Worldwide, children are often not meeting their developmental potential owing to malnutrition, infection, lack of stimulation, and toxic stress. Children with disabilities are more likely to experience poverty, neglect, and abuse, and are less likely to have adequate access to education and medical care. Early childhood developmental stimulation can improve language, learning, and future participation in communities. Therapeutic supports and endeavors to reduce stigma for people of all abilities strengthen communities and allow for human thriving.
Key points
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Great disparities exist between children with and without disabilities with regard to education, health resources, participation in community life, and sometimes even access to basic necessities such as food and water.
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Children who receive early screening and diagnosis of neurodevelopmental disabilities have greater opportunities for treatment, therapies and learning opportunities.
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Early developmental screening of children is critical to identify those who will benefit from intervention.
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We sincerely believe there is reason for optimism. Around the world, children of all ability levels are increasingly included in health, education and social systems.
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Care for children with unique health care needs is improving and interdisciplinary teams are working together to care for all children.
Global burden
Early childhood is the most effective time to prepare children to reach their full potential. The returns on investment in early child development cannot be matched across populations.” Studies estimate that more than 250 million children do not reach their developmental potential owing to nutrition, infection, lack of developmental stimulation, and early life adverse events. Worldwide, disability is more likely to be acquired than congenital, and much owing to the influences of poverty. About 10% to 25% of the world’s population lives with a disability, making this the largest minority group in the world. People with disabilities are most likely to reside in the lowest resources settings where risk factors for stress, inequity, and lack of medical care or education may be very high. Poverty often contributes to disabling conditions, and disabling conditions may contribute to people living in poverty. The World Bank estimates that people with disabilities make up 1 in 5 of the poorest people in the world—those living on less than a dollar per day, who lack basic provisions such as clean water, clothing, and shelter.
A limited number of children with disabilities are able to attend school around the world. Even fewer have access to high-quality early childhood care and intervention. Research is clear that early interventions provided before the school years can result in remarkable outcomes in cognitive, social and behavioral, and academic domains before children enter school. Universal education, particularly early childhood education, has not yet been adopted and limited resources often dictate that only children who are healthy, mobile, and ready to learn are able to attend school. Great disparities exist between children with and without disabilities with regard to the type of education, resources provided, participation in community life, and sometimes even access to basic necessities such as food and water. In addition, access to medical care may also be limited for people with disabilities. Owing to stigma, cost, physical barriers, and lack of education for medical providers, the children most in need of health care may be the ones least able to access it. Unfortunately, children and adults with disabilities are much more likely to be victims of violence, abuse, and neglect than those without disabilities.
Lack of access to education for school-age children with disabilities not only affects their overall development and well-being, but it often prevents them from entering the workforce and maintaining stable employment. Without adequate employment, people with disabilities are relegated to a poor quality of life and continued cycle of poverty. Around the world, children with disabling conditions may be hidden from daily society owing to stigma, discrimination, and lack of education about causes and treatments of disabilities.
Unless disabled people are brought into the development mainstream, it will be impossible to cut poverty in half by 2015 or to give every girl and boy the chance to achieve a primary education by the same date – goals agreed to by more than 180 world leaders at the UN Millennium Summit in September 2000.
Global burden
Early childhood is the most effective time to prepare children to reach their full potential. The returns on investment in early child development cannot be matched across populations.” Studies estimate that more than 250 million children do not reach their developmental potential owing to nutrition, infection, lack of developmental stimulation, and early life adverse events. Worldwide, disability is more likely to be acquired than congenital, and much owing to the influences of poverty. About 10% to 25% of the world’s population lives with a disability, making this the largest minority group in the world. People with disabilities are most likely to reside in the lowest resources settings where risk factors for stress, inequity, and lack of medical care or education may be very high. Poverty often contributes to disabling conditions, and disabling conditions may contribute to people living in poverty. The World Bank estimates that people with disabilities make up 1 in 5 of the poorest people in the world—those living on less than a dollar per day, who lack basic provisions such as clean water, clothing, and shelter.
A limited number of children with disabilities are able to attend school around the world. Even fewer have access to high-quality early childhood care and intervention. Research is clear that early interventions provided before the school years can result in remarkable outcomes in cognitive, social and behavioral, and academic domains before children enter school. Universal education, particularly early childhood education, has not yet been adopted and limited resources often dictate that only children who are healthy, mobile, and ready to learn are able to attend school. Great disparities exist between children with and without disabilities with regard to the type of education, resources provided, participation in community life, and sometimes even access to basic necessities such as food and water. In addition, access to medical care may also be limited for people with disabilities. Owing to stigma, cost, physical barriers, and lack of education for medical providers, the children most in need of health care may be the ones least able to access it. Unfortunately, children and adults with disabilities are much more likely to be victims of violence, abuse, and neglect than those without disabilities.
