Families’ Access to Early Intervention and Supports for Children With Developmental Disabilities

Abstract

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.

Finding the On Ramp: Accessing Early Intervention and Early Childhood Special Education in an Urban Setting

“…The difficulties that families experience while try to access EI/ECSE systems have been documented in the United States broadly (Keating et al, 2022), as well as in rural areas (Cummings et al, 2017). Families in other countries, such as the United Kingdom, also have reported experiencing difficulties, despite the differing contexts (Sapiets et al, 2022). In urban communities, which is the context for this student, families face these, and additional, barriers.…”

Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry

“…There has been limited research evaluating access to, and barriers associated with, early intervention supports while families wait for a developmental assessment (Sapiets et al, 2021; Sapiets et al, 2023). This means that there is little awareness about the types of supports that families might already be able to access without a diagnosis, as well as knowledge about the types of services and barriers families may face when accessing different supports during this time.…”

“…This means that there is little awareness about the types of supports that families might already be able to access without a diagnosis, as well as knowledge about the types of services and barriers families may face when accessing different supports during this time. Anonymous surveys of caregivers of children with suspected or diagnosed neurodevelopmental conditions have found that children can have relatively high levels of access to pediatricians, general medical practitioners and speech pathologists, but may have considerably less access to behavioral interventions and mental health supports (Sapiets et al, 2022). This is despite children with neurodevelopmental conditions commonly showing significant co‐occurring mental health symptoms (Boulton et al, 2023).…”

“You’ve actually got two patients, you haven’t got one”: parent-informed criteria for evaluating the autism assessment process

“…Since parents already report many barriers to accessing services, e.g. long waiting lists, lack of co-ordination and limited resources (Sapiets et al 2023), negative experiences during assessment should not pose another potential barrier to engagement. This study aimed to address how families' needs can be better met during the assessment process.Design/methodology/approach -In this qualitative study, the author conducted semi-structured interviews with 11 parents whose child had undergone an autism assessment in the last five years.…”

“…Since parents already report many barriers to accessing services, e.g. long waiting lists, lack of co-ordination and limited resources (Sapiets et al 2023), negative experiences during assessment should not pose another potential barrier to engagement. This study aimed to address how families' needs can be better met during the assessment process.…”