Designing, implementing and evaluating inclusive policies requires timely, high quality data on all children. If data on children with disabilities is not collected, then effective policies and programs cannot be developed, nor can best strategies be discovered and documented.
But data on disability goes beyond a child’s functional limitations. As the Convention on the Rights of Persons with Disabilities (CRPD) states, disability emerges from the interaction between the functional limitations related to people’s impairments and the environment they live in.
Data on disability must capture individual and environmental aspects
A child is not disabled merely because she doesn’t have legs, but because she lacks a wheelchair, the school is inaccessible, and people feel that children with disabilities don’t belong in school.
That is why data related to education must go beyond identifying which children have functional limitations to identifying the aspects of the environment that serve as either barriers or facilitators to education.
Recent efforts have significantly improved our ability to identify children with disabilities in surveys. In the past, countries simply asked: “do you have a disability?”. This misses many children. First, because stigma associated with disability makes people disinclined to use that word, and second, because people tend to think of disability only as a severe functional limitation. But children with mild or moderate limitations can still face significant barriers.
Another strategy used is asking about a list of conditions – blindness, paralysis, autism, etc. This also misses many children because no list of conditions is complete, and often people don’t know what their diagnosis is – especially if they aren’t well educated or don’t have access to good health care.
Finally, just knowing that a child with a particular condition, say cerebral palsy, can tell you nothing about their difficulties and capabilities. Children with cerebral palsy (and other diagnoses) can vary widely.
Two questionnaires to identify children with functional difficulties
Therefore, UNICEF and the Washington Group on Disability Statistics (WG) –a group of national statistical organizations established by the UN Statistical Commission– developed questionnaires that identify children who have functional difficulties without using the term “disability” or focusing on medical conditions. Instead, the questionnaires ask about the range of difficulties children may experience in several functional domains.
Two questionnaires – one for children age 2-4 and one for children age 5-17 –are now being used in the field. These questionnaires were developed by a group of national statistical organizations, UNICEF, and a number of experts in child development.
They were cognitively tested in the United States, Belize, Oman, Montenegro, India and Jamaica. Field testing occurred in Haiti, Italy, India, Cameroon, Samoa, Myanmar, El Salvador, Zambia, and Serbia. The questionnaires were recently included in the Vietnam Disability Survey, and will be used this fall in Thailand as well. They focus on the issues children have doing activities due to difficulties in seeing, hearing, mobility, cognition, communication, and behavior.
One example of their use is in Mexico’s National Survey of Girls, Boys, and Women conducted in 2015. In that survey – using the WG/UNICEF recommended cut-offs for disability – 2% of children aged 2-4 and 11.2% of children 5-17 were identified as having a disability. In Serbia those numbers were 1.1% and 3.6%. In Samoa, they were 1.4% and 3.2%.
A set of articles detailing the field test results in these countries and comparing the percentages of children identified using different survey instruments is currently under review at a journal, and will be published soon.
Identifying barriers and facilitators to education impacting all children
Also under development is an educational environment module that attempts to capture information on barriers and facilitators to education that impact all children, both with and without disabilities. It has been cognitively tested in the United States, and is now starting to undergo testing more broadly, first in India. It will hopefully be ready next year.
Including the child questionnaire on a household survey that also collects information on child level educational indicators (e.g. enrollment, attendance, etc.) allows us to determine if outcomes are different for children with disabilities – not just by the presence of disability but by the type of disability.
Children with vision difficulties, for example, can face different barriers than children with mobility difficulties. To uncover the reasons behind any differences, though, requires information on the environment.
Another avenue for data collection beyond surveys is administrative data. UNICEF has developed a guide for including information on children with disabilities and aspects of the environment in educational management information systems (EMIS). A workbook explaining the approach follows the same philosophy as the CPRD and the UNICEF/WG questions.
EMIS’s are typically school censuses collected from school administrators and/or teachers. While these data do not tell us information about children who are out of school (unlike surveys), they can collect more detailed and complete information on the school environment and the children’s experiences.
For more information
The questionnaires referenced above and the approach taken are explained in detail on the Washington Group website. Both the Washington Group Secretariat (email: WG_Secretariat@cdc.gov) and UNICEF’s statistics department in New York can provide technical guidance.
If you are interested in testing the questions of the educational environment module in your country, contact the WG Secretariat.