Introduction
With an estimated prevalence of blindness of 0.45%, India is home to third of world’s blind population (12million/35 million). 1
The registration of blindness and low vision in India is voluntary and has to be certified by an ophthalmologist.2 The rights of persons with disability act 2016 fixes the roles and responsibility of safeguarding the rights of people with disabilities in the state. 3
This act also defines visual benchmark disability as having at least 40% disability due to any cause or illness. Upon certification by a recognised medical board of a government hospital people with benchmark disability would be eligible for several benefits and welfare measures. 4 Blindness registers have been playing a vital role in assessing incidence and prevalence of visual disability.
Table 1
Visual disability categorisation.5
The UDID project was instituted and organized by the Dept of Empowerment of people with disabilities Govt of India. It is a wholesome and integrated system for issuing universal ID cards and disability certificates to the differently abled individuals. These would not only include the person’s identification but also the information of the disability. Apart from ensuring uniformity at a national level, it also helps in making the whole process transparent and efficient, which helps the GOVT in delivering the benefits to the target population. It will also facilitate long term follow up of the beneficiaries at all the levels of implementation from the grassroots to national level.5
To the best of our knowledge since the inception of the UDID project no study has been conducted to analyse data available on its database hence we designed this cross-sectional observational study to analyse this. Even though this might not provide the prevalence of various causes of visual disabilities or blindness in the community it is going to provide important insights into the demographic features and a clinical profile of the applicants from the local population.
Materials and Methods
This is a cross sectional observational study conducted at RIO, MOH, a Tertiary eye care centre, Karnataka. Details of the applicants who had applied in UDID portal between July 2019-to march 2020 were assessed. Total of 551 applicants were received under Bangalore urban district which has 5 Taluks catering to about 1 crore population.
Recent guidelines issued by THE GAZETTE OF INDIA and the Dept. of Family Welfare were considered for the visual disability categorisation while assessing the applications applicantions.
Demographic data, degree of visual disability, clinical data were collected from all the applicantions from UDID Database Portal were compiled and assessed. Reassessment was done in few low vision patients to confirm the degree of disability.Table 1
Results
Nearly 2/3rd of the applicants were men.Figure 1
Table 2
Distribution of applicants according to age.
375 applicants (68%) belong to the working age group 20 – 50 years.Table 2
While 296 applicants were married, 216 were unmarried including children in the age group of 0-10 years . 36 applicants did not provide details of their marital status.Table 3
Table 3
Profile of patients based on low vision or blindness.
|
|
Blindness |
Low Vision |
|
|
|
90%-100 % |
40 % - 80% |
|
|
Male |
180(32.6%) |
169 (30.9%) |
19 (3.4%) |
|
Female |
115 (20.8%) |
6 (11.0%) |
7 (1.27%) |
Almost all (95%) of the applicants were categorized as blind (visual disability of 90% and 100%).
Less than 5 % of applicants were under the low vision category (visual disability 40%-80%).
Visual disability criteria are taken from the (Table 1).
Visual Impairment Certification Criteria and Gradation.
Table 4
Distribution of applicants according to Education Qualification.
Nearly half of the applicants had completed basic education (10th std/SSLC). About 20% of the applicants were graduates.
Table 5
Employment of the applicants according to the gender
|
|
Male |
Female |
|
Employed |
112 (20.36%) |
35 (6.35%) |
|
Unemployed |
176 (31.94%) |
110 (19.96%) |
|
No details available |
80 (14.51%) |
38 (6.89%) |
Around 50% of applicants were unemployed and dependent on their family for their livelihood. Around 26% were employed, the majority of them being men. Only 6% females are employed in various private and govt sectors. No details about the employment were mentioned in 118 applications.
Table 6
Distribution of applicants according to the annual income
Nearly half of the applicants (48%) were from below poverty line and were economically dependent on the other family members. Where as 3 % of applicants had an annual income of >5 lakhs, no data was available for 30% of applicants.
Table 7
Distribution of applicants according to the diseases
Retinal disorders (34%) are the major cause of visual disability among the applicants followed by phthisis bulbi (20%) and congenital eye diseases(14.8%).
Among the retinal disorders, retinitis pigmentosa was the leading cause of blindness which accounts for 77% of the retinal pathologies followed by retinal dystrophies.
Anterior chamber pathologies accounted for about 10% of the disabilities.among the anterior segment disorders corneal grafts and anterior staphyloma together accounted for more than 45%of the cases.
Out of 79 congenital ocular diseases, the visual disability among microphthalmos contributed to 48% of cases.
Discussion
Visual disability/blindness has major impacts on personal and socioeconomic aspects of one’s life. The impact is more profound in developing countries due to the limited opportunities, financial support and awareness. The findings of our study were conforming to similar studies conducted previously in India, and will help to add to the pool of evidence based data in order to enhance awareness and to plan prevention, and rehabilitation strategies.
