Extra costs of living with a disability: A systematized review and agenda for research

Background: There has been a growing interest in disability and poverty on the international research and policy stages. Poverty assessments for persons with disabilities may be affected by the experience of extra costs associated with a disability. Objective: This article provides a systematized review of the global literature on the direct costs associated with living with a disability at the individual or household level. Methods: We searched three databases for peer-reviewed journal articles that estimated extra costs associated with disability: Econlit, SocIndex and PubMed. Results: We found 20 such studies conducted in 10 countries. These studies were predominantly from high-income countries. Although studies were heterogeneous (e.g., in terms of disability measures and cost methodologies), estimated costs were sizeable and some patterns were consistent across studies. Costs varied according to the severity of disability, life cycle and household composition. Highest costs were observed among persons with severe disabilities, and among persons with disabilities living alone or in small sized households. Conclusions: More quantitative evidence is needed using rigorous methods, for instance evidence based on longitudinal data and as part of policy evaluations. More internationally comparable data on disability is required for the quantitative evidence to develop, especially in low- and middle-income countries where studies are scarce. Qualitative and participatory research is also needed, especially to investigate unmet needs, and the consequences of extra costs