Children with disabilities are at increased risk for discrimination and exclusion from society and are less likely to have their voices heard and their needs met. It is often difficult for children with disabilities to access public facilities, such as schools and hospitals. Consequently, they are less likely to go to school, be employed as adults and are often the poorest in their communities.
Until recently, most policymakers and national statistical offices have employed a medical model to define and measure disability. Here, disability was perceived as a result of an individual’s disease or condition and the focus was on impairments. With the adoption of the International Classification of Functioning (ICF), the focus has shifted towards a biopsychosocial model – an integration of the medical and social realms – where disability is viewed as the result of the interplay among an individual’s health conditions, the environment in which he/she lives and personal factors.
A lack of accurate disability data has long hindered the development and implementation of relevant policies and programmes aimed at promoting the equalization of opportunity for children with disabilities. This is largely due to inconsistent definitions and indicators of disability, combined with differences in methodologies used in global data collection efforts. While there are no reliable global estimates on child disability, current efforts are ongoing to measure progress and ensure that no boy or girl is left behind.
To address the need for data on children with disabilities, UNICEF and the Washington Group on Disability Statistics – a UN city group established under the United Nations Statistical Commission – have developed tools and provided capacity building opportunities to support the design and implementation of countries’ data collection efforts. The partnership has yielded a new way of gathering data that reflects current thinking around disability and can produce internationally comparable statistics. Several expert consultations involving representatives of Disabled People’s Organizations, academic institutions, international organizations and national statistical offices were held to develop the module.
The new module is comprised of a set of questions which can be included in censuses and household surveys to measure difficulties in areas of cognition, communication/comprehension, hearing, vision, learning, mobility, motor skills and emotions.
The tool covers children between the ages of 2 and 17 years of age. Mothers or primary caregivers are asked questions to explore children’s actual experiences and the challenges they face in carrying out daily activities. To better reflect current thinking, the questions are phrased to assess degrees of difficulty in functioning against a rating scale. The purpose is to identify the subpopulation of children with functional difficulties. These difficulties put children at greater risk of experiencing limited participation in an unaccommodating environment.
In the past, questions regularly used language that was considered acceptable at the time, but is no longer seen as such. Due to the shift in the understanding of disability, the Module on Child Functioning avoids stigmatizing language such as labels, and focuses more on the child’s ability to carry out an activity of daily living.
The questions below illustrate a marked shift in how questions used to be phrased in the Ten Questions Screen, and how they are now phrased in the Module on Child Functioning:
Question from the Ten Questions Screen (TQSI)
Compared with children of the same age, does (name) appear in any way mentally backward, dull, or slow? Yes/no
Question from the Module on Child Functioning
Compared with children of the same age, does (name) have difficulty learning things?
Would you say (name) has: no difficulty, some difficulty, a lot of difficulty or cannot do at all?
In the example above, the question from the TQSI asks the respondent to make a diagnostic judgement on the mental capabilities and capacity of the child using a stigmatizing language. In the question from the Module on Child Functioning, the emphasis is on the child’s difficulty in performing the activity of learning. The scaled response options allow the respondent to provide a more specific description of the child and aide in determining severity of difficulty learning.
The module has undergone extensive review by experts, and testing in several countries to determine the quality of questions being asked and ascertain cultural understanding by respondents. It is now included into the current round of the UNICEF-supported Multiple Indicator Cluster Survey programme (MICS) that will be implemented in more than 35 low-and middle-income countries over the next three years.
The module is being translated into multiple languages and, in addition to English, is available in French, Spanish, and Vietnamese. Arabic, Russian, Chinese and Portuguese will be available shortly. Supporting documentation, including a concept note, tabulation plan, templates for reporting, guidelines for interviewers and training materials are also available.
Access the Module on Child Functioning.