Disability data will not change very fast and there is no reason to collect this data every three years, said the Health Ministry, in response to criticism over the exclusion of disability-related questions in the sixth round of National Family Health Survey (NFHS-6) which is set to begin shortly.
Stating that the primary focus of NFHS is maternal and child health, the Department of Health and Family Welfare (Statistics Division) said that the Survey won’t be able to collect accurate data on disability in its current form. It pointed to the disparity in disability data collected by NFHS and National Sample Survey Office (NSSO) and asserted that “it is not possible to capture the all-India extent of disability” through NFHS and warned about the risk of “significantly underestimating the prevalence of disability”.
In its two-page communication, dated June 22, the Department said that most of the data related to disability are already available in the ‘Report of NSS 76th round’, which was a dedicated survey conducted during July-December 2018 to collect detailed information on this aspect.
“And, any specific information can be tabulated from the raw data, which is also available in the public domain,’’ it said.
It went on to explain that questions are included in the NFHS-6 based on recommendations by the Technical Advisory Committee (TAC) and other higher-level committees constituted for smooth functioning of the Survey.
“Taking into consideration the consensus of all the members and availability of other data sources, TAC recommended that proposed questions related to disability estimates need not be included in NFHS-6,’’ it said.
The letter further said that it had been observed by TAC that types of disability had several medical terminologies, which may result in inappropriate responses as the respondents might not be aware of the specific disabilities. NSSO, in its survey, collected detailed information on disabilities, which would be more reliable in this domain.
“The questions on disability were included for first time in the fifth round of NFHS [NFHS-5] which was carried out during 2019-21. And based on NFHS-5 report, it was observed that disability prevalence was only 1% for rural areas and 0.9% for urban areas while NSSO estimates for the year 2018 showed 2.3% for rural areas and 2% for urban areas,’’ it said.
Reacting to the communication, disability rights activists questioned the basis of the explanation and said that people with disabilities in India experience an average loss of 10-17 years in life expectancy and closing this 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 effective design of policies. 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,’’ said Satendra Singh from Doctors with Disabilities: Agents of Change. The group has written to all senior officials related to the matter.
Dr. Singh added that “the lifespan of individuals with the most severe form of Sickle Cell Disease (SCD) is, on average, 20-30 years shorter compared to the SCD-affected population in the United States”.
“However, we lack data on this disability in India, despite the government’s claim to ‘eliminate’ SCD by 2047. The government’s response stating that data does not change over three years, demonstrates a lack of sensitivity towards the lives of children with SCD and those with other disabilities,’’ he said.