An estimated 240 million children have some form of disability. Sadly, many of these children continue to be left behind. This, despite near-universal ratification of the Convention on the Rights of the Child, the call for action embedded in the Convention on the Rights of Persons with Disabilities, and the principle of inclusivity set by the Sustainable Development Goals (SDGs). The lack of high-quality data on children with disabilities and the environmental barriers they face hinders the development of policies and programmes that could give these children the specific support they need. When absent from official statistics, children with disabilities are politically and socially ‘invisible’. They remain marginalized and exposed to violations of their human rights.
Advances, but still a long way to go
Although most countries have collected disability data for decades, the quality and relevance of such data have varied significantly. The majority of data collection efforts have relied on stigmatizing terminology and definitions. As a result, available estimates often fail to provide an accurate account of the number of the persons with disabilities and the deprivations they face.
To reduce the gap in high-quality and internationally comparable data on children with disabilities, UNICEF and the Washington Group on Disability Statistics released the Child Functioning Module (CFM) in 2016. The module conforms to the biopsychosocial model of disability and consists of questions that can be used to identify children with functional difficulties.
While the implementation of the CFM has resulted in a substantial increase in quality data on children with disabilities, challenges remain. For one, the CFM has not been universally adopted. To date, over 50 low- and middle-income countries have used the CFM. The majority of the world’s countries are still using narrow and outdated definitions and questionnaires to count children with disabilities and to gather information on their well-being, thereby making it difficult to compare estimates between countries. Even when countries are using the CFM for one data source, multiple definitions and tools are often used across other data sources within the same countries, leading to confounding estimates.
What’s needed: Harmonization of methods and data sources
Some challenges are inevitable. Disability is a multidimensional concept and various data sources within a country are needed to obtain a holistic picture of children with disabilities and their lived experiences. These data sources need to cover a range of topics, from the personal characteristics of an individual child to her or his access to assistive devices, benefits and services. Data must come from censuses and surveys as well as administrative systems managed by a variety of partners, including at different levels of government. What is critical is that all of these sources categorize children with disabilities using the same criteria to define this population.
The CFM provides a validated method to do so. While initially developed for use in surveys, it has the potential to be used in data systems countrywide. Towards this end, UNICEF and the Washington Group are now testing the use of CFM questions in Education Management Information Systems. Several additional stakeholders have already adapted the module to other data sources, and the results so far are promising. Fiji, for example, is using the CFM to identify children with disabilities in its Education Management Information System and analysing the resulting information alongside data on schools’ physical infrastructure, learning materials, human resources and accessible communication. Rwanda is using the CFM in its Disability Management Information System to fill knowledge gaps.
Partnerships: Fostering coordination and outreach
Partnerships play a key role in harmonizing methods and data sources globally and at country level. The UN Data Forum provides a platform to highlight the challenges and opportunities regarding data on children with disabilities. The Forum’s thematic area 1, Innovation and partnerships for better and more inclusive data, aligns with the need for data harmonization and partnership to achieve data inclusivity.
At the global level, a new partnership was launched by UNICEF in 2021 called the Centre of Excellence on Data for Children with Disabilities. The Centre is guided by a Strategic Advisory Group comprised of individuals from key stakeholder organizations internationally who have the insight and expertise to forge practical and strategic collaborations. One of the Centre’s goals is to foster the harmonization of data collection methods within countries so that they build from the same definition and framework. At the same time, it continues to promote the use of the CFM across countries.
To achieve these ends, the Centre convenes experts to promote the development and uptake of data collection tools. It also partners with stakeholders to build capacity on data collection and analysis, and advocates for data inclusivity. For example, the Centre is organizing a four-day summer school course on data analysis in August 2023, in partnership with the Department of Psychology and Cognitive Science of the University of Trento in Italy. The training will focus on analysing and interpreting data obtained through the CFM.
Collective and coordinated efforts like those promoted by the Centre are critical to addressing data needs as varied and as complex as those related to children with disabilities. It will take a carefully orchestrated response among multiple partners to close the data gap and improve the lives of children with disabilities worldwide.
The UN Data Forum provides an opportunity to explore how partnerships can foster more inclusive data. Thematic area 1 recognizes the importance of partnerships and collaboration among stakeholders to enhance the quality and availability of data for all children, including children with disabilities. The high-level plenary session for thematic area 1, Innovation and partnerships for better and more inclusive data, sets the stage by discussing integration of data through innovations and partnerships to foster a more inclusive data ecosystem. Session TA1.30 highlights some good practices of multi-stakeholder partnerships to strengthen disability data. Although not specifically on disability data, session TA1.14 provides insights on innovative partnerships. In addition, session TA1.09 discusses innovative approaches to inclusive data.