Secondary Logo

Journal Logo

ORIGINAL ARTICLE

Sociodemographic and clinical profile of patients receiving disability certificates for psychiatric disorders

An Indian Psychiatric Society Multicentric study

Sivakumar, Thanapal; Jadhav, Prabhu; Nabi, Junaid1; Tripathi, Adarsh2; Goyal, Shri Gopal3; Munda, Sanjay Kumar4; Sarkar, Sharmila5; Subramanyam, Alka A.6; Oswal, Rajat M.7; Ramasubramanian, Chellamuthu8; Chakrabarti, Subho9; Kattimani, Shivanand10

Author Information
doi: 10.4103/indianjpsychiatry.indianjpsychiatry_236_22
  • Open

Abstract

INTRODUCTION

The Persons with Disabilities (PWD) Act 1995 recognized seven disabilities, including mental retardation [old term for intellectual disability (ID)] and mental illness (MI).[1] In 2016, the PWD Act 1995 was replaced with the Rights of Persons with Disabilities (RPWD) Act 2016.[2] The Act recognizes four psychiatric disabilities: mental illness (MI), intellectual disability (ID), autism [autistic spectrum disorder (ASD)] and specific learning disability (SLD).[2]

In 2018, the Government of India notified guidelines for evaluation and procedure for certification of disabilities under the RPWD Act 2016.[3] As per the guidelines, if the person fulfils the criteria for benchmark disability, the medical board in the authorized hospital issues a disability certificate (DC). The DC with benchmark disability is required to avail various welfare benefits. Currently, only government hospitals are authorized to issue DC in most states.[4] However, in Tamil Nadu, some non-governmental organizations (NGOs) are permitted to issue DC.

Published studies from Delhi, Mangalore and Bengaluru report that more DCs are issued for ID than MI.[56789] In contrast, a study from Puducherry reports that more certificates were issued for MI followed by ID.[10] All these studies were carried out in government hospitals, and the sample size of DC issued across centres varied from 169 to 2448 over 1 to 5-year periods.[5678910] One study focused on DC issued for adult patients only.[8] Other common trends are seen in the published studies from tertiary centres, and more males were issued DC than females,[678910] unlike community study.[5] Most of these studies were carried out before the latest government guidelines[4] were issued.[567] None of the studies published after the notification of guidelines reported DC issued for SLD[8910] and ASD[810] except in one study.[9]

All the studies have been from single centres, have not included all the psychiatric disorders eligible for disability certification,[3] and do not provide a comprehensive national picture as per RPWD Act, 2016. Accordingly, this study aimed to assess the sociodemographic and clinical profile of patients receiving DC for psychiatric disorders in several centres spread across different regions of India.

MATERIALS AND METHODS

The Indian Psychiatric Society funded this study. Initially, 13 centres showed interest in participating in the study, but finally, 11 centres participated. There were three centres (Kashmir, Chandigarh and Bikaner) from the North zone, one centre (Lucknow) from the central zone, two centres (Ranchi and Kolkata) from the east zone, two centres (Vadodara and Mumbai) from the west zone and three centres (Bengaluru, Puducherry and Madurai) from the south zone. Seven centres were in general hospital psychiatry settings, including two centrally funded institutes (Chandigarh and Puducherry) and five from state government medical colleges (Bikaner, Lucknow, Kolkata, Vadodara and Mumbai). Two centres were from centrally funded mental hospital settings (Bengaluru and Ranchi). One centre was from an NGO setting (Madurai). As private clinics/hospitals are not allowed to issue DC in India, they were not included in the study.

Data was collected on a predesigned uniformly used datasheet across centres for the calendar year 2019. The sociodemographic and clinical details of patients issued DC in 2019 were retrieved from hospital records. All data were entered and analyzed with Microsoft Excel software. The study was approved by the IPS Ethics Committee and local ethics committees of the respective centres.

Statistical analysis

Descriptive analysis was computed using mean and standard deviation with range for continuous variables and frequency with percentage for ordinal and nominal variables. The Chi-square test was applied to check the relationship between categorical variables. However, the Kruskal–Wallis test is the non-parametric equivalent of an analysis of variance used as the assumption of homogeneity of variance between the groups is not met.

