Support as usual in local authority services for families of children with intellectual disabilities [version 1; peer review: 1 approved with reservations, 1 not approved]

Background: Families of children with intellectual disabilities often experience increased adversity and inequalities. Despite this, parent-reported data suggest that these families experience significant barriers in accessing appropriate supports. Less research has characterised what service providers offer to families. Understanding usual support for these families is important when considering comparators in evaluation research. The purpose of the current study was to describe support as usual for families of children with intellectual disabilities as reported by professionals and service providers.

Methods: Data on supports available to parents, siblings, and young carers, were extracted from the Local Offer websites of 100 randomly selected Local Authorities in England. Survey data were also collected from 66 professionals, either working in UK Local Authority services and/or services commissioned by Local Authorities, about what programmes and/or interventions are currently offered to parents of children with intellectual disabilities. Data were analysed and summarised using content analysis and descriptive statistics.

Results: A wide range of support programmes and/or interventions were described as being available to parents of children with intellectual disabilities. Most supports available were primarily designed for parents of non-disabled children or parents of children generally with special educational needs and disabilities. Data extracted from Local Offer websites led to the identification of six broad categories of programmes for parents; relatively few Local Authorities provided supports available for siblings or young carers.

Conclusion: Our findings offer researchers and professionals (e.g., practitioners, commissioners) insights into usual support offered by Local Authorities to families of children with intellectual disabilities. Future research may draw upon these findings when designing evaluations of health and social care interventions in the UK. Additional research is also needed in terms of the relationship between what might be on offer for families in theory and what they are actually able to access.