Care trajectories of Children with Disabilities and Developmental Challenges in Villa 21-24, Buenos Aires

Abstract

The purpose of this study is analyzes the care trajectories and organizational strategies of families with children up to 12 years old with intellectual disabilities and developmental challenges in Villa 21-24 (Buenos Aires, Argentina). We argue that these trajectories are shaped by the systemic rights violations inherent to this urban context. Adopting a social model of disability, we define it as a phenomenon arising from the interaction between individuals and their environment. We conducted a qualitative, observational, and descriptive-exploratory cross-sectional study using semi-structured interviews with caregivers between 2023 and 2025. Data were analyzed across three exes: individual and household profiles, care organization, and care trajectories. Findings reveal a significant caregiver burden—predominantly among women—barriers to accessing public health and social security resources, the reliance on informal networks, and a disconnect between institutional discourse and the practical realities and perceptions of families.