Five-Year Trend in Issuing Disability Certificates from a General Hospital Psychiatric Unit in South India.

BACKGROUND: Mental disability is a common condition but is considered as an invisible disability. The disability certificate in psychiatry remains underexplored. Some reasons are issues of confidentiality, stigma, lack of awareness in the public, and the hesitancy in the mental health professionals. We aim to provide a brief profile of patients with mental illness issued disability certificates from a psychiatric unit over a five-year period (2013-2017).
METHODS: Our retrospective study is based on the data available from the copies of the issued disability certificates from a psychiatric unit that functions in a multispecialty tertiary care teaching government hospital in Southern India. Patients undergoing treatment in psychiatry apply for a disability certificate to the medical superintendent of the hospital. Each applicant undergoes a detailed workup to ascertain the diagnosis, and the mental disability is assessed using Indian Disability Evaluation and Assessment Scale (IDEAS). Those with intellectual developmental disorder (IDD) are assessed by a clinical psychologist for quantifying intelligence quotient, based on which the disability certificate is issued. Data were extracted and analyzed using SPSS. Descriptive statistics were used.
RESULTS: Over five years, 258 disability certificates were issued. A total of 218 were for mental illness and 40 were for IDD. Schizophrenia was the commonest primary diagnosis. There was no gender predominance, nor the influence of gender on different domains of IDEAS except on work domain dysfunction due to mental illness. The validity period was not mentioned in 81% of the issued certificates for mental illness.
CONCLUSIONS: This descriptive study found a lower number of certificates issued from the psychiatric unit. Schizophrenia remains the main psychiatric diagnosis for which a disability certificate was issued. We did not assess the utilization pattern of the issued certificates.

Key Messages:

Schizophrenia is the most frequent condition receiving a disability certificate for mental illness. There is a need to increase disability certificates from general hospital psychiatric units, and the certificates should mention the period of validity. Involvement with stakeholders is desirable to increase the accessibility and enhance the privacy of disability certificates.

Disability means any long-term physical, mental, intellectual, or sensory impairment, which, in interaction with barriers, hinders a person’s full and effective participation in society equally with others.1 Persons with disability are also referred to as differently abled persons. Around 19.4% of the adult population in the world have moderate or severe disability, and 3.8% have severe disability.2 In India, 2.21% of the population have disability; among this, 3–6% is due to mental disability as a result of having either mental illness or intellectual developmental disorder (IDD).3 Disability due to mental illness is known as an invisible disability. Service providers are not attuned to the disability in the patients. Moreover, many of those eligible for a disability certificate are neither aware of nor willing to acquire the same. The community prevalence of mental disability is around 2.3%,4 as per assessment using the Indian Disability Evaluation and Assessment Scale (IDEAS) developed by the Indian Psychiatric Society.5 IDEAS consists of assessment in four domains, namely self-care, interpersonal activities (social relationships), communication and understanding, work (related to employment/housework/education). Additional scoring is done for the duration of illness. Patients who score ≥7 are given a disability score of ≥40% and are eligible for disability benefits as per guidelines issued by the Ministry of Social Justice and Empowerment in 2002.[5]

Prevalence of disability including mental disability varies across the studies.[2-4] Varying prevalence of disability is due to differing definitions used. A recent review[6] called for improving the validity and reliability of India’s disability estimates, after concluding that the current estimates from the census and surveys seem much lower than what would be expected at the population level.

Disability certificate is mandatory for availing various government scheme benefits: pension, rail concessions and income tax deductions, treatment insurance, financial aids for education, housing, and employment. Only 35% of the persons with disabilities had certificates in 2010.[7] This is likely to be much lower for mental disability for the following reasons: the presence of psychopathology, cognitive impairment, poor communication, fear of stigma, risk of impingement on the right to privacy, and the lack of awareness in the mental health professionals and public.[8, 9]

There is limited data on how disability certificates are issued and utilized for psychiatric conditions. With the introduction of new Rights of Persons with Disability (RPWD) Act, 2016,1 two more conditions are eligible for disability certificate from psychiatry: autism spectrum disorder (ASD) and specific learning disorder (SLD). Disability certificate in psychiatry is usually requested for mental illness or IDD. Kashyap et al. studied the disability certificates issued from a psychiatric unit over three years.[10] Most were for IDD. Of the various benefits available, the certificates issued were most commonly utilized for availing the disability pension. However, such data helps us understand how government policies have reached the disabled persons and what factors may be influencing their reach. In this article, we describe the profile of persons based on the mental disability certificates issued over a five-year period from a general hospital psychiatric unit.

