Thousands of siblings of disabled children are often overlooked with their needs coming second to those of the disabled child, according to new research.
Siblings of disabled children across the UK have shared their experiences in a new report to be launched today by University of Portsmouth and the charity, Family Fund.
The report found that the siblings of disabled children provide significant care and emotional support to their brothers and sisters, and the charity says it’s time policymakers took notice of their needs.
Jenny Peddar, author of the report and senior lecturer at the School of Health Sciences and Social Work at the University, said: “This study confirmed some expectations of the impact of having a sibling with a disability and raised a number of additional issues.
“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.’”
The report, ‘Do Siblings Matter Too?’, highlights a number of key themes for siblings, ranging from elements of a typical sibling relationship to issues of lack of time, experience of aggression, violence and emotional upset.
Data taken from over 2,000 assessments contributed to the report. The key findings show:
- Siblings are often overlooked and their needs often ignored by policy makers and service providers.
- Siblings are not identified by local authorities and schools.
- Few siblings are being supported by agencies such as Child and Adolescent Mental Health Service or Young Carer groups and it would be of benefit if access to these and similar services, could be made more widely available.
A further 10 siblings completed a photo-elicitation study, in which they took photos or selected images that they felt reflected what being a sibling meant to them and then discussed the photos chosen and what they said about their lives with an interviewer.
A 17 year-old sibling who spoke about their experience for the report said: “I think that being a sibling you get your ups and downs anyway… but just because there is the added bit of the disability sometimes you don’t know what she is going to do or how she’s going to take it or react, you have to be a bit more careful, because it can be a bit of a roller coaster, up and down.”
There are estimated to be around 800,000 disabled children in the UK, and the charity Sibs estimates that there are over 500,000 siblings. Disabled children are more likely to live in families where there is poverty or deprivation, meaning their siblings do as well.
Cheryl Ward is group chief executive at the Family Fund, the UK’s largest grant-making charity for low income families raising disabled or seriously ill children.
She 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.”