In a plea challenging the exclusion of disability-related questions from the sixth instalment of the National Family Health Survey (NFHS), the Calcutta High Court has issued notice to the respondents to file an affidavit to satisfy the prayers raised by the petitioners against the exclusion.
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RECENTLY, a division Bench of the Calcutta High Court issued notice to the Ministry of Health and Family Welfare (MoHFW) and other concerned authorities in a plea challenging the exclusion of disability-related data from the sixth instalment of the National Family Health Survey (NFHS), which was scheduled to begin on July 1.
While acknowledging the grievance raised in the writ petition filed by Disability Activists Forum in the Disability Activists Forum & Anr versus Union of India & Ors, the Bench, comprising Chief Justice T.S. Sivagnanam and Justice Hiranmay Bhattacharyya directed the respondents to file an affidavit as to why the prayers raised in the plea could not be granted.
The Disability Activists Forum is a West Bengal-based organisation comprising non-government organisations, parent associations, social activists, persons with disabilities and individuals working in the field of disability. The petitioner was represented by advocate Jhuma Sen.
The petition questions the arbitrary exclusion of disability data from the NFHS and raises concerns that the exclusion would have a “severe impact” on the quality of life of persons with disabilities, including their maternal and child health.
It states that the government has a constitutional obligation to protect persons with disabilities, and questions whether the exclusion would result in the infringement of the right to life including the right to live with dignity.
In the latest hearing on July 11, Sen pointed out that the exclusion of disabled people from the purview of the data would have a detrimental impact on their lives.
She further stated that the exclusion is squarely against the letter and spirit of the United Nations Convention on the Rights of Persons with Disabilities, 2006 (CRPD) and the Rights of Persons with Disabilities Act, 2016 (RPWD Act).
India is a signatory to the CRPD and the RPWD Act was implemented in furtherance of its international obligation towards protecting the rights of persons with disabilities.
Background
The MoHFW’s NFHS is a large-scale, multi-round survey providing essential data on health and family welfare. Data of the survey is used for policy-making and to provide information on emerging health and family welfare issues.
NFHS data is collected every three years. The fifth instalment of NFHS, which included disability-related questions for the first time, was conducted between 2019–21.
On June 22, the MoHFW issued a memorandum announcing that the questions on disability are being dropped from the upcoming survey because the previous survey failed to record accurate data on disability. The memorandum disclosed that the decision was based on the recommendation of the NFHS technical advisory committee and other higher-level committees constituted for the smooth functioning of the survey.
As per the recommendation of the committee, there are different types of disabilities that have several medical terminologies. The inclusion of disability-related questions may result in “inappropriate responses” from people who may not be aware of such specific disabilities.
The committee emphasised that NFHS’s primary focus should remain on maternal and child health and already existing surveys may prove to be more relevant in the context of disability-related data.
MoHFW referred to the disability data in report no. 583 of the National Sample Survey (NSS)’s 76th round. The NSS is a dedicated survey which was conducted from July to December 2018, to collect detailed information on disability. According to the memorandum, the NSS has already recorded data on disability and there is no further need to record it because disability-related data does not change frequently.
“There is no reason to collect the data every three years,” the memorandum notes.
The committee further recorded that the National Sample Survey Office (NSSO) has collected detailed information on disabilities, which are more reliable than the NFHS data. It said: “On the basis of the NFHS-5 report, it was observed that the disability prevalence was only 1.0 percent for rural areas and 0.9 percent for urban areas. While the NSSO estimates for the year 2018 showed 2.3 percent for rural areas and 2 percent for urban areas.
“Therefore, it may be seen that based on data collection for a few parameters in the NFHS, it is not possible to capture the all-India extent of disability and will significantly underestimate the prevalence of disability.”
More than 20 organisations, including the National Disability Network, National Platform for the Rights of Disabled, Action for Autism, Autism Spectrum Rights Alliance and Disability Rights India Foundation have written a letter to the MoHFW demanding the reinstatement of disability-related questions in the NFHS-6.
About the petition
The petition claims that the NSSO’s data is not pari materia because the 76th NSO was conducted in 2018 whereas the NFHS-5 was conducted in 2019.
The petition notes that all the information collected by the NHFS is not covered by the NSSO because the latter collects information with regard to socio-economic characteristics only. Information on family welfare and health remains within the purview of the NHFS.
If the data collected by the NSSO was considered sufficient for the purpose of accumulating data on the health and welfare of disabled persons, the questions on disability were not to be included in the NFHS-5, the petition notes.
The petition contends that the state as the parens patriae cannot isolate disabled persons from the welfare of policy-making which is derived from the data, as a disabled person can also be a part of the family or has a right to form a family.
The disabled person has a right to seek knowledge in regard to lifestyle indicators, sexually transmitted infections and other illnesses, all of which is squarely covered within the umbrella of family, child health, reproductive health and nutrition and other health-related information collected by the NHFS, the petition contends.
In fact, disabled children’s health and survival rate directly concerns the larger object and purpose of the survey, the petition avers.
While many countries around the world are developing toolkits and strategies to broaden their data on disability, India, despite being a signatory of the CRPD, is violating the right to equality by excluding the disability data from the NHFS, the petition laments.
According to the petition, by excluding data on disability, India has violated Article 31 (statistics and data collection) of the CRPD and Section 25(2)(a) (healthcare) of the RPWD Act which emphasises the need to collect disaggregated data on disability.
Additionally, Sections 28 (research and development) and 48 (social audit) of the RPWD Act put a mandatory obligation on the state to conduct research, development and social audit for the benefit and empowerment of disabled persons.
The petition states that disability is an inherent aspect of human diversity. Disability disaggregated data is the cornerstone for disability-relevant services in any country.
The petition rejects the claim of the MoHFW that the disability estimates do not change frequently.
As per the petition, this is incorrect because the statistical data on disability remains invisible due to the flaws in methodology used to collect the data. As per the petition, the World Health Organisation puts the estimates of the number of persons with disability at a staggeringly high 15 percent of the country’s population.
Considering all these arguments, India, by excluding disability questions in the NFHS, is in violation of its statutory, constitutional and international obligations towards persons with disabilities.
