Most adults don’t have to think about planning or providing support for a brother or sister beyond typical family life, but when a brother or sister has a disability there may be other roles to play beyond that of a sibling.
Some discussion topics for your peer network include:
1. Sibling relationships: Siblings will likely have the longest relationship of any with a person with disability (this includes chronic and mental illnesses). Whether you have a ‘carer’ role or not, you have the potential of contributing much to the social and emotional wellbeing of your brother or sister with disability. For many, being a sibling has been like most sibling relationships – ever changing but, on the whole, mutually satisfying. For others, there have been considerable personal challenges to overcome. Each individual experience will depend on a whole range of factors, including your personality and age, reactions of others around you, the level of social support. It can be complex.
2. Identify what supports your brother or sister has now and their goals for the future: If your brother or sister is eligible for support under the NDIS, you may be able to support them in this process. For example, helping them to identify goals to go in their plan; having a discussion about their current services and what they might like to change or how it could be done better; detailing any informal supports you currently provide; support them to communicate their goals in the NDIS planning process and support them in decision-making if needed. In some cases where a higher level of support is required to prepare and manage the NDIS plan, you might take on the role of a ‘nominee’ for the NDIS.
3. Thinking about and planning for the future: For many siblings managing expectations and determining how much responsibility you take on is a difficult decision to make. You may need to consider what will work for you and your brother or sister with disability. Family members such as other siblings, your significant others, your career and life goals may all be factors in this decision. For some siblings the role of ‘carer’ may already be a ‘primary’ one while others may have a more informal support role—more like a supportive brother or sister. Siblings may be dealing with unresolved feelings of resentment, grief or guilt, or worry about what will happen when parents can no longer provide care for a brother or sister with disability. Remember that you are not alone; many siblings have a mix of feelings.
4. Balance your needs and those of your brother or sister: Each sibling relationship is unique, complex and dynamic, particularly when one has disability. Do not expect your experience to be exactly the same as another sibling’s experience. The type and severity of your brother’s or sister’s disability, your family’s coping abilities and strategies and your own personality and temperament will all play a part. There is no right answer for every situation. Maintaining the sibling role rather than taking on the primary carer role may be your focus. Many people with disability experience higher levels of life satisfaction when they have a close and supportive relationship with a sibling. You too can gain from such a relationship.
5. Assistance if you are your brother’s or sister’s carer: Think about the informal support you currently provide and what you are likely to be able to do in the future. Make sure this is taken into account in the NDIS planning process. See the other Quick Guides on NDIS planning and if you are self-managing NDIS funding with, or for, your brother or sister, see the Quick Guides on self-managing and finding and employing support workers.
6. Try to access peer support: One of the most valuable realisations for any sibling is that they are not alone; that there are others out there who have similar emotions or experienced similar situations. There are many ways you can connect with other siblings, both online and face to face.
Useful links and resources
Siblings Australia website: http://siblingsaustralia.org.au/
Video featuring Siblings Australia adult peer support group: https://vimeo.com/210181126
National Disability Insurance Scheme (NDIS): https://www.ndis.gov.au/understanding/families-and-carers/guardians-and-nominees
NDIS Information for families and carers: https://www.ndis.gov.au/understanding/families-and-carers
Carers Australia has good information about the NDIS and Carers:
https://www.carersaustralia.com.au/information-for-carers/ndis/ndis-and-carers/
Co-authored by Siblings Australia
The information on this page is also available as a downloadable Quick Guide, by clicking below. There are.pdf and word versions.