Materials and Methods

This is a retrospective chart review based on the analysis of mental disability certificates issued over a five-year period (2013–2017).

Setting

Our Psychiatric unit functions in a multispecialty, government-funded teaching hospital and provides outpatient care, inpatient care, and 24-hour psychiatry emergency services. About 250 new patients register each month. About 2,500 to 3,000 patients are estimated to be on regular follow-up for chronic conditions in our outpatient department. We have about 450 admissions to our 28-bedded in-patient facility each year. Any adult person taking psychiatric treatment can apply for a disability certificate to the medical superintendent (MS). The treating team usually makes the patient aware of this facility during the clinical assessment and the psychoeducation sessions. Financially poor patients who require to purchase medications not available in the hospital are encouraged to apply for disability certification if their disability is significant (above 40%). In a small number of cases, the family themselves approach for the disability benefits. This usually happens when there is a requirement of certification for enrolling in a special school and for obtaining certificate of permanent disability that would enable pension transfer to the patients whose parents are central government employees. Department of Pediatrics at our institute also issues disability certificates for children with IDD.

Procedures Followed

A detailed clinical assessment, followed by disability assessment on IDEAS, was done. IDEAS assesses the impact of mental illness in the following domains: self-care, interpersonal activities, communication-understanding, and work. Each is scored on a Likert scale of 0–4. Higher scores indicate a higher negative impact in that domain. The duration of illness is also given a score ranging from 1 to 4. IDEAS domain-wise total score and duration of illness score are added to give Global IDEAS scores. Global IDEAS score can be converted into disability percentage from the conversion table (Gazette notification).[5] Patients with 40% and above disability are eligible for government benefits.

Those with a primary diagnosis of IDD underwent IQ assessment. This was done using Vineland Social Maturity Scale (VSMS) or Binet Kamat Test (BKT), by a clinical psychologist, so as to assess the severity of IDD and then the level of disability as per the Gazette notification. On the day of the issue of disability certificate at the Department of Psychiatry, the patient’s clinical case record is reviewed, patient and caregiver interviewed, and the patient examined during the scheduled time. Disability scoring is done by senior resident/psychiatric social worker/clinical psychologist and independently reviewed by the consultant psychiatrist. Copies of the certificate are sent to MS office for dispatch to the patient’s home. The applicant has to approach their native district’s disability welfare office, located usually in the government district hospital. Their name is registered there and the disability card is issued to avail different disability benefits. Each certificate mentions the name, age, gender, residential address, name of the psychiatric condition, the tool used for assessing the disability, disability score, and percentage and validity of the issued certificate. The issued certificate also contains photo, two identification marks, and signature/thumb impression of the patient.

Data Extraction

Details of age, gender, district of residence, and duration of illness and in the case of mental illness, scores on the subdomains of IDEAS were entered. The validity period of the certificate, whether mentioned or not, was also noted for the purpose of analysis. Data extraction was done from the copies of the issued certificates kept in a confidential folder in the Department of Psychiatry. Only the person involved in the data extraction had access to the data. Name, addresses, phone number, and hospital record number, which may lead to a potential breach in confidentiality, were not collected. This study was approved by the Institute Ethics Committee, but it explicitly refused permission to contact the persons.

For people with multiple disabilities, a medical board is constituted by the MS. It consists of specialists from several departments, depending on the nature of the various ailments the patient has. Most applications received by our psychiatric unit are either for mental illness or for IDD. Institute Ethics Committee approved the study.

Results

Over the five-year period, 258 certificates were issued by the Psychiatric Unit. Out of these, 40 were for IDD as the primary diagnosis. Among patients with IDD, 21 were in mild, 10 in moderate, and 9 in severe IDD category. However, their IQ scores were not mentioned in the certificates. In the remaining 218 certificates that were issued for mental illness, IDEAS subdomain scores were not mentioned in 10 certificates. Hence, we analyzed data from 208 certificates that were issued for mental illness. The year-wise issue of certificates is shown in .

