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Ann Mickan from Warwick is mother to Zac, 26, (both pictured) who has a disability. Their family went through the NDIS process and have some great tips for others who are preparing to do the same.
When you’re in your early 20’s and looking ahead nobody imagines a life with a child with profound intellectual or behavioural disabilities.
Zac is now 26 years old and we’ve had to reinvent our lives a couple times already just to get by. With no family or friend network to help or support us, some of our struggles have been painful and terrifying. The reality of life with a child with disabilities can be very isolating and confronting as you gradually lose touch with people you thought would be your friends for life. The introduction of the NDIS has now given us a sense of control over what will happen for him and our family from this time on.
Initially, I was very apprehensive about the process. The possibility of getting it wrong and ending up with less than the little we had was daunting. I was so thankful for the information sessions and the individual time I had with Endeavour Foundation because I was able to get a clear picture in my mind of what I needed to do to be ready. By the time the meeting came around I had everything on paper in front of me and I felt confident I could make a solid case for what would be best for Zac’s future.
The meeting itself went much better than I thought it would. Our planner really listened to everything I had to say. By the end of our two-hour telephone conversation I was confident she had a very clear snapshot of what Zac needed to help him attain a good and fulfilling life. Because I had all my thoughts and plans organised around me before the time of the call, we were able to flow through all the sections and spend time expanding on some different ideas I had. Overall it was a positive experience for me.
Get as much information as possible. Attend every workshop or information session that you can. Pick up every flyer or booklet that you can lay your hands on. Speak to representatives of organisations like Endeavour and other families in similar situations to yourselves. And most importantly ask lots of questions, no matter if you think they are silly.
Do lots of thinking. Think about what’s currently working in the life of the person who is the focus of the plan. Think about what would be the best future for them and what they will need help with to make that future a reality.
Write everything down. Make spreadsheets and timetables showing what days and times they are receiving support now and what would be needed to achieve that future. List out any other types of support they are currently receiving through funding or private purchasing, then make another list of what they really need to fill all the gaps.
Then, write a couple paragraphs describing THEM. Cover the life they live, who they live that life with, what they enjoy doing, what’s important to them, and what sort of life they would like to live in the future. It doesn’t need to be their whole life story - what they are looking for is an insight into the person and their life, what’s working and what’s needed.
Remember that as personalised as this process can be, it’s still about ticking the right boxes. You can’t just say you want ‘everything’ because you have to explain what ‘everything’ is and why your person needs it. Keep it appropriate and reasonable.
Yes, most definitely. Zac’s funding now sees him fully supported and actively engaged five days a week, as well as a fun outing on Saturday. He also has funding for in-home support to help him to ultimately transition to supported accommodation in the future. There is also a provision of funding for him to access specialised behaviour support therapy services to learn coping strategies for when he is highly stressed and anxious.
So far, so good.
As a family unit we can see that the funding that has been allocated to Zac has the potential to change the course of his life, and ours. We’ve always dreamed of Zac living a life that most young people would consider just normal life, but this dream was never feasible on our income. Now, it’s well within his grasp.
As Buzz Lightyear from Toy Story says, “To infinity and beyond!”
A pre-planning booklet to help you to think about the supports you want and need – now and in the future – before meeting with your NDIA planner.
A practical, comprehensive guide to the NDIS, to help people understand the various components of the NDIS and how to access them.
A handy guide of NDIS FAQs and a glossary so you can familiarise yourself with NDIS language before your planning meeting.