The following formed an addendum to a submission to the Review of the National Advocacy Framework by Siblings Australia. It addresses some of the issues that come up about using the term ‘young carers’ or ‘carer’ in relation to siblings of children and adults with disability or chronic illness.
This is important to understand in terms of whether this group is being adequately recognised or not, both in terms of their own needs but also whether they are being supported adequately in their role as potential supports/advocates for PWD.
Let me say at the beginning that there are Young Carer programs that do an excellent job of supporting young people who have caring responsibilities. My belief is that it is wonderful if siblings can gain support through any avenue. 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 is not a good policy direction and 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 caring role, and all members can contribute different things to a person with disability.
Initially, 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 much too much responsibility. My first question though is why these children were allowed to continue performing these roles. Certainly all children in a family should be expected to contribute to the family – performing household tasks, helping each other out etc. However, caring for a parent and needing to provide intimate daily living activities for them eg showering, toileting, but also things like major cooking, cleaning and washing, should not be the responsibility of children but, instead, social services. And if a child is missing school due to their caring responsibilities then, again, government should be providing these supports, given the Australian government is a signatory to the Convention on the Rights of the Child. However, the focus for Siblings Australia is on siblings, and so this particular issue needs to be left for others to consider.
Slowly, siblings have been included under the policy umbrella of ‘young carers’, and on the surface this could seem to be a good thing. However there are several reasons why Siblings Australia has concerns about this.
1. If we go down the ‘young carer’ path, we will miss many siblings
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 many family members – it is focused on the carer role, and in order to be eligible for such support, a family member needs to satisfy certain requirements. I have known of some siblings who have not been able to access ‘young carer’ programs because they are not the primary carer (most families with a child with disability have at least one parent who takes on the primary carer role) or, in one case, only one sibling out of two was allowed to attend the program. The education bursaries that are offered to young carers would only rarely be available to siblings as they would not meet the criteria. Some ‘young carer’ services are more flexible, allowing siblings to access support, but some have stricter guidelines, based on the amount of caring they provide. Of course, some siblings are performing significant caring roles, but many others do not play any extra caring role beyond the usual helping out that happens in all families. Even if siblings are not playing a significant caring role they can still contribute much in terms of emotional and social support to a child/adult with disability, and this should be recognised too.
We know that siblings can be at risk regardless of any caring role, and that many of the concerns of siblings are not related to a caring role. In fact, if siblings do provide care, that may be one of the more beneficial aspects of their experience. There is money put into ‘young carer’ programs by the Australian government but none to specific sibling programs. If we continue with this model, over time, many siblings will continue to miss out on support.
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. In this case, one size does not fit all. Siblings should not be included under this policy umbrella.