It is a mistake to remove questions about disability


In May, the announcement that the National Family Health Survey scheduled for 2023-2025 has removed survey questions on disabilities on Technical grounds was a significant blow to the disability sector in India. The disability sector in India already has difficulty accessing data on disability related to topics such as employment, education, and public health.

Data from the NFHS–one of the NFHS-5 was conducted between 2019-2021 and included the first questions about disabilities.

Figures 1 and 2 show the areas covered by men and women in the NFHS-5 questionnaires.

These data are crucial to the design of better services. The survey, conducted every three years, allows tracking the health indicators of those with disabilities.

Data about disabilities was not made public, even though the NFHS-5 questionnaire contained questions on disability. The primary reason for this was that the disability data collected by the survey was inaccurate and could lead to wrong estimatesSurveyors were not trained to verify medical certificates or record disability. Understanding the disability question is also a problem.

Is it a problem? Exist other ways to collect disability statistics?

As can be seen in Figure 3, three questions numbered 31, 32, and 33 relate to disability.

Figure 3: Disability questions in NFHS-5 questionnaire.

Questions are straightforward. The NFHS-5 process did not require the verification of disability certificates. Self-reporting was used to identify disability based on definitions. The definitions provided by the interviewer are shown in Figure 4.

Figure 4: Disability definition as defined in the NFHS-5 Interviewer’s Manual.

The Interviewer’s Manual for NFHS-5 provides interviewers with guidelines on answering questions sensitively. It also suggests that interviewers initiate a conversation by explaining to respondents how data about disabilities can assist the government in planning for their welfare. The self-reporting system has some limitations.

First, they are geared towards the “medical” model of disability and ignore the “social” model or functional limitations. While not complicated, the definitions can be confusing if the interviewer has not been adequately trained. Third, the respondents may have difficulty understanding the intentions when answering the questions.

This confusion may lead to either over- or under-reporting. The possibility of inaccurate data is not excluded. Despite data collection limitations, dropping disability from NFHS-6 would be a missed opportunity.

Dropping the disability question will impede the scope of evidence-based disability-related policy decisions. | Picture courtesy: Pexels

Is there a way to collect disability data in the health sector?

It is essential to discuss the options for generating similar disability data now that disability questions have been removed from the NFHS-6. Three possible channels are a. developing a health survey for people with disabilities; b. modifying disability-specific surveys to include data points originally covered by NFHS-5; and c. including disability data in other general data collection initiatives.

Although ideal, the first channel presents some challenges. It isn’t easy to create a survey entirely from scratch. This requires a lot of resources, including the technical resources needed to design and train data collectors.

Further, the method of collecting data separately on people with disabilities makes it difficult to make comparisons between segments of the population who have disabilities and those without. This could be a problem, especially when designing policies for the general public that must also cater to people with disabilities.

In evaluating the second option, it is important to note that there are no other surveys with a larger sample size and a wider range of health data than the NFHS. In the NFHS-5, there were 7,24115 women and 1,018,39 men living in 636-699 households. The number of interviews for the upcoming NFHS-6 is expected to be 7,45488 women, and 1,19501 men, in 670032 households.

The majority of variables in NFHS are unique. The Persons with Disabilities Survey of the National Sample Survey, the only disability survey in India, includes a limited number of questions about the health and wellbeing indicators covered by NFHS. The National Sample Survey questionnaire can be expanded to include a module on health, but it would be resource intensive. The National Sample Survey of Persons with Disabilities is not conducted on a regular basis.

This last option allows for the improvement of data quality in disability, not only at the intersection between disability and health. This could be through any data collection initiative, even pooling program-specific data collection by civil society initiatives, or scheme-implementation data by the government.

Data in the field of disability can be difficult to obtain. To address this issue, the draft policy for 2022 included the Unique Disability ID Project in the plan as a way to create a national database of people with disabilities. When this database is linked to all service delivery mechanisms, it could provide data in real-time on Persons With disabilities.

The Unique Disability ID is expected to be the backbone of India’s disability data ecosystem. However, people with disabilities face difficulty obtaining the cards due to a lack of knowledge, confusion about the process, delays in administrative procedures, and backlogs.

Removing the disability question would limit the ability to make evidence-based decisions about disability policy. This will restrict India’s capacity to track progress towards the Sustainable Development Goals and achieve the “no person left behind” target by 2030.

There is no short-term solution to the data gap created by removing the NFHS disability question. However, developing reliable mechanisms for collecting and disaggregating disability data will be essential to fostering meaningful participation for people with disabilities.

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