree on the issue of disability for a person with alcohol dependence or other substance dependence. However, it has been established that these disorders do cause disability.[2627] Many psychiatrists express a concern that these patients will use the disability benefit for procuring alcohol or drugs and hence outrightly reject to assess the disability in substance use disorders. Hence, recent legal instruments and laws such as UNCRPD and RPWD Act, 2016, included disability arising as a result of attitudinal barriers which hinder full and active participation in the society on an equal basis.

In developed countries such as Canada, the USA, and so forth, alcohol and drug addiction often substantially impairs a person's ability to work. An applicant will not be approved for disability on the basis of the drug addiction alone. However, if the applicant can prove that because of substance use he/she has developed irreversible medical or mental problems, he/she can get the approval for welfare benefits.[5]

From the legal point of view, if alcohol dependence and substance dependence are medical illnesses and can cause disability, persons with those illnesses have the right to ask for disability benefits under the RPWD Act, 2016. The welfare measures can be made contingent upon attending treatment for drug addiction/rehabilitation, and the welfare benefits will be transferred to a representative payee (usually family members) who is expected to prevent the PMI (substance user) from spending the money on drugs and to manage the applicants’ expenses from the disability pension. There is no doubt that mental illnesses, including substance use, significantly interfere with the performance of major life activities such as learning, working, socializing, interacting, communicating, and participating with others, the issue revolves around how a civilized society can be inclusive and nondiscriminatory.[5]

CHALLENGES IN CERTIFYING TEMPORARY VERSUS PERMANENT DISABILITY

Psychiatric illnesses are often episodic, fluctuating, dynamic and debilitating. However, for the purpose of certification, mental disability should be assessed when the psychiatrist is satisfied that further psychiatric treatment and rehabilitation is not likely to reduce the extent of the impairment. Normally, a period of 6 months is considered for such medical conditions. In case of doubt that there is a possibility of improvement even after 6 to 12 months of treatment, as a rule of thumb, a temporary disability certificate can be issued.[28] The temporary certificate would be valid for 5 years. For example, after treatment of bipolar affective disorders, disability percentage may change after treatment with mood stabilizers and rehabilitation, which is reflected in terms of improvement in mood symptoms, cognition, activities of daily living, work, and so forth. In such cases, it would be prudent to issue temporary disability certificate.

If an individual gets his/her disability certificate due to psychiatric illness during the active phase of the illness and later the illness improves due to treatment and rehabilitation, the percentage of disability may vary at the reassessment. For example, if a patient with OCD gets neurosurgery done, the debilitating obsessive and compulsive symptoms may be relieved and functional improvement may occur. The percentage of disability will become less. Further, it is also highly difficult to predict the percentage of improvement that can occur in patients with OCD after neurosurgery. These challenges are going to haunt the psychiatrist during disability certification. There will be a margin of error in certification because of the nature and course of the mental illness.

For permanent disability, certificate once issued is permanent and lifelong. Hence, before issuing a permanent certificate, members of the medical authority need to exercise a reasonable degree of caution that improvement in the psychiatric condition has reached the maximum extent currently possible and that the illness is not likely to improve further. Psychiatrists, ideally, before issuing a permanent disability certificate, need to exhaust all options to reduce, treat, rehabilitate, and correct the disability. However, given the practical difficulty and resource constraints and taking a holistic view, a certificate cannot be denied for want of psychiatric interventions. The percentage of disability recorded in the certificate is based on the condition on the day of assessment when there were no chances of improvement by usual treatment. In the case where disability assessment is done, following specific psychiatric and rehabilitation intervention, the percentage of disability mentioned in the certificate earlier shall not be valid.

The RPWD Act, 2016, makes a provision for issue of temporary disability certificates in certain situations. The treating professional can indicate the duration for which the certificate is valid and may suggest a periodic re-evaluation. When such duration is not specified, it is assumed that the certificate is valid for 5 years. This information is not widely known, and in several instances, such certificates have not been honored by the concerned administrators and patients have been denied their rights.