Lack of access to education for school-age children with disabilities not only affects their overall development and well-being, but it often prevents them from entering the workforce and maintaining stable employment. Without adequate employment, people with disabilities are relegated to a poor quality of life and continued cycle of poverty. Around the world, children with disabling conditions may be hidden from daily society owing to stigma, discrimination, and lack of education about causes and treatments of disabilities.
Unless disabled people are brought into the development mainstream, it will be impossible to cut poverty in half by 2015 or to give every girl and boy the chance to achieve a primary education by the same date – goals agreed to by more than 180 world leaders at the UN Millennium Summit in September 2000.
Definitions
When discussing childhood disability, it can be helpful to define a few terms. Disability may be used as an overarching term to describe motor, sensory, cognitive, or emotional differences that present challenges during activities of daily living. Disabilities are often thought of as conditions that limit movement, senses, or activities. However, disability is not only a physical or biological construct; it is the interaction between medical conditions, development, and the environment. Some children are born with an impairment or medical diagnosis affecting health and function, whereas others acquire disability as a result of injuries, poor nutrition, adverse experiences, or illness. Some children have a single impairment and others may have multiple impairments. One helpful framework for discussion of disability is the International Classification of Functioning, Disability and Health (ICF), created by the World Health Organization.
The ICF is an overarching framework developed by the World Health Organization to describe health states ( Fig. 1 ). The World Health Organization uses the ICF to measure health and disability at both individual and population levels, as well as to measure research outcomes. In a pediatric context, the ICF is useful in describing patient function at a body structure, personal activity, and community participation level. It describes capacity—or what a person with a health condition can do in a standard environment, as well as performance—what a person actually does in their usual environment. Using the domains from the ICF can be useful in helping a child achieve the highest potential in body function, daily activity, and community participation. Disability is described using the ICF as (1) impairments in body function, (2) limits in activities, and (3) restrictions to participation, all taking into account environmental factors that interact in these domains.
When referencing childhood disability, it is important to remember that children with disabilities are first and foremost children. They need to be thought of in this context first; all children have the need for appropriate development, education, and emotional support so that they can mature and develop. The point of discussing disability is not to limit expectations, label children, or place them into silos of capabilities, but instead to describe conditions so that the best supports can be put in place to ensure each child is living to his or her fullest. The ICF seeks to highlight that all people have various functions and abilities based on changing states of health, wellness, or disability, within an environmental context, and this is part of the typical human experience as we move from childhood into maturity.
While the challenges ahead are steep, the imperative for universal early childhood development is clear: every child has the right to develop to her or his fullest potential, and to contribute fully to society. Our responsibility to pursue this goal is just as clear.
Common etiologies
The foundations of human brain development begin at conception, and neurodevelopmental disabilities may present anywhere from conception to childhood. Several etiologies of childhood disability are most prevalent around the world, and some are found with higher frequencies in low-resource settings. It may be helpful to discuss common etiologies in terms of antenatal, perinatal, and postnatal.
Prenatal Influences
Maternal health affects fetal development and mothers who are malnourished, who suffer from high rates of infections, who undergo severe stress, or who are exposed to high levels of toxins and pollutants are at increased risk for having an infant with poor health or a disability. Mothers living in poverty are at increased risk for all of these concerns, and this may transfer to the next generation through adverse consequences to a fetus of a mother in poor health. Genetic influences of child development may occur via spontaneous difference, heritability, consanguinity, or epigenetic effects of healthy and poverty. Genetic influences act within an environmental context. Thus, genetic causes of neurodevelopmental disabilities may present along a broad spectrum, given environment–gene interactions and the influences of the social environment.
Birth/Perinatal
Worldwide, unattended birth rates are declining, but such births still happen in high numbers. Several factors predispose mother–child dyads to risk for birth injury or complications. Very young or older maternal age influences birth patterns. Maternal malnutrition, illness, poor health, and emotional trauma are more likely associated with birth complications. When mothers deliver their babies without the presence of a skilled birth attendant or without access to emergency cesarean section or respiratory resuscitation for newborns, infants have higher odds of birth injury, asphyxia, or trauma. Additionally, the prevalence of prematurity is on the rise. More infants who are born prematurely are surviving worldwide, thus increasing the incidence of children with cerebral palsy, vision impairment, hearing impairment, and other developmental delays. In addition, inattention and learning challenges resulting from early birth are common, and are often more difficult to diagnose and treat than more obvious medical or physical challenges.
