“I just worry…” Supporting siblings of disabled children through their own challenges

with Clare Kassa, CEO Sibs charity

There are over half a million siblings of disabled children and young people in the UK. 5.1% of children under 16 are siblings of disabled children. #NationalSiblingsDay2024 aims to highlight the challenges experienced by these young people who often help care for their disabled sibling. They can find school, and life in general, difficult, especially if they’re routinely involved in supporting their brother or sister. They can also feel their own needs are overlooked or seem less of a priority than those of their sibling who needs a lot of support, even though they may also have some level of additional needs themselves.

The charity, Sibs, has published a report this week based on over 200 siblings aged 5-16. It found:

  • 66% of children had told a teacher about their sibling situation
  • 75% had told a friend or friends about their disabled brother or sister
  • 74% didn’t receive any help from school to support them as a sibling
  • 43% said school didn’t understand what it is like for them as a sibling
  • 34% had difficulty getting homework done because of their situation
  • 30% said they were tired because they hadn’t managed to have enough sleep
  • 19% reported being being late for school as a result of their siblings needs

Even if they don’t provide care, they still have fewer choices and opportunities than their peers and can experience problems with wellbeing and education. Some reported missing school because they had to go with their family to their sibling's medical appointments at a specialist centre a long distance away.

Sibs charity does great work in this area, supporting sisters and brothers. Their CEO, Clare Kassa has written for us about their work to support young carers of disabled siblings.

How we support the siblings of children with disabilities by Clare Kassa, Sibs

Siblings growing up with a disabled brother or sister often say no one knows what life is like for them. Here at Sibs, we know siblings can find school a challenging place to be for lots of reasons.

They may experience tiredness due to sleep difficulties if they share a bedroom with a brother or sister. They may be routinely late due to brothers or sisters being dropped off at specialist placements first. Siblings may struggle to complete homework and may arrive at school without the right equipment or with no packed lunch due to busy and stretched households. 

They may be providing significant care to brothers or sisters and supporting parents too. 

Schools can support siblings

Despite schools being stretched by staff shortages and lack of resources, many are working with students for whom school is tough because of their sibling experiences. We hear regularly from schools wanting to support siblings but aren’t quite sure where to start.

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

Sibs Talk for primary schools

For primary school-aged children, Sibs Talk Lite is a free, condensed version of our Key Stage 2 intervention, Sibs Talk. It consists of a Story Pack containing four short stories, questions, and prompts to be used as a basis for circle time discussions and PSHE lessons.

The stories cover issues such as living with a brother or sister who has a serious medical need, managing friendships in school, why life is hard at school and living in a busy and stressful house. It also includes a short video to help siblings understand what being a sibling means. Teacher guidance notes are provided along with the new resources to help schools open up conversations in circle time and offer small group work opportunities, as well as larger group activities. 

The activities in the booklet can be delivered by all levels of school staff. They aim to normalise the experiences that siblings have growing up in their families, acknowledge the feelings that siblings have about their lives, teach siblings coping strategies for dealing with difficult situations, and enable schools to make positive changes that enhance siblings’ school life. 

Sibs Talk for secondary schools

For secondary school aged children, Sibs Talk Lite provides a teacher toolkit consisting of a set of Teen Talk worksheets for PSHE lessons in young carer groups or 1:1 support. The worksheets help siblings consider what’s hard for them in 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 students with a disabled brother or sister. The toolkit also includes a short film explaining sibling life and the help available from Sibs, to be used alongside the slides or to prompt class discussion.  

Sibs Talk lite provides a valuable resource both for schools and siblings at all stages of their school career. It links with school policies and initiatives on well-being and resilience, young carers, difference and diversity, anti-bullying and safeguarding, and SEND support. Possibly more importantly, it helps siblings feel seen, acknowledged, and supported, promoting long-term resilience and optimism for their lifelong relationship with their brothers and sisters. It helps siblings to know that they are not alone.

National Siblings Day 10 April 2024

Can you help pass on these resources to a school?

If you are a parent, teacher, or education professional, we would very much appreciate your help in letting schools know about these new resources. If you’ve already tried them out in your school we’d love to have your feedback. We also run workshops and training for practitioners.

YoungSibs information service

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

Importantly, there is also information about finding ways to develop positive relationships with their brothers and sisters. Sibs also writes monthly blogs for children on relevant topics such as celebrating family occasions, changing schools or learning about new diagnoses. There is also the opportunity for siblings to write to a sibling advisor with any specific worries or problems, receiving a personalised response from the Sibs Team. 

Local support opportunities 

Opportunities for siblings to meet others in a similar position is a valuable source of support and comfort. Some siblings attend local sibling support groups while other children receive support from young carer services. Some children may be able to meet other siblings through local and national events for families of disabled children. Sibs can let you know if there is a local group in your area or help with information if you would like to set up a local sibling group

If you would like further information about Sibs check out our information at www.sibs.org.uk or sign up to our regular newsletter here.

Find the “if only they knew” report here

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