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.

Is this a ‘Pity Party’?

The following was written by a parent of a person with disability on a social media discussion group re disability.

I have heard this garbage of the ‘poor siblings’ and how hard they have it several times in the past and my response will remain the same: What is so hard about it? What is hard is for anyone to have such self-centred siblings who are so focussed on their own little pity party about their ‘hard’ life! Yes children (Persons under 18 years of age) who are siblings of a child with disabilities should have support but…..

I hear this type of sentiment over and over and it saddens me for so many reasons.

Siblings don’t want a ‘pity party’ but they do want some recognition that aspects of their childhood may have been stressful. And that the stresses do not stop at 18 years of age. It might be useful to read some of the research done by Siblings Australia in recent years.

And it isn’t just Siblings Australia that is highlighting the needs of siblings. Some time ago the Australian Institute for Family Studies wrote a research report on the wellbeing of carers of children with disability. They found that they had the lowest wellbeing of anyone in the community and that they had higher rates of depression. They also found that the other children (ie siblings) had higher rates of depression. Certainly our experience with families reinforces that.

The Trauma & Grief Network: Supporting Families is part of the Australian Child & Adolescent Trauma, Loss & Grief Network, based at the Australian National University. It identifies siblings as being one group to experience adversity in Australia. The Royal Australian and New Zealand College of Psychiatry produced a Position Statement and Issues Paper, highlighting the risks for siblings and calling for their support. As have other notable agencies in Australia. And more broadly, there is recognition of siblings via major programs in both the US and UK, and smaller ones in other countries. There is no mention of a ‘pity party’.

No-one reacts when parents talk about being stressed or worn down. When a parent writes on social media that caring can eventually become one of the most physically exhausting, mentally stressful and emotionally draining unpaid circumstance to be in, no-one thinks it is a ‘pity party’ and, indeed, if anyone suggested that it was, then it would be regarded as offensive. But, at the same time, there is little or no acknowledgement of the wider impacts on siblings.

There is much evidence too that the rate of separation/divorce in families with a child with disability is higher than in other families. Why is that so? Because managing a child with disability, especially if it involves difficult or demanding behavior, or ongoing medical crises, can be taxing. It involves stress. That doesn’t mean that parents and siblings don’t love and care about the child with disability – most do very deeply – but we cannot ignore the fact that many of these families experience stress.

Now, certainly, the NDIS is likely to bring huge benefits to families when services become available, but few of them are 24 hour services, and the stresses do not have a timeline. The argument that the NDIS will stop these stresses simplifies family relationships way too much.

In my own case, my sister for many years would be up at night restless and crying. She attended a wonderful school during the day but at home she required a lot of assistance with eating, washing, dressing etc. If we had had an NDIS there might be some services to help with that, but that was the easy part. Her seizures scared us all and her behaviour could be difficult and often stretched way into the night. There would be some bed swapping to enable my dad and I to get some sleep in order to function at work and school but many nights we remained disturbed. My mother had chronic sleep deprivation. We were a very close loving family and my sister was a dearly loved part of that, but were we stressed and anxious? You bet.

I think people forget that young siblings are children dealing with the various stresses, with the emotional and intellectual capacity of CHILDREN. Of course some families are not so stressful but, many are. Added to the stresses involved in the care and behaviour of the child with disability there may be other compounding factors: a depressed parent, divorced parents, a poor social network, low financial stability etc.

There is a lot of very strong research linking chronic stress in childhood to a constellation of chronic conditions in adulthood – depression, anxiety, physical problems. Neuroscience tells us that the stress we face when young catches up with us, altering our bodies, our cells, even our DNA. It is not so easy to shake off the emotions of childhood as we move into adulthood.

As siblings become older the issues change and they can be intensely worried about the future for their brother or sister and themselves. They need to be included in discussions about future planning and given respect when deciding what roles they will play in the life of their brother or sister. For many, they are given no choice. Whilst some parents respect siblings and understand the need for them to have a choice, other parents make it very clear that they are expected to ‘take over’. Some parents fail to make plans and, when parents are no longer able to provide care, the sibling(s) is left with the mess of trying to navigate a service system that often doesn’t respond. Adult siblings on our social media sites regularly talk about their concerns for their brother or sister, wanting them to have a good life, but feeling overwhelmed by the complexity and limits of the system. In some cases the sibling feels they have no choice but to take the person with disability into their own home. And for many this involves giving up their own goals and aspirations in relation to career and creating their own family. Some do this very willingly; others understandably struggle.

There are carer programs but these are not always suitable for siblings – they need support from others who tread the same path, that is, other siblings. There are all sorts of advocacy and support agencies for parents but nothing for siblings. The only organisation in Australia to focus on siblings, Siblings Australia, cannot get any funding, in spite of a national and international reputation for its work.

There is much discussion about ‘voice’, ‘choice and control’ and ‘rights’ for people with disability, as there should be. But we cannot do that without considering, voice, choice, control and rights for other members of the family.

The NDIS views ‘informal supports’ as very important. Siblings have the longest relationship of any with the person with disability; longer than parents, special educators and the like. Surely it makes good sense to try to hear more from siblings, not less, to give them a voice, in order to find out how we can ensure that siblings remain in the life of the person with disability; how we can improve these informal supports, not ignore them. The tragedy for me is that some siblings move right away as the complex stresses in their family are too much. It is too simplistic to think of these siblings as being selfish when we do not know what their childhood experiences have been. What are the barriers to siblings staying involved? What are the enhancers? What do they need in childhood to strengthen the relationship with the person with disability? What do they need in adulthood to assist them in creating a good life for their brother or sister and themselves? The more we can do to support siblings over their lifetime the more likely there will be benefits for them and the person with disability in the longer term. (I am NOT assuming support should come from the NDIS but it DOES need to come from somewhere.)

Of course most siblings are very aware of the needs of their brother or sister with disability being so much more than theirs and grow up with a mix of feelings – love and protection, but also grief and guilt. They are often told from a young age that they shouldn’t complain, that they are the ‘lucky one’. Any child who cannot express their emotions, and in fact is given the message to hide them, is at risk for longer term mental health problems as discussed earlier.

Telling siblings when they try to talk about their concerns that they are having a ‘pity party’ shuts down any open conversation. It is also extremely disrespectful, dismissive and in the long term detrimental to siblings and people with disability.

I do wonder why some parents (and others) are so resistant to the idea that it may not have been a ‘bed of roses’ for siblings. Is it guilt? Is it denial? Maybe their family situation is different to others? Are they just too stretched emotionally to be aware that their ‘other’ children have struggled too? Do they not understand that they have had people to talk to – a partner (if applicable), other parents – and how important that is? Parents may not be able to remove the stresses for siblings but listening, acknowledging, supporting each other and finding outside sources of support is the key to stronger families.

I urge you to truly listen to siblings; acknowledge their experience, show some compassion for the little children that they are or were, trying to make sense of what was happening around them, and for the longer term outcomes that listening and learning might bring.

I look forward to hearing your thoughts.