RESULTS

Table 1 shows the distribution of DC issued across 11 centres from January 2019 to December 2019. The number of DC issued varied across centres: the highest number of DC were from Bengaluru, followed by Kashmir. The least was from Puducherry. Of the 2018 DC included, 500 were from the north zone, 219 from the central zone, 320 from the east zone, 223 from the west zone and 756 from the south zone.

T1-3
Table 1:
Distribution of DCs across centres in 2019

Table 2 shows the sociodemographic profile of patients issued DC. The mean age was 26.82 years. Most DCs (90%) were issued to those <50 years of age. Two-thirds of DC were issued to males. More than half of the DC were issued to residents of the same district as the hospital. Only a third of patients receiving DC belonged to rural areas. Nearly all except 9 (0.5%) DCs were issued for benchmark (≥40%) disability.

T2-3
Table 2:
Sociodemographic profile of patients issued DCs in 2019

Table 3 shows the clinical and sociodemographic profile of patients issued DC for various psychiatric disorders. More than two-thirds of DC were issued for males. The mean age was lowest for ASD (12.51 years), followed by SLD (15.56 years). The mean age for issuing DC was highest for MI (39.2 years). The majority of DC for ASD, SLD and multiple disabilities were issued for patients aged <18 years. Unlike MI and ID, most patients receiving DC for ASD, SLD and multiple disabilities were above the poverty line.

T3-3
Table 3:
Sociodemographic and clinical profile of DCs issued for various psychiatric disorders across 11 centres

Table 4 shows the sociodemographic and clinical profile of DC issued across 11 centres. The mean age for issuing DC was lowest in Bikaner (19.4 years) and highest in Puducherry (40.65 years). A male preponderance among DC issued across centres except for Puducherry (68% vs. 44%). Residents of a different state than the hospital accounted for most DC issued in Puducherry (62%), Chandigarh (53%) and Ranchi (40%). Rural patients accounted for most DC in Lucknow (97%), Bikaner (57%) and Chandigarh (53%). Recipients of DC were primarily single, with less than primary school education across most sites. DC was mainly issued to people below the poverty line except in the Bikaner site. ID accounted for most DC issued across centres except Kashmir, Madurai, Puducherry and Mumbai. In Kashmir (79%), Chandigarh (63%), Madurai (49%) and Puducherry (82%), the most DC issued was for MI. ASD and SLD were the most common conditions certified for disability in Mumbai (26% each). Schizophrenia was the most common MI certified for disability across centres except Kashmir (where bipolar affective disorder was the most common MI to be certified) and Chandigarh (where dementia was the most common MI to be certified).

T4-3
Table 4:
Sociodemographic and clinical profile of DCs issued in 11 individual centres

Table 5 shows the breakup of DC issued for various MI across 11 centres. Schizophrenia, bipolar affective disorder, dementia and obsessive-compulsive disorder accounted for 86% of DC issued for MI across 11 centres.

T5-3
Table 5:
Psychiatric diagnosis for patients issued DCs as a MI in 11 individual centres

DISCUSSION

Our multicentric study investigated the sociodemographic and clinical profile of persons with MI who were issued DC (n = 2018) in 2019. The study was conducted across 11 centres distributed across different zones/regions of the country.

There is a wide variation in the number of DC issued across centres. Variation may be due to differences in the catchment area, the population of the city, presence of other centres issuing DC in the locality, certification in camps, frequency of meeting of the disability board at different centres, patient-related factors (such as poor awareness), procedural factors (such as the tedious process of getting welfare benefits, patients approaching tertiary centres for second or third opinion) and health professional-related factor (such as poor awareness among mental health professionals, focus on clinical issues rather than disability certification) may also account for the differences.[9]

Nearly all except nine DCs were issued for benchmark (≥40%) disability. These nine DCs were issued by the Mumbai centre to facilitate local train concessions.

