How to Make the NDIS Work
Diane is a Mum of two girls (8 and 11), who both have NDIS plans being Self-Managed by the family. Di is also a Mentor here at Inclusion WA. If anyone knows about the NDIS – it’s her! She shared her insight and advice for participants, parents, providers and anyone interested in creating a more inclusive society.
How does your role at home impact the work you do as a Mentor?
When I Mentor I give people space to tell me what they need. I don’t go in with my own agenda. I support people to self-advocate and direct their own lives – that’s what I love most about Mentoring.
Progress takes time and I really get the small wins as being huge, because I’ve gotten to experience that at home.
I truly believe even if someone appears to have limited capacity, they’re only limited by those around them. I see capacity, not limitations. It’s all about perception. Focusing on what’s possible - not what’s impossible.
What has been your experience with the NDIS?
The NDIS has been great for us – we received the funding we needed for our youngest daughter. We advocate for what we need from services – putting our energy where it can make a difference – and made the most out of the NDIS. I know not everyone has had the same experience we have with the NDIS, but I think it’s fantastic!
What are some challenges you have come up against with NDIS?
Information is Inaccessible
There’s so much information but it’s about knowing where to start, what to look for and what you’re eligible for. There’s no one centralised place you can go to find information that encompasses everything from NDIS, to carers allowance and companion cards. It’s left to word-of-mouth and research. That’s why it’s so important to find people to guide you!
The system favours advocates. I’m naturally a strategic thinker, researcher and networker, so we’ve been able to get what our daughter’s need. But not everyone has the time, knowledge or resources to advocate in the same way. My friend’s child would be eligible for more funding than my daughter, for example, yet they couldn’t advocate like us and ended up with less funding.
Lack of Collaboration
There is a stark lack of collaboration between services – they don’t communicate effectively or cross-refer. It’s really left up to individuals to understand everything, re-lay information accurately and do their own research.
What does it take to Self-Manage your daughter’s funding plans?
A lot of energy and organisation! You need to be very strategic. It can feel like you need a crystal ball – knowing what you need ahead of time. But you do what you can and try not to worry about the rest. You don’t know what you don’t know.
There is so much information out there on the internet. It’s easy enough to access but it’s about knowing where to start. For example, even though I spend hours searching the internet about the NDIS I didn’t know about the price guide until someone told me about it. It’s been such a useful resource but if I wasn’t told I would never have known to look for it. It’s about finding the right people to help guide you through the process.
What could the community do to be more inclusive and supportive of people with disability and their families?
Everyone’s situation is different – Ask how you can help
Everyone’s situation is different and that should be respected. The most helpful thing is giving people the space to tell you what they need – to listen and understand.
My daughter being non-verbal has had a big impact in social situations. At play group the other parents would be talking, their kids playing – the worst thing was being pitied when we just needed understanding. It was so isolating. We were all in therapy!
Listen to understand
What does impact me is when people say things that minimise what we’re going through, such as; “all kids do that”, “lots of kids don’t know how to do that” or “we’re all a bit Autistic”. It’s not the same. We have two children who are significantly impacted by even small changes, which can trigger fight or flight responses and intense reactions that last for hours. What helps is being understood.
Respect that people know what’s best for themselves
We know what does and doesn’t work for us as a family. For example; when we go away on holiday our daughter doesn’t sleep. So we choose to go to only two places – Dunsborough and Melbourne – because they’re familiar. That’s how we manage and it works for us.
Service providers often come in with their own opinions, agenda and ideals, not being flexible. This is where the problem lies – not with the NDIS. The agenda should be the client, working with the family and asking what works for them.
What advice would you give to individuals with disability and their families?
Create your own support network
Find people you feel at home with – a tribe. Those who get the struggles but also understand and celebrate the wins with you. Connecting with people who have been where I am has been one of the best things for me. People who listen and support one another with no judgement. There are community groups on Facebook. Find ones that are right for you and leave the ones that aren’t! I’ve found the best ones are created within existing social networks - so don’t be afraid to start your own.
Know your own needs and communicate honestly
Reflect on what is right for you and your family. What you believe your needs are. If your needs are being met don’t listen to anyone else telling you need extra support or funding. If they’re not then don’t be afraid to say what does and doesn’t work – to ask for what you need.
Take it one step at a time
Many of us can get overwhelmed trying to navigate the NDIS amongst managing family and other responsibilities. It seems complex but it’s not when you drill down – just take it one step at a time.
Let’s work together as a community
What’s really hard in this environment is the focus always seems to be on the bad – on what’s wrong and what can’t be done. There’s definitely a need for that at times – at NDIS meeting or with therapists. But as advocates we have to be able to switch hats and focus on capacity building. If we are going to make progress the focus needs to be on what can be done for each individual to get the most out of life. We all get stressed out. We should be supporting each other, not competing about whose situation is worse or tearing each other down (which can happen especially in online communities).
Let’s work together as a community - celebrating the good and advocating to change what doesn’t work!
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