Aim The aim of this study was to examine geographical variability in the support for families caring for children with severe disabilities as well as the relationships between this variability and local government social and educational performance indicators.
Method Data were collected from a cross-sectional, self-completed postal survey of the families of 5862 children and young people (aged 0–24y, mean 10y 7mo; 68% male) with severe disabilities resulting in a variety of impairments (21% with autism spectrum disorders, 16% with learning disabilities,* 13% with emotional and behavioural difficulties, and 13% with cerebral palsy [CP]). Data on the severity of intrinsic impairment were assessed using the Health Utilities Index, and the need for support was assessed from the results of a novel parent-completed questionnaire, the European Child Environment Questionnaire (ECEQ). These responses were related to data published by local authorities on educational and social policy.
Results Higher levels of unmet need and lack of support, as reported by parents of children and young people with severe disabilities, are associated with greater impairment but not with socioeconomic deprivation. After controlling for impairment and diagnosis, variation at local government level is of the order of 1 to 1.5 ECEQ standard deviation scores. The best- and the worst-performing local authorities – in terms of the averages of the ‘support’ scores reported by their surveyed residents – cluster in urban areas. For children with CP, a positive correlation was found between the reported unmet educational support requirements in each local authority area and rates of mainstream school placement for children with special educational needs. This indicates that the placement of children with disabilities into mainstream schools is associated with reported unmet need (r=0.60; p=0.01). In the case of children with autism spectrum diagnoses, the provision of additional basic educational support in mainstream primary education was associated with lower average local authority scores for unmet need, suggesting that this support was appreciated by residents (r=−0.75; p=0.005).
Interpretation Parent-reported unmet need in the care of children with disabilities shows significant geographical variation after adjustments for severity, type of impairment, and socioeconomic deprivation. Associations between some aspects of reported unmet need and local authority performance indicators suggest that support for families of children with severe disabilities may be improved by policy changes at local government level.