Unidentied Persons With Disabilities in India- A Study Based on 76th Round of NSS (2018-19) Data

Background: Identication of the disabled and providing them a disability certicate is the rst step for provisioning educational, employment, and other social benets in a welfare state. Deprivation from disability certicate deprives persons with disability (PwDs) from government policy and programme. Though studies examined the extent, variation, and pattern of disability, no attempt has been made in understanding the extent and variation of unidentied PwDs in India. The study aims to examine the variation in unidentied PwDs by type of disability, state and socio-economic correlates. Data and methods: The unit data from the 76th round (schedule 26) of Nation Sample Survey, 2018 is used in analyses. A total of 1,06,894 disabled across seven types of disabilities; any disability, locomotor, visual, hearing, speech, mental retardation, mental illness, and other disability have been analysed. Descriptive statistics and logistic regression analyses are used. Results: 7 in 10 disabled person in India don’t have a disability certicate. The percentage share of PwDs with a disability certicate varies 12% among those with hearing disability to 47% with mental retardation. Unadjusted odds ratio shows that person with hearing disability (OR=0.30 CI 0.303-0.304) are less likely to hold a disability certicate compare to locomotor disability followed by mental illness (OR=0.52 CI 0.519 0520), and visual disability (OR= 0.74 CI 0.736 0.738). Person with mental retardation are two times more likely to hold the disability certicate (OR 2.05 CI 2.046 2.047) than the visual disabled. States variation in percent share of disability certicate is found to be large. The result depicts that there remains a high variation in the access of disability certicates across states in India. Conclusion: A nationwide drive to include the unidentied disabled is recommended with documentation and inclusion in the administrative processes.


