Suggest draft of letter to Parliamentarians: whereas census 2011 identified the percentage of disabled population to be 2.21 per cent, NFHS-5 has an estimate of 1 per cent only. The lack of data on 21+ disabilities in mainstream research reports and crime records by the govt is obvious.The lack of proper data leads to deprivation, with many being left out of various social security schemes amongst others.
introduce a mandatory registration system for disabilities. Such mandatory registration should be done at the level of the rural/urban bodies; anganwadis; schools; community health centres, village sanitation & nutrition committees etc.
draft for letter to Parliamentarians - draft in circulation
Respected Representative of Citizens,
Subject: Development of an Accurate Database on Disability through Mandatory Registration System as well as disaggregated data on disability in all the existing and upcoming surveys by all governments.
You may be aware that the questions surrounding disability have been omitted from the National Family Health Survey being undertaken this year. Those who have taken this decision, have at one stroke virtually obliterated a community from an important data base, let alone mapping their status on various scales that the Survey would do.
We need not point out to you, the consequences of the lack of data and their impact on planning and a range of connected issues. Disability rights activists have time and again raised the issue of non-availability of accurate data concerning disabled people, in various forums including the C20 Disability Equity & Justice working group conference on 29th May 2023, under the G20 platform currently presided over by India. They have pointed out that none of the current estimates with regard to persons with disabilities are captured correctly, including the Census.
Needless to point out that given the various methodologies adopted by different government agencies -- the census, the NSSO, the NFHS to name a few -- the results also vary and at times very sharply. For e.g. whereas census 2011 identified the percentage of disabled population to be 2.21 per cent, NFHS-5 has an estimate of 1 per cent only. The lack of data on 21+ disabilities in mainstream research reports and crime records by the govt is obvious.
The lack of proper data leads to deprivation, with many being left out of various social security schemes amongst others.
Given this background, it is important that accurate and foolproof mapping of data concerning disabled persons be done. As you are aware, India has ratified the United Nations Convention on the Rights of Persons with Disabilities in 2007 and enacted the Rights of Persons with Disabilities Act based on the said Convention in 2016.
Article 31 of the CRPD dealing with statistics and data collection calls for State Parties to collect disaggregated data on persons with disability. This is a mandatory obligation. Failure to comply this provision in any survey at the national and state level including NFHS will also lead to the non-implementation of rights of women with disabilities especially in the area of reproductive health,(vide Section 10 of the RPDA) the general right to health guaranteed under Section 25(2) of the Act, hamper social audits that are mandated by Section 48 and research and development on disability related issues as mandated by Section 28 of the RPDA, 2016. All these Sections highlighted above are mandatory obligations that cannot be fulfilled without collection and analysis of disaggregated data on disability. In addition, Sec 15.1 of the draft National Policy for Persons with Disabilities 2021 by MSJE, Govt of India claims the need for effective disability data management to measure the level of progress of implementation of RPDA 2016 and the targets associated with the inclusion of persons with disabilities in Sustainable Development Goals (SDGs). Progressive realization of universal health coverage is also one of the key features of the UN Sustainable Development Goals as it can ensure that everyone, everywhere has access to essential health services including nutrition, rehabilitation and assistive technology, without facing financial barriers.
As the Government of India has committed to effective inclusion of persons with disabilities in all policies and programs by signing and ratifying CRPD, the Ministry of Health and Family Welfare must include persons with all 21+ disabilities and other vulnerable groups in all their surveys, research studies and reports . Ministry's MIS MUST include all 21+ disability categories.
While the Unique Disability ID (UDID) is supposed to capture appropriate data, it leaves much to be desired given its lopsided and poor implementation. Also the Rights of Persons with Disabilities Act, 2016 mandates that a survey of school-going children to identify disabilities be conducted every five years. Sec. 17 (a) lays down: “to conduct survey of school going children in every five years for identifying children with disabilities, ascertaining their special needs and the extent to which these are being met: Provided that the first survey shall be conducted within a period of two years from the date of commencement of this Act”. Unfortunately, no such survey has been conducted anywhere in the country.
The above instances raise the following questions within the disability sector and the general public:
a. Why is it that government is facing challenges even after 76 years of independence and 73 year old history of Constitution/ secular democracy in coming out with standard operational process for data collection disagregation and publication particularly with reference to the most marginalised citizens with disabilities of India?
b. what are the real obstacles to access knowledge and experience of experts and professionals to standardise enumeration processes?
c. what form of support is required to fulfil our obligations of data collection disaggregation and publication?
(1) To tide over these issues, one of the methods we would suggest is the introduction of a mandatory registration system for disabilities. Such mandatory registration, we would suggest, be done at the level of the rural/urban bodies; anganwadis; schools; community health centres, village sanitation & nutrition committees etc., where appropriate but specific information can be collected. We can go into the details once the process is approved.
(2) Parallelly, collection of disaggregated data on disability should be mandated in all surveys carried out by all government agencies in lines with the totally inclusive, twin track approach of the CRPD.
(3) These processes should invariably engage the participation of the disability community at all decision making, implementation and monitoring levels, including adding representatives from disability groups into the panels being set up by the government to review survey committees.
(4) Enumerators should be able to register all disabled people on the basis of self reporting irrespective of whether they have disability certificate or not and report and be trained accordingly. Govt. should monitor those who do not have disability certificate but have identified themselves as disabled in surveys and facilitate certification by appropriate ways and means.
By implementing this comprehensive system of mandatory registration as well as definite inclusion in all surveys, we can create a reliable and accurate database on disabilities in India. This data would be invaluable for policymakers, researchers, and service providers to design and implement targeted interventions, allocate resources effectively, and monitor the impact of disability-related programs.
We are sure, given your sensitivity to disability issues, you will raise the issue at appropriate forums and fulfill a long standing demand of disability rights activists in the country.