The work of Siblings Australia has shown adult siblings may play many and varied roles in the lives of their brothers and sisters with disability. It suggests these roles can be of vital importance, as people with disability may experience higher levels of life satisfaction when they have a close and supportive relationship with a sibling. The sibling, too, can gain much from such a relationship.
The frequency and duration of support from a sibling varies from family to family. For some adult siblings it is a minimal commitment but, for others, it requires extensive involvement, forming a large part of their daily or weekly routines. A 2016 Siblings Australia survey of 340 adult siblings showed many are actively involved in the lives of their brothers and sisters with a disability.
For some siblings, however, a supportive relationship may not always be possible. Also, some are confused and concerned about what their future roles will be with their brother or sister. Some feel they have limited choices.
How do I know how much I am supposed to give? I really wish I knew.
Siblings Australia supports the right of adult siblings to access help for themselves if they are to carry out these valuable support roles in the lives of their brothers or sisters with a disability. An adult sibling’s level of involvement, and the type of role they play should always be the choice of the adult sibling and, if possible, of their brother or sister with a disability, and should be respected by family members and service providers.
The particular roles a sibling chooses will depend on a number of factors including:
- your feelings towards your brother/sister
- your family circumstances,
- your age and the age of your brother/sister
- your personal commitments, including own family, career
- the type of disability your brother or sister has
- quality and nature of the relationship with your brother or sister
- what roles other family members, especially parents, play
- what your brother or sister with disability wants your role to be
- the capacity of your brother or sister to make decisions for themselves
When a person with disability needs support to manage their own legal or financial affairs or to look after their own health, safety or welfare, they are described as having a ‘decision-making disability’. The reasons for this may include intellectual disability, mental health issues, a brain injury or other conditions, impacting on their decision making ability.
See supported decision making for further information OR watch this video
As a general rule, it is preferable for a person with decision-making disability to have the involvement of trusted, supportive and diligent family and/or friends, rather than resorting to formal orders and arrangements. However, there are some situations which call for more formal roles and these are covered in more detail below.
Siblings may be involved in the life of a brother or sister in informal ways. For example, meeting up regularly for a meal; helping with shopping for clothes or groceries; attending medical or other appointments; assisting a brother or sister to attend family get-togethers; or providing transport.
For people with disability who have limited social networks, siblings may provide or facilitate much needed social interaction.
We watch TV, talk, we do the dishes together after dinner. Sometimes we go out for lunch.
When the person with disability lives with parents, the informal support from adult siblings may provide some appreciated breaks for parents. Often service providers do not recognise this family role, but it is important.
As mentioned, siblings might also play a role in supported decision-making LINK. They may remain informed about possibilities and learn about supporting a brother or sister to look at different options. Some agencies have their own ‘nominated person’ or ‘nominee’ forms a sibling can fill in to ensure all staff know you will support your brother or sister with decisions. If the person with disability is being supported by services where they live and the staff understand the need for the family/carers/siblings to be involved, things progress relatively smoothly. It is worth noting if an agency unreasonably refuses to adjust its provision of services to a person with (decision-making) disability, say, by permitting informal arrangements, the agency may be in breach of state and federal disability discrimination laws.
Advocacy, which is defined as speaking on the behalf of, or in support of, another person, is another role often carried out by siblings. There are different types of advocacy – individual, self-advocacy, family advocacy and systemic advocacy.
- Individual advocacy involves siblings speaking up alongside or, if required, for the person with a disability so their rights are respected and they can access the services and supports they need. The first step to advocating for someone is being well informed.
- Self-advocacy involves a person with a disability advocating for themselves. Sometimes siblings will support a brother or sister to self-advocate. They may support them to gain knowledge about their rights and to help them to develop the skills and confidence to discuss their needs. An adult sibling could assist their brother or sister by discussing their rights, needs and aspirations with them or by connecting their brother or sister to an agency, assisting with self-advocacy or to a self-advocacy group. A sibling might also assist a brother or sister to develop supports through the NDIS. See NDIS section LINK
- Family advocacy involves working with the family members of a person with a disability so they are better equipped to take on the role of advocate. Family members are supported to advocate on behalf of the person with a disability.
