History and Background
Children under 5 years with and without disabilities constitute a very important population group in global health. The first five years of life is critical to a child's growth, development, health and well-being over the life course. Political support to address the needs of children under 5 years with disabilities in particular is enshrined in the Convention on the Rights of the Child (CRC), the Convention on the Rights of Persons with Disabilities (CRPD), the subsisting Resolution of the World Health Assembly on Disability (WHA66.9), and more notably the United Nations' Sustainable Development Goals (SDGs) 2015-2030.
The population of children under 5 years at risk of poor development was first reported as 200 million in low and middle-income countries when the Lancet series on ECD was launched in London, UK in 2007. This estimate was based solely on two proxy measures of child development: stunting and extreme poverty. Children with disabilities were excluded because of the lack of population-based data at the time. The estimate was revised to 250 million in 2017.
In contrast to the Millennium Development Goals (MDGs), the SDG Target 4.2 requires that by 2030, all girls and boys have access to quality early childhood development, care and pre-primary education so that they are ready for primary education. To monitor progress towards the achievement of this target, the SDG (4.2.1) explicitly mandates the routine monitoring of “the proportion of children under 5 years who are developmentally on track in health, learning and psychosocial wellbeing, by sex”.
Conceptually, children who are not "developmentally on track" include children diagnosed with disabilities and those with developmental delays. However, based on the extensive evidence on the science of human brain development the children with disabilities are the most disadvantaged in realizing their developmental potential compared to those with developmental delays due to stunting, extreme poverty and other risk factors. Several factors, including unfavourable cultural beliefs, discrimination, social stigma and the lack of appropriate support services especially in low and middle-income countries, place the children with disabilities at higher risks of neglect, maltreatment, violence, family disintegration, exclusion from formal education and full economic participation, and even premature death compared to children without disabilities. In some resource-limited settings, families consider mild disability as somewhat better than death, moderate disability as bad as death, and severe and profound disability as far worse than death [1]. These children therefore, deserve to be prioritized in any global initiatives for ECD.
In 2017, some collaborators of the Global Burden of Disease (GBD) Study under the Institute of Health Metrics and Evaluation (IHME), USA, decided to form the Global Research on Developmental Disabilities Collaborators (GRDDC) to address the challenge of lack of data for children with disabilities using the best available data. The formation of the group was also inspired by the lack of disability-inclusive groups of experts dedicated to addressing the lifelong impairments specifically among children under 5 years who are the beneficiaries of the massive global investment in reducing under-5 mortality since the MDG era. Additionally, the group was conceived as an effort to address the dearth of Global South-led initiatives in Global Health.
The GRDDC has evolved as a unique Global South-led intiative in Global Child Health. It is an informal group of professionals with and without lived experience of childhood disability drawn from different regions of the world. In addition to the founding members, other collaborators were recruited through open calls on two major child health platforms in 2018: the Early Childhood Development Task Force (ECDtF) of the Global Partnership for Children with Disabilities and CHIFA (child health and rights), UK. Collaborators have also been recruited based on members' recommendations and publicly verifiable engagement on childhood disabilities. The governance structure consists of a Coordinator, Steering Committee, and an Advisory Board. As a policy, the leadership team has been constituted to reflect equity, equality, diversity, and inclusion, in line with international best practice.
In 2018, the GRDDC, with support from the IHME published the first comprehensive global, regional and national estimates of children under 5 years with six specific developmental disabilities in The Lancet Global Health [2]. This was followed by another paper in Pediatrics in 2020 which updated the widely reported 93 million global estimate of children and adolescents with disabilities first reported in the World Report on Disability 2011 by the World Health Organization [3]. The open access charges for both articles were funded by The Bill and Melinda Gates Foundation through IHME. A full list of articles by GRDDC and exisiting global pledges to support children with disabilities can be viewed on the PUBLICATION page on this website.
It is noteworthy that the WHO now partners with IHME on disability statistics and other health metrics which should result in the publication of essential disability data going forward.
References
1. Global Research on Developmental Disabilities Collaborators. Accelerating Accelerating Progress on Early Childhood Development for Children Under-5 Years with Disabilities by 2030. (Under Review).
2. Global Research on Developmental Disabilities Collaborators. Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Glob Health. 2018 Oct;6(10):e1100-e1121. doi: 10.1016/S2214-109X(18)30309-7.
