New report shows siblings of disabled children need more support
Thousands of siblings of disabled children are often overlooked as their needs come second to that of the disabled child, with many of them providing significant care and emotional support to their brothers and sisters.
Siblings of disabled children across the UK have shared their experiences in a new joint report launched today by University of Portsmouth and Family Fund, the UK’s largest grant-making charity for low income families raising disabled or seriously ill children.
The report, ‘Do Siblings Matter Too?’ launches today at the Royal College of Paediatrics and Child Health and reveals the impact a disabled brother or sister has on a child or young person. It 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, in which 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 (CAMHS) 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 rollercoaster, 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, Group Chief Executive at the Family Fund said:
"Family Fund has supported siblings of disabled children through our Siblings Matter Too grant programme for over four years with almost 1,500 grants provided. But with over 500,000 siblings of disabled children in the UK, we have a long way to go to reach all of those in need.”
“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.”
Jenny Peddar, author of the report and Senior Lecturer at the School of Health Sciences and Social Work, University of Portsmouth, 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.'”
To discuss potential partnership working or gain a copy of the research report in full, contact comms@familyfund.org.uk
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Notes to editors
For all press enquiries, please contact Jim Paterson on 01904 571094/ comms@familyfund.org.uk (office hours Mon-Fri, 9am-5pm).
1. About the Family Fund
Family Fund is the country’s largest grant-giving charity for families on low incomes raising disabled and seriously ill children and young people, supporting them to have the same opportunities as others. It does this by providing grants for essential items such as kitchen appliances, clothing, bedding, sensory toys, computers/tablets, much-needed family breaks and more.
Across the UK last year, the Family Fund supported 72,043 families with over £33 million in grants and services. www.familyfund.org.uk
This study, conducted by Jenny Peddar, Senior Lecturer, The School of Health Sciences and Social Work at the University of Portsmouth, aimed to determine what it is like to be a sibling of a child with a disability. It was decided to utilise the material being collected by Family Fund’s Independent Assessors during their assessments of families as this is a rich source of data regarding this subject, and also to ask those siblings being provided with grants about their experiences.
The assessment form for Family Fund includes a question that asks “What is the effect of the child’s disability on their brothers and sisters? Please include the name and age of any siblings”. The information from this question was downloaded anonymously for a two-month period (October-November 2012). This gave a sample of 2,299 entries.
Siblings who had been given a Siblings Matter Too grant were asked if they would participate in the study. Each sibling was sent a disposable camera, or given the opportunity to take photos on a camera of their choice. They were asked to take photos to show what being a sibling meant to them. These photos were printed and taken to an interview in which they discussed what those photos meant, why they had selected those images, what other images they would have taken and any thoughts they would like people to know about their experiences. Initially, 13 siblings were identified who had volunteered to take part in the study. A further eight were recruited once the study was finalised. A total of 10 siblings completed the full study.
3. Key facts and figures
- There are an estimated 800,000 disabled children in the UK (Department for Work and Pensions, June 2012).
- Every 25 minutes a child is diagnosed with a severe disability, 99% of whom are cared for at home by a family member. (Contact a Family, 2012).
- 80% of children with a disability will have one or more siblings (Burke P, 2004).
- Family Fund is the only UK-wide organisation that provides grants for siblings of disabled children.
- 4 in 10 disabled children live in poverty (Children’s Society, 2011).
Jim Paterson, Head of Communications
Family Fund, 4 Alpha Court, Monks Cross Drive, Huntington, York, YO32 9WN
Tel: 01904 571094 email: comms@familyfund.org.uk
The Family Fund is the country’s largest grant-giving charity and has over forty years of helping families with disabled children. It helps ease the additional pressures faced by low-income families raising a disabled child by giving them grants for a wide range of goods and services, including washing machines, dryers, fridges, clothing, bedding, sensory toys, computers, much-needed family breaks and more. Across the UK last year, the Fund supported over 72,000 families.