Current Status + Progress
Research and data on child disability are scarce, hindering the development of effective policies and programmes

The 2007 UN Convention on the Rights of Persons with Disabilities establishes that children with “long-term physical, mental, intellectual or sensory impairments” should enjoy the same human rights and freedoms as other children. The Convention goes on to say: “In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration,” and  “…children with disabilities have the right to express their views freely on all matters affecting them.”

Discrimination against children with disabilities often leads to reduced access to basic social services, especially education, and general lack of recognition. Addressing discrimination and promoting inclusion is an issue of concern in all sectors, and can be accomplished through information and advocacy, strengthening policy and facilitating access to services. The development of relevant policies and programmes, however, has been constrained by a lack of precise data on children with disabilities. This is due mainly to inadequate data collection and research on the subject, especially in developing countries. No reliable global estimates on child disability are therefore currently available, although efforts to remedy the situation are well under way.

DATA CHALLENGES

The UNICEF approach to conceptualizing and defining disability is consistent with the UN Convention on the Rights of Persons with Disabilities (article 31 of the Convention outlines the responsibilities of States parties in terms of statistics and data collection). Furthermore, the approach relies on the International Classification of Functioning, Disability and Health (ICF), developed by the World Health Organization (WHO). Within this framework, the focus is on the relationship between the individual and his or her environment – that is, the limitations or barriers in performing daily activities and restrictions or supports to social participation. A child and youth version of this classification (ICF-CY) helps to identify areas of daily life in which children experience difficulties functioning in their environments.

Data on child disability are available from a large array of sources, including censuses, administrative records, national disability surveys and national household surveys. Major challenges in producing reliable and comparable statistics are the lack of consistent definitions and indicators of disability, combined with disparities in the methodologies used to gather data. The quality of study designs is another area of concern. In some cases, the poor quality of available data stems from a lack of understanding of what disability is in children. In other cases, it is due to stigma or poor detection systems that prevent the collection of reliable data, particularly in low- and middle-income countries. The varying nature and severity of disability further complicate its measurement.

PROGRESS

Despite these obstacles, a major global effort is under way to make these children visible so that they can reach their full potential. With support from the Australian Department of Foreign Affairs and Trade and the UN Partnership on the Rights of Persons with Disabilities (UNPRPD), national statistical offices and data collection agencies along with UNICEF and the Washington Group on Disability Statistics, are all working to improve the availability, quality and international comparability of methodologies and data on child disability.

As a first step in addressing the need for comparable and reliable data on children, in 2000, UNICEF began implementing the Ten Questions Screen (TQ)[i] for childhood disability. This screening instrument was included as part of the Multiple Indicator Cluster Surveys (MICS) and was developed by a team of scientists. The objective was to create a low-cost and rapid method for identifying children who have congenital and developmental disabilities in populations where professional resources are extremely scarce. By including the Ten Questions Screen, MICS has become the largest source of internationally comparable data on children with disabilities in developing countries. Since 2000, more than 50 MICS have collected data on this topic.

In 2001, the Washington Group on Disability Statistics was commissioned by the United Nations and mandated to develop comparable measures for disability. The main purpose of the Washington Group is the promotion and coordination of international cooperation in the area of health statistics focusing on disability measures suitable for censuses and national surveys. The group has developed, and endorsed, a short set of questions on measuring disability and functioning in the adult population, to be used in censuses and surveys. The set is comprised of questions on six core functional domains: seeing, hearing, walking, cognition, self-care and communication. It has also developed and endorsed an extended set of questions to be used as components of population surveys, as supplements to surveys or as the core of a disability survey that expands on the short set.

UNICEF’s methodology for gathering data on children with disabilities continues to evolve and has undergone a careful process of revision. These revisions were motivated by a desire to develop tools that are in line with the WHO International Classification of Functioning, Disability and Health ─ Children and youth version (ICF-CY) and the UN Convention on the Rights of Persons with Disabilities. The goal is to assess child functioning in light of barriers and supports to daily living and social participation and to ensure that the entire age spectrum and additional relevant domains are captured.

TOOLS

UNICEF and the Washington Group have developed a survey Module on Child Functioning for use in surveys and censuses. The module reflects current thinking around disability and can produce internationally comparable data. Covering children between 2 and 17 years of age, it assesses functional difficulties across multiple domains. Two separate questionnaires are available: one for children aged 2 to 4 and another covering children aged 5 to 17.

UNICEF and the Washington Group are also working on the development of a survey Module on Inclusive Education to assess  school environment and participation. The purpose of this set of questions is to provide information that can inform policy, to provide a statistical summary of environmental influences on participation in school, and to identify key areas with bottlenecks that can be followed-up on. The set of questions has been designed as a module that can be added to another survey. The questions focus on education through a formal mechanism (as opposed to home school or tutoring), and are designed to capture the interaction between the participant and the environment by obtaining parental responses to questions across three participatory domains.

UNICEF is currently working on the development of a general manual for the production of statistics on children with disabilities that will provide guidance for countries considering collecting data on children with disabilities. The manual discusses conceptual and theoretical issues related to measuring disability. It also reviews methods that have previously been used to assess disability in children, particularly in low-resource settings. Considerations for designing, planning and implementing a child disability data collection effort will be included. The overall goal is to help countries develop their own programme for gathering sound and comparable data on child disability. A first draft has already been completed and is undergoing further validation and review.

[i] Durkin, M.S., et al., ‘Validity of the Ten Questions Screen for Childhood Disability: Results from population-based studies in Bangladesh, Jamaica and Pakistan’, Epidemiology, vol. 5, 1994, pp. 283─289.

Recent Resources
Journal Article

Field testing a draft version of the UNICEF/Washington Group module on child functioning and disability

Oct 1, 2016

Global child disability data are generally non-comparable, comprising different tools, methodologies and disability definitions. UNICEF and The Washington Group on Disability Statistics have developed a new tool on child functioning and disability to address this need. The aim of this paper is to describe the development of the new module, and to present an independent field test of the draft module in two contrasting settings.

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A Key To Inclusion: New Tool to Measure Child Functioning and Disability

Apr 19, 2016

A Key to Inclusion: A video highlighting the critical importance of collecting data on child functioning and disability, on its feasibility and on its powerful results. The video addresses a new series of questions put together by UNICEF/Washington Group on Disability Statistics that go beyond labels and diagnoses to explore children’s actual experiences and the difficulties that they encounter in performing daily activities.

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Poster

Development of the module on child functioning

Apr 1, 2016

This poster shows a timeline of the development of the UNICEF/Washington Group module on child functioning from the establishment of the technical working group on child functioning in 2009 to the online release of the module in 2016.

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Journal Article

Navigating the landscape of child disability measurement: A review of available data collection instruments

Dec 8, 2015

The purpose of this paper is to describe the varying scope and content of data collection instruments on child disability and to provide a historical snapshot of the rates of reported disability among children. A total of 716 data sources were identified, corresponding to 198 countries covering more than 95% of the world’s children. The findings reveal a lack of consistent definitions and measures of disability, which contribute to major challenges in producing reliable and comparable statistics.

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