Amid fears that the National Family Health Survey (NFHS-6), due to commence from July 2023, could be dropping questions on disability from its survey questionnaire, disability rights activists are demanding immediate correction and inclusion. Activists say that whilst NFHS-5 (2019-21) had questions related to disability and had collected data on disabilities, “information from reliable sources confirm that NFHS-6 has dropped questions on disability from its survey questionnaire”.

The Health Ministry did not respond to the query by The Hindu seeking comments on the issue. The NFHS is a large-scale, multi-round survey providing essential data on health and family welfare, as needed by the Health Ministry and other agencies, for policy and programme purposes, and to provide information on important emerging health and family welfare issues.

The Disability Rights India Foundation (DRIF), a non-profit organisation working in the area of disabilities rights, in their communication said that “disability disaggregated data is the cornerstone for disability relevant services” in any country. Countries world over and 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 the 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. 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,’’ the DRIF said.

The group added that, going forward, the NFHS needs to sharpen its questionnaire on the disability front and make it more relevant by consulting people with disabilities, but it has reversed the process by removing disability related questions altogether.

Seeking the immediate intervention of the Ministry of Health, the Ministry of Social Justice and Empowerment, and Niti Aayog to facilitate the inclusion of questions on disability in the NFHS-6 in consultation with persons with disabilities, the group has said that at the national level, the decision to remove disability related questions from its survey contradicted 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),’’ it noted.

Speaking on the issue Satendra Singh, disability rights activist and doctor at the University College of Medical Sciences and Guru Tegh Bahadur Hospital, Delhi said that people with disabilities in India experience an average loss of 10-17 years in life expectancy, according to the recent 2022-Missing Billion Report on ‘Reimagining Health Systems’.

“So closing the life expectancy gap for the world’s largest minority group requires access to comprehensive health data. The recent World Health Organization global report on health equity for persons with disabilities also emphasises the importance of monitoring indicators to promote health equity for our community. It is crucial to ensure that our needs and experiences are acknowledged and accounted for. We must bridge the disconnect between data collection and the effective design of policies,” Dr. Singh said.