It’s Time to Improve Care for Children with Advanced Developmental Needs

Authors: Shubha Nagesh, Nancy Rumaldo, Felicia Mburu, Paige Knowlson

December 3 was International Day of Persons with Disabilities.  While this day marked significant progress in the awareness of the rights and needs of persons with disabilities, including children, there is still much to be done. In particular, children with significant developmental delays face enormous burdens worldwide, especially in under-resourced areas such as the Global South, where their needs are not prioritized, and often not even recognized.

As experts working with children with disabilities across the globe, we believe that it is imperative to improve access to interventions for children with developmental disabilities. We must advocate for policies that promote a more inclusive society that recognizes and nurtures the potential of all children, regardless of the presence of disabilities.

Globally, over 317 million children live with a developmental disability.  These children often lack access to even basic health and educational services exposing them to increased risks of chronic disease and growth delays. Research indicates that early and appropriate interventions can significantly improve outcomes for these children. However, educators and healthcare professionals, including pediatricians and general practitioners, often lack training in developmental screening and may not recognize the signs of developmental delay or advanced developmental needs. UNICEF has developed a screening tool to track developmental targets, however, it relies heavily on parental use to identify children at risk and therefore may be underutilized. This gap can result in delayed referrals to specialists, such as developmental pediatricians and child psychologists, which are in short supply, especially in remote areas in the Global South.

Even when developmental delays are identified, access to early intervention services is often limited. Many families face barriers such as transportation challenges, financial constraints, and a lack of community resources.  As a result, children with developmental disabilities in the Global South may not receive the necessary therapeutic interventions that allow them the potential to thrive, such as speech therapy, occupational therapy, and psychological support. In rural areas, the situation is even more dire. Families must travel long distances to access specialized services, which can be financially and logistically prohibitive. Consequently, many children miss out on critical developmental services and milestones, further exacerbating their disabilities.

While the situation is alarming, some steps can be taken to improve care for children with developmental disabilities in the Global South. For one, there needs to be a targeted and consistent approach to screening for disabilities. Governments must invest in providing adequate resources to support families in obtaining screening services to identify and refer children early so that they can receive appropriate care and intervention.

There are some successful models from which we can learn. In Peru, where approximately 15.4% (or roughly 2 in 10 caregivers) report caring for a child under 6 with some form of disability, Partners in Health´s CASITA program supports caregivers of children who are at risk of developmental delays.  Children with advanced developmental needs identified from the program are referred to the healthcare system for further assessment. The CASITA program trains community health workers (CHWs) to run early intervention programs in peri-urban communities where they can continue providing care in a more individualized setting, targeting each child’s specific goals and needs.  Because CHWs are already in the community, they have relationships and trust with the families and know the children’s needs, strengths and learning styles. 

For programs like CASITA to succeed, adequate funding must be provided.  Many governments in the Global South do not have earmarked funds for children with disabilities.  While Peru has a universal health insurance program, it excludes disability services focusing on specialized interventions such as speech therapy, occupational therapy, and psychological support. There needs to be greater governmental support of such programs, particularly in peri-urban and rural areas.

Governments must also devote resources to establish interdisciplinary teams of specialists, including child development pediatricians, psychologists, speech therapists, occupational therapists and teachers, to conduct comprehensive assessments of children’s needs. This approach can ensure that interventions are tailored and holistic and integrate health care with social services.  Some Global South countries have taken steps to adopt this model. In Chile, a program called Chile Crece Contigo funded by the government supports care coordination across the health and social sectors. 

Governments must also create local support networks to develop and train community health workers,  teachers and special education professionals. This training should cover inclusive teaching practices, specific disabilities, and advanced developmental needs, enabling educators to effectively support all students.  This training can be provided by occupational, speech, physical and psychosocial therapists, allowing the CHWs to act as the bridge between these specialty providers and the community.

There is also a critical need for better direct financial support for families who often face significant expenses to care for children with disabilities. Although some governments in the Global South, such as Vietnam and South Africa, provide financial support for these families, significantly more funding is needed. With the funding, governments can also encourage family involvement in intervention planning and decision-making. Providing families with education and resources will enable them to better support their children’s development and navigate available services.

Given that many regions in the Global South are remote or rural and often face a severe shortage of specialists in disability services, there is a pressing need for increased investment in telehealth services. Telehealth can bridge the gap in service delivery, allowing children to receive necessary interventions without the added burden of travel.

Finally, the purpose of initiatives such as International Day of Persons with Disabilities is to increase global awareness of the needs of this community. As part of these global awareness initiatives, there should be country-based targeted public campaigns to educate local communities about disabilities and the importance of early intervention. These campaigns can help reduce stigma and promote a culture of understanding and support. Advocacy efforts that promote stronger national policies are urgently needed to develop the rights and needs of children with disabilities. This should include ensuring alignment with international agreements, such as the Convention on the Rights of Persons with Disabilities, to create a more inclusive legal framework.

By adopting these recommendations, countries in the global South can make meaningful progress toward bridging the gaps in interventions for children with advanced developmental needs. It’s time that we build a society in which children with developmental disabilities have the opportunity to thrive.

Author Bios: Paige Knowlson, Felicia Mburu, Shubha Nagesh and Nancy Rumaldo are Senior Atlantic Fellows for Health Equity. Paige is an occupational therapist based in Colorado. Felicia is the deputy director of research and compliance for the Kenya National Commission on Human Rights. Shubha is an advocacy advisor working with Women in Global Health. Nancy is an advocacy & community relations project manager at Socios En Salud (PIH Perú). The opinions expressed here are their own.