Females accounted only for a third of DC issued. Under-representation of females has been reported by previous studies from tertiary centres[678910] except Puducherry[10] and has been attributed to geographic and sociocultural factors.[8] Males receive preference in access to healthcare and, thereby, the treatment of psychiatric disorders. Earlier studies reported that males received treatment earlier and had better follow-up and regular treatment than their female counterparts.[11] Due to cultural, social and economic reasons, psychiatric disability in a male may be considered more disabling to the family than in a female. Therefore, female patients may be relatively ignored. Anecdotally, families are reluctant to avail DC for females as it is a record of a disability and may affect future marital prospects. The reasons for the under-representation of DC among females need to be studied prospectively.

Overall, rural areas accounted only for a third of DC issued. The present study was conducted in tertiary care centres located in urban areas which may have contributed to the under-representation of patients from rural areas. In addition, those from the rural areas may have availed DC in nearby district/taluk hospitals primarily through disability certification camps. Interestingly, rural areas accounted for 97% of DC issued in Lucknow, and half of DC issued from Bikaner, Chandigarh and Kashmir. The catchment area of respective centres may also have contributed to the difference.

The mean age at the time of certification for developmental disabilities (ID, ASD and SLD) is lower than MI. These neurodevelopmental disorders are diagnosed early in childhood.[9] Early certification of disability in these conditions may be due to increased awareness and a limited scope of achieving remission.[12] As per the Government of India office memorandum dated 08/05/2020 (File no 38-01/2020-DD-III), persons diagnosed with SLD on NIMHANS SLD battery shall be considered persons with benchmark disability, i.e., ≥40% disability. Hence, all persons with SLD have been shown as having 40% disability across centres.

For Puducherry, Chandigarh and Ranchi, residents of a different state than the hospital that accounted for most DC issued could be due to the catchment areas of these hospitals. Chandigarh and Puducherry are Union Territories and serve states surrounding them. In addition to being a Union Territory, city and district, Chandigarh also serves as the capital for Punjab and Haryana. In the past, Ranchi catered to the mental health needs of undivided Bihar. It is now the capital of Jharkhand state, carved from Bihar. However, it continues to serve Bihar.

ID accounted for most DC issued across seven centres. Many parent organizations and special schools have created awareness about DC and associated welfare benefits, which could be the reason.[4] Early referral through teachers/schools, school health programmes (for scholastic difficulties) and doctors (for delayed milestones) could also have contributed to the findings. In addition, IQ assessment is part of the workup of a person with ID.[9] The DC also entitles the person to avail a range of benefits under the National Trust Act 1999.[9] In Puducherry, the departments of paediatrics and psychiatry issue DC for children with ID separately.[10] This may account for the low number of DC issued from the department of psychiatry in Puducherry. The Mumbai centre is renowned for child mental health services, and this might have led to ASD and SLD being the most common condition certified for disability, followed by ID. Both Kashmir and Madurai centres issued more DC to MI than ID. This may be due to differences in the catchment area and the profile of services offered. ASD and SLD are new disabilities that are included recently in the RPWD Act 2016 and are under-represented in the number of DC issued across centres. Lower numbers may also be due to difficulties assessing these conditions for disability certification like expertise available, tools available and demand for such certificates. The NIMHANS SLD battery is not available in all Indian languages.

The original Indian Disability Evaluation and Assessment Scale (IDEAS) drafted by the rehabilitation subcommittee of the Indian Psychiatric Society had proposed limiting DC to four MI: schizophrenia, bipolar affective disorder, obsessive-compulsive disorder and dementia. The Gazette of India notification on disability assessment using IDEAS defines MI as a substantial disorder of thinking, mood, perception, orientation or memory that grossly impairs judgment, behaviour, 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.[3] Hence, IDEAS can be used for disability quantification in any MI except ID. This includes conditions like substance use disorders. Kashmir and Mumbai centres [Table 4] have been issuing DC for SUD to avail benefits. Notably, the original set of four MI accounts for 86% of DC issued for MI across centres. Schizophrenia (9 centres), bipolar affective disorder (1 centre) and dementia (1 centre) were the most common MIs for which DC was issued. However, many disorders, including obsessive-compulsive disorder, are under-represented in DC issued across centres. Unlike developed countries like the United Kingdom, where common MIs account for 70% of those with welfare benefits,[12] common MIs like depression and anxiety disorders account for only a tiny subset of DC across centres (except Kashmir). A similar observation is made by previous studies also. Lack of awareness among the public and the tendency of mental health professionals to certify severe MI, which may be perceived as more disabling, may have contributed to such a trend.

