They added that, if true, the move will mean losing out on essential granular data on disability that could guide policies in the country.
FIT has reached out to the Director of International Institute for Population Sciences (IIPS), as well as the Department of Empowerment of Persons with Disabilities for confirmation, and is awaiting their response.
Disability in NFHS-6
The NFHS is carried out every 3 years with countrywide sampling to collect data on health, education, nutrition, mortality and sanitation, among others.
Disability was one of the new topics included in the 2019-2021 NFHS-5.
The reason for this omission is, reportedly, the difficulty the surveyors faced last time in processing accurate data.
"Disability is decided on medical certification. Our surveyors are not doctors and they cannot be checking medical certificates. People could not even understand the questions properly. NFHS technical advisory committee asked for the question to be dropped rather than give inaccurate data," a principal investigator for the survey was quoted by The Times of India as saying.
A statement released by the Disability Rights India Foundation, a collective of disability, however, argues, the decision contradicts the principle of 'leave no one behind' under the Rights of Persons with Disabilities Act, 2016.
Speaking to FIT, Rama Krishnamachari, director of Diversity and Equal Opportunity Centre, and a member of the DRIF, says:
"Rather than strengthening the training and the questionnaire to ensure better data collection, they have decided to drop it all together."
She adds, the solution would have been to "strengthen the questionnaire further, and training of the surveyors instead of abandoning it completely."
The survey questionnaire is not available in the public domain as of now.
Why Does This Data Matter?
Activists point out that data collected as part of the NFHS is valuable to shaping policies and the fulfilment of Sustainable Development Goals (SDGs) for vulnerable groups.
"This is the data that is analyzed for even looking at all the vulnerable populations, but if disability is not included, how do you really measure the Sustainable Development Goals (SDGs) for people with disabilities?"Rama Krishnamachari, Director of Diversity and Equal Opportunity Centre
"At the national level, the decision to remove disability related questions from its survey is contradicting its principle of “leave no one behind” under the Rights of Persons with Disabilities Act, 2016. It is particularly regressive given that India is also a signatory to the Convention on the Rights of Persons with Disabilities (CRPD) and SGDs Article 31," said the press release by Disability Rights Foundation India.
"It should also be noted that Sustainable Development Goals (SDGs) requires disability disaggregated data. NFHS is collecting a broad range of data on family, health status, health services, access to sanitation, domestic violence etc. that feed into various country wide policies and programmes. It is therefore vital that they include disability in the questionnaire," the press release added.