How representative are organisations of persons with disabilities? Data from nine population-based surveys in low- and middle-income countries

Points of interestOrganisations of Persons with Disabilities can serve many roles, including advocacy, policymaking and service provision. The increasing involvement of Organisations of Persons with Disabilities in direct provision of essential services, particularly in low- and middle-income countries, is often a result of poor availability and quality of inclusive public services.This study explores awareness and membership of people with disabilities across nine low- and middle-income countries using population-based surveys.About a third of people with disabilities were aware of Organisations of Persons with Disabilities across settings, ranging from 12% in Lesotho to 73% in the Maldives.Fewer than 15% of people with disabilities were members across settings, ranging from 3.5% in Zambia to 14% in Vietnam (Cam Le district).Awareness and membership were generally lower amongst older adults, women, people with difficulties communicating, remembering and with self-care, people with less education, in poverty and in rural areas.Given the increased role of Organisations of Persons with Disabilities in direct service delivery, low total membership may indicate that many people with disabilities - particularly the most marginalised or experiencing the greatest need - are not being reached.Additional efforts may also be needed to seek out the voices of groups underrepresented in Organisations of Persons with Disabilities, particularly for advocacy and policymaking. Organisations of Persons with Disabilities (OPDs) are critical to promoting and protecting the rights of people with disabilities. However, little is known about the extent to which people with disabilities are aware and members of OPDs. This study uses data from nine population-based surveys in low- and middle-income countries to explore OPD awareness and membership. Across settings, about a third of people with disabilities were aware of OPDs and fewer than 15% were members. Awareness and membership were lower amongst older adults, women, people with difficulties communicating, remembering and with self-care, people with less education, in poverty and in rural areas. Underrepresentation of certain groups may indicate a need to seek out the voices of people less likely to be associated with OPDs. Further, low total membership may be a cause for concern in settings where OPDs are relied upon to deliver essential services in the absence of state structures.