Estimating the magnitude and scope of disability-related direct costs: a systematised review

Background: Globally, people with disabilities face a heightened risk of poverty, the extent of which is often underestimated due to a failure to account for disability-related direct costs or “extra costs”. People with disabilities spend significant proportions of their income on additional goods and services (e.g. personal assistance, assistive devices, extra healthcare, transportation): paying out-of-pocket for these items can substantially lower their standard of living, while inability to meet these costs can affect their well-being and social participation. Estimating the magnitude and sources of disability-related direct costs is key for policy and planning, as it can affect determinations of poverty and also identify where additional investment may be needed to reduce the individual burden of these costs (e.g., through social protection, designing more inclusive services). Objective: To synthesize evidence from recent studies on the magnitude and sources of extra costs amongst people with disabilities, comparing how estimates differ by methodological approaches, settings and individual characteristics. Methods: We conducted a systematised review of studies published between 2015 and January 2023. Searches covered 10 databases and the grey literature. Results: We retrieved 75 studies covering 67 countries, which reported substantial costs that often significantly increased the risk of poverty amongst people with disabilities. There was high heterogeneity across studies, depending on methodological approach and individual and contextual factors. Conclusions: These findings indicate a pressing need to offset individual spending on costs, such as through more extensive social protection and through designing more inclusive services (e.g., health, education, transport). There is also a need for more consensus on best practices for measuring extra costs across methodological approaches.