Realizing the rights of persons with disabilities requires quality, policy-relevant disability data. There are various options when it comes to collect such data. One option is to gather environmental and policy data to identify changes that are required in terms of physical and social barriers (e.g. Banda-Chalwe et al 2014) or policy (e.g. Díaz Ruiz et al 2015). Another option is to have a qualitative and participatory exercise involving multiple stakeholders including persons with the lived experience of a disability and civil society (e.g. Banks et al 2021). While these options may go a long way in understanding the situation of persons with disabilities and informing policy and advocacy efforts, they would not provide nationally representative information on individuals and households and may be difficult to compare across countries.

Quality and policy-relevant statistics are therefore needed. Statistics need to be presented by disability status and based on a human rights approach to disability. They should also reflect the diversity of persons with disabilities and various aspects of their lives. For instance, there is a need for statistics on access to general services such as education and health services and on social and economic justice issues (e.g. employment, poverty). This “disability data gap” has consequences, in the lack of attention to disability in policy and in the lives of persons with disabilities. For example, a person with disability may not be considered as poor and eligible for benefits if their income is above the national poverty line when in fact they may have high out-of-pocket costs for basic services (e.g. health care). Awareness of, and statistics on, such costs are lacking.

Global reporting on disability rights and human development indicators is essential to inform and support disability policy and advocacy worldwide. In particular, there is a need to monitor data and produce statistics disaggregated by disability status, related to the rights stipulated in the Convention on the Rights of Persons with Disabilities (CRPD) that has been ratified by 182 countries. Article 31 of the CRPD requires that States Parties “collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention”.

The United Nations (UN) Sustainable Development Goals (SDGs) adopted by Heads of States in 2015 as part of the 2030 Agenda for Sustainable Development also need to be monitored for persons with disabilities.

While awareness of the disability data gap and data collection tools have improved (United Nations 2019), there remains a need to produce statistics on disability in a consistent and systematic basis as national statistics offices rarely disaggregate statistics by disability status. There have been efforts to develop global disability data portals (Leonard Cheshire 2018; United Nations 1990; United Nations 2018). However, these efforts have so far used a variety of disability measures, limiting their international comparability.

Using national census and household survey data, the disability data initiative (ddi) provides:

(i) A systematic analysis of the disability questions in national censuses and household surveys globally.

(ii) Indicators disaggregated across disability status for countries with census or household survey data that have internationally comparable disability questions.

This report documents the availability of questions on disability between 2009 and 2018 in national censuses and surveys. This report also presents disaggregation results for 41 countries with censuses or national surveys with functional difficulty questions in at least four domains (seeing, hearing, walking, cognition). For some countries, data is also available for the self-care and/or communication domains and the Washington Group Short Set of questions (Altman 2016) is used. This report covers functional difficulty prevalence and selected indicators for persons with and without functional difficulties. More background is in Method briefs (Appendix 3) and more results are available in Country briefs (Appendix 4) and in Results data tables on the ddi website.