Hello, my name is Jonathan Shar. I have cerebral palsy with secondary dystonia and I have just completed my first year as a participant on the National Disability Insurance Scheme (NDIS), and to be honest it hasn’t changed much in my day-to-day life.
Before the NDIS, the supports I received from the NSW government were not sufficient but at least I knew what to expect as my service provider made all the arrangements.
If anything, the NDIS has made things initially more complicated. Getting used to the myplace portal (where you access your plan, make service bookings and track how your funding is being spent) was my biggest challenge. The fact that you need to make a service booking for every time you use your funding was a big change in mindset for me. I have learnt from past mistakes of forgetting to put bookings in and built up a routine of logging in once a week to make all bookings for the following week.
Building up a good relationship with your Local Area Coordinator is key to getting a good plan. The provider in my area has been superb. If you are getting started as a NDIS participant, I would avoid Support Coordination, (where someone is employed to help you connect with services providers, mainstream services, the community and informal supports) because in my case they did nothing. My first plan was self-managed but for my second plan I changed to having Plan Management (where someone is paid to handle the business and financial work of getting your supports happening). Being self-managed requires a lot of behind the scenes administration work that may not suit everyone.
Communication with service providers also important. It is a good practice to keep a PDF of your plan and send relevant parts of it to the organisations you work with. In my case some providers were better than others. For example, one organisation I have used automatically made bookings on my behalf on their end while another just sent me invoices and waited a few months to tell me to make service bookings.
The first year of the NDIS for me was all about getting my bearings with the new system. Figuring out how different services are funded and which areas of funding to use was confusing to get your head around at times. It’s not just 1 big bundle of money you get to deal with. It’s divided into separate budgets to cover ‘Core’ (covering daily activities, social and community participation, consumables and NDIA managed transport); ‘Capacity Building’ (covering therapies and other assistance to help develop participants’ abilities); and ‘Capital’ (covering assistive technology and home modifications). Sometimes it’s a bit confusing working out which budget to use. For example, one of my main therapies, Conductive Education, is funded under Capacity Building and not Core like I first thought.
On the whole, I think the NDIS has some teething problems such as the portal and payments but fundamentally these issues will iron them self out between now and full roll out. People have to remember this is the biggest social reform since Medicare and there are bound to be problems but for me the NDIS has been a step in the right direction . In the future, my big goal is to move out of my family home into independent living so I’m going to ask for more personal support and training in life skills in my next plan.
Jonathan Shar
St Ives, NSW
