Implications of new guidelines for assessment and certification of disability in mental illness in India

ABSTRACT

The Government of India revised the guidelines for assessment and certification of disability due to mental illness in March 2024, introducing important changes with wide reaching implications. The revised guidelines recommend the use of a version of the Indian Disability Evaluation and Assessment Scale (IDEAS) which appears to restrict certification to four psychiatric disorders, raising concerns about diagnosis-based exclusion. The shift from total illness duration to months of illness in the preceding two years is an improvement; however, it still measures ‘illness’ rather than disability or dysfunction. Requirements regarding a certain duration of illness before permanent certification, and ill-defined terms like “adequate” or “appropriate” treatment creates barriers to certification, particularly in a resource limited setting like India. Expansion of the medical authority and inclusion of private practitioners are welcome changes, although individual roles require greater clarity. While the revised guidelines introduce several positive changes, internal inconsistencies may further restrict access to disability certifications.

INTRODUCTION

The Government of India (GOI) released a new set of guidelines for the assessment and certification of disability in March 2024. This article highlights some of the major changes made with regards to disability associated with mental illness and its implications on the stakeholders.

BACKGROUND

In India, mental illness was not officially included as a certifiable disability till 1995. The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 added it as the seventh disability. This inclusion meant that persons with mental illness (PWMI) would now be eligible for the rights and entitlements ensured by the Government. To facilitate an assessment of mental illness related disability, the Rehabilitation Psychiatry section of the Indian Psychiatric Society (IPS) developed The Indian Disability Evaluation and Assessment Scale (IDEAS) using the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) as a reference. It was field tested and validated in eight different centers of the country and released in January 2002.[1] A modified version of this was declared as the official scale for evaluating psychiatric disability in India in February 2002, marking the beginning of formal certification of disability due to mental illness.[2]

In 2016, The Persons with Disabilities Act (1995) was replaced by The Rights of Persons with Disabilities Act (RPWD). This Act expanded on the number of disabilities included and the rights and entitlements provided to persons with disabilities. The guidelines for certification of mental illness under this Act were revised in March 2024.[3] These revised guidelines for certification of disability due to mental illness recommend the use of a version of IDEAS which is appended in the Appendix VIII of the guidelines. These revisions have far-reaching consequences. Moreover, there are several discrepancies between the guidelines per se and the appendix. These are discussed below.

DIAGNOSTIC CATEGORIES THAT CAN BE CERTIFIED

In the new guidelines, although the definition of mental illness has not been changed, the appendix containing the IDEAS scale restricts the use of IDEAS and thus certification to four psychiatric disorders only, namely schizophrenia, bipolar disorder, obsessive compulsive disorder and dementia. The earlier Gazette notification[2] of the GOI had included all mental illnesses, and, for the past two decades, patients with all mental illnesses have been issued disability certificates irrespective of their diagnoses. Certifying disability irrespective of clinical diagnosis aligns with the principles of International Classification of Functioning, Disability and Health (ICF) namely, universality, parity, neutrality and environmental influence.[4] The ICF intends to shift the focus from health condition to functioning and places all disorders, whether mental or physical, on an equal footing. It also recognises the role of the environment in affecting people’s functioning including both physical and social factors. Both the United Kingdom and Australia follow the same principles and assess functional limitations irrespective of the diagnosis.[5,6] The US Social Security Administration (SSA) provides a list of disorders eligible for disability certification, however, the list is comprehensive and includes all major psychiatric disorders including anxiety and depression.[7] In fact, anxiety and depression are among the leading causes of disability in India and worldwide. According to the WHO Global Burden of Disease Study, 2021 depression and anxiety contributed about 56.3 million and 42.5 million years to the global disability adjusted life years (DALY), respectively.[8] The prevalence of treatment-resistant depression is estimated to range from 6% to 55% in the real-world setting.[9] In India, nearly 50% of persons with major depressive disorders reported difficulty in carrying out their daily activities.[10] Majority experienced dysfunction in their family life, social life and work. In this light, it is hard to understand the rationale behind limiting disability certifications based on diagnosis, especially when it is well known that disorders like depression and anxiety disorders do cause disability.

The economic burden of mental illness is also huge, considering the cost of regular follow ups, medications and therapy. Families spend a large proportion of their income for treatment. Families who have been depending on the disability pension to cover the costs of treatment would be negatively impacted by this change in the guidelines.

Further, it is unclear whether this change will apply only to new certifications or if individuals with disorders other than the four mentioned will have their disability certificates and the welfare benefits thereof revoked. For instance, what happens if the Unique Disability ID (UDID) of an individual with chronic depression receiving welfare benefits expires and needs to be renewed?

