Why I'm cheerful about the NDIS


Personal Photo Tony Jones co Chair CESPHN Disability Network resized 01

Letter from Tony Jones, Co-Chair of CESPHN's Disability Network.

Tony believes there is much to be positive about regarding the National Disability Insurance Scheme.


Context is everything in how I understand, navigate and interact within the NDIS space. I have worked in disability policy and advocacy for a significant period of time and on a personal level it frames my life because I have a significant spinal cord injury. So, I have a vested interest in wanting the NDIS to be an exemplar in how it supports people with disability.

Despite some trepidation and anxiety – framed by significant negative media coverage of horrible experiences by some participants – on the whole, my take on the NDIS has been fairly smooth and positive. I have very recently taken hold of my second plan – having received my first plan in August 2017 – and it is about as perfect a plan as can be in all areas of funding. I would like to think that I am a great self-advocate and that this played no small part in this outcome. But that would not be a fully accurate assessment of the processes involved in getting an NDIS plan and funding.

Being well prepared prior to your planning meeting certainly does help, as does self-advocacy, but it is not the full picture. Most participants’ interaction with the NDIS will be through a Local Area Coordinator (LAC) so they play a crucial role in the outcome. I have been lucky enough to have two very good LACs – for the first and second plan – provided through St Vincent DePaul. They were knowledgeable and thorough in gathering all the relevant information prior to and during the planning meeting.

A problem area in the development of plans has been that in most cases, the NDIA planner who ultimately decides funding allocations, has not met or had any interaction with the participant. The information provided by the LAC is crucial, as is the final outcome decided by the planner. Thankfully there have been some changes to the participant pathway that will have a positive effect on the development of plans such as better pre-planning support, planning meetings involving both the LAC and the planner, and an opportunity for the participant for further feedback prior to plan completion (review their pre-finalised plan).

Now I know that people’s experiences with the NDIS/NDIA has been inconsistent and in my professional role as an advocate I can certainly attest to that. The news cycle is full of horror stories of the NDIS but there are also plenty of good outcomes. There is still, as far as I’m aware, loads of goodwill towards the scheme from all stakeholders and we want it to succeed and be sustainable. This will be judged on the ability for participants to be well supported, allowing people engage with the world as they see fit – whether it is through employment, education and social and civic engagement on a par with everyone else.

For myself, since being in the NDIS, I have been given social support to a degree that I would never have received under my old state government funded program. I have taken out a theatre subscription (paid for by myself I might add) and positively I’ve been able to utilise my NDIS funding for a support worker to attend with me – when friends or family are not available – providing physical support for eating, drinking and managing my type I diabetes. I’ve been able to utilise my 'core' funding for additional transport costs. I can also use the funding for all of my continence needs instead of severely rationing this need under the old CAPS funding model (continence aids payment scheme) which was limited to less than $600 for one year.

All of these changes have been very positive outcomes in my day-to-day life. For that I am thankful and very relieved. So, a pat on the back to the NDIA and the great LACs in my local area for the positive changes that have been put in place through the recent reforms. I am a happy chappy!

Tony Jones
Central and Eastern Sydney PHN  
Disability Network