The study measures the extent of non-access to the disability certificates among PwDs in India. Our study has come across three salient findings. First, about 7 in 10 PwDs do not possess a disability certificate 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 benefit. Secondly, there is a varying disparity in the access of disability certificate 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 reflecting the inadequacy in the healthcare and social welfare delivery system. Lastly, our study identifies that the exclusion in accessing the disability certificate 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 certificate it is imperative to mention here that upto a certain level of disabling conditions access to a disability certificate is not essential. In India, 40% of disability is considered as a significant disability and given a certificate. The access to disability certificate 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. A handful population with disability are not motivated enough to get a disability certificate, if their disabling conditions are minor and not affecting their daily activities in remarkable way. Identifying this section of population with disability is challenging and is not easy to consider under the umbrella of social welfare benefits. Further, to access a disability certificate several other documents are required such as income, caste, domicile certificate etc. Many individuals do not possess all these documents with them. To arrange the supporting documents it takes a lot of effort and time, which may feel cumbersome and hectic to the individuals with disability or their family members. This condition compromise the access to the disability certificate. Hence, the administrative procedure to identify a PwDs dampens the access in a great extent considering such conditions.
The socio-economic association to the access to certificate 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 certificate from urban areas, reflecting a lack of facility to get certificate 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 certificate. This suggests that a defined vulnerability exists among PwDs. Females in general are identified later than males for the case of disability. Females with a severe forms of disability is identified more than males identified with a disability at the same time 23. Socio-economic deprivation also results in one to get lesser benefits and hence, poorer performance among PwDs 24,25. This is confirmed by the study findings as it shows that in compared to STs, other castes are showing a higher likelihood to access disability certificates. As our study explore the variation in access to certificates 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 identified lies in the complex structure of individual and social needs. It explains that necessity to get benefits for few disabling conditions prompts us to a higher access of disability certificates. 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 certificates 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 significant 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 certificate would give them a benefit 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 certificate 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, benefits and identification 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 benefits or other services 14. A lesser access to a disability certificate for mental illness is explained in our study.
The prevalence of the access to disability certificate suggests that a significant 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 identification of the disability among population. States like Punjab, which shows a higher access to disability certificates, 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 certificates. Despite having a provision for the disability enumeration through primary health centers or camps, many states are not active enough to implement it efficiently. Therefore, a poor identification and access to disability certificate can be observed in our study. DDRCs are one of the prime healthcare structure which are given with the responsibilities for the identification, 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 identification and access to basic facilities like disability certificates and related information is poor in our country. The growing incidence of disability is a prime event that lurks inefficiency of public health and social welfare system. Evidently, low access to disability certificate would definitely decline the access to social benefits like disability pension, health benefits, and other development benefits. Further, resource allocation may be compromised if inadequate identification of the potential population is done due to measurement error. Therefore, it can be concluded that a bidirectional relationship exists between identification of disability and resource allocation or utilization. Our study is limited to understand the level of disability vis-à-vis access to disability certificate since it is out of the scope of study. Further studies are required to understand the disability certificate 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.