DURATION OF ILLNESS VERSUS DISABILITY

The new disability guidelines suggest that instead of total duration of illness, the months of illness in the last two years (MI2Y) should be considered while counting the total disability score. MI2Y is a better measure as compared to total duration of illness, as long duration of illness does not always mean more disability. For example, as per the previous gazetted version of the IDEAS, someone who has shown good response to treatment and is experiencing minimal disability, but has had the illness for over ten years would receive a score of at least four on the IDEAS scale. Even if they had mild disability across the other three domains of the IDEAS (i.e., score of 1 across all these domains), they would be eligible to get benchmark disability. Using MI2Y overcomes this problem. However, this approach has its own limitations, as it calculates the number of months spent in ‘illness’ rather than dysfunction or disability. There could be many reasons beyond the illness itself for dysfunction in a patient with mental illness, including personal and environmental factors. The current understanding of disability, as conceptualized in the International Classification of Functioning, Disability and Health (ICF),[4] acknowledges the role of all of these factors like deficits due to the illness (cognitive, social, skill deficits etc), stigma and discrimination due to the illness, unexplainable career gaps making it difficult to find a job. Thus, measuring the months with dysfunction in the past two years would be a more accurate indicator than measuring the months spent in illness. Unfortunately, it is now expected to measure ‘disability’ based on the presence of ‘symptoms’ which may or may not cause disability.

VALIDITY OF THE CERTIFICATE

The guidelines have used the terms ‘permanent disability certification’ and ‘certificate with time validity’ suggesting a temporary certificate. According to these guidelines, an illness needs to be present for at least 2 years before the person becomes eligible for a permanent disability certificate. Prakash[11] argues that the two-year requirement for disability certification delays access to essential support services and contrasts with the global best practices where dynamic functional assessment takes precedence over duration of illness. Moreover, the appendix mentions recertification every two years, implying that all certifications should be reviewed once every two years. This causes confusion. The appendix also mentions that its feasibility in the rural areas will have to be examined. Recertification every 2 years in a resource limited country like India could prove challenging, both in urban and rural areas. In 2015–16, the number of psychiatrists per 1,00,000 persons in India was 0.3 indicating a deficit of 77%.[12] The number of other professionals like clinical psychologists, psychiatric social workers and psychiatric nurses is still lesser. Even in the current scenario, where permanent certificates can be issued after the first assessment, the number of persons with disabilities who are certified remains significantly lower than the number eligible for certification.[13] This number can be expected to fall further if every certificate issued would have to be updated and recertified every 2 years. However, there is no denying the fact that it is essential to confirm the chronic nature of a disability before certifying it as permanent. Therefore, considering a permanent certification after a certain number of re-assessments could be beneficial. Allowing some room for judgement of the certifying board in cases where improvement is not expected could allow for a more nuanced approach. This decision should be based more on the nature of the health condition and circumstantial factors pertaining to the individual, and not necessarily on the severity of disability at the time of assessment. For example, someone who has a mild disability after a traumatic head injury is more likely to have a permanent disability as compared to someone who has a severe disability during a manic episode. Thus, the exception in the guidelines that “for certifying a permanent disability, a minimum duration of 2 years is required; however, if the case is severe or profound, the medical board may consider permanent certification” is not based on a firm rationale and needs revision.

THE FACTOR OF TREATMENT

In the previous guidelines, treatment status had no bearing on certification of disability. In the new guidelines the factor of treatment has a substantial role. However, there are vagueness and inconsistencies. The guidelines use different terms like ‘standard of care’, ‘treatment for adequate duration’, ‘appropriate evidence-based treatment’ ‘adequate treatment’, and ‘appropriate psychiatric treatment’. While it can be argued that this variability allows for clinical discretion and flexibility based on individual cases,[14] the lack of clear definitions can also lead to inconsistency and unpredictability across different settings. This is problematic, as explained here:

What should the board do if a treatment-naïve patient applies for certification? According to clause 24.3 B, as the patient has not received ‘standard of care treatment’, they should be issued a disability certificate with time validity up to 2 years. However, according to clause 24.3 E, they should be advised to seek “appropriate treatment to empower them and advised to seek certification of disability after adequate treatment (sic)”. The latter implies that such patients should not be issued disability certificates when they are treatment-naïve, apparently contradicting clause 24.3 B. In either case, the terms ‘standard of care treatment’ and ‘adequate treatment’ are vague. In India, at this juncture, human resources are inadequate to provide even just pharmacotherapy for a large proportion of individuals with mental illnesses.[10] ‘Standard of care treatment’ or ‘adequate treatment’ would mean a comprehensive psychosocial intervention in addition to pharmacotherapy in most cases. It is conceivable that only a minuscule proportion of individuals with mental illness can access such interventions. This would leave out a large proportion of patients from receiving disability certificates for no fault on their part.

