Factors influencing access to early intervention for families of children with developmental disabilities: A narrative review

Abstract

Access to early intervention (EI) has been identified as a priority for global research in developmental disability (Collins et al., 2017;Tomlinson et al., 2014). As a term, developmental disability refers to several developmental conditions but especially developmental delay, intellectual disability and autism spectrum disorder (ASD) 1 .The onset of developmental disabilities takes place during early development and lasts throughout an individual's lifetime (Patel & Merrick, 2011). Whilst the individual needs of children with developmental disabilities are unique, general delays in cognitive and adaptive skills are present by definition (American Psychiatric Association, 2013;Carulla et al., 2011;McDonald et al., 2006). A range of other adverse outcomes are associated with developmental disabilities, such as poorer mental health, poorer physical health and social inequalities (Emerson, 2003;Emerson & Hatton, 2007;Gurney et al., 2006;Vasilopoulou & Nisbet, 2016). For example, an increased risk for behaviour problems is present in children with developmental disabilities as young as 3-5 years old (Totsika et al., 2011), and this increased risk persists into adolescence and adulthood (Gray 1 While autism spectrum disorder (ASD) is predominately used in the current paper in line with the Diagnostic and Statistical Manual of Mental Disorders-5, other autism diagnostic labels (Asperger syndrome, autism, Pervasive Developmental Disorder Not Otherwise Specified, Rett syndrome, autistic traits) are used to describe studies completed in the context prior to the widespread use of ASD as an all-encompassing autism diagnosis in instances where autism diagnostic label is pertinent to the findings.

Evaluation of the Trial Implementation of a Protocol for Assessing and Supporting Children With Developmental Delays and Disabilities at Rural Child and Youth Care Centres

“…Theoretically, the ECO-AIP builds on the ecosystemic perspective of Urie Bronfenbrenner (1979), denoting that the child's development reflects individual characteristics that largely depend on environmental systems at four systemic levels: (a) microsystems -the child's immediate family context, including behavioural patterns in the family; (b) mesosystems -interconnections between microsystems as reflected in the family's connectedness with other families and social systems; (c) exosystemsenvironmental conditions that indirectly influence the child's development, such as the family's poverty status, employment position, educational level and integration in the community context, and lastly; and (d) macrosystems -those attitudes, beliefs and values held by culture and society that indirectly influence parenting styles and how parents share aspects such as discipline and the general perspectives held on child development (Sapiets, Totsika & Hastings, 2020). According to the macrosystems conceptualisation, cultural beliefs play a significant role in parents' approach to raising children in rural contexts.…”

Critically Examining the Person–Environment Relationship and Implications of Intersectionality for Participation in Children's Rehabilitation Services

“…Given the improved developmental and participation outcomes associated with participation in rehabilitation services, it is critical that families who chose to engage in children's rehabilitation have adequate access to services available to them. Of notable concern, is when a family experiences barriers to accessing rehabilitation services as a result of factors such as the age of a child, parental stress, and culture or socio-economic status (SES) ( 19 , 20 ). Participation in therapy may be limited when personal and environmental factors create barriers to service use.…”

“…Parents of children with disabilities described features of the environment as making it harder for their children to participate in community-based activities ( 7 ), including participation in rehabilitation services. The potential influence of the social environment on participation was demonstrated in a systematic review examining the impact of family factors such as family structure, socio-demographic factors, parental behavior, and family resources on participation outcomes for children with disabilities, both generally and with specific reference to accessing the rehabilitation services of children ( 19 , 29 ).…”

Disability in children: a global problem needing a well-coordinated global action

“…This would require that EDIS policy and programmes are geared towards addressing the poor statistics on school enrolment and drop-out rates in mainstream education among children with disabilities. This, in turn, would entail concerted efforts to address the well-documented social, cultural and economic barriers for effective EDIS, especially in LMICs 8 14 15. Thus, UNESCO, as the lead agency for education globally, can provide the requisite long-term strategic vision for WHO–UNICEF-led ECD initiatives from birth to age 5 years as exemplified in some HICs 16.…”