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The study characterised differences in costs associated with raising a child between four rare disorders and examined the associations between these costs with clinical severity. Caregivers of 108 individuals with Prader-Willi, Angelman (AS), Chromosome 15q Duplication and fragile X (FXS) syndromes completed a modified Client Services Receipt Inventory and participants completed intellectual/developmental functioning and autism assessments. AS incurred the highest yearly costs per individual ($AUD96,994), while FXS had the lowest costs ($AUD33,221). Intellectual functioning negatively predicted total costs, after controlling for diagnosis. The effect of intellectual functioning on total costs for those with AS was significantly different to the other syndromes. The study highlights the significant costs associated with these syndromes, particularly AS, linked with severity of intellectual functioning.

© 2018, Springer International Publishing AG, part of Springer Nature. Objectives: This research produces a preference-based monetary valuation of informal care provided to children with intellectual disability (ID) that can be directly applied in economic evaluations. Methods: A discrete-choice experiment (DCE) was designed to elicit an individual’s willingness to accept compensation for different care tasks. Respondents were presented choice sets that included a care package comprising different amounts and types of care and asked to choose between the care package provided free of charge or providing that care themselves and receiving cash compensation. The care package included personal care, social support, household errands and housework, with the value of compensation, number of care hours provided and types of care varied across the choice sets. Choices were analysed using a generalised multinomial logit model and latent class model. Results: A representative sample of 198 caregivers completed the survey (response rate 52%). Participants were recruited in Australia. Overall, caregivers would accept a minimum of Australian dollars ($A)20.61 to provide 1 h of care. The preferences for assistance varied significantly with different types of care tasks. Individuals placed the highest value on receiving assistance with social support ($A35.96) and the least value on receiving assistance with household errands ($A-0.92) Conclusions: This study produces a value of informal care provided to children with ID that can be directly applied in economic evaluations. The study shows that informal care tasks are not valued equally. Caregivers placed the most value on receiving assistance with social support, which may reflect the time spent by caregivers on these tasks.

This paper investigates the role of caregiver mental health and parenting practices as predictors of attachment in children with intellectual disability/developmental delay, comparing between children with ASD (n = 29) and children with other developmental disabilities (n = 20). Parents reported that children with ASD had high levels of anxiety and stress, and attachment insecurity in children (less closeness and more conflict in attachment relationships, and more inhibited attachment behaviours) compared with children with other developmental disabilities. Children's attachment quality was associated with parenting practices and the presence of an ASD diagnosis. These results highlight the bidirectional nature of the quality of caregiving environments and attachment in children with ASD, and also provide a strong rationale for targeting children's attachment quality in early interventions.