People with disability make up approximately 15% of the world’s population and are, therefore, a major focus of the ‘leave no-one behind’ agenda. It is well known that people with disabilities face exclusion, particularly in low-income contexts, where 80% of people with disability live. Understanding the detail and causes of exclusion is crucial to achieving inclusion, but this cannot be done without good quality, comprehensive data. Against the background of the Convention for the Rights of Persons with Disabilities in 2006, and the advent of 2015’s 2030 Agenda for Sustainable Development there has never been a better time for the drive towards equality of inclusion for people with disability. Governments have laid out targets across seventeen Sustainable Development Goals (SDGs), with explicit references to people with disability. Good quality comprehensive disability data, however, is essential to measuring progress towards these targets and goals, and ultimately their success. It is commonly assumed that there is a lack of disability data, and development actors tend to attribute lack of data as the reason for failing to proactively plan for the inclusion of people with disabilities within their programming. However, it is an incorrect assumption that there is a lack of disability data. There is now a growing amount of disability data available. Disability, however, is a notoriously complex phenomenon, with definitions of disability varying across contexts, as well as variations in methodologies that are employed to measure it. Therefore, the body of disability data that does exist is not comprehensive, is often of low quality, and is lacking in comparability. The need for comprehensive, high quality disability data is an urgent priority bringing together a number of disability actors, with a concerted response underway. We argue here that enough data does exist and can be easily disaggregated as demonstrated by Leonard Cheshire’s Disability Data Portal and other studies using the Washington Group Question Sets developed by the Washington Group on Disability Statistics. Disaggregated data can improve planning and budgeting for reasonable accommodation to realise the human rights of people with disabilities. We know from existing evidence that disability data has the potential to drive improvements, allowing the monitoring and evaluation so essential to the success of the 2030 agenda of ‘leaving no-one behind’.

The SARS COVID-19 pandemic emerged in 2019 and has impacted people everywhere. Disparities in impact and outcomes are becoming apparent for individuals and communities which go beyond the trajectory of the disease itself, influenced by the strength and weaknesses of systems of universal health care, and the actions of civil society and government. This article is one of a series exploring COVID-19-related experiences of assistive technology (AT) users across the globe and implications for AT systems strengthening. AT such as mobility products, braille devices, and information communication technologies are key enablers of functioning, necessary to the achievement of the UN Sustainable Development Goals and enshrined in the Convention on the Rights of Persons with Disabilities. Reporting on a survey of 73 AT users across six global regions, we demonstrate that minority groups already living with health inequities are unduly impacted. An AT ecosystem analysis was conducted using the WHO GATE 5P framework, that is, people, products, personnel, provision and policy. AT users and families call for inclusive pandemic responses which encompass their needs across the lifespan, from very young to very old. We offer specific recommendations for future action to strengthen access to AT across public policy and civil society in pandemic preparedness and response.

Globally, health systems face challenges in the delivery of assistive technology (AT) and only 10% of people are currently able to access the assistive products they need. The COVID-19 pandemic presented an uncharted path for AT providers to navigate, placing them under pressure to be agile and rapidly adapt. This article, part of a series, explores the experiences and impacts of the COVID-19 pandemic on AT providers and aims to inform how AT providers can be better prepared and supported in the future. A mixed methods approach was used to gather service data and perspectives from AT providers via a survey. A total of 37 responses were received from 18 countries. Service data showed extensive service disruption throughout 2020. Thematic analysis suggested significant changes to routine AT service delivery including rapid momentum towards home-based, decentralised, and digital services for which many AT providers were not prepared. Providers were required to make difficult decisions and deliver services in new ways to balance meeting demands, complying with government restrictions, and ensuring the safety of staff and clients. Few but important positives were expressed including the belief that expanded capacity to use remote and digital AT service delivery would remain useful in the future.

Disability is complex and multifaceted, complicating governments’ efforts to collect the high-quality, comprehensive data necessary for developing, implementing, and monitoring policies. Yet data are needed to obtain information on functioning in the population, to identify the population with disabilities, and to disaggregate indicators of well-being by disability to determine whether people with disabilities are participating in society to the same extent as those without disabilities. In this article we discuss the need for data harmonization to improve disability research and policy. We describe standard question sets on disability developed for inclusion in surveys and administrative systems, as well as the need for coordination of both statistical and administrative data systems. Until disability data become more harmonized, it will not be possible to support the development of comprehensive, evidence-based policies and programs to address the needs of the population with disabilities.

People with disabilities face extra costs of living to participate in the social and economic lives of their communities on an equal basis with people without disabilities. If these extra costs are not accounted for, then their economic wellbeing will be overestimated. The Standard of Living (SOL) method is a way of generating these estimates and is thus useful for determining the economic impact of those costs in the current environment. However, previous studies have used different indicators for disability and different measures of the standard of living, so it is hard to compare estimates across different countries. This study applies a consistent set of indicators across seven African countries to produce comparable estimates. Our estimates of the extra costs of living in these lower-income countries are much lower than the results produced for higher-income countries in prior work. We argue that this finding highlights the limitations of the SOL method as a useful source of information for developing inclusive systems of social protection in lower-income countries because it captures what households spend but not what the person with a disability needs to fully participate in the social and economic lives of their community. In lower-income countries, people with disabilities are likely to have fewer opportunities to spend on needed items thus resulting in substantial unmet need for disability-related goods and services. Failing to account for these unmet needs can lead to inadequate systems of social protection if they are based solely on SOL estimates.

For social protection policies to be inclusive they must address the extra costs that people with disabilities incur. Studies show that these costs are highly significant and if not taken into account the economic wellbeing of people with disabilities is underestimated. Additionally, disability costs vary significantly by the type and degree of disability. To align the structure of social protection programs with how costs are incurred to promote equal participation requires estimating those costs. The Goods and Services Required approach, it is argued, is better than the often used Standard of Living Approach, and has implications for policy design.