Adult Siblings

 

The sibling relationship is often the longest of a person’s life, but adult siblings often feel disconnected from service providers who do not acknowledge the primacy of the sibling relationship.

Engaged and connected siblings can ensure that people with disabilities have effective safeguarding and quality of life through sustained, peer relationships with those who’ve known them longest.

As their relationships change and parents age, the needs of adult siblings and their role can evolve into being the primary carer for their brother or sister. Their natural relationship, however, as siblings, needs to be preserved.

Section 1: The potential impact on siblings

Adult siblings may require support to deal with any emotional legacy of growing up with a sibling with disability. Some have grown up with very positive experiences, and others have struggled with a range of difficult emotions. Many siblings report they have not had any opportunity to express or understand their experiences in childhood as they may not have been provided the support to appropriately do so.

As siblings age they might find they want, or are expected, to take on a greater caregiving role with their brother or sister. Adult siblings report that they might need to juggle or negotiate a range of issues related to their brother or sister with disability including accommodation, finances, health, employment, or recreation. Family communications around these transitions can be uncomfortable, as they include thinking about reduced parent capacity to support the person with disability and family expectations related to how that might be managed may vary. In addition to these issues, adult siblings may also have responsibilities with ageing parents and their own families. This caregiving role may be either direct or indirect and, if a sudden change, might happen with little knowledge of what support services are in place or neededREF.

Section 2: A case Study

Lucy is 38 and living in regional NSW. Her older brother Tom who is 40 this year, and has autism, is living in Sydney with their parents.

With the support of her parents, Lucy graduated from high school, went to university and pursued a career. The family had accessed appropriate support from when the children were little, which meant the family were very mindful of each other’s needs. Lucy’s parents ensured she enjoyed her independence and supported her travelling in her twenties.  She has since moved to Batemans Bay in south NSW (3 hours from Sydney), where she has a young family of her own. From a young age, Lucy and Tom’s parents have tried to ensure that Lucy does not take on the direct care needs of Tom.

On reflection as an adult, Lucy appreciates the well-meaning intent of her parents, but she would like to be more involved in her brother’s life and support her parents when she can.

Through the NDIS, Tom has support workers who attend to his care needs and also take him out for social connection. This is helpful because Lucy and Tom’s parents have stopped feeling comfortable taking Tom out of the house as they feel his mannerisms impact on other people. Lucy is wanting to offer some support and be able to come up and stay at the family home to understand how she can play a role in Tom’s life as a sister however this is the first time in their lives this convrsation has unfolded.

Lucy is also concerned that her parents are now in their early 70s. Her mum is quite unwell in terms of chronic aches and pains. For the first time recently, Lucy had a conversation with her parents about what the plans are for when they are no longer here. Her parents discussed the number of services they have involved and the regular meetings to plan Tom’s care and Lucy was unaware of the extent of information and planning that goes into supporting Tom. Lucy asked her parents if the services knew about Lucy and her mum informed her that they had never asked as it doesn’t seem relevant to talk about Tom having a sister.

Lucy hasn’t spoken about this with anyone before, as her friends don’t have the same experiences and she doesn’t know any adult siblings. Lucy wished there was an option to have a chat with someone else who ‘gets it’ but feels like there really is nothing out there to help her navigate this. Lucy wished she was acknowledged as a key member of the family and feels left out in the family planning where it could be discussed what role she wants to play in Tom’s life and what Tom wants also.

Lucy wants to know who she can talk to, to get information about the service system, especially the NDIS and the complexities of that, including:

  • Legal issues
  • Accommodation issues
  • Financial issues
  • Employment for Tom
  • Recreation
  • Circles of support and building up a network for both her and Tom

Section 3: How being SibAware can help

Whilst the actual activities to support adult siblings will be different from childen, the same principles apply when using a SibAware™ approach, e.g., looking at the whole family, providing support to siblings for their own health and wellbeing, focusing on the relationship first but also recognising the roles that siblings might play as parents age, how siblings connect with others in the community who might support them and, finally, how siblings might be assisted to connect with the community alongside their brother or sister with disability.

Adult siblings report to Siblings Australia that the system does not often recognise their role or their unique knowledge and understanding about their brother/ sister with disabilityREF.

The sibling relationship is often the longest of all relationships in our lifetime. Professionals will not be in the life of a person living with disability throughout their lifetime like an adult sibling might be. Within Australia’s ageing population it is adult siblings who represent the next generation of support people and/or advocates for people living with disability. The relationship should come first, however. A strong sibling relationship will bring huge benefits regardless of any caregiver role the sibling might play.

Formal planning for the future and the open discussion of expectations on siblings has been reported as uncommon in familiesREF. These can be difficult discussions to have. Sometimes the expectations of siblings (both their own contributions and the goals for the person with disability) can be quite different from parents and primary caregivers. It can be particularly fraught when the person with disability has limited capacity to contribute to these discussions.

Providers and practitioners can play a big role in supporting families to plan for the transition of responsibilities and supports from ageing parents to adult siblings where adult siblings are willing and able to take this on. The focus should be on the sibling developing a ‘good life’ for themselves, whilst contributing to a ‘good life’ for the person with disability, rather than siblings replacing a parent role or becoming a primary carer. Responsibilities and supports could include financial, residential, emotional, leisure, practical or advocacy matters.

It is equally important, however, for governments and providers not to assume that siblings will take over as the primary carer of a person living with disability. In most cases, siblings want to play the role of a supportive brother or sister, not a ‘carer’. People living with disability often prefer this too. The sibling relationship is likely to be more mutually satisfying and affirming if they can be engaged as siblings, rather than carer/caree.

Service providers can recognize and show respect to adult siblings by acknowledging:

  • The importance of the support, care and companionship that many adult siblings provide to their brothers or sisters.

  • The importance of the sibling ‘relationship’ regardless of any caregiving role the sibling might play.

  • The varying roles that adult siblings play in the lives of their brothers or sisters, that there needs to be choice in the roles they play, and this may change as circumstances change.

  • Not all siblings will be willing or able to accept high levels of commitment, and siblings should not be expected to ‘take over’ from parents.

  • Siblings are ‘holders of information’ who have a unique view of their brother or sister. They may like to contribute to ‘Personal Profiles’ or ‘Life Journals’ for their brother or sister.

  • Siblings can be powerful advocates for people living with disability.

  • Adult siblings may need support to manage left over feelings related to their childhood experiences such as grief, guilt, pride, embarrassment, or confusion.

  • Siblings benefit from connection with other siblings – no-one understands a sibling like another sibling.

  • All sibling pairs have unique relationships which reflect levels of closeness in the family of origin, childhood experiences, personality traits, cultural issues and personal resources.

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