On the y-axis, on the left-hand side is the number of certificates issued, and on the right-hand side is the year of issuance of the certificates.

Each certificate has age, gender, residential address, two identification marks, a recent photo of the patient, diagnosis, disability score on IDEAS or IQ, and disability percentage. These are summarized in and .

Being a tertiary care referral center, we do not have a well-defined service area. Hence, many applicants were from outside the hospital region. However, those who received the certificates from us go to their district hospital to register for disability identity card and benefits. Predominant primary diagnoses were schizophrenia, bipolar disorder, and dementia. IDD accounted for 15.5% of the certificates issued (). The average age of 40 persons with IDD was 22.4 years (SD 12.51, range 4–58 yrs).

There is no minimum cut-off period of illness to be eligible for applying for a disability certificate for the psychiatric condition. In our sample, there was a wide variation in the duration of illness (). Disability due to mental illness was assessed using the IDEAS scale. Work-related domain was most affected in these patients. This also showed significant gender difference with male patients having higher dysfunction ratings in this domain (shown with the asterisk mark in the table), while the rest of the parameters in did not show any difference. The validity of the certificate, if not mentioned, is usually valid for five years in the case of adults. Only 48 certificates had clear mention of the period of validity of the issued certificate. Significantly more cases with the mental illness were issued temporary valid disability certificates compared to IDD group (two-tailed exact significance (P) = 0.028 using Fisher’s exact test. Not shown in the table).

Discussion

We presented here the analyses of 218 disability certificates issued for mental illness from a psychiatric unit over a five-year period. The number of disability certificates issued from our psychiatric unit was smaller compared to the findings of Kashyap et al.,10 who reported an analysis of 2,079 disability certificates. They did run special outpatient clinics and community camps to enhance disability certification.

Approximately 2,500 patients are under regular follow-up for chronic mental disorders, as mentioned earlier in the section “setting,” and are likely to be eligible for disability benefits. Only 10.3% of these eligible persons were issued disability certificates (258/2,500). Reasons for issuing less number of disability certificates could be many, such as stigma, lack of privacy, a convoluted pathway to the benefits, lack of public awareness, and low motivation among the mental health professionals as stated by other authors.[5, 8] Disability certificate is the right of the differently abled persons. The World Health Organization has asked for a multi-pronged intervention to overcome the disabling barriers.2 In our sample, those with at least 40% disability due to mental illness were issued certificates; hence, the disability percentage score range starts from 40% (). In the issued certificates, 159 (72.9%) mentioned moderate disability, 58 (26.6%) mentioned severe disability, and one mentioned profound disability category.

The year-wise trend () shows a peak in certificates issued during August every year. This could be due to the return of full faculty strength after summer vacation in the outpatient department and increased support for certification. Most of the certificates were issued for schizophrenia (56%), followed by those for bipolar disorder (20%). Certificates issued for patients with IDD formed only 15% of our certifications. This is in contrast to the Balhara et al. study11 from Delhi which found that intellectual disability (61%) was the most common condition for which disability certificates were issued, followed by schizophrenia (31%), and there were very few certificates (< 10%) for dementia, bipolar disorder, or obsessive compulsive disorder. Another study from Delhi12 showed that certificates were almost exclusively (95%) issued for intellectual disability, and less than 5% were for mental illnesses. A recent publication from Bengaluru reported that among persons with disability that attended a health insurance scheme enrollment camp, 43% were persons with IDD, while 21% were persons with mental illness.[13] These variations in frequency may reflect differences in the services provided by the various centers. Centers that cater to a larger proportion of child and adolescent patients may have more certifications for intellectual disability. In our hospital, the certification for children with ID is carried out by a joint team of pediatricians and psychiatrists in a separate clinic, and those numbers are not reflected in our data. Our data is mostly for adult patients.

In our study, there was no significant difference between the total IDEAS scores between male and female patients. In work-related subdomain scores, men showed higher dysfunction score than women. This is similar to Balhara et al.,[14] where males had more work-related dysfunction. Such findings could be explained by a slightly lower expectation of role fulfillment from female patients who work in the home context than in men who may be employed outside.

The period of validity of the certificate was not mentioned in the majority (81.4%) of certificates; however, this needs to be mentioned clearly in the certificate.