Introduction
Identi cation of persons with disability (PwDs) has always been a challenge to the policy makers mainly due to de nitional dissimilarities and lack of awareness at public and policy level 1,2 . In India, 26.8 million population are found to be disabled, which is 2.2% of the total population registered by Census of India (2011). This is measured by following the medical model through self-reported symptom-based questions. While, recently conducted survey on disability by National Sample Survey (76.25th round) also nd similar prevalence for prevalence in 2018-19, though it follows new de nition and categorization for disability. In the census or surveys, PwDs have been identi ed using several tools and classi cations, despite differential measurement procedure aimed to frame an inclusive development processes in India 3 . Contrast in de nitions are imperative to conclude the exact estimation of PwDs in India 4,5 . The extent of disability is very di cult to measure if not evaluated correctly. Census of India measures disability on medical model. While, the self-reporting on the functional restrictions measured in the surveys limits to justify about the intensity of disability. As there is no established study that determines the threshold for medically approved disability scores in accordance with scores of functional restrictions measured with activities of daily living. Disability certi cate is a registration which identi es potential forms of disability with their level of restriction through prede ned percentage share.
Estimation of disability through an universal and appropriate de nition has remained to be a question in the low and middle income countries 6,7 .
Until now, the major focus of the research and development pertains to infectious diseases, nutritional disparity, and other maternal and child health issues, probably due to persisting burden on the population. With the demographic and epidemiological shifts, a growing interest on ageing and incidence of chronic morbid conditions among demographers, public health researchers or policy analysists led to identify the persons with disabilities. There has been differential in the de nition and conceptual measurement of disability at the global and local level 8 . Poor identi cation of disability would not only give a perspective of poor awareness among individual but also it is a failure to the whole healthcare system. Ultimately, such insu ciency would result into lower likelihood of not getting basic services provided by the state or claiming the basic rights and entitlements of the PwDs 9 . PwDs are prone to suffer from morbidity and functional limitations, thus, lack of access to services due to basic identi cation tools like disability certi cate would enhance the deprivation among them 10 .
The programmes and policies delivered through the disability schemes and bene ts are imperative to target the potential population at rst, but seeking or registering to those services requires a government recognized disability certi cate. The disability certi cate is supposed to be issued by a certi ed medical practitioner, which is likely to be accessed in a noti ed hospital. Besides, Districts Disability Rehabilitation Centres (DDRCs) and PHCs have been assigned to identify the PwDs in the community. To reduce the disability burden the government has elucidated a decentralized plan that directs every primary health center for early identi cation and screening of the PwDs in India. The inactivity and ine ciency of the PHCs can be highlighted here that re ects under-identi cation of disability due to administrative failure to include the targeted population. The failure in the physical infrastructure is also complemented by the lack of knowledge, access, awareness, prede ned deprivation among the demographic and socio-economic groups. A sharp difference in the prevalence of disability has been observed across regions of India 7 , as states are also going through different stages of demographic and epidemiological transitions. Hence, the policy designs and budget allocations for the health system differs depending upon the speci c need of that state. It is also suggested that priorities given to the PwDs in the policy documents can nd different outcomes for the identi cation of the PwDs.
Though, centrally sponsored schemes are highlighting on the mitigation of the disability, disbursing social pensions for the PwDs, identi cation of the funds and other inclusive agendas; however, states plays a crucial role in identi cation and implementation of those bene ts. The Government of Kerala has conducted an exclusive and rst ever Census on disability in India, which highlights sensitivity and priority given by the state towards PwDs 11 . At this juncture, to make the policies and programmes optimally functional and inclusive every state has an important role to play. The identi cation of the PwDs is a responsibility of the healthcare department of the respective states in that term.
Deprivation observed by the PwDs is well marked though inadequately measured in Indian context. The backward socio-economic groups are known to experience a selection bias in the incidence of disability 12 . It explains that the deprived population are subjected to disability quite often, and it impacted in profound manner. PwDs are biologically disadvantageous, they are often neglected in social policy and public life 13 .
Moreover, PwDs are also recognized to be most deprived among all backward groups of population 6 . The deprivation is known to be multi-dimensional in nature. In every aspects of development such as education, employment, health and others, it is often found that PwDs are facing extreme exclusion among other marginalized groups in the society. That led to indicate the inclusive agendas in the sustainable development goals by the actors of development at global level. Low awareness, poor nutritional outcome, poor access to physical infrastructure and basic resources are crucial to highlight the pattern of exclusion experienced by PwDs 14 . Social and political exclusion often degrades the health outcomes and wellbeing of the PwDs 15 . It suggests that a vicious cycle of deprivation may continue until a proper identi cation is done to target these sections of population. The effectiveness of disability centric programmes can hardly comprehend the underrecognition of PwDs. Since exclusion faced by the PwDs might vary across the types of disability they are suffering from; hence, a large set of condition can arise due to circumstances and life chances associated with different types of disability. For instance, intellectual disabilities are subjected to higher exclusion and discrimination along with the fact that identi cation of those population can be heavily compromised with respect to the population who suffered from physical disabilities only. Many physical only disability is also associated with the mental disability causes a double dilemma in whole circumstances. Proper identi cation of such complexities through a certain scale become challenge to the policymaker. A proper identi cation would give a proper measurement for the burden of disability. Consequently, it is also a matter of argument that at which age a person is suffering from disabling conditions and what would be probable resultant implications or signi cance at the household level can de ne the signi cance of disability. An occurrence of disability at old age may be subjected to less priority due to an expected higher incidence of disability and morbidity at later ages, and decline in the economic value of that person. Moreover, females and children would remain out of ambit of identi cation, which is associated with the fact of inherent deprivation and marginalization faced by that particular population in the society 16-18 .
Motivation to identify the disability remains to be poor and biased. Role played by the individual as an economic agent in the household and socio-economic agent in the society can also be explained while discussing on who is getting identi ed. It is necessary to mention that the disability is related to stigma and deprivation. In certain mental or intellectual disabilities, which are not viewed as physical limitation, stigma remains to be a concern over privacy for registering for a disability certi cate. Many prefer to avoid the issues of disability at the cost of not accessing disability bene ts, that helps them to evade the social shame 19 . Therefore, cultural and socio-economic justi cation for identifying the PwDs is also an important facet for factorizing the underlying gap in disability identi cation. In this backdrop, understanding the identi cation of the PwDs is utmost important in relation to demographic and socio-economic factors. Though several studies examined the extent, variation, and pattern of disability, no attempt has been made to understand the extent and variation of unidenti ed disability in India. The state-wise differences and underlying reasons of such poor identi cation of disability is needed to be captured to evoke about the functioning of the existing programmes and policies dedicated towards PwDs.

Data And Method
The unit data from survey of persons with disabilities in India, schedule 26.0 of the 76th round conducted by the National Sample Survey organization (NSSO) used in the analyses. The 76 th round of the nationally representative disability surveys conducted after a gap of 16 years (2002) and is the only reliable nationally representative data source on disability in India. The 76 th round (26.0) covered 5,76,569 individuals from 1,18,152 households across all states and union territories of India. A total of 1,06,894 disabled individual are included in the analysis. The NSS survey was administered to households with at least one disabled member in 2018. A strati ed two-stage design was adopted for the 76th round survey. In this schedule, a person is considered to have a disability if he or she has restrictions or a lack of abilities to perform an activity in the manner or within the range considered normal for a human being. Age, sex, education, religion social groups, and marital status of and cause of disability were collected for each member. Disabled were classi ed into any of the seven types of disability namely, locomotor, visual, hearing, speech, mental retardation, mental illness, and other disabilities. The classi cation of the type of disability is as per Rights of Person with Disability Act 1 (RPWD, 2018) 1 and the working de nition of each of the disability is given in footnote. Persons with more than one disability type are considered as having multiple disabilities. The survey had asked a direct question on self-reported disability. If a person reported disability, subsequently the availability of disability certi cate was asked and labelled as yes and no. A disability certi cate entitled individuals to avail multiple bene ts on education, employment, health care and many other social welfare programme of national and state government in India.

