This blog addresses some of the issues that come up in using the term ‘young carers’, or ‘carer’ in relation to siblings of children and adults with disability or chronic illness.
Is this an appropriate terminology to use?
Are siblings as a group being adequately recognised, both in terms of their own needs but also whether they are being supported adequately in their role as potential supports/advocates for people with disability?
It is crucial to acknowledge first, that Young Carer programs do an excellent job of supporting young people who have significant caring responsibilities. Certainly, for some siblings the term ‘young carer’ gives validity to the role they play supporting their brother or sister with disability. Some young people wear it with pride.
However, for the majority of siblings this policy direction does not recognise siblings nor does it meet their needs. It is preferable to use a family approach to disability and to acknowledge that all members of a family are affected when one member has a disability, regardless of any caregiving role, and all members can contribute different things to a person with disability.
In the beginning Young Carers were identified as children who had caring responsibility for a parent – usually a single parent family where there was not another adult to provide the care. It was a hidden problem, and it was encouraging that people started to recognise these young people who were playing a primary carer role and who had way too much responsibility. However, using a Young Carer model for children, rather than social services providing these supports, is questionable especially when it involves intimate daily living activities for a parent e.g., showering, toileting, but also things like cooking, cleaning and washing. And if a child is missing school due to their caring responsibilities, surely this is an issue for the Australian government, as a signatory to the Convention on the Rights of the Child. However, I will leave that question for others to consider.
It has become an issue for Siblings Australia because this particular policy umbrella has broadened to include siblings of children/adults with disability, and whilst for adult siblings, the term ‘carer’ might be more acceptable, there are still problems with this terminology.
What are the problems with using ‘young carer’ terminology for siblings?
1. If we go down the ‘young carer’ path we will miss the support needs of many siblings.
Of course some siblings are providing a significant caregiving role, especially in single parent families, and for many this caring role might be very important to them. They may love and care about their brother or sister and do all they can to make his or her life easier. Others may struggle with the caregiving role, and can certainly benefit from ‘young carer’ programs.
Regardless of the caregiving role and, even if siblings don’t do more than the normal contributions expected in families, there may be other challenges, which can lead to a range of emotions including anxiety, confusion, sadness, guilt.
A little four-year-old with an older brother with a disability that involves difficult, even aggressive behaviour may not provide any care but is certainly in need of support. A ‘carer’ model overlooks certain family members – it is focused on the caregiving role, and to be eligible for such support, a family member needs to satisfy certain requirements. This little 4-year-old is unlikely to be included.
So, whilst young carer programs are providing a very useful service for many young people, siblings should have their own policy and programs that are geared to their particular needs. This would ensure that the support needs of all siblings would be more effectively recognised and addressed.
2. The differences in sibling and ‘young carer’ experiences
Whilst there is some overlap, the experience of providing care to a parent and that of growing up next to a brother or sister with significant additional needs can be quite different.
A sibling might be quite confused by what is happening around them, especially if there are significant medical or behavioural issues. Their identity might be affected, they may grow up feeling less important than the child with disability which can have huge impacts on self-worth. There can be enormous grief and guilt about their brother or sister, growing up next to them, and realising that the child with disability is not able to do many of the things a sibling can do – a kind of ‘survivor guilt’. There may be a lot of stress at home which can lead to anxiety and, in the community, other people’s reactions can add to the stress.
Many siblings take on a lot of internal responsibility for the whole family. They might worry about parents, alongside their brother or sister and can worry about the future in terms of what might happen if mum and/or dad is no longer able to provide care. The responsibility can carry over a lifetime, and affect the sibling’s own life decisions e.g., should they move away to pursue career options, will they find a partner to share the responsibility, should they have children themselves?
Children who provide care to a parent may have some of the same issues, but many will be quite different. There may be more practical issues for these children. They may need more support to manage their education and stay involved in the community. Of course, siblings can also need support for these more practical issues, but it is often the psychological issues that predominate. Siblings Australia research has explored further the lifelong and complex challenges and impacts for siblings.
3. Identify Issues
There are identity issues related to a ‘carer’ or ‘young carer’ model. Even parents don’t always like being referred to as ‘carers’ – they want first to be parents. Such terms can add to the sense of difference that many families with disability feel. For some siblings, such a label can add to their unhealthy sense of responsibility. Many siblings grow up as the ‘good child’, the ‘helper’, or ‘giver’, which can lead to problems, including with relationships as adults.
A whole chapter, The Parentification of Siblings of Children with Disability or Chronic Disease in the book Burdened Children (Lamorey, 1999) addresses this in detail. Certainly, siblings can gain much from contributing to the family. However, the increasing use of the label ‘young carer’ for children who may have increased responsibility, can add to their narrow view of themselves as a helper or carer for others, subjugating their own needs in the process.
Within various consultations by Siblings Australia, adult siblings say they would prefer to access support via sibling support services (by siblings for siblings) rather than ‘carer’ services.
4. The Sibling Relationship
Siblings can play a crucial role in the emotional and social wellbeing, social inclusion and safety of a brother or sister with disability. The relationship can be mutually satisfying; much like the sibling relationships of those without disability. Other siblings do not remain involved. For some, the expectation of being a ‘carer’ becomes too much and they move away from their family.
One father who had attended a consultation with other parents of an adult child with disability, relayed that all 17 parents who attended had other adult children (siblings) who had moved interstate. Of course, there could be various reasons why this was so, but it seemed a high percentage. Certainly, through our research we know that for many the expectations on them become too much.
In the disability support sector, there needs to be a greater emphasis on supporting family relationships. Siblings, in particular, can have a major influence on the development of the child with disability through play, mentoring or modelling. If this relationship is nurtured from a young age there can be many benefits over a lifetime.
Within current services, there is more emphasis on strengthening relationships outside the family than within. These family ties can become strained if not supported in meaningful ways. If the goal is to strengthen whole families, and ensure the capacity of ‘informal supports’, we need to focus on the whole family from the time of diagnosis. Family-centred care needs to include resilience building for the whole family through its mental health support services.
5. Dignity and Stigma issues
Finally, it is important to consider the impact of a ‘carer’ model on those with disability. This model sets up a power differential and does not consider dignity issues for people with disability.
Does a 12-year-old boy want his 10-year-old sister to be known as his ‘carer’? The use of this term isolates him further from other young people in the community and can add to the sense of being a ‘burden’. Families of children with disability want to take part in the community, just like other families. What is needed is a ‘family support’ model that is more enabling and inclusive, not more isolatin
