World over, an estimated 15% of the population experience some degree of disability, with mental illnesses contributing up to 25% to the disability. As per Census of India (2011), about 27 million people live with disability in India, constituting about 2.2% of Indian population. Over 2 million of the population has disability, due to psychiatric causes alone.
The disability of persons with mental illness was not recognized for the purpose of benefits until the Persons with Disability (PwD) Act, 1995, came into existence, though its implementation continued to be a problem. India, as a signatory to the United Nations Convention on the Rights of Persons with Disabilities, has enacted the Rights of Persons with Disabilities (RPwD, 2016) Act, which follows a rights-based approach with a more expanded scope of disabilities and a clearly defined role of institutions. The certification toward “benchmark disability” (≥40%) enables the person to get special provisions such as educational and employment reservations, benefits in land and housing schemes, and social security benefits, among others.
The studies on disability in Indian context have not focused on trends or pattern of disability certificates or on service utilization aspects of such legal certifications. Such data on disability certificates from Indian centers have been reported in only few prior studies.
With the enactment of the RPwD Act in December 2016 and increased efforts to provide assistance to persons with certifiable disabilities, the data pertaining to disability certificates issued by hospitals in India can be useful to understand the profile of patients availing the certification and the service utilization aspects. This is important to raise awareness among the community about availability of relevant benefits available to the affected population so that they can apply for such a certificate from the designated centers so as to get their due entitlements from the State.
MATERIALS AND METHODS
The study was conducted with approval from the Institute Ethics Committee. Anonymity was ensured in conformity to the Declaration of Helsinki.
The study aimed to assess and describe the pattern and profile of disability certifications based on 4-year audit (January 2016 to December 2019) of the records at a state run tertiary care general hospital psychiatry unit in North India.
Inclusion criteria included all adult individuals (≥18 years) attending the service who were issued a disability certificate between January 2016 and December 2019.
As per standard protocol, an individual seeking a disability certificate submits an application on a prescribed form along with specified documents such as proof of identity. This is followed by disability evaluation and clinical evaluation on an appointed date. Disability is assessed as per the Indian Disability Evaluation and Assessment Scale (IDEAS)12] for mental illness. Intellectual ability and intelligence quotient are assessed as per standardized assessments by the mental health professionals. Those with a psychiatric diagnosis and ≥40% disability are issued a disability certificate.
Details of all disability requests and certificates are recorded in a disability register maintained by the nursing officer in the psychiatry outpatient service. A duplicate copy of the certificate is also kept for records.
The facility has been assigned as the nodal hospital for issuing disability certificates for south-east district of Delhi with other hospitals catering to rest of the districts in Delhi. As per the Institute policy, disability certificates are also issued to registered patients in long-term follow-up coming from within or outside Delhi.
Information on available parameters (age, gender, residence area, percentage disability, and psychiatric diagnosis) was retrieved and coded in the excel sheet. Statistical analysis was done using SPSS (version 20; IBM Corp, Armonk, NY, USA).
A total of 356 adults were issued disability certificates over the 4-year period. The demographic profile is shown in Table 1. Age ranged between 19 and 74 years, with three-fourths being below 40 years of age.
Table 1 also shows annual trends and pattern of disability. Figure 1 shows the distribution of diagnosis, for which certificates were issued.
The profile was compared across the two major groups, namely, intellectual disabilities and severe mental illnesses [Table 2].
This paper describes the pattern and profile of disability requests for disability certification received from adult patients at a tertiary care GHPU. Findings from this 4-year audit add to the scarce literature on service utilization for psychiatric disabilities. Some of the important findings include underrepresentation of the females (30.1%) and of patients with severe mental illness (41.7%) in the sample and a long delay between average age at certification (30 years) and attainment of adulthood (i.e., 18 years) for intellectual disabilities. The gender gap was even wider for patients with severe mental illnesses (24% in female vs. 76% in males). Intellectual disability (58.3%) was the most frequent diagnosis followed by schizophrenia (31%), with lesser representation of others. The overall numbers availing services appear to be lower relative to the community burden, though there has been a steady increase over the past 3 consecutive years.
The findings are not much different from similar studies published from other centers in India. The study by Kashyap et al. reported combined data of disability certificates issued at a government hospital from Mangalore and peripheral community camps over a 3-year period (intellectual disability = 1794; mental illness = 294). That study observed that males and females were represented roughly equally, which may be due to merger of community data. Another recent study from Pondicherry based on 256 disability certificates issued over 5 years too revealed a better representation of females (45% females; 56% males). There are differences in gender profile in our study (30% females) from the Pondicherry as well as from another Delhi-based study which reported a skewed male-to-female ratio of 4:1 among a total of 169 certificates issued for schizophrenia over a 5-year period. Recently published all-age disability data (n = 2,376, 2 year period) from the National Institute of Mental Health and Neurosciences, Bengaluru also found that males constituted two-thirds of sample, similar to finding from our study. The exact reasons for female under-representation in our study, whether geographic, sociocultural or other factors, is unclear. However, females living with mental disabilities remain marginalized. They can benefit the most from disability certification, but it appears that the penetration of disability benefits and schemes remains low for the women.
