The National Family Health Survey must include specific questions about disabilities to help formulate appropriate policy
India has 2.68 crore persons with a disability, according to the 2011 Census. However, with the Rights of Persons with Disabilities Act, of 2016, now recognizing 21 types of disabilities, this number is expected to increase manifold. A robust policy is critical to encompass their aspirations and ensure all persons with disability achieve their full potential and play an active part in nation-building.
This is why the recent decision to drop questions related to disability from the sixth National Family Health Survey (NFHS), scheduled to begin on July 1, 2023, is inexplicable. The NFHS, conducted every three years, collects data on a gamut of development indices vital to inform policy and programmes.
This survey, which covers approximately seven lakh households across the country, is an important tool to gather data on whether people with disabilities have access to basic amenities and other government programmes.
However, at a time when the need to ensure no one gets left behind is doubly important considering the ravages caused by Covid, the exclusion of questions on disability is an opportunity lost to gather disaggregated disability data.
An Opportunity Lost
According to the Disability Rights India Foundation (DRIF), a non-profit working for disability rights, disability disaggregated data is the cornerstone for disability-relevant services. Instead of sharpening its questionnaire related to disability, NFHS has reversed the process by removing disability-related questions altogether.
Considering that India is a signatory to the Convention on the Rights of Persons with Disabilities (CRPD) and Sustainable Development Goals (SDGs), this regressive move contradicts its principle of “leaving no one behind” under the Rights of Persons with Disabilities Act, 2016. In India, PwDs experience an average loss of 10-17 years in life expectancy. Creating pathways to change this and make health services disability inclusive requires access to comprehensive health data which NFHS could have provided.
Children with disabilities are disadvantaged on most measures of child well-being. In comparison to children without disabilities, children with disabilities are 24% less likely to receive early stimulation and responsive care; 42% less likely to have foundational reading and numeracy skills; 25% more likely to be wasted and 34% more likely to be stunted; 53% more likely to have symptoms of acute respiratory infection; 49% more likely to have never attended school; 32% more likely to face corporal punishment; 47% more likely to be out of primary school, 33% more likely to be out of lower secondary school and 27% more likely to be out of upper secondary school; 51% more likely to feel unhappy and 41% likely to feel more discriminated against.
Now consider the fact that one-third of disabilities in children are preventable if detected early and empowered with timely interventions. A roadmap based on accurate data to reach about 20.42 lakh children in the 0-9 age group with some form of disabilities, either congenital or acquired, could be life-changing.
It is no secret that existing disparities were exacerbated by Covid. In the context of education, data shows that before the pandemic, more than 4.1 million girls were not going to school across India. The closure of 1.5 million schools during the pandemic impacted over 247 million children enrolled in elementary and secondary schools, including 37 million with disabilities.
A 2020 survey by Swabhiman, a community-based organization working for the rights of persons with disability, in Odisha, Jharkhand, Madhya Pradesh, Tripura, Chennai, Sikkim, Nagaland, Haryana and J&K found about 43% of children with disabilities planned to drop out due to hardships in online education.
It is not just the lack of access to educational aids that impedes the well-being of a PwD. They have little or no access to health services as information about disease symptoms and prevention, is not provided in accessible formats such as print materials in Braille, sign language interpretation, captions, audio provisions and graphics.
Women with disabilities are doubly marginalised on account of their disability and their gender and face greater social barriers, discrimination and isolation. Moreover, women and girls with disabilities are three times more likely to experience gender-based violence compared to non-disabled women.
The Rights of Persons with Disabilities Act, 2016, emphasises prevention of disability through appropriate awareness measures, investigation, and research. Article 31 of the United Nations Convention on the Rights of Persons with Disabilities mandates collection of appropriate information on PwDs to enable the formulation and implementation of policies. Can there be a better mechanism than the NFHS to gather data to understand the prevalence and pattern of disabilities?
(The writer is a senior journalist. The views expressed are personal)