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Overview
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 disabled children 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 disabled children. 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.

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.

Despite these obstacles, a major global effort is under way to make these children visible so that they can reach their full potential. National statistical offices and data collection agencies, UNICEF and the Washington Group on Disability Statistics (a United Nations-sponsored city group), are all working to improve the availability, quality and international comparability of methodologies and data on child disability. Since 2000, UNICEF-supported household surveys –Multiple Indicators Cluster Surveys (MICS) – have become the largest source of internationally comparable data on children with disabilities in developing countries. Since that time, more than 50 MICS have collected data on this topic.

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Notes on the Data

NOTES ON THE DATA

Data on child disability are available from a large array of sources, including censuses, administrative records, national disability surveys and national household surveys. However, the varying methodologies used and overall quality of data collected makes comparisons across countries problematic.

THE TEN QUESTIONS SCREEN

As a first step in addressing the need for comparable and reliable data, UNICEF has implemented, since 2000, the Ten Questions Screen (TQ)[1] 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.  

The Ten Questions Screen contains questions on congenital and developmental disabilities, including seizures, speech, cognitive, motor, vision and hearing disabilities. Questions on disability are addressed to the parent/caretaker of each child in the household between 2 and 9 years of age. The interviewee is asked to provide a personal assessment of the physical and mental development and functioning of the child. The validity of the TQ has been tested in different epidemiological surveys involving screening and clinical assessments of more than 22,000 children in Bangladesh, Jamaica and Pakistan.[2] Results of these studies caution that while the TQ is highly sensitive (in other words, children who have a serious disability are very likely to screen positive on the TQ), it also has a relatively low positive predictive value overall. Some children who screen positive on the TQ will be found not to have a disability on further evaluation. However, previous studies report that the majority of children who screen positive on the TQ but are not diagnosed with a serious disability on evaluation in fact have either a mild disability or health condition requiring treatment, such as an ear infection,which could potentially lead to a disability if left untreated. Thus, the TQ is best used not as an assessment tool, but rather as a screen to help identify children with a developmental delay or who are at increased risk of disability.[3]

UNICEF’s methodology for gathering data on children with disabilities is currently undergoing a careful process of revision through a series of ongoing and planned activities. 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.

A NEW SURVEY MODULE ON CHILD AND YOUTH FUNCTIONING AND DISABILITY

The Washington Group on Disability Statistics is a United Nations city group commissioned in 2001 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 already developed, and endorsed, a short set of questions on measuring disability and functioning in an 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.

In recognizing the need for a set of questions that would produce internationally comparable data, the Washington Group formed a subgroup in 2009 on child functioning and disability that is chaired by the National Statistical Office of Italy (ISTAT). UNICEF joined the subgroup in 2011. 

The first main activity of the subgroup was the development of a short set of questions to reflect current thinking on child functioning and disability for inclusion in censuses and surveys. The new module uses the ICF-CY as the conceptual framework and relies on a functional approach to measuring disability.

The new Washington Group/UNICEF module covers children between 2 and 17 years of age and assesses speech and language, hearing, vision, learning (cognition and intellectual development), mobility and motor skills, emotions and behaviours. To better reflect the degree of disability, each area is assessed against a rating scale. The purpose is to identify a subpopulation of children who are at greater risk than other children of the same age or who are experiencing limited social participation. The set of questions is intended for use in national household surveys and censuses.

To date, cognitive testing of the module has been completed in Belize, India, Montenegro, Oman and the United States of America. Field-testing is ongoing and has already taken place in two countries.

To accompany the new module, UNICEF and the Washington Group are also working to develop and draft all the necessary background documentation, including tabulation plans, templates for reporting, instructions for interviewers and training materials. The goal is to have the final version of the module and the implementation manual ready for actual data collection by the end of 2014.

A NEW SURVEY MODULE ON SCHOOL ENVIRONMENT AND PARTICIPATION

The Washington Group and UNICEF are also working on the development of a survey module to assess the school environment and participation. The goal is to measure the barriers and facilitators to education experienced by children with disabilities. The module will complement the new questionnaire mentioned above on functional limitations. Together, they will provide a comprehensive measurement of disability – assessing functional limitations as well as a child’s interaction with the environment.

UNICEF hosted an initial consultation in June 2013 that brought together some 30 participants, including representatives from the Washington Group as well as experts on education statistics and inclusive education. The consultation began the discussion of a possible framework for the development of questions for measuring facilitators and barriers to school participation for children with disabilities. Work on the development of the survey module is still in the early planning stages.

A MANUAL FOR DATA COLLECTION ON DISABILITY IN CHILDREN

UNICEF is currently working on the development of a general manual 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, particular 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. The manual is expected to be ready by the end of 2014.

TOOLKIT FOR THE DEVELOPMENTAL ASSESSMENT OF ACTIVITY LIMITATIONS AND PARTICIPATION RESTRICTIONS IN CHILDREN

UNICEF is also working with a selected group of international experts to create a toolkit and methodological guidelines for the assessment of activity limitations and participation restrictions in children. The package will consist of protocols, instructions, tools and training materials for in-depth assessment of disability in children based on existing best approaches in resource-poor settings. The guidelines utilize the ICF-CY as the conceptual framework for an approach to disability, focusing on activity limitations and barriers and support to participation. The package includes survey instruments and interview guides, methodological guidelines, training programme/materials, staff recruitment guidance and information about overall logistics. The interview guide and training programme will cover the entire process, from the minimum qualifications for the interviewers to the steps to undertake before, during and after the assessment to ensure data quality, adherence to ethical codes and appropriate follow-up, if needed. The package will also provide a framework for analysis of the findings, including indicators for reporting and main tables, and a strategy for validation and field-testing. Recognizing that high-level specialists may be in short supply in some areas, the toolkit is designed to be administered by trained mid-level professionals, such as teachers and community workers, thereby strengthening local capacity for the identification and assessment of children with disabilities. The final document is expected to be ready for distribution in late 2014.



[1] 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.

[2] Durkin, M.S., et al., 1994.

[3] UNICEF, Monitoring Child Disability in Developing Countries: Results from the Multiple Indicator Cluster Surveys, UNICEF, New York, 2008.