Siblings or Carers?

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.

Adult Siblings – on Lateline

Adult siblings are still overlooked in national policy and programs.

You may have seen the recent segment on Lateline about adult siblings of people with disability. It gave some insight into the experience of three sisters, me included, of someone with disability. I have been talking about my experience for many years now, through books, workshops, radio and TV. I am very used to it but would rather not have to do it over and over. However, I have several messages I am continually trying to get out there and so this seemed like an ideal opportunity – THEY asked me to contribute instead of me seeking media coverage, and it was a well-respected current affairs program with definite political focus. And the deal always includes some personal perspective.

Our main aim with this piece was to raise awareness of the challenges for siblings, from childhood through to adulthood. I think we did that, in a limited way. It certainly didn’t cover the full gamut of sib experience, but hopefully it helped people understand a little more.

However, I had another agenda, that didn’t really get any attention – unfortunately most of what we each said in our individual interviews was edited out so I am following up with this blog to fill in some of the gaps.

The reality is that ALL family members are affected when one has a disability. Some take mainly positive things from their experience; others can be traumatised. Many develop their own mental health problems. I wanted to talk about what could and should be done to support siblings, not just for their own benefit but for the benefit of their brother or sister with disability. Siblings will have the longest relationship of anyone with the person with disability. They can play a crucial role in the social and emotional wellbeing of the person with disability, regardless of any direct caring role they may or may not play. Regrettably, governments and the community still don’t recognise the contributions of siblings and their needs over a lifetime.

The NDIS has repeatedly highlighted the importance of developing and strengthening ‘informal supports’. However, there is little interest in the different roles that siblings might play, and why some move away from their family and others stay involved. What are the barriers and enablers of siblings remaining involved? I fail to see how anyone can have an interest in people with disability and NOT have an interest in siblings. Many people with disability, especially those with intellectual disability, become isolated as time goes on. It seems a huge tragedy that many siblings move away from the family because the stress is too great and they have never been given support to manage their feelings and experiences.

Siblings are rarely given a voice. And when they do it is very difficult to give the full reality. They are not good self-advocates. They may have been told all their lives that they should feel ‘lucky’ that they don’t have a disability. They can feel guilty when talking of their own needs when the needs of their brother or sister can seem so much greater. It can feel disloyal to parents and the person with disability to talk about their own challenges. And certainly there are plenty of people quick to jump in, when sibs do start to open up, with the response that they are just having a ‘pity party’. There is little active listening.

Of course, siblings who had a more positive experience find it much easier to express themselves but all siblings must be given a voice to tell it like it is – without the sense that they are whingeing or being disloyal. Most want a good life for their brother or sister, but they need help to be good advocates for both their brother or sister and themselves.

They need help to connect with others who understand. Every sibling has a very unique experience, which depends on a myriad of factors. As I always say, “if you have met one sibling you have met one sibling”. However, there is always a huge connection when siblings meet; an unspoken understanding, no matter the differences. No-one understands a sibling like another sibling. Peer support for siblings is a crucial part of any support approach. And it needs to start early and continue over the lifespan.

Ultimately we need a national initiative, like Siblings Australia, to ensure best practice approaches in sibling support, to co-ordinate and encourage collaboration between sibling programs. It is a disgrace that Siblings Australia, the only national organisation to focus on siblings cannot get any support from government, in spite of a national and international reputation for its work. Siblings are nowhere in government policy or programs and they should be. We are told siblings can access carer or mainstream services, which shows a complete lack of understanding. Certainly some siblings end up taking on a more direct caring role but they have needs regardless of any caring role they play. And their needs can be quite different to other family carers. They need sib-focused services. Equally disgraceful is the view that siblings can access mainstream services. No, they need specialised services from people who have the relevant training and understanding. Some mainstream services have put out questionable information and others have responded poorly to sibling needs.

Most siblings love and care deeply about their brothers and sisters and want a good life for them. But they need their own support. There must be some national conversation around where and how siblings fit, both in policy and programs.