In a shocking move, the upcoming National Family Health Survey-6 (NFHS-6) has dropped crucial disability-related questions from its survey questionnaire.
This decision has raised concerns among disability rights activists and organisations who argue that collecting data on disability is essential and a matter of basic human rights.
A group of concerned citizens and health experts from across the country has now taken up the matter with the Union Health Ministry, seeking to get the decision reversed.
In a letter sent to Union Health Minister Mansukh Mandaviya on Monday, 5 June, the group said: “Considering the focus of socio-economic development aspects — categorised into gender, households, and bio-marker subthemes — and an addition of around 50 new questions to NFHS-6, dropping the two questions on disability from the household subtheme is a discriminatory approach against persons with disabilities and the development of health policies and programs related to them.”
As the NFHS-6 survey is scheduled to commence in just a month’s time, the groups said that “it is imperative that the Ministry of Health and Family Welfare acts swiftly and prioritise the inclusion of the disability question in NFHS-6” to facilitate disaggregated data and formulation of development programmes for the 26.8 million persons with disabilities in the country.
“We hereby urge (you) to intervene and take necessary action to reinstate the disability question in NFHS-6 within the next 10 days, failing which the disability sector will be left with no option but to seek relief in other appropriate forums,” said the letter, signed WE, the People of India.
An appeal letter to policymakers
This is not the first time the Union Health Ministry is being petitioned on the issue.
Last month, Dr Satendra Singh of Doctors with Disability: Agents of Change, who has been fighting for the rights of doctors with disabilities, wrote to the Prime Minister’s Office, the chief secretary, and the Union health minister on this issue.
He stated that people with disabilities in India experience an average loss of 10-17 years in life expectancy, as indicated by the recent 2022 Missing Billion Report on “Reimagining Health Systems”, in which he served as part of the advisory panel.
Dr Satendra Singh said that closing the life expectancy gap for the world’s largest minority group requires access to comprehensive health data. “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,” he wrote.
“With the NFHS-6 survey scheduled to commence in just a month’s time, it is imperative that we act swiftly and prioritise the inclusion of the disability question. We kindly request your esteemed office to intervene and take necessary action to reinstate the disability question in NFHS-6,” Dr Singh stated in his letter.
With NFHS-6 scheduled to start on 6 July, several experts and contented citizens of India have started an online petition campaign seeking the addition of disability-related questions in the survey questionnaire.
“Whilst NFHS-5 (2019-21) had disability-related questions and collected data on disabilities, information from International Institute for Population Sciences (IIPS) and Department for Empowerment of Persons with Disabilities (DEPWD) confirm that NFHS-6 has dropped questions on disability from its survey questionnaire,” his letter stated.
When South First asked what kind of questions could be asked in the NHFS-6 survey, he said: “There is an already existing Washington set of questions — and we need a standarised questionnaire for international data comparison.”
He added: “This has already been used in the country and gave a close and correct prevalence of 12 percent disability in Telangana. The census under-reported disability by at least two percentage points.”
Why are these questions being removed?
According to sources South First reached out to, in the 2019-21 survey, questions related to disability were included for the first time.
However, the survey reportedly did not provide accurate data. The officials, who were part of the survey, then suggested that disability should be decided based on medical certification and said that surveyors are not doctors.
Also, people couldn’t answer the questions on disability clearly, hence, the Technical Advisory Committee decided to drop the questions. Additionally, the data from these questions were not included in NFHS-5 either, said the sources.
However, to this argument, the letter — signed by concerned citizens and health experts of the country — argued that the NFHS needed to sharpen its questionnaire on the disability front and make it more relevant by consulting people with disabilities.
Instead, it has reversed the process by removing disability-related questions altogether.
Meanwhile, Dr Singh told South First that the Ministry of Health & Family Welfare, under the National Health Mission, launched the Rashtriya Bal Swasthya Karyakram (RBSK).
This programme involves screening children from birth to 18 years of age for 4 Ds — Defects at birth, Diseases, Deficiencies, and Development delays. It covers 32 common health conditions for early detection, free treatment, and management.
However, the RBSK scheme only includes sickle cell disease and thalassemia as optional and not mandatory, even though these two blood disabilities are specified in the Rights of Persons with Disabilities Act (RPDA 2016).
Lack of data — a common excuse
Dr Singh explained that while the Government of India increased the recognised disabilities from 7 to 21, the job reservation for people with disabilities increased only by 1 percent (from 3 to 4 percent). The reason provided for this decision was the lack of data.
He argued, “Underreported census data and the removal of disability questions will prevent us from obtaining the necessary data, violating commitments made under the United Nations Convention on the Rights of Persons with Disabilities, Sustainable Development Goal 3 on health, and the recent WHO Global Report on Health Equity for Persons with Disabilities.”
The experts argued that these commitments emphasise the crucial need for data collection and disaggregated data on disability. Removing disability-related questions from the survey contradicts the principle of “leave no one behind”.
Dr Shakeeb Ahmed Khan, an independent consultant working in field of disability and inclusion, told South First, “It is extremely important that we know prevalence of disability in the Indian population. If we don’t know how many Indians have disability and what type of disability, how will the state and Union government plan welfare programmes and allocate funds for persons with disabilities?”
“The last census mentioned 2.1 percent of the Indian population has disability. But it was data from 12 years ago,” he pointed out.
“In the absence of accurate and correct figures, disability issues will never get highlighted in mainstream agenda like children with disabilities needing education, youth with disabilities needing vocational training, or adults with disabilities needing jobs,” he added.
Dr Khan has previously worked with WHO and UNDP and he is also a parent to a child with developmental disability.