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.
Early intervention (EI) provision is critical for families who have children with developmental disabilities (DD), but existing evidence suggests accessing EI is not always straightforward. The purpose of this study was to provide a comprehensive description of access to various EI supports (e.g., professionals, services, interventions) for families of young children with suspected or diagnosed DD across the United Kingdom and to investigate perceived ease of access to support, unmet need for support, and barriers and facilitators of access to support. Overall, 673 parental caregivers of children aged 0 to 6 years with suspected or diagnosed DD (e.g., developmental delay, intellectual disability, autism) completed our survey anonymously. Across education, health, and social care, services accessed the most were pediatrics ( N = 569, 84.5%), speech and language ( N = 567, 84.2%), and general medical practice ( N = 530, 78.8%). However, only 18.9% ( N = 127) accessed packaged interventions. More than three-quarters ( N = 508, 75.5%) reported an unmet need for early support, indicating a mismatch between the availability and capacity of services and demand for support. Parents also reported common barriers (e.g., obstructive services and unhelpful professionals) and facilitators (e.g., supportive and competent professionals, enabling parent factors) of access. Implications for policy, practice, and research are discussed.
This study examined predictors of access to early support amongst families of 0-6-year-old children with suspected or diagnosed developmental disabilities in the United Kingdom. Using survey data from 673 families, multiple regression models were fitted for three outcomes: intervention access, access to early support sources, and unmet need for early support sources. Developmental disability diagnosis and caregiver educational level were associated with intervention access and early support access. Early support access was also associated with child physical health, adaptive skills, caregiver ethnicity, informal support, and statutory statement of special educational needs. Unmet need for early support was associated with economic deprivation, the number of household caregivers, and informal support. Multiple factors influence access to early support. Key implications include enhancing processes for formal identification of need, addressing socioeconomic disparities (e.g., reducing inequalities, increasing funding for services), and providing more accessible services (e.g., coordinating support across services, flexible service provision).
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