The Self Advocacy Skills you Need as an NDIS Participant
[Image Description: A person stands facing away from the camera with outstretched arms, a black silhouette in front of a hazy blue sky with clouds.]
One of the key parts of the NDIS is the concept of choice and control. The idea that you have a say in your own NDIS journey, and that you should be treated with respect, and as someone with rights.
You make the choices about the types of services you will access, which providers you’ll use, how your plan is managed, and how you receive important information.
And you have the control to stop a support that isn’t benefiting you, to say who is allowed in your home or to view your NDIS plan, to request more information, or to challenge a decision.
Sometimes exercising our choice and control means standing up and speaking out. It can mean making our voice heard not only when things go wrong, but at every point on the NDIS journey. Because at every step, we know people get a better outcome when they’re informed of the NDIS system they need to operate within, and when they inform others of their specific wants and needs.
But, it’s not always that easy. What happens when you’re not good at advocating for yourself?
Stevie Wills is a performance poet, speaker and writer, with a passion for inclusion and empowerment. She knows the power of words to create social change. Her poetry and blogs speak beautifully and emotionally of her experiences finding her voice and fighting for change for people with disability.
But even someone who can so eloquently express their hopes, Stevie too has had to learn through her lived experiences how to stand up for herself and make sure that people are listening.
Here, Stevie shares with us the three most important things you should keep in mind, to build your own self advocacy skills.
[Image Description: A headshot of Stevie Wills, she is smiling and looking at the camera, wearing a green top.]
1. Know your rights
You have a right to be treated with respect and dignity. You have a right to choose how you want to be supported. You do not owe support staff.
The NDIS Quality And Safeguards Commission works to improve the quality and safety of NDIS supports. Their code of conduct and practice standards set out exactly what you should expect from a service provider, and knowing what your rights are will help you realise when there’s a red flag and when to take action.
You have rights to:
receive person centred supports that respect your freedom of expression, ability to control your own life, and make your own decisions.
be respected in your Individual culture, diversity, values and beliefs
have your dignity and rights to privacy and confidentiality be protected
exercise control, make informed choices, and maximise your independence by saying when support is not needed
be informed about matters in the type of communication that you’re most likely to understand, and have the right to access an advocate for support if you need it
most importantly, to access supports free from violence, abuse, neglect, exploitation or discrimination.
If you feel that a provider is not upholding their responsibilities when it comes to any of your rights, it is always ok to speak up.
The NDIS Quality and Safeguards Commission have created a set of resources to help empower you to exercise your rights and to “Speak Up” with your concerns. Take a look, familiarising yourself with the process is a big step toward doing it yourself: NDIS Commission | Speak Up!
2. Find an ally
If you're not being heard, find an ally. An ally is someone who will either:
seek your perspective so that they can communicate from your perspective,
or, if you want to communicate for yourself, create a platform for you to do so.
It’s always best when you can speak for yourself but that doesn’t mean that people will always listen. Having someone in your corner that can go into bat for you if the need arises can be instrumental in getting your needs across.
As Stevie says, they don’t need to talk on your behalf though, they can be an intermediary and simply help the other party better understand what you are saying. They can also give you guidance, support and advice to help you navigate challenging situations.
An ally could be a:
family member
friend
person in your workplace, class or group activity
service provider
support coordinator or recovery coach
plan manager
advocate from a disability organisation, you can search for one here: Ask Izzy | Disability Advocacy Finder
or even someone you’ve just met, like Stevie found in a fellow passenger on a particularly bad flight.
3. Be prepared to weather the storm of change
I know, I really know that it's easier to stay with the support you have. But if the support is negative in any way, there is excellent support out there. Be prepared to sit with the stress that will come with seeking different support services. The stress is temporary, and you will be better off long-term. Gather what you need to weather the storm.
Just as leaving a negative support can cause the storm to rage, so too can an NDIS plan that doesn’t fit with your needs and goals. It can be stressful to initiate plan reviews, make a complaint, or appeal a decision through the Administrative Appeals Tribunal. But advocating for yourself in this way will lead you to better outcomes down the line.
Don’t settle for anything that doesn’t work for you and always keep in mind that your voice is the most important voice in the conversation of how your life is lived.
Prepare for difficult conversations or meetings by writing down your concerns, questions and the outcomes you hope for, to help you stay focused. To help keep conversations focused on your needs and goals, a good idea is to use “I” statements when communicating your wants and needs.
Self-advocacy is a skill and you have the power to use it for good
Remember, self advocacy is a skill that takes time and practice to develop. Be patient with yourself, celebrate your successes, and don't be afraid to seek help when you need it.
If you’re struggling, start small and begin by speaking up about small things and gradually work your way up to more significant issues. This can help you build confidence and get comfortable with the process.
Keep Stevie’s principles front of mind throughout your NDIS journey, and especially in times of change. Walking this path with self-advocacy leads not only to better supports and services being provided to you, but a greater sense of empowerment, independence, and control within yourself.
Stevie walks this path to build a more inclusive tomorrow. Because the more people with disability speak up and call for better for themselves, they call for better for the whole disability community.
Login to Kinora today and connect with our community full of NDIS participants, knowledgeable coaches and ally’s who want to do their part to make the system better for all.
