Importance of improving visibility for childhood disability in global health
By Shubha Nagesh
Currently, 15% of the global population lives with some form of a disability. Around 80% of the disabled are poor and live in low and middle income countries (LMICs). South Asia has the largest proportion of Persons with Disabilities (PwDs). Around 2-4 % of the population in South Asia experience significant disabilities and are dependent on their caregivers. Numerous structural and social barriers impede PwDs access to services resulting in low outcomes in health, employment, education, recreation and so on.
The new Unicef report on children with disabilities highlights key facts: 240 million children, representing 6-15% of all children worldwide, have disabilities. The largest number of children are again from South Asia, possibly from India. On average children with disabilities have poorer health outcomes (e.g., malnutrition and respiratory infections) than children without disabilities. Compared with children without disabilities, children with disabilities are: 25% are less likely to attend Early Childhood Education, 49% are more likely to have never attended school, 41% are more likely to feel discriminated against, and this list is long. Disabled children experience inequalities, experience violations of dignity, are denied autonomy and are completely ignored. While we see tremendous levels of inequity due to the disability itself, it is compounded by gender, poverty, remote location and so much more.
There is a very strong economic argument. There is evidence to show that PwDs are worth investing in for governments. There are opportunity costs for excluding people with disabilities, lost wages/taxes of PwD who are denied work, lost wages/taxes of family members and caregivers who are unable to work because of their role in care.
Globally, the likelihood of a child having a disability is at least ten times higher than that of dying before the fifth birthday. Children with developmental disabilities have the greatest risk of poor development in the early crucial years preparatory to inclusive primary school enrolment. Investment in child disability declined by 11·4% between 2007 and 2016.
Challenges in addressing childhood disability
As a passionate advocate for Childhood Disability in global health for a decade, my personal experiences have shown me the difficulty of getting childhood disability as a topic of discussion on the global health agenda.
I have been lonely as a global health voice in the movement to correct the understanding around disability, neurodiversity, and the power of inclusion in global health, particularly as a researcher in an LMIC, at the global stage, and also at the national level within India. For many years, mostly no one in my professional circles knew about Global Health and understood much about childhood disability. As an advocate to further my cause I had to work hard to fit in with disability networks as the lone global health professional, and into global health networks as the only person who worked on disability, that too in childhood disability.
There is a wide gap between what is known about the importance of early childhood development in high-income countries and LMICs. In LMICs, the majority of developmental pediatricians are based in urban areas, and most have little expertise to diagnose children with disabilities, particularly early, when intervention is known to benefit the quality of life of children in a positive way.
In LMICs, community health workers and general practitioners receive little or no training around the identification and referral of children with disabilities and delay- many children often go undetected. Those who are not counted as disabled do not exist. The burden of poor development is higher than estimated, taking into account additional risk factors. Fragmentation of service provision remains a significant challenge, with a large bulk of services being provided by community-based organizations, civil society organizations, and individual therapists in private practice.
Pathways to improve our efforts
First and foremost, we need leadership from the disabled community. When we plan for the most vulnerable, the world works better for everyone. We live in a disability leadership vacuum. We need diverse leaders, men, and women who represent the composition of their communities. When PwDs representing a diverse range of disabled communities lead in sufficient numbers, better health will follow. We need disabled persons at all levels, including at the top levels, to change the dynamic, reshape the conversation, to make sure every voice is heard, not overlooked.
The second point is about Governance. No amount of goodwill can change the narrative but good governance will. Developing laws and rules on best practices to promote inclusion and to overcome gaps are critical. Providing incentives and support with effective monitoring is essential. Additionally, penalties should also be there to ensure that governance is focused on supporting and including PwDs in their approaches.
The third point is about Awareness. While some people understand the importance, they don't know how to implement it in practice, because no one they know personally has a disability. A lot of people don't realize that disability impacts 15% of the world's population. There needs to be greater acceptance of disability as a universal characteristic- something that will be present in all populations and will have an impact on outcomes. We need to have a better understanding of disability from a human rights perspective and not just limit it to a medical perspective.
The fourth point is about Inclusion. Melinda French Gates has spoken about Human-centered design. When you let people participate in the design process, you find that they often have ingenious ideas about what would really help them. This is precisely what our work in the disability space is all about - to include the voices of PwDs. Our work within the health workforce and leadership should consider inclusion as a foundational piece. We need to recognize that this inclusion is less so for PwDs and work actively to change that.
The fifth point I want to make about is Well-being. Marginalization of children with disabilities harms their mental health and the well-being of their families. This can be a form of moral injury to the community. The stories of stigma and marginalization are endless. Society has to do better to become a safe space for PwDs that supports families whose children have disabilities. As global health practitioners, we have a role to play in advocacy to reduce stigma.
The sixth point is about a compelling need for leadership from practitioners, governments, and international organizations to prioritize regular childhood developmental surveillance for possible delays and disabilities and to pursue early referral for intervention. Prioritizing such policy choices can not only improve the quality of life of PwDs but also at times save them from pre-mature deaths.
The seventh point is about the need for a strategy to narrow the gap between early identification and the increasing population of children with delays and disabilities. In far and remote, rural, and peri-urban settings particularly, an approach is needed that will build local capacity, community systems, and one window system for service provision for PwDs.
The eighth point is that programs that reduce under-5 mortality, especially in LMICs should be accompanied by complementary investment in addressing the needs of the beneficiaries of child survival programs with lifelong disabilities. This is a necessary policy consideration if we are serious about leaving no one behind as advocated in sustainable development goals (SDGs).
All the above factors need to be addressed within global and national-level health agendas. As governments often follow global goals, such as SDGs, putting an extra emphasis on disability in global conversations can help bring much-needed political will and financial support to address challenges related to childhood disability. Starting from where we are and what we can influence and building approaches that move away from siloed approaches are crucial to implementing the suggestions highlighted above. Our final goal should be to create an environment where disabled individuals, especially children in their formative stages can reach their own potential with appropriate care and without stigma.
About the Author:
Shubha Nagesh is a medical doctor by training and a public health researcher, who has worked with children with disabilities in Uttarakhand, the Himalayan state of India, for more than a decade. Her work involved taking intervention services for disabilities closer to the community. She is a senior Atlantic Fellow in Global Health Equity, was the South Asia correspondent at International Health policies, and served as a Mentor for the Canadian Society of International Health and Global Health Mentorships.
Shubha Nagesh tweets @snagesh2