The Need
250 million children are excluded from the systems meant to keep them nourished. Children with disabilities and children without family care face some of the highest rates of malnutrition in the world. They are not impossible to reach. They have simply never been included.
A crisis the data has rarely captured
At least 250 million children with disabilities and children without family care live with a heightened risk of malnutrition. It is not because their needs are too complex to address. It is because no one has built the systems to find them, include them, or track what happens to them.
more likely to be malnourished than their peers
more likely to die from malnutrition
malnutrition rate in some residential care settings
These figures are not the result of individual failure or caregiver neglect. They are the result of health systems, national nutrition policies, and global funding decisions that were not designed to include these children.
Two excluded populations, one shared gap
SPOON focuses on two overlapping groups of children who face heightened nutrition risk and are excluded from mainstream systems.
Children with disabilities
Many children with disabilities face specific feeding challenges related to their disability: difficulty swallowing, chewing, or maintaining safe positioning during meals. They may have difficulty taking in enough calories. These are not unsolvable problems. But health workers are rarely trained to address them, and mainstream nutrition programs do not screen for them. When no one in the system knows how to help, families are left to figure it out alone. And when children with disabilities are denied community-based support, families sometimes feel they have no choice but to place them in institutional care, where their nutrition often deteriorates further.
Children without family care
Children living in residential institutions or other non-family settings are among the most nutritionally vulnerable in the world. Without the consistent, individualized attention that feeding support requires, malnutrition rates in these settings can reach as high as 91%. In addition to limited diets, practices may include force feeding, altering of bottle nipples to increase flow, large spoons, and self-feeding too early. These practices increase the chances of choking, illness, feeding difficulties, and malnutrition.
These two groups of children are interrelated. Exclusion from community-based nutrition support pushes children with disabilities toward institutional care. Institutional care creates the conditions for malnutrition to worsen. SPOON addresses both because the system gap that harms one group harms the other.
A cycle that is entirely preventable
This is not a story about isolated failures. It is a pattern that repeats because the system has not been built to interrupt it.
- Children with disabilities are not counted in national health data, so policymakers do not know how many there are, where they live, or what they need.
- Health workers receive no training to identify disability-related feeding challenges. Families who seek help are often turned away or blamed.
- Feeding challenges go undetected and unaddressed. Wasting and stunting worsen. Children who might have thrived at home become more vulnerable.
- Without community support, some families are pushed toward institutional care as the only available option, where nutrition outcomes often worsen.
- Because these children remain uncounted, nothing changes. The system repeats its failure.
Masiko searched for help for her daughter Amari for years.
Amari has cerebral palsy. Every meal was painful and dangerous. Masiko brought her to a village health worker, an immunization clinic, a child care institution, a district hospital. At each one, no one had the training to help. She was told to feed her more. She was told she was doing it wrong.
Then Masiko borrowed bus fare to reach a regional hospital whose nutrition team had been trained and equipped by SPOON. The health workers there identified Amari's specific feeding challenges, built a care plan, and taught Masiko how to safely feed her daughter.
Amari started gaining weight. Mealtimes became joyful.
This should not depend on which hospital a mother can afford to reach. SPOON is making sure it doesn't.
Three systems that should reach these children, and don’t
The gap is structural:
- Global nutrition programs are not designed to address disability-related nutrition and feeding challenges.
- Disability services, where they exist at all, rarely prioritize nutrition.
- Health systems may not integrate feeding or disability support at all.
The result is that these children exist in the space between three systems, reached by none of them.
The data on these children is scarce. When policymakers and funders cannot count a population, they cannot plan for them. When they cannot plan for them, they do not fund programs to reach them. When programs do not reach them, the data stays scarce. SPOON is breaking this loop.
This is why mainstream nutrition investment, however well-intentioned, has not solved this problem. It was never designed to. The children who are most at risk are those the design left out.
The solution exists. The systems don't yet.
SPOON has spent 20 years building the model, the tools, and the partnerships to change that. See how SPOON works.