Perceptions of disability, environmental risk factors and available services among local leaders and parents of young children with disabilities in West Timor, Indonesia

Purpose: As an underdeveloped region of Indonesia, West Timor faces a significant challenge of childhood disability compounded by environmental risk factors such as poverty, discrimination and stigma, and limited access to basic services. However, very little is currently known about how this important social issue is viewed from the perspective of parents and local leaders, who play an influential role in local society. This research aimed to explore the views of these groups, towards childhood disability, within an environmental risk context. Method: Data were collected via semi-structured interviews and photovoice with 23 parents and 15 local leaders such as a midwife, priest, headmaster and staff from international and local non-government organisations. Results: The results of the study suggest that local culture, including religion has a strong influence on the perceptions of disability and environmental risk factors, while available services are seen by parents as being inaccessible. Conclusions: Implications of the results are presented together with multi-sectoral recommendations for best supporting parents raising children with disabilities in rural areas in low-income jurisdictions such as West Timor.Implications for RehabilitationGrass-root healthcare providers, such as community health centres in Indonesia should work with community leaders to improve health literacy and awareness on disabilityInitiatives like inclusive village might eliminate barriers to services such as stigma and distance to health centresDecision-makers should aim to empower religious and cultural figures to provide social support for parents of children with disabilities