According to clause 24.3 D, “permanent disability certification will be issued based on assessment of the residual disability despite appropriate evidence-based treatment as documented on medical records.” Evidence-based treatment for mental illnesses includes psychotherapy, family therapy, cognitive remediation, occupational therapy and vocational rehabilitation, to name a few. Each individual with mental illness may need a combination of these.[15,16] Such treatment is inaccessible for all patients even in most advanced government facilities. Indian studies have shown the beneficial effects of providing just regular antipsychotic medications and basic psychoeducation on the course of illness and disability.[17] However, ensuring even these fundamental interventions remains a challenge for much of the population in India, primarily due to the severe shortage of mental health professionals. In many states, individuals must travel long distances to even access regular outpatient follow-ups and medications. In such a context, a large proportion of persons with mental illness-related disabilities are effectively excluded from receiving permanent disability certification solely because of lack of accessible mental healthcare and for no fault of theirs. The government may decide to reserve some welfare benefits only for persons with permanent disabilities and most individuals with mental illness would then be denied these benefits.

Many healthcare facilities, especially in rural and semi-urban areas, lack robust medical record-keeping systems. Patients themselves are often unaware of the importance of preserving their medical records. Physical records are often misplaced or incomplete; in some cases, the severity of the illness itself may lead patients to destroy their records. Placing excessive emphasis on “appropriate evidence-based treatment as documented in medical records” can result in unnecessary delays in certification and may discourage some individuals from attempting the process again.

MEMBERS OF THE MEDICAL AUTHORITY

There is an expansion of members included in the medical authority which certifies disability due to mental illness [Box 1]. Previously, in addition to the chairperson of the authority, this was restricted to a psychiatrist for clinical assessment and a trained, registered Clinical Psychologist/Rehabilitation Psychologist to administer IQ tests. It has now been extended to include an additional “Psychiatrist/Physician, or RCI-registered Clinical Psychologist/Rehabilitation Psychologist/Psychiatric social worker”. The expansion of members is a welcome change. However, this statement also means any of the professionals added in the revised guidelines should be there in the medical authority. For instance, this could mean that wherever another psychiatrist or a physician is available, the clinical/rehabilitation psychologists or psychiatric social workers are not required. It is understandable that such a change could have been propelled by the fact that there are a limited number of such professionals in the country. However, this is problematic because not only are these professionals made to appear dispensable but by suggesting that professionals from any of these disciplines may be a member, the unique expertise in their respective field has been ignored. For instance, in case comorbid intellectual disability is suspected, a clinical psychologist may assess the IQ, a role that is not typically performed by any other professionals. How would a physician be able to fulfil this function?

Box 1.

Composition of the Medical Authority as proposed in the revised guidelines

1. Medical Superintendent, or Chief Medical Officer, or Civil Surgeon or any other equivalent authority as notified by the State Government

2. Psychiatrist

3. Psychiatrist/Physician or RCI registered Clinical Psychologist/Rehab Psychologist/Psychiatric social worker (wherever required Psychological Assessment report frtom RCI registered Psychologist obtained in the last three months).

On another positive note, another suggested change is that wherever required, private medical practitioners can also be included in the board. This provision would help a considerable number of persons seeking disability certificates, especially considering the lack of human resources in the government sector. Even at present, many states that face a lack of government recruited psychiatrists or psychologists, hire MBBS graduates trained in psychiatry and psychiatrists or clinical psychologist/rehabilitation psychologists working in the private sector to conduct these assessments and certify disabilities. These are facilitated through camps at Taluka/Block level organized by the Department of Social Welfare of various states. Allowing private practitioners to officially be a part of the certifying authority would enable easier access to disability certifications for the general population. However, such an approach should not become so generic that the quality of the certification process itself becomes compromised.

CONCLUSIONS AND FUTURE DIRECTIONS

The current modifications bring several welcome changes, such as emphasizing the impact of treatment on psychiatric disability and expanding the number of certifying professionals. The spirit of the original IDEAS developed by the IPS appears to have been upheld. However, these changes also raise several new questions that need to be addressed. As the new guidelines have internal inconsistencies as well as are likely to deny many deserving persons with enduring disability in the context of mental illness their entitlements, there is an urgent need for revision of these guidelines. The committee responsible for the current changes seems to include only health professionals. Any major changes in the law should involve broader discussions with various stakeholders including people with lived experience, caregivers, nongovernmental organisations (NGOs) working for PWMI and should not be limited to mental health professionals. This is consistent with the slogan, “Nothing about us without us”.[18]

Conflicts of interest

There are no conflicts of interest to declare.

Funding Statement

Nil.