The National Family Health Survey (NFHS) is a large-scale and multi-round survey conducted throughout India. The primary goals of every round of NFHS were to provide essential data on health and family welfare and to provide information on important health and family welfare issues. NFHS provides state and national data on important indicators related to fertility, child mortality, infant mortality, quality of healthcare, reproductive health, non-communicable diseases, health insurance, nutrition, water and sanitation, and many other topics.

The latest round of the NFHS (NFHS-5) of 2019-2021 provided information on some new issues like preschool attendance, death registration, ownership of physical and economic assets by women, HIV testing during antenatal care, domestic violence during pregnancy, etc. NFHS-5 also expanded additional components in the domains of non-communicable diseases, child immunization, hypertension, and diabetes.

NFHS-6 scheduled to be conducted in 2023-24, is expected to add a few more domain areas. However, the exclusion of a particular question has raised some eyebrows. Recently, the Union Government decided to drop the only disability-specific question from NHFS-6. The decision has not gone well with the community, activists, researchers, and policymakers.

Why Did the Union Government Drop the Disability-Specific Question?

• It took years of campaigning to finally add one question related to disability in the NFHS-5. It was expected to be a small stepping stone toward potentially building a more comprehensive dataset in successive rounds of the survey. However, the complete omission of the disability-specific question has made the disabled in the country feel dejected.

• The Ministry of Health and Family Welfare stated that the question was omitted because the questions related to disability were already asked in the 76th round of the Sample Registration Survey (SRS) in 2018. The Ministry also claimed that the data on disability will 'not change fast.'

• It was also noted that the only question on disability in NFHS-5 reported under-reporting and did not give accurate data. It was difficult for surveyors to check medical certificates as disability is only decided based on a medical certificate. It was also observed that the question was difficult to understand.

Why Is It Important to Include the Questions on Disability in NFHS-6?

• The number of people with disabilities has increased drastically over the years. According to the 2011 census, people with disabilities constituted 2.2% of the population. However, the number has increased to 4.5% as per the last round of NFHS. Therefore, it is very important to have updated data on people with disabilities.

• The SRS addressed various indicators of people with disabilities like incidence, prevalence, certificate of disability, education, unemployment, etc. However, the NFHS will provide more comprehensive and health-specific indicators like nutrition, family planning schemes, outcome and impact of health schemes, drinking water, use of contraception, health insurance, etc.

• NFHS-6 is also expected to cover around 6.1 sample households, which will make the data set representative and provide robust data on people with disabilities.

• The different approaches of various surveys are another reason why India ends up undercounting disability. The Right of Persons with Disability Act 2016 increased the type of disabilities from 7 to 21. The 21 disabilities are divided under the categories of Physical disability, Intellectual disability, Mental, Disability due to chronic neurological conditions and blood disorders, and multiple disabilities.

• NFHS-5 focused on counting people only with benchmark disabilities under the five categories of Locomotor, Visual, Hearing, Speech, and Mental. The Indian Census 2011 defined disability based on self-identification. However, the 76th round of the National Sample Survey (NSS) Report in 2018 covered all disabilities under the Rights of Persons with Disability Act 2016.

• It was expected that NFHS-6 would finally align the definition of disability. However, the complete omission of disability-related questions from NFHS-6 adds to the data gaps created due to undercounting of the disabled population of India.

• Disability rights activists like Paralympic fencer Vibhas Sen have demanded the inclusion of the disability-related question in NHFS-6. Sen has suggested focusing on the three areas of data collection, research, and effective dissemination for comprehensive data on people with disabilities. He believes that a comprehensive dataset is extremely important to identify the service gaps and evaluate the impact of policies.

Conclusion

The omission of questions related to disability and anemia from NFHS has stirred some controversy. The recent suspension of the Director of the Indian Institute of Population Sciences (IIPS), Prof. K.S. James, has added to that controversy. However, the omission of disability-related questions is against the Rights of Persons with Disabilities Act of 2016. It is also against India's signatory to the Convention on the Rights of Persons with Disabilities (CRPD). It also contradicts India's commitment to achieving the Sustainable Development Goals (SDG) by 2030.

There should be efforts made toward refining and sharpening the questionnaire. The field staff should also be trained specifically to ask questions related to disability. NFHS-6 is expected to evaluate the impact and outcome of health schemes. It will also feature some new domain areas of COVID-19 hospitalizations, COVID-19 vaccinations, and Direct Benefit Transfers. The areas of utilization of services, health insurance, health financing, and family planning will also be evaluated. Therefore, completely ignoring an already vulnerable group of the population is unjustifiable.

References

1. Making disability count: The Hindu Editorial on why NFHS will yield more robust, data on the disability sector. (2023). The Hindu. [online] 2 Jul. Available at: https://www.thehindu.com/opinion/editorial/making-disability-count-the-hindu-editorial-on-why-nfhs-will-yield-more-robust-data-on-the-disability-sector/article67034559.ece.

2. Govt drops disability-related questions from National Family Health Survey. (2023). The Times of India. [online] 26 May. Available at: https://timesofindia.indiatimes.com/india/govt-drops-disability-related-questions-from-national-family-health-survey/articleshow/100526666.cms?from=mdr [Accessed 9 Aug. 2023].

3. Business Today. (2022). NFHS-6 to evaluate outcome and impact of health schemes. [online] Available at: https://www.businesstoday.in/latest/story/nfhs-6-to-evaluate-outcome-and-impact-of-health-schemes-332645-2022-05-06 [Accessed 9 Aug. 2023].

4. rchiips.org. (n.d.). National Family Health Survey (NFHS-5). [online] Available at: http://rchiips.org/nfhs/factsheet_NFHS-5.shtml.

5. Anicca, A. (2022). Data Gaps: Undercounting Disability In India. [online] www.indiaspend.com. Available at: https://www.indiaspend.com/data-gaps/undercounting-disability-in-india-826835 [Accessed 24 May 2023].