“I’m worried…” Supporting the difficulties faced by siblings of children with disabilities


With Claire Kassa, CEO of Sibs Charity

In the UK, there are over 500,000 siblings of children and young people with a disability. 5.1% of children under 16 have a sibling of a child with a disability. #NationalSiblingsDay2024 aims to highlight the challenges experienced by young people who often help care for their disabled siblings. Young people who regularly care for siblings can find school and life in general difficult. They may also have additional needs of their own, but feel that their needs are neglected or prioritised less than those of their sibling who require more support.

The charity Sibs published a report this week of more than 200 siblings aged between five and 16. Here are their findings:

66% of children have told a teacher about their sibling’s situation. 75% have told a friend about their disabled sibling. 74% did not receive sibling support from their school. 43% said their school did not understand their sibling situation. 34% had difficulty doing homework because of their situation. 30% said they were tired because they did not get enough sleep. 19% reported being late to school because of caring for a sibling.

Even if they are not caregivers, they may have fewer options and opportunities than their peers and may suffer health and education problems. Some children reported missing school because they had to accompany their families to medical appointments for siblings at specialist centres far away.

The Sibs charity does fantastic work supporting sisters and brothers in this area and their CEO, Clare Kassa, writes about their work supporting young carers of disabled siblings.

How to Support Siblings of Children with Disabilities by Claire Kassa, Sibs

Siblings who grow up with a disabled brother or sister often say that no one knows what their life is like, and at Sibs we understand that school can be a challenging place for siblings for a variety of reasons.

Sharing a bedroom with a sibling can leave you feeling fatigued due to sleep disorders. You may be consistently late because siblings are sent to specialized care first. Siblings may struggle to complete their homework and may come to school without the right equipment or a packed lunch due to busy families.

They may be very caring towards their siblings and supportive parents too.

Schools can support siblings

Despite schools being overwhelmed with staff and resources, many are supporting students who are struggling at school because of their siblings. We regularly hear from schools who want to support siblings but aren’t quite sure where to start.

With this in mind, we have developed a new free set of resources for primary and secondary schools, Sibs Talk Lite, designed to support siblings who have a sibling who is disabled, has special educational needs (SEND) or has a serious long-term health condition.

Sibs Talk for Primary School

Aimed at primary school children, Sibs Talk Lite is a free, condensed version of our Key Stage 2 intervention programme, Sibs Talk. It consists of a story pack containing four short stories, questions and prompts that can be used as the basis for circle time discussions or PSHE lessons.

Stories address issues such as living with a sibling with serious medical needs, maintaining friendships at school, why school life is tough and living at home when it can be busy and stressful. They also include short videos to help siblings understand what it means to be a sibling. Guidance notes for teachers are provided alongside the new resources to help schools stimulate conversations in circle time and provide opportunities for small group work and large group activities.

The activities in this booklet can be implemented by school staff at all levels to normalize siblings’ experiences growing up in the family, acknowledge siblings’ feelings about life, teach siblings strategies to deal with difficult situations, and enable schools to make positive changes that improve siblings’ school experiences.

Sibs Talk for Junior High School

For secondary school pupils, Sibs Talk Lite provides a teacher’s toolkit with a set of Teen Talk worksheets for PSHE lessons in young carer groups or one-to-one support. The worksheets help siblings to think about difficulties at school and how to ask for help, as well as start to think about the future. It also includes a set of assembly slides with notes to help schools support pupils who have siblings with disabilities. The toolkit also includes a short film explaining the lives of siblings and the support they can receive from Sibs, which can be used to accompany the slides or to prompt class discussion.

Sibs Talk lite provides a valuable resource for both schools and siblings at all stages of their school life. It links to school policies and work on wellbeing and resilience, young carers, difference and diversity, anti-bullying and safeguarding and special education support. Perhaps more importantly, it helps siblings feel recognised, acknowledged and supported, promoting long-term resilience and optimism in their lifelong relationships with their siblings. It helps siblings know they are not alone.

Siblings Day April 10, 2024Siblings Day April 10, 2024

Can you help us get these resources to schools?

If you’re a parent, teacher or education professional, we’d love to hear from you and help inform your school about these new resources. If you’ve already tried them in your school, we’d love to hear your feedback. We’re also running workshops and trainings for practitioners.

YoungSibs Information Service

We also hear from many parents looking for help supporting younger siblings at home. YoungSibs is an online information service for siblings aged 7 to 17 and offers a range of resources, including age-appropriate information on disabilities and health conditions such as autism, ADHD, Fragile X Syndrome and learning disabilities. There is lots of information on coping with life with siblings, maintaining good mental health and tips on what siblings can do if they are worried about the future.

Importantly, it also contains information on finding ways to build positive relationships with siblings. Sibs writes monthly blogs for children on relevant topics such as celebrating family events, changing schools or finding out about a new diagnosis. There is also an opportunity for siblings to write to a Sibling Advisor about any particular concerns or issues and receive a personal response from the Sibs team.

Community Support Opportunities

Opportunities for siblings to meet other siblings in a similar position can be a valuable source of support and comfort. Some siblings may join a local sibling support group, while others may receive support from young carers services. Others may meet other siblings through local or national events for families of children with disabilities. Siblings can tell you if there are local groups in your area, or can provide you with information if you want to start a local sibling group.

If you would like more information about Sibs please see us at www.sibs.org.uk or sign up to our regular newsletter here.

See the “If They Knew” report here

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Special Needs Jungle

Special Needs Jungle was founded in 2008 by Tania Tirraoro as a personal SEN blog and is now an award-winning, multi-authored site covering special needs, disabilities, mental health and rare conditions for children and young people from birth to 25 years old.

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