Bridging the gaps in health and social equity for disabled children in low‐ and middle‐income countries

Current global disability estimates suggest that 240 million children (including adolescents) have moderate-to-severe functional impairments (https://data.unicef.org/resources/children-with-disabilities-report-2021/), and that 290 million children have mild-to-severe childhood-onset disabilities.1 Regardless of the approach to prevalence estimation, the majority of the world's disabled children reside in South Asia and Africa and face several barriers to optimal early childhood development (ECD), health, and well-being, including stigmatization, discrimination, and negative stereotyping. Compared to non-disabled children, disabled children are generally unhappy, significantly less likely to have foundational reading and numeracy skills and expectations of a better life, and more likely to have never attended school, or drop out of primary school. Therefore, the birth of a disabled child commonly invokes profound parental grief and a sense of helplessness and hopelessness among families. This frustration underpins adverse consequences such as infanticide and institutionalization in resource-limited communities. Cerebral palsy (CP) is a common childhood-onset disability globally. The prevalence in low- and middle-income countries (LMICs) is typically reported as 3 to 4 per 1000 live births, double the estimate for high-income countries.2 However, the population of children and adolescents with CP is rarely reported for global health discourse. A recent scoping review of CP in African children highlighted diverse challenges faced by these children and their families such as the lack of access to timely diagnosis and support services, and high rates of premature mortality.3 The quasi-randomized trial by Asige et al. reported that skill training of 48 children aged 2 to 23 years with CP delivered by trained community workers improved their motor functioning, activity, and participation compared to 46 children with CP without similar care.4 This well-designed study from rural Uganda notably adds to the growing evidence on community-based interventions for addressing the needs of children with childhood-onset disabilities in LMICs. However, its clinical utility is likely to be constrained by the small number of participants and variable outcomes across subgroups.4 Like similar experimental studies in LMICs, the scalability and the financial implications of the intervention for public or global health application require broader and more robust evidence from implementation research. Where do we go from here, considering the stark realities faced by disabled children and their families? Government-backed ECD initiatives are needed. However, national initiatives for child survival, health, and development in LMICs are often tied to global programmes promoted by UN agencies and their funding partners. The ECD provision for inclusive and quality education under the Sustainable Development Goals, 2015 to 2030 offers a unique opportunity to use available evidence to tackle the health, social, educational, and economic inequalities experienced by disabled children. Without a holistic globally coordinated ECD strategy, the benefits of potential low-cost interventions as reported by Asige et al. are unlikely to be sustained typically beyond the research period.5 Substantial global and national investments are therefore required for local capacity-building to deliver requisite services long-term. Indicators for monitoring programme impact, including number of children served, the quality of service provided, and parental engagement are also needed. But we must be mindful that not everything that matters can be measured, and not everything that can be measured matters. Remarkable stories of accomplishments in different walks of life abound worldwide among individuals with childhood-onset disabilities who received timely and appropriate family-centred support. Several unfulfilled global recommendations and pledges for disabled children provide a fulcrum for concerted action by all stakeholders – academics, caregivers, and disability community and global institutional actors. Without collaborative initiatives based on population-level evidence from countries with well-established disability-focussed ECD programmes, the pervasive health, educational, and social inequalities faced by disabled children regrettably will persist unabated. Let us resolve, within our spheres of influence, to bridge these gaps as a moral imperative. Not required.