Authors of a new study say that siblings of disabled children in the UK are not getting the support they need and deserve
Do Siblings Matter Too? – which is jointly authored by the University of Portsmouth and the charity Family Fund – says that the siblings of disabled children provide significant care and emotional support for their brothers and sisters and it is time policy makers took notice of their needs.
The report draws on answers given by over 2,000 applicants to a question on the charity’s assessment form asking for the name and age of any siblings and about the effect of the child’s disability on them.
The study also used photo-elicitation: 10 siblings took a total of 99 photos to show what being the brother or sister of a disabled child meant to them; they were then interviewed about their images and what they wanted them to convey.
Along with some positives, siblings expressed concern about the amount of time parents/carers were able to spend with them; aggression, fighting and breaking of items; and sleep deprivation. They also highlighted the time they spent helping their disabled sibling; the impact of this on their education; the disruption it caused to ‘normal’ family life; and their emotional stress.
Jenny Peddar, author of the report and senior lecturer at the School of Health Sciences and Social Work at the University of Portsmouth, said:
‘Siblings experience a wide range of issues and this study showed very limited support for these young people. The complexity of life for these families needs wider recognition by services and the voice of the siblings needs to be heard by those working with the families.’
It’s estimated there are around 800,000 children with a disability in the UK and that 99 per cent of them are cared for at home by a family member. Research suggests that 80 per cent of children with a disability will have one or more siblings.
Family Fund has administered a discretionary grant fund for the siblings of disabled children since 2011. Group Chief Executive Cheryl Ward said:
‘This report shows just how important it is to recognise the vital role siblings play in the family, and in a lot of cases sharing the care of their brother or sister. Siblings are not identified within support services, we are calling on policymakers to start the conversation on the needs and challenges of siblings and look at the services that need to be developed. Let’s listen to the voices and experiences outlined in this report and make this happen.’