Our study found that almost 2/3rd (65.33%) of the UDID applicants were males. This gender bias was observed in other Indian studies such as that conducted by Abastha et al in Bihar,6 Gosh et al in west Bengal 7 and Joshi et al in central India.8 The preponderance could be attributed to the fact that males are more active outdoors and hence more in need of the available benefits than females. Another reason which might explain this gender bias would be low literacy levels among women, as well as social obstacles to accessing the certification system which is institution based.
When we analysed the age distribution of the applicants we found that nearly 70% of the applicants were in the age group of 20 to 50 years this is the most productive age group of the society there by explaining the greater need of certification be it for the purpose of education, employment, tax and conveyance benefits. This result agrees with the findings of the Ghosh et al study.7 We noted in our study that very few applicants were there at both the extremes of age ‘as the UD ID registration process is mainly web-based unfamiliarity with these processes along with reduced need for certification might also explain lower level of certification in the elderly age group The latter group might also be dependent on breadwinners of the family, and might have hindrance to the application process.
Half of the applicants were married, which can enhance the social and personal support to the disabled.
While About 50% of the applicants had completed basic education (10th standard or SSLC). 20% of the applicants had completed atleast graduation. At every educational level men outnumbered women.
Nearly Half of the applicants were unemployed, fell below the poverty line, and were economically dependent on other family members. These results were similar to the results of other Indian studies. 2002 survey conducted by the government of India found that a whopping 80% of the blind people in rural India did not have a source of income. These findings emphasize the need for enhancing the education and employment benefits as well as enhancing awareness among the blind population and their caregivers regarding the UD ID cards and their benefits as well as various social security measures undertaken by the government.
We found that people with 100% visual disabilities accounted for almost all the applicants. A similar outcome was noted by Kareemsab et al., 9 Gosh et al.7 Percentage of blindness were allotted in accordance with Visual disability criteria. 7
Our study found that RP, a retinal disease was the single largest cause of disability followed by phthisis bulbi.
148 (26%) of applicants were blind due to Retinitis pigmentosa, emphasizing the need for genetic counselling, and awareness programs about the dangers of consanguineous marriage. Similar findings were noted in other studies such as those by Joshi et al.8
Phthisis bulbi accounted for 20% of cases. But details pertaining to the causes of phthisis were not documented in records.this was followed by congenital disorders is the next leading cause for blindness, microphthalmos accounting for half of the cases. Congenital malformations were found to be a major cause of blindness in other studies as well.7, 8, 10, 9 Siddegowda et al had suggested a correlation between prevalence of consanguineous marriage, and congenital rubella syndrome in India. 11
10% of applicants had anterior segment pathologies causing blindness, with corneal opacity being the leading cause. Corneal dystrophies, keratoconus, and failed corneal graft were responsible for 9, 7 and 4 cases respectively. Aphakia and complicated contributed to disability in 11 cases. Garg et al in their review of literature had analysed the need, availability and survival of corneal grafts in various countries. They noted that, even though developing nations like India carry the major load of corneal blindness, eye donation rate and graft survival are poorer in these countries compared to developed nations. 12 in our study, the causes of opacities, graft failure or aphakia were not available from records. However these findings further emphasise the need for improving awareness about eye donation and increasing the availability of corneal transplantation services to the common man.
Other major causes of blindness noted were neurological, optic atrophy being the most common cause, pathological myopia, and glaucoma. This calls for improving screening services for glaucoma and also increasing the availability of low vision aids and other rehabilitation for the visually challenged population.
The limitation of our study is that data was collected from records, and hence missing details could not be collected or verified directly from subjects. Strength of our study was the large number of study population.
Conclusion
Unique Disability Identification card (UDID) is a one stop for disability certificates, for those with a benchmark disability of 40% or more. The pre requisites and process to obtain the card as well as its benefits should be publicized using mass media to improve awareness among common public about the same.
Despite being educated, most of the blind population suffers from due to lack of employment opportunities. Government policies to ensure job reservation, conveyance benefits, vocational training are required urgently to ensure better quality of life to this population.
The fact that retinitis pigmentosa and congenital disorders are responsible for lion’s share of blindness.
Calls for urgent need of easy accessibility of genetic counselling in govt. hospitals, and preventing consanguinity by creating public awareness and if possible legal measures.
Strict implementation of work safety laws and improving awareness are required to reduce ocular trauma which further leads to corneal scarring or phthisis. Enhancing awareness and routine screening for treatable conditions such as glaucoma and diabetic retinopathy, improving eye banking services are of ever increasing requirement in these challenging times.
Govt can also consider a policy of opt out, instead of opt in for organ donation. So as to address the huge need availability gap in corneal transplantation. Addressing those without complete blindness with early rehabilitation including Low vision aids will improve the quality of life of visually challenged.
Article DOI
