The relationship each sibling has with their brother or sister is unique and shaped through a variety of life experiences and circumstances. It is likely to change over the lifetime, and with the right support can be satisfying and mutually rewarding.
Siblings may play varied roles in the lives of their brothers and sisters with disability. You might support them in everyday activities – ‘informal’ support. Or you might take on more intensive caring responsibilities – ‘primary’ support. Some siblings take on even further responsibility, such as guardianship and management of finances – known as ‘formal support’.
Ultimately, you may play a number of roles in the life of your brother or sister that might not exist in sibling relationships where disability is not a factor. However, that doesn’t mean that your relationship as siblings cannot remain the most important.
The level of support you provide to your brother or sister, and the frequency and duration of that support is unique to you and your life circumstances. Your level of involvement, and the role you play should always be your choice and, if possible, that of your brother or sister, and should be respected by family members and service providers respectively.
We have found that many adult siblings are heavily involved in supporting their brother or sister with disability – a commitment that takes up a large part of the daily or weekly routine link.
For some siblings, however, a supportive relationship is not always possible. Also, some might be 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 you are to carry out these valuable support roles in the lives of your brother or sister with a disability. These roles should always be guided by choice and respect for all involved – not least of all siblings.
The particular role as a sibling you may choose 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
Siblings may be involved in the life of a brother or sister in informal ways. For example, you may:
- Meet up regularly for a meal
- Help with shopping for clothes or groceries
- Attend medical or other appointments
- Assist your brother or sister to attend family get-togethers;
- Provide 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.”
If your brother or sister with disability lives with your parents or other family members, your support may provide some appreciated breaks for parents. Often service providers do not recognise this family role, but it is vitally important.
Siblings might also play a role in supported decision-making. 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 your brother or sister 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.
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. This may include tasks such as making meals, providing personal care or administering medication.
“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. 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. Refer to contact details for each State guardian office that deals with these matters.
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’.
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.
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.
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.