Caregiving role

The siblings of children with disabilities may take on a caring role. For younger children especially, it may be something as simple as a sibling cheering up their brother or sister in hospital, or distracting them while they have therapy or a medical procedure. As they get older they might look after their sibling to give their parents respite, playing with them at home or taking them out to the park or on a day trip. They might take a bigger role in their day to day care, helping them get dressed, taking them into school, watching out for them during the school day, even feeding them.

Two blue characters. They look young. One is standing and the other one is in a wheelchair. They have one hand curled up to his shoulder. His head is supported by a head rest, and his feet are on support plate. He is smiling at another child who is standing, reaching out to them.

An empowering role

Some siblings have a role in identifying issues their sibling may face. 

They might identify behavioural changes, such as; 

  • Communication – their speech, language, how they are responding online or in writing.   
  • Eating – what or how they eat 
  • Movement  – how someone walks, runs, or throws a ball. They might spot a new tic or stutter.

It can put siblings in a position of power and strength as they understand how to more effectively communicate with their siblings with special needs/disabilities (they might also know how to irritate and annoy the sibling more effectively than others) than the primary carers. 

Point to consider: the sibling’s role should be taken into consideration when developing care plans, as they will have a unique and important perspective. They will have knowledge that others may not be aware of and this information should form part of the care plan.

In Simeon and Emmy’s case, Simeon always knew how to calm his little sister down when she was stressed. His parents would ask him to help when she was particularly anxious or unhappy.  When he became older he used his skill to tease her instead!!

Siblings might have a special relationship with their less able siblings. Their caring role can mean they are and feel very important and needed.  

The future

two blue characters, a boy and a girl looking at each other and smiling.

A sibling’s caring role may impact on their choices for the future and the sense of responsibility that siblings take on can increase with age, as there are worries about their sibling’s future and their parents’ ability to care for them as they get older. This uncertain future is scary and difficult to process. It can mean that the sibling feels torn between wanting their own life and knowing that their disabled brother or sister needs them. For some siblings this is a natural role that they are happy to take on. Others may become resentful at what they consider to be a burden and an unwanted intrusion on their lives.

It is not uncommon for siblings to follow careers in the medical, caring or special educational needs fields. Many are very aware for the need for change and want to ensure a better future for their brother or sister. They feel the best way to do that is to get involved themselves.

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