Infection
Several infections around the world are associated with risk for longer term neurodevelopmental disability. Infections may be acquired prenatally, perinatally, and postnatally. Overwhelming systemic infections that cause fatigue, anemia, sepsis, or lethargy may inhibit a child from participating in developmentally stimulating activities; children who are too tired to interact in family relationships are at risk for delayed developmental progress. Children with chronic infections may have some cognitive concerns, and these may be signs that the nervous system is not developing to the full extent. The full neurodevelopmental consequences of chronic inflammatory states owing to pathogen carriage are still being studied. Infections that specifically target the nervous system, and the developing nervous system in particular, are associated with a high risk of neurodevelopmental disability. Early childhood infections with cerebral malaria, neurocystercicosis, human immunodeficiency virus, and related infections of the neural axis such as cryptococcal meningitis, and TORCH infections (toxoplasmosis, rubella, cytomegalovirus, herpes simplex virus) all may have serious consequences for the developing nervous system and lead to cognitive, language, or motor disabilities.
Helminths present a unique risk to the growth and development of children worldwide through loss of nutrients, inflammation, and disruption of the intestinal barrier. These infections are among some of the most widespread chronic infections in humans with billions of infections worldwide, and school-aged children are the most likely to be infected. Accurately quantifying the burden of disease from intestinal helminths is an extraordinary challenge, owing to variability in clinical symptoms, difficulty in diagnosis and lack of epidemiologic and surveillance data. Studies in the 1980s and 1990s found that worm infection had adverse implications for cognitive development in children.
Childhood vaccines are one of the great triumphs of modern medicine. Indeed, parents whose children are vaccinated no longer have to worry about their child’s death or disability from whooping cough, polio, diphtheria, hepatitis, or a host of other infections.
Malnutrition
Malnutrition is a serious contributor to early childhood illness, as well as mortality, and several developmental disabilities are affected by malnutrition. Children who do not have adequate nutrition are at higher risk for infections, and children with infections are at higher risk for malnutrition ( Fig. 2 ).
Additionally, iron deficiency anemia can cause fatigue, learning challenges, and difficulty remembering things in school. Vitamin A deficiency is a worldwide leading cause of night blindness. Iodine deficiency, while becoming rarer, remains the leading cause of preventable intellectual disability. Worldwide, insufficient macronutrients and micronutrients contribute to decreased growing and brain development potential.
Developmental Stimulation
Recent evidence is accumulating that children who grow up without responsive, caring interactions are more likely to have emotional, cognitive, and learning challenges in the future. To promote language, learning, and insight, children must be spoken to, and receive interactions that are responsive to their leading. In settings of poverty and limited resources, children who do not receive opportunities to promote play, creative learning, and language are more likely to face challenges in school and work in the future. Although both genetic and environmental factors influence child development, environmental factors seem to have their greatest influence in the early years, and early life neglect, toxic stress, adversity, or lack of reciprocal attachment can set the stage for future learning, behavior, and emotional concerns.
Trauma
Unfortunately, all around the world, young children are exposed to trauma, whether broad conflicts and wars, local fighting or displacement, or domestic violence. It is estimated that 1 billion children worldwide have been exposed to violence. Exposure to trauma places children at risk for mental health concerns, socioemotional behavioral concerns, and lack of developmental opportunities. Although children with disabilities are more likely to suffer violence, children who suffer violence are also likely to experience disability.
Screening and early diagnosis
Children who receive early screening and diagnosis of neurodevelopmental disabilities have greater opportunities for treatment, therapies, and learning opportunities. Early developmental screening of children is critical to identify those who will benefit from intervention.
Surveillance involves examining population trends in disease, whereas screening involves administering specific assessments to detect deficits in individual children at a period when intervention would improve developmental opportunities. Screening is not intended for diagnosis, but rather the quick identification of children who require further evaluation. Children identified via screening as positive for a particular disorder can be referred for further evaluation which may involve more comprehensive history, examination, or assessment to more clearly describe diagnoses, depending on what is available. Even when full diagnostic testing is not available, supportive measures, therapies, and education can be put in place to support children with developmental delays.
Treatment and support
Since fewer children are dying from malnutrition and preventable diseases, the international community should now start to focus on the potential of children, and not just their survival…. We’re now moving into an era where we can not only help children to survive, but really focus on helping them to thrive.
Despite increased vulnerability to developmental challenges, children with disabilities may be excluded from the social and community programs that typically benefit children in early developmental stages. Several conventions have sought to elucidate the importance of caring for children with disabilities in the same ways we care for all children. The Convention on the Rights of the Child and Convention on the Rights of Persons with Disabilities note that health care, nutrition, protection from violence and neglect, and inclusion in education systems are important for all children. There are many ways that communities can come together to provide support and therapeutic treatments to children with disabilities and their families. Disabled Village Children by David Werner provides many examples of ways families and communities can work together to promote developmental progress in children with disabilities or medical challenges. Fig. 3 illustrates an example of a way to provide opportunities for therapy in a community setting.
