Disability disaggregated data is the corner stone for disability relevant services in any country. Countries world-over including the United Nations and other international bodies are now developing toolkits and strategies to broaden their disability database. In India, we can use our existing mechanisms and National Family Health Survey (NFHS), is well placed to collect disability related data. However, it will be an opportunity lost by NOT including disability in its forthcoming NFHS-6 survey which is scheduled to commence from July 2023.

National Family Health Survey (NFHS) is being carried out every 3 years with countrywide sampling. Whilst NFHS-5 (2019-21) had disability related questions and collected data on disabilities, information from reliable sources confirm that NFHS-6 has dropped questions on disability from its survey questionnaire. Going forward, whilst NFHS needed to sharpen its questionnaire on the disability front and make it more relevant by consulting people with disabilities, it has reversed the process by removing disability related questions altogether.

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 Sustainable Development Goals (SDGs). Article 31 of CRPD emphasises ‘States parties to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention.’ 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. 

In addition, Section 15.1 of the draft National Policy for Persons with Disabilities 2021 reinforces the need for disability data collection and management to measure progress in (a) the  implementation of Rights of Persons with Disabilities (RPWD) Act, 2016 and (b) the targets associated with the inclusion of persons with disabilities in Sustainable Development Goals (SDGs).

Time is of the essence here. We need to act fast as the survey is scheduled to start from 1st July 2023.

We therefore urge the Ministry of Health and Family Welfare, Ministry of Social Justice & Empowerment as well as Niti Aayog to immediately intervene and facilitate the inclusion of questions on disability in NFHS-6 in consultation with persons with disabilities.

We also call upon individuals, disability advocates, organisations of persons with disabilities, media and friends of the disability sector to join hands in this campaign to ensure disability related questions are included in NFHS-6 as a priority.