Ways to be heard when the NDIS isn’t working for you
The information on this page is also available as a downloadable Quick Guide, by clicking below. There are.pdf and word versions.
Introduction
Everyone needs to practice self-advocacy. That means speaking .pdfor yourself or for something you believe in. People who are self-advocates can communicate what they are feeling, thinking and what they want or need.
As a self-advocate, you can speak up to describe yourself, to ask a question or to ask for help.
Knowing your rights and responsibilities and making choices about your own life really improves self-esteem and quality of life.
This fact sheet is about how to ask for help yourself. There is another QuickGuide in this section with information about help with NDIS reviews and appeals from Advocacy organisations.
Let’s make it happen
There are many kinds of advocacy that can be used when you are not getting what you need from the NDIS. Check out the QuickGuide: Improve Accessibility and Inclusivity for ideas on how Peer Groups can help.
Citizen advocacy: matches people with disability with volunteers.
Peer advocacy: matches people with disability or carers with other people with disability or carers to help them advocate.
Family advocacy: helps parents and family members advocate on behalf of the person with disability for a particular issue.
Individual advocacy: upholds the rights of individual people with disability by working on discrimination, abuse and neglect.
Legal advocacy: upholds the rights and interests of individual people with disability by addressing the legal aspects of discrimination, abuse and neglect.
Self-advocacy: supports people with disability to advocate for themselves, or as a group.
Systemic advocacy: seeks to remove barriers and address discrimination to ensure the rights of people with disability.
Top Ten Tips for Advocates with the NDIS
- Be an advocate not an adversary – that means stand strong, but don’t be an enemy.
- Address issues early, don’t let things escalate – the longer you leave an issue, the longer it can take to fix it.
- Know your audience. Everyone has a unique perspective and you need to understand the perspective of the person you are dealing with. This means that it’s a good idea to imagine how the other person is feeling, and why they say what they say.
- Give this person credit and praise for every great idea (even if it started out as yours).
- Be ready, willing and able to provide as much information as is necessary to follow through with the idea or request – be helpful with extra information if it is needed.
- Put important requests in writing (always keep a copy!) and provide a timeline, as well as evidence to support your request. Always keep a log of every contact you make with the NDIS.
- Allow a reasonable time for requests to be processed, and then follow up with phone calls, letters or email. If you’re able to, a trip to your local office may be useful.
Bring a friend, family member or fellow advocate to planning meetings and appointments when you need someone to take notes, bear witness or just be there for emotional support.
- Before a meeting or appointment, request an agenda, or list of things to talk about, as well as the questions you need to ask. Also, plan your responses to any questions or comments that you can anticipate. It’s easier to stay calm if you are not caught off guard.
- If you get what you want (which won’t always happen even if you are a great advocate) express gratitude (say thanks!). This is true even if the person should have done it without your intervention. Everyone responds to appreciation.
- For a handbook about human rights for people with intellectual disability, check out this guide: http://www.hpod.org.pdf/we-have-human-rights.pdf
To find professional advocacy support, this page links to all the advocacy programs around Australia which are free for people with disability to use: https://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability/national-disability-advocacy-program-ndap
Co-authored by: The Growing Space