Strengths

The present study reported the profile, on a predesigned uniformly used datasheet across centres, of DC issued in 2019 from 11 tertiary care centres across the country, had a large sample size and reported differences in the profile of DC issued across centres.

Limitations of the study

As this was a retrospective study, we could not verify if the DC was issued for the first time or renewed. The profile of patients for whom DC was issued in tertiary care centres may be different from community settings. Some data on education status, marital status, residence, locality and socioeconomic status was missing from some centres as these details were not maintained in a uniform format.

CONCLUSION

This study suggests wide variation in the number and clinical profile of DC issued across centres. Overall, males account for two-thirds of DC issued across centres. ID accounts for the most number of DC issued, and schizophrenia is the most common MI for which DC is issued. There is a need to study welfare benefits availed with DC prospectively.

Financial support and sponsorship

This study was funded by the Indian Psychiatric Society (funded amount: Rs 2 lakhs).

Conflicts of interest

There are no conflicts of interest.

REFERENCES

1. Bhargava R, Sivakumar T, Rozatkar A Persons with disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 Chavan BS, Gupta N, Arun P, Sidana A, Jadhav S Community Mental Health in India 1st ed New Delhi u.a. Jaypee Brothers Medical Publishers 2012 169–75
2. Ministry of Law and Justice, Government of India. The Rights of Persons with Disabilities Act, 2016. Ministry of Law and Justice, Government of India 2016 Available from: https://www.indiacode.nic.in/bitstream/123456789/2155/1/A2016_49 [Last accessed on 2022 May 19]
3. Ministry of Social Justice & Empowerment D of E of P with D. Guidelines for the purpose of assessing the extent of specified disability in a person included under the Rights of Persons with Disabilities Act, 2016 (49 of 2016). Government of India 2018 Available from: https://upload.indiacode.nic.in/showfile?actid=AC_CEN_25_54_00002_201649_1517807328299&type=notification&filename=Guidelines%20notification_04.01.2018.pdf [Last accessed on 2020 Jun 09]
4. James JW, Basavarajappa C, Sivakumar T, Banerjee R, Thirthalli J Swavlamban Health Insurance scheme for persons with disabilities:An experiential account Indian J Psychiatry 2019 61 369–75
5. Kashyap K, Rao A, Thunga R, Balamurali N Trends of utilization of government disability benefits among chronic mentally ill Indian J Psychiatry 2012 54 54–8
6. Yadav A, Rastogi R, Udey B Mental disability:A retrospective study of socio-clinical profile of patients seeking disability certificate at a tertiary care centre in Delhi Epidem Int 2017 2 19–25
7. Balhara YPS, Gauba D, Deshpande SN Profile difference between male and female psychiatric patients seeking certificate of disability Oman Med J 2011 26 410–5
8. Sen MS, Deep R, Nair V, Chadda RK Audit of requests for disability certification of adults received at a tertiary care general hospital psychiatry unit Indian J Psychiatry 2021 63 495–9
9. Jadhav P, Sivakumar T, Gupta A Sociodemographic and clinical profile of patients receiving disability certificates as per Rights of Persons with Disabilities Act 2016 for psychiatric, neurological, and neurosurgical disorders at tertiary care centre J Psychosoc Rehabil Ment Health 2021 8 29–34
10. Nagarajan P, Bharadwaj B, Kattimani S Five-year trend in issuing disability certificates from a general hospital psychiatric unit in South India Indian J Psychol Med 2020 42 451–5
11. Lahariya C, Singhal S, Gupta S, Mishra A Pathway of care among psychiatric patients attending a mental health institution in central India Indian J Psychiatry 2010 52 333–8
12. Jadhav P, Sivakumar T, Gupta A Duration of illness at the time of disability certification for mental illness and neurological disorders Indian J Psychol Med 2021 43 459–61
Keywords:

Autism; certificate; disability; intellectual disability; mental illness; multiple disabilities; specific learning disability

© 2022 Indian Journal of Psychiatry | Published by Wolters Kluwer – Medknow