Understanding your brother or sister’s disability

Over four million people in Australia live with disability. Many have a sibling they rely on, especially in adulthood.

A person with a disability is someone with physical or mental impairment that substantially limits one or more major life activity. 

When considering disability, we think about whether any reduction or loss in someone’s ability to do things, across all life domains, is because of an impairment.

An impairment is a loss or significant change in at least one aspect of how a person’s body functions, their body structure, or how they think and learn.

The NDIS considers five categories of disability needs when planning support funding

Intellectual

How a person speaks and listens, reads and writes, solves problems, and processes and remembers information

Cognitive

How a person thinks, learns new things, uses judgment to make decisions, and pays attention

Neurological

How a person’s body functions

Sensory

How a person sees or hears

Physical

A person’s ability to move parts of their body

What you can do

Learn as much as you can about disability and disability needs

Learning more about your brother or sister’s disability will help you to understand more about them, their experiences and their needs. You’ll be better able to support them to live their best life, which will help you to have the best sibling relationship possible.

It will also help you to understand the everyday impact and future planning requirements that their disability may have on you, and how it might impact your relationship.

Consider an updated diagnosis

Your brother or sister may have received a specific diagnosis many years ago, as a child. Have you considered that, as diagnostic assessments have developed and evolved over the years, a diagnosis can change?

If it’s a been a long time since your brother or sister received a diagnosis, it’s possible that a current assessment may identify different or further disability. Consider talking to them about seeking an updated diagnosis.

Understand and facilitate supported decision-making for a person with disability

Every person has the right to make their own decisions, but sometimes, we need support. When someone needs help to make decisions, it’s called supported decision-making. And is based on making decisions with someone not for them.

Support with decision-making can come from family, friends, and other peers. Support can also come from service providers or other people, such as advocates. Supported decision making looks different for each person.

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Understanding Disability

CPL’s ‘Understanding Disability’ provides online info about many disabilities. Search by name to learn more about your brother or sister’s disability, including basic facts and common symptoms.

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Easy Read & video

The Council for Intellectual Disability has created information about supported decision-making for people with intellectual disability. It’s called ‘I can make decisions’ and includes a downloadable two-page Easy Read document in pdf format, and a three-minute video.

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Guide to NDIS decision-making

The Victorian Office
for the Public Advocate’s ‘Guide to NDIS decision-making’ and explores when a decision can be made by, with or for an adult with significant cognitive disability.

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Lived experience video

Check out this NDIS
video where Luke from Inclusion Australia talks about supported decision-making
for people with disability.

Establish a Circle of Support for a person with disability

It is important to remember that there are alternatives to seeking formal legal orders (which might include guardianship and administration), such as establishing a Circle of Support to support you and your brother or sister with decision making.

A Circle of Support involves a group of people in your brother or sister’s life, who they know and trust, coming together to support formulating, promoting and achieving the goals of a person with disability. The circle acts as a community to support and provide practical advice, solve problems and generate creative ideas to contribute positively to a person’s life.

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Blog

A Circle of Support for a person with disability can be whatever you make of them.

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Microboards

 

A Microboard is a similar concept to a Circle of Support but is legally incorporated to become a not-for-profit organisation that supports just one person. A Circle of Support often progresses to become a formalised Microboard.

Read more about Microboards at the Microboards Australia website.

Create a personal profile for you and your brother or sister

To ensure you can support your brother or sister to make important life decisions that are right for them, it’s important that you first ensure you understand what they want, what is important to them, and how they see themselves living their life for the foreseeable future. That’s why we’ve created two helpful personal profile documents.

My Personal Profile

You can complete this profile about yourself. It will help you to write down your concerns, plan your life and set goals.

My brother or sister’s personal profile

You can complete this with your brother or sister with disability, this profile is about them. It will help you and your sibling set goals and plan their lives.

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About models of disability: the medical model vs the social model

In the past, when people viewed disability, they often thought of it as a medical problem that needed to be fixed or cured rather than approaching it as another way of experiencing life. The historical way of thinking was not person-centered and didn’t acknowledge the inequities in society that can make life harder for people with disabilities.

We operate from a person-centered approach and aim to remove the social barriers. SibPlan aligns with the social model of disability and will support you and your brother or sister to have an inclusive and accessible experience.

Learn more about supported decision making from Luke’s story:

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