CHALLENGES IN QUANTIFICATION OF DISABILITY

On January 4, 2018, the Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment notified the Guidelines for the purpose of assessing the extent of specified disability.[29] For assessing disability with mental illness, IDEAS was notified (Appendix IV). Table 1 shows the global disability scores on IDEAS for mental illness are expressed in terms of the category of mild, moderate, severe, and profound disability.

Table 1

Global disability scores on IDEAS and Category of Disability

Global Disability Score on IDEAS	Mental disability category (%)
1-6	Mild disability (<40)
7-13	Moderate disability (40-70)
14-19	Severe disability (71-99)
20	Profound disability (100)

IDEAS - Indian Disability Evaluation and Assessment Scale

Although these ranges have been notified in the Gazette, in many cases, the administrators providing benefit insist on a specific percentage (similar to physical disability) to provide benefits and refuse to accept the range format. They need to be educated about the provisions of the rules. An alternate option would be for persons providing certification to express the calculated score in median percentage rather than on a range. If this issue is not addressed, the PMI will be deprived of their rights.

CERTIFICATION OF THOSE WITH MENTAL RETARDATION AND ANOTHER MENTAL ILLNESS

In case of certification of a person with both a mental illness and intellectual disability (mental retardation), as per the notification on January 4, 2018, mental illness and mental retardation (intellectual disability) are two separate disabilities.[29] In such scenarios, the formula for assessment of multiple disabilities needs to be applied.

“a” will be the higher score

“b” will be the lower score.

CHALLENGES IN THE CERTIFICATION OF AUTISM

Assessment of autism is yet to be notified under the RPWD Act, 2016. Another burning issue is that the notified disability guidelines name specific professionals such as “pediatric neurologist,” “rehabilitation psychologist,” and so forth to certify specific disabilities. This issue will become a major roadblock for issuing the disability certificate. Many medical specializations have been left out for certifying disabilities which they treat very often. For example, psychiatrists have not been included in the assessment of learning disability. This naming of the specialist needs to be amended and let the medical authority decide the specialist required for certification so that PwD do not have to run from one city to another and one hospital to another for getting the disability certificate.

Many disability certificates can now be issued by primary health care doctors after specific training, which will be a boon to many disabled patients in rural areas. However, the disability guidelines should have also given the power of certification to the private practising doctors, so that the shortage of human resources could have been taken care of, with adequate checks and balances.

CHALLENGES IN THE CERTIFICATION OF LEARNING DISABILITY

Learning disorders are biologically based, neurodevelopmental disorders that affect a child's ability to take in, process, and/or communicate information. As per the notification issued on January 4, 2018,[29] “specific learning disabilities” (SLD) is defined as heterogeneous group of conditions wherein there is a deficit in processing language, spoken or written, that may manifest itself as a difficulty to comprehend, speak, read, write, spell, or to do mathematical calculations and includes such conditions as perceptual disabilities, dyslexia, dysgraphia, dyscalculia, dyspraxia, and developmental aphasia. It is most welcome to see that “Learning disorders” are included in disability certification. However, the gazette notification issued on January 4, 2018 regarding the assessment of SLD had severe lacunae:

The suggested NIMHANS battery for SLD assessment is not comprehensive for all ages and languages. NIMHANS battery is standardized for 7th grade/standard only (approximately till 14 years of age). How one will assess SLD in the age range of 14–18 years will become challenging

The NIMHANS battery for SLD assessment does not determine the specific percentage of disability. This big lacuna needs to be addressed at the earliest to determine the severity of SLD disability

As per the notification, the diagnosis of SLD requires a team approach involving a paediatrician and clinical or rehabilitation psychologist. There is no mention of the psychiatrist in the assessment and certification of SLD. However, in real life, most of these cases are seen by psychiatrist or child psychiatrist

The SLD certification will be done for children aged eight years and above only. The child will have to undergo repeat certification at the age of 14 years and at the age of 18 years. The certificate issued at 18 years will be valid life-long. This validity of SLD certificate at the age of 18 raises serious questions such as:

If a child does not get access to one of the mentioned professionals for an assessment of SLD at the age of 18 years, what will happen?

