Research Article: Global services and support for children with developmental delays and disabilities: Bridging research and policy gaps

Date Published: September 18, 2017

Publisher: Public Library of Science

Author(s): Pamela Y. Collins, Beverly Pringle, Charlee Alexander, Gary L. Darmstadt, Jody Heymann, Gillian Huebner, Vesna Kutlesic, Cheryl Polk, Lorraine Sherr, Andy Shih, Dragana Sretenov, Mariana Zindel

Abstract: Pamela Collins and colleagues explain the research and policy approaches needed globally to ensure children with developmental delays and disabilities are fully included in health and education services.

Partial Text: 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.

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].

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.

Children with delays and disabilities can thrive in family contexts, particularly if parents and caregivers receive proper training and ongoing support. Directive parenting, combined with “sensitive, responsive, and reciprocal outcomes” and a stimulating home and community environment, led to favorable developmental outcomes for infants and children with Down syndrome in 1 study [39]. Conversely, a lack of knowledge about their child’s condition and needs, negative feelings, and lack of support adversely affected parent–child interactions, child behavior, and development. If provided with nurturing and supportive family care, children with delays and disabilities have a better chance of leading healthy and full lives, particularly when such care is provided from early in life. Nurturing care has recently been defined as a stable environment that is sensitive to children’s health and nutritional needs, with protection from threats, opportunities for early learning, and interactions that are responsive, emotionally supportive, and developmentally stimulating [40]. As an overarching concept, nurturing care is supported by an ecosystem of social contexts—from home to parental work, child care, schooling, the wider community, and policy influences [41].

Worldwide, families caring for children with disabilities have lower incomes because of constraints on employment [45]. The income needs of families with children with developmental delays and disabilities are on average higher than those of families whose children do not have these conditions because of the costs of services and care [46], which are rarely fully covered by public funds. Studies from LMICs and HICs demonstrate that parental attention to children’s health and involvement in education leads to better outcomes for children [45]. To do this while sustaining financial stability requires access to paid leave; yet, globally, marked disparities in access to paid leave for both parents persist [45]. Parents and caregivers employed in informal work sectors likely have even fewer protections. In the absence of adequate leave, wage loss can be significant [47].

In addition to psychosocial support, the mental health needs of caregivers must be met for them to nurture healthy developmental trajectories in their children. Disabling mental disorders like major depression are prevalent worldwide. The reported prevalence of maternal depression is higher in LMICs (15%–20%) compared to HICs (6%–13%), possibly because of the distribution of social risk factors for maternal depression and the limited healthcare infrastructure and resources for care [48, 49]. Depression limits a mother’s responsiveness to her infant and is associated with inconsistent behavior and less emotional sensitivity to the child [50]. Maternal depression may also lead to early cessation of breastfeeding and undernutrition in the first year of life, lower rates of immunization, higher rates of underweight and stunting [51], and higher rates of childhood illnesses like diarrhea [52]. As compared to children with healthy mothers, infants born to depressed mothers are at a higher risk of poorer long-term cognitive development and delayed motor development; have higher rates of antisocial behavior, hyperactivity, and attention difficulties; and have more frequent emotional problems [48].

Managing the needs of children with developmental delays and disabilities and meeting their caregivers’ needs require collaboration across the health system as well as intersectoral cooperation (Table 1 [38]). Ideally, detection and screening would occur at all levels. Referrals for care typically involve educational and behavioral health specialists in HICs, but a small and growing evidence base from LMICs shows that families and nonspecialist providers can also be engaged. Crucially, medical providers must be sensitized to the needs of these children to ensure that they receive adequate preventive and curative healthcare alongside behavioral, social, and educational interventions. Care managers (employed in chronic care models) who can support families and facilitate communication among schools, social services, and healthcare personnel would prove valuable for coordinating care and support.



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