Method:
Outcome variable: Unidenti ed disabled is the main outcome variable in the analyses. It is de ned as the PwDs don't have the disability certi cate.
Independent variables: the set of independent variable used in study are age of the PwDs, gender (males and females), level of education (no education, primary, secondary, and above), Monthly per capita expenditure (MPCE) quintile (poorest, poor, middle, rich, and richest), religions (Hindu, Muslim, and others), social groups (ST, SC, OBC, and other), marital status (never married, currently married, and others). Economic status of PwDs was measured using the monthly per capita consumer expenditure (MPCE in Indian National Rupees). MPCE was computed by dividing the household's usual monthly expenditure by the household size (total number of individuals in the household).

Statistical Methods:
Descriptive statistics and bivariate analyses and a set of logistic regression are is used to examine the variation in overall disability certi cate and among the different type of disability in India. The analyses have been carried out for all and speci c type of disability.
The regression equation in its general form is given as Y i = α + β 1age group + β 2sex + β 3residence + β 4education + β 5 MPCE quintile + β 6religion + β 7social group + β 8marital status + ε i Where, Y i is the type of disability (outcome variable) and β's are the regression coe cients of independent variables such as age, sex, residence, MPCE quintile, education, religion, social group and marital status. ε i is the error term in the regression model. other locomotor disability. Visual disability (Blindness Low vision) Hearing Disability (Hearing Disability) Speech disability (Speech and language disability) Mental retardation/Intellectual disability (Specic learning disabilities Autism Spectrum Disorder, Other mental retardation/intellectual disability Mental illness (Mental Illness) Other Disabilities (a) Chronic neurological conditions (i) Parkinson's disease (ii) Multiple Sclerosis (iii) Other Chronic neurological conditions (b) Blood Disorder (i) Thalassemia (ii) Haemophilia (iii) Sickle cell disease. Multiple Disabilities More than one of the above speci ed disabilities including deafness or blindness Results Table 1 shows the sample pro le of the surveyed population in India. The average household size was 4.3 and about 27 percent of population were illiterate. Sex ratio (number of females per 1000 male) was 929, while the median age was 27 years. About 28% population were SC/ST and 30.4% population were living in urban areas. The monthly per capita consumption expenditure (MPCE) was 2297 rupees. The disability rate (per 100,000 population) in India was 2,184 and multiple disability rate was 1,651 per 100,000 population. The pattern of disability rate varies by types of disability in India. It is highest for locomotor disability (1353) followed by hearing disability (296), and visual disability (234). The disability rate was lowest for mental illness (131) and all other disabilities (55). Among all those who were disabled, 56.2% had locomotor disability, 10.1% had hearing impairment, 9.7% had visual, 8.4% speech, 7.1% mental retardation and 6% had mental illness.  Figure 2 shows the disabled person with and without disability certi cate by educational level in India. A disabled person with a lower education level had less likely to have a disability certi cate compare to one with higher educational level. Among those who had no education, only 24% had a disability certi cate compare to 46% among those who had higher education.