Among psychiatric conditions, affective disorders contribute much to mental disability in the community.[4] However, the predominant psychiatric condition for seeking a disability certificate was schizophrenia in our sample. This is supported by the findings of Kashyap et al.10

The list of conditions eligible for disability certificate has been expanded to include ASD and SLD. The government guidelines regarding certification of disabilities due to mental illness (February 18, 2002)[5] mentions that as per Section 2(q) of the Persons with Disability Act, 1995, all mental illnesses are eligible for certification of disability. Though substance use disorders are associated with a significant disability, they are not usually certified for this purpose.[15] This could be due to the common misconception that only dementia, schizophrenia, bipolar disorder, and OCD can be certified for mental disability. The public holds a view of substance use disorder as a self-inflicted lifestyle problem.

Comorbid medical illness was seen in only a few cases. The possibilities are that there was none, it was not mentioned in the certificate, or those with medical illness did not apply or were not encouraged for a certificate.

A major limitation of this report is the modest sample size. We did not assess the utilization pattern of the issued certificates. Besides being retrospective, the absence of demographic information such as socioeconomic status, marital status, occupation, and education limits the generalizability of our findings. There is a need for a follow-up study to check whether improving awareness and minimizing barriers to applying for certification results in real-world benefits to the patient and caregiver, in a qualitative design. Allowing a one-member committee to certify single disability and use of Unique Disability ID cards linked with Aadhaar number may increase accessibility and enhance privacy.

The present limited data may, however, be important in the context of the increasing burden of disability and the lack of proper social security measures in the country. This data may help in improving awareness about facilities and pathways available to access and in providing support to people with disabilities. To move forward, it is necessary to know the utilization pattern of issued certificates and their unmet needs. This may require a social problem-solving approach involving key stakeholders such as recovered persons with mental illness, their caregivers, non-governmental organizations working for them, mental health professionals caring for them, and different government agencies involved in the welfare of these persons.

To conclude, over a five-year period, 258 disability certificates were issued from our psychiatric unit in a multispecialty tertiary care government hospital. A total of 218 were for mental illnesses, and among them, schizophrenia predominated. We found that a fewer number of certificates are issued and many do not mention the period of validity. There is a need to improve awareness, make pathways to benefits simpler, and initiate steps to protect the confidentiality of the patients. Frequent auditing of issued certificates from different setups may help improve service delivery and give feedback to the policymakers.

Table 1.

Demographic and Clinical Characteristics as Mentioned in the Disability Certificates (n = 258)

		n (%) / mean (SD)
Gender	Female	118 (45.7)
	Male	140 (54.3)
Age (yrs)		38.43 (11.92)
Residing area	Pondicherry	111 (43.0)
	Outside Pondicherry	147 (57.0)
Diagnosis	Schizophrenia	146 (56.8)
	Bipolar disorder	53 (20.6)
	Dementia	4 (1.6)
	Recurrent depressive disorder	2 (0.8)
	Other diagnoses	13 (5.0)
	IDD	40 (15.2)

IDD: intellectual developmental disorder.

Table 2.

Relevant Data from Disability Certificates for Mental Illness (n = 208)

		Median (IQR)	Mean (SD)	Range
Duration of illness (years)		5(2–10)	6.85(5.56)	1–28
Scores on different domains in IDEAS	Self-care	2(1–2)	1.63(1.01)	0–4
	Interpersonal Activities	2(2–3)	2.32(0.97)	0–4
	Communication and Understanding	2(1–2)	1.87(0.90)	0–4
	Work *	3(3–4)	3.00(1.04)	0–4
Duration of illness score		4(3–4)	3.23(1.05)	1–4
Global IDEAS score		12(10.25–14.75)	12.48(3.02)	6–38
Disability percentage		65(55.0–73.5)	63.75(12.64)	40–95
			n(%)
The validity of the issued certificate mentioned	No		210(81.4)
Validity period in those mentioned (n = 48)	Permanent		5(2.0)
	For two years		1(0.4)
	For five years		41(15.9)
	For ten years		1(0.4)

IQR: interquartile range, SD: standard deviation, IDEAS: Indian disability evaluation and assessment scale. *Significant gender difference in the work-related disability due to mental illness (Mann–Whitney U test, P = 0.000).