3. Olusanya BO, Wright SM, Nair MKC, et al; Global Research on Developmental Disabilities Collaborators (GRDDC). Global Burden of Childhood Epilepsy, Intellectual Disability, and Sensory Impairments. Pediatrics. 2020 Jul;146(1):e20192623. doi: 10.1542/peds.2019-2623.
The population of children under 5 years at risk of poor development was first reported as 200 million in low and middle-income countries when the Lancet series on ECD was launched in London, UK in 2007. This estimate was based solely on two proxy measures of child development: stunting and extreme poverty. Children with disabilities were excluded because of the lack of population-based data at the time. The estimate was revised to 250 million in 2017.
In contrast to the Millennium Development Goals (MDGs), the SDG Target 4.2 requires that by 2030, all girls and boys have access to quality early childhood development, care and pre-primary education so that they are ready for primary education. To monitor progress towards the achievement of this target, the SDG (4.2.1) explicitly mandates the routine monitoring of “the proportion of children under 5 years who are developmentally on track in health, learning and psychosocial wellbeing, by sex”.
Conceptually, children who are not "developmentally on track" include children diagnosed with disabilities and those with developmental delays. However, based on the extensive evidence on the science of human brain development the children with disabilities are the most disadvantaged in realizing their developmental potential compared to those with developmental delays due to stunting, extreme poverty and other risk factors. Several factors, including unfavourable cultural beliefs, discrimination, social stigma and the lack of appropriate support services especially in low and middle-income countries, place the children with disabilities at higher risks of neglect, maltreatment, violence, family disintegration, exclusion from formal education and full economic participation, and even premature death compared to children without disabilities. In some resource-limited settings, families consider mild disability as somewhat better than death, moderate disability as bad as death, and severe and profound disability as far worse than death [1]. These children therefore, deserve to be prioritized in any global initiatives for ECD.
In 2017, some collaborators of the Global Burden of Disease (GBD) Study under the Institute of Health Metrics and Evaluation (IHME), USA, decided to form the Global Research on Developmental Disabilities Collaborators (GRDDC) to address the challenge of lack of data for children with disabilities using the best available data. The formation of the group was also inspired by the lack of disability-inclusive groups of experts dedicated to addressing the lifelong impairments specifically among children under 5 years who are the beneficiaries of the massive global investment in reducing under-5 mortality since the MDG era. Additionally, the group was conceived as an effort to address the dearth of Global South-led initiatives in Global Health.
The GRDDC has evolved as a unique Global South-led intiative in Global Child Health. It is an informal group of professionals with and without lived experience of childhood disability drawn from different regions of the world. In addition to the founding members, other collaborators were recruited through open calls on two major child health platforms in 2018: the Early Childhood Development Task Force (ECDtF) of the Global Partnership for Children with Disabilities and CHIFA (child health and rights), UK. Collaborators have also been recruited based on members' recommendations and publicly verifiable engagement on childhood disabilities. The governance structure consists of a Coordinator, Steering Committee, and an Advisory Board. As a policy, the leadership team has been constituted to reflect equity, equality, diversity, and inclusion, in line with international best practice.
In 2018, the GRDDC, with support from the IHME published the first comprehensive global, regional and national estimates of children under 5 years with six specific developmental disabilities in The Lancet Global Health [2]. This was followed by another paper in Pediatrics in 2020 which updated the widely reported 93 million global estimate of children and adolescents with disabilities first reported in the World Report on Disability 2011 by the World Health Organization [3]. The open access charges for both articles were funded by The Bill and Melinda Gates Foundation through IHME. A full list of articles by GRDDC and exisiting global pledges to support children with disabilities can be viewed on the PUBLICATION page on this website.
It is noteworthy that the WHO now partners with IHME on disability statistics and other health metrics which should result in the publication of essential disability data going forward.
References
1. Global Research on Developmental Disabilities Collaborators. Accelerating Accelerating Progress on Early Childhood Development for Children Under-5 Years with Disabilities by 2030. (Under Review).
2. Global Research on Developmental Disabilities Collaborators. Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Glob Health. 2018 Oct;6(10):e1100-e1121. doi: 10.1016/S2214-109X(18)30309-7.
3. Olusanya BO, Wright SM, Nair MKC, et al; Global Research on Developmental Disabilities Collaborators (GRDDC). Global Burden of Childhood Epilepsy, Intellectual Disability, and Sensory Impairments. Pediatrics. 2020 Jul;146(1):e20192623. doi: 10.1542/peds.2019-2623.