Discussion
The study measures the extent of non-access to the disability certi cates among PwDs in India. Our study has come across three salient ndings. First, about 7 in 10 PwDs do not possess a disability certi cate in India, which suggests lower access to programmes and facilities available for the PwDs. In contrast, it also suggests that a share of PwDs possess a certain level of disability which is not eligible for the disability bene t.
Secondly, there is a varying disparity in the access of disability certi cate across types of disability, selected socio-economic categories such as, place of residence, caste, gender and education. The difference in the access to disability is also persistent across states of India re ecting the inadequacy in the healthcare and social welfare delivery system. Lastly, our study identi es that the exclusion in accessing the disability certi cate is also attached to a notion of social stigma, disparity and vulnerability inherent to the PwDs with a certain type. It evokes that PwDs or their family members avoid to reveal their disability in a fear of social stigma.
To explain the gap in accessing a disability certi cate it is imperative to mention here that upto a certain level of disabling conditions access to a disability certi cate is not essential. In India, 40% of disability is considered as a signi cant disability and given a certi cate. The access to disability certi cate is matter of awareness, knowledge and perceived need of the individuals. Educational achievement is also related to health care access and behaviour among population 20,21  The socio-economic association to the access to certi cate clearly explain that the place of residence is a biggest hurdle for accessing services by the PwDs 22 . In majority of the cases, disability has a higher likelihood of getting a certi cate from urban areas, re ecting a lack of facility to get certi cate in the urban set-ups.
Besides, being female, reserved socio-economic groups, low education and poor standard of living have a lesser likelihood to get a disability certi cate. This suggests that a de ned vulnerability exists among PwDs.
Females in general are identi ed later than males for the case of disability. Females with a severe forms of disability is identi ed more than males identi ed with a disability at the same time 23 . Socio-economic deprivation also results in one to get lesser bene ts and hence, poorer performance among PwDs 24,25 . This is con rmed by the study ndings as it shows that in compared to STs, other castes are showing a higher likelihood to access disability certi cates. As our study explore the variation in access to certi cates across different types of disability, it gives a clear indication that few disability has been observed a higher incidence of chronic conditions in compared to the rest. The argument on who are not getting identi ed lies in the complex structure of individual and social needs. It explains that necessity to get bene ts for few disabling conditions prompts us to a higher access of disability certi cates. The incidence of such disabling conditions if occurring at the early age groups or young adulthood shows a higher chances of registration of the policies and programmes. Disability in hearing and mental retardation are found to get least percentage share for accessing the disability certi cates found in our study. For instance, it has been already documented that hearing loss may decelerate the development of speech, hence, results into a disability in speech (National Research Council of United States). Multiple disability may impede the daily activity in much more signi cant way. Whereas, mental retardation is associated with the other disabling conditions like, motor skill disorders, vision problems etc. These complications require a long-term treatment and rehabilitation to improve the condition. Therefore, registering to a disability certi cate would give them a bene t of low cost or free treatment for long term care.
In some states in India, the primary health workers, who are catering to the need of maternal and child care services, are following and registering the children under different schemes and helping to access a disability certi cate 26 . Besides, schools are another institute that helps to identify a mental retardation, intellectual disability, vision or hearing disabilities among children in India 27 . Above mentioned disabilities are more pronounced in the polity of disability and development. However, stigma attached to disability hampers the access to social services, bene ts and identi cation on paper. Disability due to mental illness is a matter of stigma and shame. Social shame, restricted social participation and poverty for this kind of disability is well understood in the context of India 28,29 . Moreover, low rate and delayed age of incidence of this kind of disability might be a reason for less value attached to the access of social bene ts or other services 14 . A lesser access to a disability certi cate for mental illness is explained in our study.
The prevalence of the access to disability certi cate suggests that a signi cant number of states are having a low incidence. The explanation for this evidence upholds that active participation of the local health care providers for timely identi cation of the disability among population. States like Punjab, which shows a higher access to disability certi cates, has taken an active step by the Department of Social Security and Women & Child Development in identifying and providing a regular health check up to PwDs (https://sswcd.punjab.gov.in/en/social-security/persons-with-disabilities-pwds). Recently, various states have taken a step to conduct camps to disburse disability certi cates. Despite having a provision for the disability enumeration through primary health centers or camps, many states are not active enough to implement it e ciently. Therefore, a poor identi cation and access to disability certi cate can be observed in our study.
DDRCs are one of the prime healthcare structure which are given with the responsibilities for the identi cation, monitoring and evaluation of disabilities at the ground level. Meagre number of functional DDRCs, which is around 31 as against proposed 300 in India (2018-19) (https://www.indiastat.com/Home/DataSearch? Keyword=district%20disability%20rehabilitation%20center), suggests that disability identi cation and access to basic facilities like disability certi cates and related information is poor in our country. The growing incidence of disability is a prime event that lurks ine ciency of public health and social welfare system.
Evidently, low access to disability certi cate would de nitely decline the access to social bene ts like disability pension, health bene ts, and other development bene ts. Further, resource allocation may be compromised if inadequate identi cation of the potential population is done due to measurement error. Therefore, it can be concluded that a bidirectional relationship exists between identi cation of disability and resource allocation or utilization. Our study is limited to understand the level of disability vis-à-vis access to disability certi cate since it is out of the scope of study. Further studies are required to understand the disability certi cate in such context. Moreover, inclusion of the different social welfare schemes or pension could bring forth a vivid picture regrading administrative and political relevance of the disability scenario in India.

Conclusion
The study aims to understand the access to disability certi cate among different types of PwDs in India. It has been clearly marked that the dearth in the access to those certi cates is not due to systematic failure but various social-economic dimensions are also responsible for such behaviour. Various norms under health and social welfare policies across states, which are inconducive to the PwDs might be responsible for varying access to disability certi cates. As a result, participation in education, employment and other human development indicators can be compromised in a great extent. This can further suggest an inadequate identi cation of the PwDs. Our study gives an in-depth analysis of the pattern of identi cation among the PwDs through disability certi cates. It is suggested that urgent steps are needed to be taken to better identi cation of the PwDs through an administrative tool. Hence, social support can be delivered to every PwD, and make the developmental approach more inclusive.