Opinion: Focus on disabilities like cleft to end malnutrition

Rarely is a congenital anomaly as much of a window into health care as it is with cleft. Children with clefts can experience hearing loss, social isolation, speech and language delay, and severe feeding difficulties. Yet timely treatment can prevent serious, lifelong disabilities for many. Those of us who work in cleft care see the opportunity to advance disability policy and health systems to ensure children with cleft and other disabilities are able to access and eat the nutritious food they need to grow and develop to their full potential.

This month, the global health community will observe Cleft Awareness Month, and health professionals worldwide will gather for the 14th International Cleft Congress in Edinburgh, Scotland. During these moments, we’re calling on the global health and nutrition community to take action. To build inclusive food, health, and social protection systems that leave no one behind, we must ensure that children with disabilities are represented in research, policies, and partnerships.

“Fed to Fail?” a 2021 report by UNICEF, shows that the world is failing to feed children well during the time in their lives when it matters most — before 2 years of age. Despite gains over the last two decades, malnutrition, especially in early childhood, remains in crisis. Globally, almost half of deaths among children under 5 are linked to undernutrition.

Unsurprisingly, there is a strong interrelationship between nutrition and disability, though disability is often absent from nutrition research and policy. Studies suggest that people with disabilities are up to three times more likely to be malnourished and twice as likely not to survive beyond infancy. This is likely due to a number of interrelated risk factors: besides the physical challenges caused by disabilities such as cleft, disability may also increase the risk of poverty, lower wages, and increased cost of living with a disability, all of which increase the risk of food and nutrition insecurity.

Recent research from Smile Train shows that malnutrition disproportionately affects children born with clefts in limited-resource settings.

This was true for Mirian, a baby born with a cleft in a remote village in Guatemala. By the time she was one month old, she weighed only four pounds. Like many babies with clefts, Mirian’s cleft made it physically difficult for her to breastfeed. A chance visit from a local Smile Train partner medical team meant Mirian received the care needed to survive, but many babies with clefts never get that. Too often, nutrition programs aren’t designed to address their unique needs.

In December 2021, the Nutrition Year of Action closed with the Nutrition for Growth Summit, which resulted in government and private sector donors pledging more than $27 billion toward nutrition. Forty-five countries with a high burden of malnutrition renewed policies and made commitments to invest in evidence-based nutrition interventions.

While many of these commitments notably speak to increasing rates of exclusive breastfeeding and good nutrition for mothers and babies, it remains to be seen how many, if any, of the interventions stemming from these commitments will target populations with disabilities.

We call on policymakers to take the following three actions to build inclusive food, health, and social protection systems ensuring that no one is left behind.

1.  Prioritize research, data, and understanding. The Nutrition for Growth Summit emphasized the importance of data-driven decision making, but when it comes to nutrition, there is a widespread lack of data around the challenges and needs of people with disabilities. While disabilities and clefts have a huge impact on nutrition at the individual level, barriers to food access for people with disabilities are also intertwined with societal factors, such as transportation, information, housing, employment, and even participation in research, government, and policymaking — and addressing this inequity at the individual and systems level will require data and understanding on the challenges and potential opportunities to build more inclusive programs.

2. Ensure people with disabilities are represented in policy discussions. Research and data are only part of the story, particularly when it comes to the diverse experiences, perspectives, and needs within the disability community. A baby born with a cleft and a baby born with cerebral palsy may both be at increased risk of malnutrition, but the causes and the solutions would be very different. Too often, people with disabilities aren’t included in the discussion around the policies that will ultimately shape their lives. As financial commitments from the Nutrition for Growth Summit move forward, it is essential that governments and stakeholders create opportunities for people with disabilities and organizations run by or working with people with disabilities to share their perspectives.  

3. Leverage partnerships to maximize efficiency and effectiveness. Building efficient, effective food health and social protection systems that simultaneously address a wide array of circumstances, needs, and challenges is a tall order — but so is eliminating malnutrition in all its forms, everywhere, leaving no one behind. From research to representation to implementation of programs, partnerships are key to disability inclusion within the global nutrition agenda. By leveraging existing expertise and resources, replicating successful best practices, and scaling existing programs, we can accelerate progress on achieving global nutrition targets.  

Every child’s story should have an ending like Mirian’s. We recognize the important progress made toward reducing malnutrition, but all people need to be included. During Cleft Awareness Month, we challenge donors and policymakers to incorporate the nutrition needs of children with disabilities into their programs — all children, including those with clefts, have the right to good nutrition.

The opinions expressed are those of the authors and do not necessarily reflect the policies or views of UNICEF or Smile Train.