- Systemic advocacy is aimed at trying to change systems rather than making changes for just individuals or groups. It could involve lobbying to change legislation or government policy, or changing service delivery and policies.
Some siblings take on the role of the main or Primary Support Person for their brother or sister with disability. Sometimes this role is taken on by choice; in other situations, it can seem like there are no other options.
My brother lives with me. I support him like a parent; however I am his older sister.
Siblings who have this role usually live with the person with a disability, or close by, providing regular or daily support. This role can be demanding but at the same time, for some, personally satisfying. If you are in this situation, the NDIS should provide you with considerable support in meeting the needs and goals of your brother or sister. This might come directly through their NDIS Plan but also through mainstream community support programs, especially those of the Information, Linkages and Capacity Building (ILC) arm of the NDIS and your assigned LAC (local area coordinator). This role can be performed in an informal way or there might be more formal arrangements in place, depending on your brother or sister’s disability and their needs.
Sometimes siblings might take on more formal roles (guardianship, power of attorney) in the lives of their brothers or sisters. Some disability service providers may refuse to provide personal information without the authority of the person with disability or a formal financial management order. Organisations have privacy law obligations and also need to ensure clients aren’t being defrauded or exploited. However, formal orders, like those mentioned, may not be necessary. Contact details for each State office that deals with these matters are included below the information.
1. Medical decisions
Under AMA Guidelines, immediate family do not have automatic access to the medical records of patients with a ‘decision-making disability’. Your brother or sister can consent to you receiving information about their health care. If your brother or sister has difficulty in understanding the practitioner’s information or is unable to communicate consent, you can be involved in the decision making under certain circumstances. Most states have a provision for a ‘person responsible’ which means a person who can make decisions on behalf of the person with a ‘decision-making disability’. For example, in NSW, according to a hierarchy it is a guardian, spouse, unpaid carer, relative or friend. Person responsible does not formally apply in ACT and NT. In QLD there is a slightly different arrangement: a ‘statutory health attorney’ (spouse, carer, close adult friend or relative) has a similar role and it is not specifically stated as hierarchical.
In each state, guardianship is determined by a state-specific administrative tribunal. Any order made is based on a determination of a person’s capacity to make decisions and the need to appoint a guardian. Also, if an order is made it will be for the shortest possible time. Previous cases show supported decision-making is strongly encouraged over substitute decision-making. Guardianship is only ordered where all other options are unsuitable. Instead, someone will be appointed to manage finances or medical issues or whatever is needed. Some states (NSW, Tasmania and WA) may refer to a family member or friend who is appointed to this role as a ‘Private Guardian’. Except for the NT, a Guardian has no financial role. In NT a Guardian can be appointed to manage lifestyle and/or financial matters.
3. Financial management
A similar administrative law process to guardianship is used to determine financial administration. However, orders are more commonly made for a substitute decision maker for financial issues than lifestyle issues and these orders are generally for longer periods than for guardianship.
In Queensland, South Australia, and Victoria, this role is called an Administrator, in Tasmania it is called a Financial Administrator, and in Western Australia they call it a Private Administrator. In the ACT, they are called a Manager and in NSW, a Private Manager. In the Northern Territory, a Guardian may have responsibility for financial decisions.
Just because a person is under a guardianship order, it does not necessarily follow they must also be under a financial management/administration order, and vice versa. Some people with a decision-making disability receive some help and support, on an informal basis, to manage their money. A family member, friend, disability advocate, financial counsellor, disability worker or combination of these people may assist a person with decision-making disability to manage their finances. This should be done with the express agreement of the person with decision-making disability and records, accounts and receipts should be kept for all transactions and payments made. For example, a family member might become a joint signatory on the person’s bank account or receive the person’s Disability Support Pension on their behalf if the person cannot manage and requests assistance. Centrelink refers to the family member in this example as a ‘nominee’ for the person with decision-making disability. Similarly, a sibling might become a participant’s ‘nominee’ for their NDIS Plan of supports.
Where informal arrangements break down or a person’s cognitive impairment and money-managing skills decline to the point he or she can no longer be supported in their financial decision-making or where the person’s decisions about their finances are placing them at risk of exploitation, it may be necessary for formal orders to be sought.
Go to State guardian offices for contact details of each State body that deals with these issues