Why are adults (above 18) suffering from SLD deprived of benefit?

How to assess SLD in adults?

If the above issues are not solved, it may have serious repercussion on the issue of social welfare benefits such as reservation in higher educational institutions and employment.

CHALLENGES IN PROVIDING RESERVATION IN HIGHER EDUCATIONAL INSTITUTIONS AND EMPLOYMENT

As per the RPWD Act, 2016, every government establishment shall reserve 1% of the total number of vacancies for persons with benchmark disabilities arising of autism, intellectual disability, SLD, and mental illnesses (Section 34). The law drafter combined intellectual disability and mental illness into one category and allotted only one percent. The policy-makers and experts, on the one hand, acknowledge the disability due to mental illness, and on the other hand, they also hold the opinion that PMI will not be able to meet the professional competence required for a job.[7] There is also a need to identify certain jobs and reserve them for PMI. Mental health professionals should now wake-up and defend the rights of PMI. Similarly, 5% of seats are reserved in the higher educational institutions for persons with benchmark disability (Sec 32), which is commendable.

In a country like India, mental health care is usually not perceived as an important aspect of public health care, and above this, in the current global financial crisis, people with mental disorders are among the most vulnerable, and programs for their social inclusion are not always regarded as a priority by local administrators.[30] Lack of mental health-care facilities at the community level and primary health care level, and insiffciency of psychiatric rehabilitation services have led the government mental hospitals to become a dumping ground of PMI. RPWD Act, 2016, discusses the formation of Special Courts and also appointing of Special Public Prosecutor for the purpose of implementation of the legislation. Similarly, MHCA 2017 discusses having the Mental Health Review Boards at each District for providing justices to the PMI. This is a duplication of services and waste of resources. Synchronizing both the legislation would help share the resources and enable implementation of both the acts effectively [Table 2].

Table 2

Certification of Mental Disability as per the Rights of Persons with Disability Act, 2016

• All PMI have a right to apply for the disability certificate

• Based on the disability assessment on IDEAS, the disability certificate is issued

• A temporary disability certificate can be given before receiving adequate treatment with respect to dosage and duration

• Permanent disability certificate should be given only if the medical authority is reasonably satisfied that all approved treatments which have been administered for adequate dose and duration have failed

• In the case of newly diagnosed patients, the disability certificate can be issued after adequate treatment. The adequate treatment as per the old Act (PWD Act, 1995) for neurological disability was 6 months. The same duration can be extrapolated in the absence of new notification. However, a temporary certificate can be issued, and reassessment dates can be clearly mentioned in the disability certificate

• When new registrants (but under treatment from a different institution) apply for disability certificate, if there is adequate documentation of diagnosis, duration, and treatment, a temporary disability certificate can be issued, if logistically feasible, even in the first visit

• If it is a known patient who is under regular long-term treatment and follow-up, the disability assessment and certification can be done in a single sitting

• During the assessment of disability, please collect information from all collateral sources such as the patient, family members, medical records, past-history of treatment, mental status examination, cognitive function, educational and occupational history, social function, and activities of daily living. If in doubt, the psychiatrist has the prerogative to admit the patient for observation and gathering more details

• Private institutions can also issue the disability certificate if the notification from the respective state government rules say so

• “Mental illness” and “Intellectual disability” are considered separate disabilities under the RPWD Act. Hence, the formula for “Multiple Disabilities” needs to be applied

• In all disability certificates, please mention the duration of validity of the certificate

• Refrain from providing disability certificate without directly assessing the patient

PMI - Persons with Mental Illness; IDEAS - Indian Disability Evaluation and Assessment Scale; PWD - Persons with Disability; RPWD - Rights of Persons with Disability

CONCLUSION

To conclude, 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. However, there are several shortcomings in the RPWD Act, 2016, which needs to be addressed at the earliest. Although RPWD Act, 2016 is a rights-based legislation, the success of the statute will largely depend on the proactive measures taken by the respective state governments on its implementation.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.