The ‘invisible’ disability of mental illness: Barriers to social security access

On World Mental Health Day, Sakshi Sharda writes about how a lack of clarity on the assessment and diagnosis of mental health and poor implementation of social security schemes increases the vulnerability of those livings with disabilities. She explores the difficulties faced when obtaining disability certification for people suffering from ‘invisible’ disabilities such as mental illness, neurological disorders and learning disabilities. She highlights the shortcomings in existing policy, and issues caused by the lack of consensus on testing and limited access to tertiary health care centres.

The 76^th round of the Sample Registration Survey, conducted between July and December 2018 by the Registrar General of India, was designed and geared towards specially understanding the realities of disability. However, disability-related questions don’t feature in the more recent National Family Health Survey 6 (NFHS-6). There is a belief that data on disability will “not change fast”. The lack of clear and current statistics, and erroneous assumptions about disability as a whole, particularly in relation to mental illness, neurological disorders, and learning disabilities, create conditions where health infrastructure is not responsive to the needs of persons living with disabilities. The absence of information leads to an incongruence between prevalence rates, healthcare capacity and infrastructure, and the requisite social security.

This lack of understanding the key challenges, prevalence rates, disease burden and need for immediate action within the policy framework leads to gaps in implementation in the field – a case in point being the access to disability certification.

The need for disability certification

In India, disability certifications allow the holder to establish disability, and are crucial to accrue the benefits of social security schemes ensured by The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995. These certificates enable individuals to avail of various benefits, such as free education, reservation in government jobs and educational institutions, and preferential land transfer.

Certification is tedious and time-consuming but is the only means to ensure access to these schemes. The process of procuring the disability certificate remains extremely difficult, given the administrative requirements and need for medical records from designated authorities.

Despite the increase in the proportional contribution of mental disorders to India’s overall disease burden, from 2.5% in 1990 to 4.7%, in 2017, the policy framework and framework for diagnosis of mental illness, learning disabilities and neurological disorders remain outdated, with little clarity regarding the assessment and classification of mental disability. This deficiency, along with the taboo surrounding mental health and lack of mental health literacy, makes accessing tertiary care (that is, specialist attendance and specialist care for those with serious and persistent mental illness that cannot be managed by psychotherapy or medication) difficult. This adds to the larger vulnerability that people living with mental disability experience.

A large multi-country survey in 2008 studying mental illness, supported by the World Health Organization estimated that 35-50% of the serious cases in developed countries and 76-85% in less developed countries do not receive any treatment within a year of diagnosis (Kessler et al. 2009). The National Mental Health Survey (NMHS) 2015-16 highlights that the morbidity of mental illness is prominently observed in the lower-income quintiles of the population (See Table 1). This suggests that the burden of disability is exacerbated by poverty – however, access to care, medicine, and institutional help could all be mediated with access to disability certification.

Table 1. Share of population with morbidity due to mental illness, by income quintile (2015-16)

Income quintile	Across lifetime	Current
Lowest	15.96%	12.28%
Second	15.04%	12.14%
Middle	13.55%	10.53%
Fourth	12.28%	9.61%
Highest	12.20%	8.76%

Source: NMHS 2015-16
Note: All figures are in weighted percentage

Classifying and assessing disability due to mental illness

The Disability Act, 2016 outlines the legal and procedural requirements for disability certification in India. To assess mental illness, the Indian policy framework has developed the Indian Disability Evaluation and Assessment Scale (IDEAS), which tests an individual on four parameters – self-care, interpersonal activities, communication and understanding, and work. Mental disability is recognised as mental illness which hampers human functioning in social, economic, physiological, cultural aspects of life – or anyone scoring more than a 7 on the IDEAS assessment. However, a key challenge lies in the lack of clarity on the frequency and duration of testing to diagnose mental illness, furthermore continuous testing is required to establish disability, further enhancing its inaccessibility.

