Citation: Collins PY, Pringle B, Alexander C, Darmstadt GL, Heymann J, Huebner G, et al. (2017) Global services and support for children with developmental delays and disabilities: Bridging research and policy gaps. PLoS Med 14(9): e1002393. https://doi.org/10.1371/journal.pmed.1002393
Published: September 18, 2017
This is an open access article, free of all copyright, and may be freely reproduced, distributed, transmitted, modified, built upon, or otherwise used by anyone for any lawful purpose. The work is made available under the Creative Commons CC0 public domain dedication.
Funding: The authors received no specific funding for this work.
Competing interests: Authors of this paper participated in the Forum on Investing in Young Children Globally of the National Academies of Sciences, Engineering, and Medicine (National Academies). AS is a member of the Forum to Promote Children's Cognitive, Affective, and Behavioral Health at the National Academy of Medicine.
Abbreviations: ADHD, attention-deficit/hyperactivity disorder; CEE/CIS, Central and Eastern Europe and the Commonwealth of Independent States; CRC, Convention on the Rights of the Child; HIC, high-income country; LMIC, low- and middle-income country; mhGAP, Mental Health Gap Action Program; MICS, Multiple Indicator Cluster Survey; SDG, Sustainable Development Goal
Provenance: Not commissioned; externally peer reviewed.
The UN Sustainable Development Goals (SDGs) were formulated based on the principle that people everywhere deserve “equitable and universal access to quality education at all levels, to health care and social protection, where physical, mental and social well-being are assured” [1]. This vision for inclusive healthy societies includes children with developmental delays and cognitive, mental, and neurological disabilities (henceforth developmental delays and disabilities). The UN Convention on the Rights of the Child (CRC) further stipulates that children with disabilities cannot be excluded from free and compulsory primary and secondary education based on their disability [2]. Yet, children with disabilities are more likely to grow up in poverty and to receive less healthcare, early childhood care and development services, and education [3,4]. Caregivers and parents play a central role in facilitating children’s access to early childhood development interventions, including healthcare and education, but must be adequately supported.
Recent analyses highlight the importance of early child development and delineate the conditions that place children at risk for not achieving their developmental potential as well as the interventions and research needed to mitigate this [5–9]. With optimal implementation of existing prevention and care interventions, a subset of children will nevertheless be identified with developmental delays and disabilities of varying severity. Ideally, their caregivers, parents, community structures, and societies can be equipped to accommodate their needs to achieve maximum social inclusion and functioning. This paper identifies research and policy activities that, if implemented, could improve the identification of children with delays and disabilities and the ability of caregivers to help meet their developmental, health, and educational needs. We describe opportunities for research or policy shifts in 5 main areas: identifying children with delays and disabilities, ensuring access to early childhood programs and school programs for children, training and support of parents/caregivers to strengthen their ability to care for their children, supporting caregivers’ ability to work, and ensuring that the mental health needs of caregivers are met.
The most recent Global Burden of Disease data estimate that in 2015, there were 3.6 million children aged 1–9 years living with autism and more than 15 million living with idiopathic developmental intellectual disability [10]. These are only 2 of many cognitive, emotional, mental, and neurological disabilities. Yet, neither incidence nor prevalence for the full range of childhood delays and disabilities is well established in global data. Rates of cognitive disabilities linked to infections (e.g., pneumonia, meningitis, encephalitis, and HIV), prematurity and stunting, neonatal encephalopathy, hyperbilirubinemia, prenatal iodine and other nutritional deficiencies, and neural tube defects linked to inadequate folic acid are likely higher in low- and middle-income countries (LMICs) than in high-income countries (HICs) given the numbers of children living in poverty and the distribution of these risk factors [11–14]. The accumulation of adversities, beginning before conception and continuing throughout prenatal and early life, can disrupt brain development, attachment, and early learning [5]. Developmental delays become evident in the first year, worsen during early childhood, and continue throughout life [6, 15].
Over the past decade, population-based studies have measured the prevalence of disabilities across several countries. Utilizing a disabilities module within the 2005–2007 Multiple Indicator Cluster Survey (MICS) [16], 1 study found that 20% of children across 16 LMICs screened positive for at least 1 impairment (range 3% to 45%), and 5%, 12.7%, 2.9%, and 6.2% of children screened positive for a cognitive, language, sensory, or motor impairment, respectively [17]. A more recent estimate derived from predictive modelling in 35 LMICs showed that 81 million 3-to-4-year-olds (33% prevalence) had low cognitive or socioemotional development in 2010 [18]. The proportion of under-5 children in LMICs at risk of not attaining their developmental potential because of extreme poverty and stunting remains high at 43% [5].
Accurate identification of a child’s impairment in the first years of life makes reversal or mitigation of adverse effects more likely [19]. Routine screening can be implemented in primary care with high fidelity, low cost, and acceptable levels of burden [20–23]. Provider training increases screening and identification of developmental delays [24, 25]. Proactive case finding using community informants is also a promising approach [26]. When linked with diagnostic assessment and evidence-based interventions, early detection helps to increase the proportion of children who achieve their developmental potential, fulfill their ability to work and contribute [27], are not raised in institutions, and do not need expensive services later in life [28–30]. Ethical care requires that screening be linked to intervention.
The benefits of early intervention for children with developmental delays and disabilities, families, and communities have been well documented in HICs [28, 31, 32]. A recent review of studies from LMICs provides evidence of similar positive outcomes with early interventions for at-risk children, although research that examines outcomes for children with established disabilities is limited [33]. Scarce human resources for mental, neurological, or developmental pediatric care can limit access to services in LMICs. Task-sharing approaches that provide abbreviated training to less specialized providers for the delivery of evidence-based screening, care, and support interventions can help bridge the resource gap. Researchers in Pakistan screened a large rural community by distributing written descriptions of developmental disorders that included motivational messages and by administering the Ten Questions Screen for disability using an interactive voice response system [34]. Children who screened positive were eligible to work with a network of families equipped with “family champion volunteers” trained in evidence-based interventions outlined in the WHO Mental Health Gap Action Program’s (mhGAP) intervention guide. Significant results included reduced WHO Disability Assessment Schedule global disability scores, lower parent-reported socioemotional difficulties in children, and no diminution of caregiver well-being. Equally important, the family volunteers engaged in more advocacy for children’s education, healthcare, and community inclusion. In another study, nonspecialist health workers in India and Pakistan were trained to coach parents of children with autism to apply strategies for improving parent–child interactions, with an emphasis on communication [35]. Parents and children showed more synchronous communication, and children initiated more communication with the parent.
Access to education remains a critical intervention for children with delays and disabilities, but disparities in educational opportunity, quality, and outcomes persist [36]. Poorer outcomes are related in part to nonenrolment in school, exclusion from participation in classroom activities, and greater likelihood of school dropout [36]. Yet, children with developmental delays and disabilities and their peers without these conditions benefit when early childhood, school, and out-of-school programs are fully inclusive. Education helps break cycles of poverty, potentially for the child with the delay or disability and for siblings who begin a “caregiver career” rather than attending school [3, 37]. The availability of educational programs year-round during the workday plays a key role in ensuring that children and youth with delays and disabilities have the fullest developmental and educational opportunities in settings far better than institutional care can provide. Such programs increase the likelihood that their parents are able to work, support their families, and lead full lives [3]. Integrated education also serves to educate peers on the needs of children with disabilities and provide pathways for interaction and understanding. Table 1 outlines population- and community-level interventions alongside healthcare interventions that can benefit children with delays and disabilities [38].