Global indicators of population health, disability and functioning have long been used to monitor the health of populations, to calculate healthy or disability-free life years, and to provide data to monitor disability policies. The European Statistical System uses the Global Activity Limitation Indicator (GALI) as a core social variable in its surveys (http://ec.europa.eu/eurostat/statistics-explained/index.php/Glossary:Disability). While useful for some purposes, indicators like the GALI are not suitable for identifying people with disabilities for the purpose of disaggregating the Sustainable Development Goal indicators (SDGs) or monitoring the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
The model of disability that informs the International Classification of Functioning, Disability and Health (ICF) is complicated (http://www.who.int/classifications/icf/en/). The model highlights the interactions between a number of individual and contextual components. Problems with the structure and function of bodily systems can lead to limitations in a person’s ability to perform basic activities. The subsequent impact of these limitations on participation is influenced by both the individual’s personal resources and the environment in which he or she lives. Each of these factors – body functions and structures, activities and participation, and environmental factors – are separate, measurable components of the ICF model.
How one defines disability depends on the reason for that identification. In another blog, we write about the difference between determining eligibility for a particular disability program and identifying disability to describe the functional status of the population (http://www.washingtongroup-disability.com/washington-group-blog/wg-ss-differ-disability-eligibility-determination/). The Washington Group (WG) questions identify those people with limitations in core functional domains that put them at risk of not being able to participate, for example to go to work or school, in an unaccommodating environment. As society becomes more inclusive, the participation gap between those with functional limitations and those without them should decrease. Such a decreasing gap would be evidence that barriers are being reduced.
Global indicators like the GALI combine aspects of functional limitations and participation in a single nonspecific measure, thus preventing us from determining whether the link between functional limitations and the ability to participate is changing. The GALI question reads:
“For at least the past 6 months, to what extent have you been limited because of a health problem in activities people usually do?” Response options include: severely limited, limited but not severely, not limited at all.
This question does not define ‘activities people usually do’ and there can be great variability in how this phrase is understood, however working is often considered to be among these activities. Think of a person who cannot walk. Say they live in an environment with strong mobility related barriers to work, for example an inaccessible public transportation system, no ramps, a lack of quality wheelchairs, or inaccessible toilets. Under these circumstances, this person would be severely limited in their ability to work. Now say that society changes, and those barriers fall by the wayside. The good news is that this person may no longer be limited in the amount or type of work they can do. However, notice that in response to the GALI question, this person would no longer be limited, and therefore no longer identified as having a disability. Nor would the individual’s transition from not working to working be captured through disaggregation.
The WG questions focus solely on difficulties in core functional domains to create a disability identifier, and by cross classifying this variable with outcome measures (like employment), we are able to see that people at risk of non-participation are now participating. We also know how many people have difficulty walking (or doing other activities). This is useful for infrastructure and program planning. With questions like the GALI, as barriers to participation are eliminated we can only see the number of people identified as having a ‘disability’ (that is, as being limited in what people usually do) decrease. We cannot know if that number decreased because the number of people with functional limitations decreased, or whether those people with functional limitations are no longer restricted in what they could do as a result of policies affecting environmental accommodations and we cannot monitor whether the gap between those with and without disability is narrowing.
Questions like the GALI will tell us how many people are ‘disabled’ using a participation definition. While this can be useful information for some purposes, it does not allow us to compare the outcomes for people with and without disability.
The purpose of disaggregating the SDGs by disability is to determine whether those people with functional limitations are being excluded. Questions like the GALI will tell us how many people are being excluded, but not how many people with disabilities are NOT being excluded. Without the latter information, we cannot chart the wellbeing of people with disabilities compared to others. The GALI cannot be used to identify who is at risk of exclusion; it only identifies those being excluded.
Another issue with questions like the GALI is the nature of the activities that people ‘usually do’. This concept must be well understood not only within a single country, but must also be internationally comparable. Are the activities that people ‘usually do’ in a remote area in a poor country the same as the activities that are done in an urban area in a rich country? The WG questions’ focus on universal, basic activities makes them more internationally comparable.
For these reasons, we strongly believe that disaggregation of the SDGs by disability status is not an appropriate use of questions like the GALI.