According to the law, disability due to mental illness can be established during the initial visit with the appropriate authority if the diagnosis is complete. However, for neurological disorders, the Rehabilitation Committee of Indian Psychiatry Society recommends scoring the duration of illness over a period of two years following onset.

For learning disabilities, the Ministry of Social Justice and Empowerment recommends a minimum age of one year before certification can take place. Children between one and five years can be diagnosed with Global Developmental Delay (GDD). These infant growth parameters are evaluated on a global scale in the presence of a paediatrician and a psychiatrist. Children above the age of five can be diagnosed with Intellectual Disability (ID). GDD and ID are both chronologically framed entities in a child’s life, with GDD characterised by two or more developmental delays, while ID is diagnosed by psychometric testing (Srour et al. 2020). About 3% of children worldwide have either GDD or ID. In India, summary prevalence of ID was established to be 2% in 2022 (Russell et al. 2022).

The law also recommends the NIMHANS (National Institute of Mental Health and Neurosciences) battery test as the appropriate screening and diagnosing test, even though it has been criticised for its limitations. The battery was developed based on a limited sample size and doctoral research at NIMHANS, and is also constrained by its reliance on the English language and Western contexts.

In 2015 an alternative test called the Dyslexia Assessment for Languages in India (DALI) was introduced. DALI has been lauded for its successful results by the National Brain Research Centre and UNESCO. School counsellors and professionals have been using DALI for assessment, and have spoken at length about its benefits (Jyoti 2019). In 2019, the Centre of Excellence in Mental Health at the Dr Ram Manohar Lohia Hospital, Delhi initiated a project to compare the results of DALI and NIMHANS battery tests. Unfortunately, there are no updates on this project, even after the successful experience in the field which reveals the suitability of DALI.

Costs of certification

Aside from the debate on the duration and selection of appropriate tests, there is also a more pressing concern – that of access to tertiary healthcare centres. In an interview with a school counsellor from Delhi with ten years of experience, it was made clear that obtaining disability certification has become progressively more challenging over time. Most tertiary health centers that offer appropriate care and have the institutional resources to establish certification boards remain inaccessible, due to government hospitals’ staff being overworked, and private hospitals charging significantly higher fees, making them unaffordable for many.

A clinical psychologist in-training in Delhi pointed out that, at present, one of the few tertiary hospitals providing disability certification in the city is the RML Hospital, where appointments need to be scheduled one and a half years in advance. Other tertiary care centres are private hospitals, where the same facilities cost exponentially more and is out of reach for struggling families. While there is no clear data on the difference in certification costs, the 75^th Round of the National Sample Survey (NSS), 2017-18, revealed that the average cost of hospitalisation for psychiatric and neurological ailments was Rs. 26,843 (Mahashur et al. 2022). There is a vast difference between cost of treatment in public and private hospitals, ranging from Rs. 7,235 in public hospitals to Rs. 41,239 in private hospitals (Math et al. 2019). Additionally, studies also show that personal expenditure for attending tertiary care centres ranges from of Rs. 2,763 to 11,063 per month depending on the facility accessed and severity of the disability.

Social implications and policy concerns

The process of establishing disability, from testing to tertiary care, are often not covered by social security schemes. An education coordinator at a school for disabled students pointed out that they urge families to start procuring a disability certificate for school leaving examinations while students are still in Standard 8 – two years before they are needed. However, even when families are educated about these delays, inherent social discrimination and a lack of mental health literacy hinders progress. These obstacles often result in delays and, in some cases, lead to dropouts.

These policy lapses create significant barriers to accessing the necessary care and social benefits to manage disability. Three policy concerns need to be addressed promptly. First, the healthcare machinery need to be responsive to testing requirements. Policy decisions on administered tests and required processes must be subject to a periodic review. Second, the administered batteries of tests need to be updated and evaluated on their effectiveness. Lastly, the workload at government tertiary health centres needs to be addressed, taking into account both personnel capacity and the necessity of certification. This requires accurate data on the prevalence of mental health conditions and disease burden – without it, there can be no lasting results.