Intellectual disability and schizophrenia remain the most common reasons for seeking disability certificate at our center. A relatively small proportion of requests were for other mental disorders such as bipolar disorder (BD) or obsessive–compulsive disorder (OCD). The previous study by Kashyap et al. also had intellectual disability as the most common cause of certification, while Nagarajan et al. reported schizophrenia as the most common diagnosis form their setting. In the study by Jadhav et al., around half of the certificates across all-age sample were issued for intellectual disability (51.9%) followed by mental illness (39%). Available literature points to existence of significant disability in a spectrum of psychiatric disorders, though such a diverse representation is not seen in disability certifications. A hospital-based study assessing disability using IDEAS at 0, 6, and 12 months in seven different ICD-10 mental disorders found that several mental disorders such as depression or OCD had a significant disability persisting over the entire year.
The disability certificates can be issued for all mental illnesses irrespective of the diagnosis, provided it crosses a certain threshold. Certain issues have been raised in assessing mental disability for certain illnesses, for example, calculation of “total duration of illness” in those with episodicity, duration of an “optimal treatment trial” before certifying disability, validation aspects of IDEAS for mental illnesses (other than schizophrenia, BD, OCD, and dementia), etc. As stated in section 56 of the RPwD Act, the guidelines for assessing extent of disability were released in January 2018 and IDEAS has been notified for measuring the extent of disability with any mental illness. Till date, however, it appears that several disorders remain under-represented in disability requests. Future studies might reveal if the pattern undergoes any changes over the coming years, especially with a higher emphasis placed on rights under the RPwD Act.
Long delay was observed between average age at certification (30 years) and attainment of adulthood (i.e., 18 years) for intellectual disabilities. To reduce the barriers to access, the process of applying for certificate for mental illness has become simplified (e.g., requirement of a single psychiatrist as opposed to a board). Still, the benefits are rather under-utilized and awareness remains suboptimal. Even the treatment-seeking patients, at times, remain unaware for a long time.
The under-utilization of disability benefits has been discussed by several authors. Stigma, poor knowledge, apprehensions about legal misuse of such certificates, denial of disability etc., have been specified as some of reasons. Compared to burden in community, the numbers coming to hospitals to seek disability certificates remain on lower side. There is a need to enhance awareness at primary care and community levels from where identification and referrals can be made to designated centers in a given state.
Those who receive disability certificates constitute only a small proportion of outpatients attended annually, as also highlighted in other studies. Similar finding was observed at our center. The psychiatry department provides about 80,000 patient consults, including 15,000 new patients in a given year. The numbers receiving disability certificates appear to be relatively less, which is partly explained by the fact that a large proportion of outpatients consult for milder problems and/or are referred from other medical or surgical departments of the institute. Some of them might be visiting our institute solely for treatment purposes and may have availed the certificates elsewhere in Delhi. There is also a need to address patient-related factors, procedural factors, and health professional-related factors as discussed in previous studies, which could potentially help to enhance the screening, assessment, and certification for disability in various settings.
This audit provides certain observations on service use and pattern of mental disability certificates. Available data from our and other centers consistently point to a female under-representation, delay in seeking certifications and potential under-utilization of services. Many disorders (e.g., OCD) remain under-represented in spite of their association with significant disability. Such disability data can help to understand last 5 year or decadal trends of service utilization, and facilitate comparison with other centers across India. Having a systematic database for disability would certainly help to guide the psychosocial or rehabilitation needs in the country. The recent initiative toward Unique Disability ID cards seeks to improve the access and coverage of the disability certificates by streamlining the process, though its impact on psychiatric certifications remains to be seen. Future studies can investigate the potential barriers faced by persons with disabilities along with strategies to improve awareness in community. The issues or challenges faced by professionals in assessment of disabilities and limitations of available tools also need to be suitably resolved.
Certain limitations must be kept in mind while interpreting the study data. The study was a register-based retrospective review and many clinical variables such as illness duration or demographic variables such as marital status were unavailable. As this is a retrospective study, it is difficult to comment if adults were certified for first time or had come for renewal of disability certificates. The child population was not included as those services are organized separately. The study was restricted to psychiatric certificates within institute, and other forms of disability such as hearing, visual, neurological, locomotor disability, etc., were certified by other respective departments in institute. Further, the findings from tertiary care center at north India are not likely to be generalizable to other settings and states.
To conclude, this audit adds useful information on the pattern of disability certificates issued at a tertiary care hospital in north India.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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