Context: The Government of India has decided to omit disability-related questions from the sixth round of the National Family Health Survey (NFHS-6).

When was disability related questions included in the NFHS Survey?

• The questions on disability were included for the first time in the NFHS-5 which was carried out during 2019-21.

• Based on the NFHS-5 report, it was observed that disability prevalence was only 1% for rural areas and 0.9% for urban areas.

• However, National Sample Survey Office (NSSO) estimates for the year 2018 showed 2.3% for rural areas and 2% for urban areas.

Why has NFHS-6 decided to omit disability-related questions?

• According to the Ministry of Health, the disability related questions are not included in NFHS-6 as the disability data will not change very fast and there is no reason to collect this data every time.

• This decision has been criticized as the persons with disabilities make up around 2.21% of India’s population, totaling about 2.68 crore people according to the 2011 Census.

• The Census data does not fully represent the current disabled population due to population growth over the past decade and the limited categories of disabilities recognized in the Census.

• These numbers could be under-representative owing to population upsurge in the last decade and Census data represents only seven defined categories of disabilities.

• The Right of Persons with Disability Act 2016 (RPWDA) increased the type of disabilities from 7 to 21.

• It fulfils the obligations to the United National Convention on the Rights of Persons with Disabilities (UNCRPD), to which India is a signatory.

• The disabilities are divided as Physical disability, Intellectual disability, Mental, Disability due to chronic neurological conditions and blood disorders, and multiple disabilities.

Concerns over omission of disability data

• It contravenes Section 25(2)(c) of the RPWDA, which mandates the annual screening of all children.

• Strategy for New India @ 75 (Niti Aayog) delineates the government’s goals for 2022-23, and recognises challenges posed due to a lack of detailed data in drafting policies for persons with disabilities.

• This represents a failure to appreciate the dimensions of disability and reflects the looming tendency to oversimplify disability and related issues.

• The oversight of India’s substantial birth rate of 16.949 births per 1,000 people reflects the persistent tendency to oversimplify disability-related problems.

• The disability right could be relegated to a secondary status in an era of progress.

About National Family Health Survey (NFHS-6)

• NFHS-6 provides information on population, health, and nutrition for India and each state and union territory based on district-level estimates of various indicators.

• Ministry of Health and Family Welfare (MoHFW) conducts one integrated survey at an interval of about 3 years.

• It would present a valuable opportunity to sensitize a wide sample size and extensive coverage of health data of the people, including surveyors and enumerators.

Limitations of Persons with Disabilities (Divyangjan) in India (2021) report

• It refers to only eight categories of disabilities.

• It fails to acknowledge and account for the 21 categories of disabilities recognized after the enactment of RPWDA.

• It overlooked the recognition and consideration for the needs, perspectives, and basic rights of persons with disabilities.

• Nearly 24 lakh persons were affected by mental health-related illnesses, but failed to identify or acknowledge the concept of invisible disabilities.

• It suggested symptoms of invisible disabilities under the categories of mental retardation, mental and others.

Need for collection of data

• Sections 27 and 28 of the RPWDA mandate the government to promote research and formulate schemes to safeguard and empower persons with disabilities.

• Section 25 calls for surveys, investigations, and disability-centering research by the government.

• 20 crore people in India may be affected by psychosocial disabilities.

• It differs from legislatively recognized categories of mental illness and intellectual disability.

• The need for regular data collection is significant for Sustainable Development Goals (SDGs) 2030 target (Leaving no one behind) and the United Nations Convention on the Rights of Persons with Disabilities.

Issues because of under representation of Persons with Disabilities

• Lack of Accurate Data: Without including questions related to disabilities, it becomes challenging to gather accurate and up-to-date data on the disabled population in India.

• Invisibility of Invisible Disabilities: Many disabilities, particularly “invisible disabilities” like mental health conditions, often go unnoticed or unreported. The omission of questions related to such conditions exacerbates the invisibility of these disabilities.

• Limited Policy Insights: Policies and programs designed to support people with disabilities may not be comprehensive or targeted effectively without a clear understanding of the disability landscape.

• Exclusion from Development Goals: The United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the Sustainable Development Goals (SDGs) emphasize the inclusion and empowerment of people with disabilities.

• Barriers to Accessing Services: People with disabilities often face barriers in accessing healthcare, education, employment, and social services.

• Underreporting of Disabilities: When individuals do not see their specific disabilities reflected in data collection efforts, they may be less inclined to self-identify or seek support.

• Stigmatization and Discrimination: When disabilities are not recognized or understood, individuals with disabilities may face exclusion, bias, or negative stereotypes.

• Missed Opportunities: Comprehensive data on disabilities can provide valuable insights into the diverse needs and experiences of people with disabilities.

Conclusion

• 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