Bringing legislation to life: Navigating intersectional barriers in implementing the Sindh Empowerment of Persons with Disabilities Act (2018) for the healthcare of children with disabilities
by Muhammad Asim, Waqas Hameed, Sara Rotenberg, Dalia Chowdhury, Abid Lashari, Munazza Gillani, Abdul Ghaffar, Hannah Kuper
The Sindh Empowerment of Persons with Disabilities Act 2018 (SEPD Act) mandates inclusive health services for persons with disabilities. This study examines the challenges faced in implementing the disability Act’s health-related provisions, with a focus on children with disabilities in Sindh, Pakistan. A qualitative exploratory study was conducted in four districts of Sindh province. A total of 40 key informant interviews were undertaken with government officials, health administrators, pediatricians, and disability activists using a purposive sampling technique. The data were analyzed through inductive and deductive thematic analysis using the Missing Billion disability-inclusive health system framework. We identified several critical systemic gaps in the implementation of the SEPD Act in Sindh province. Weak governance, including limited intersectoral coordination, frequent bureaucratic turnover, and lack of private-sector engagement impedes implementation progress. The absence of sanctioned budget for inclusive health initiatives, particularly the lack of structured health insurance programs and limited availability of assistive devices, restrict healthcare utilization for children with disabilities and forces families to incur substantial out-of-pocket expenses for rehabilitation and healthcare. Effective delivery of health services are constrained by inadequate disability-inclusive infrastructure, insufficiently trained healthcare providers, and lack of newborn screening programs for early detection and timely intervention. Furthermore, lack of systematic collection and reporting of disability-specific data within the Health Information System limits evidence-informed policy and decision-making and the development of effective referral mechanisms for diagnosis, treatment, and rehabilitation of children with disabilities. Systemic weaknesses impede the delivery of disability-inclusive healthcare in Sindh, despite the presence of supportive legal frameworks. Our findings recommend strengthening the implementation of the SEPD Act through strategic planning, coordination, and priority setting at both provincial and district levels. Furthermore, it is essential to integrate strategies for a disability-inclusive health system at all administrative levels to ensure that the needs of persons with disabilities are prioritized.
Source: journals.plos.org