I would like to share our NDIS journey and how it has changed our lives for the better. I hope it will give people some perspective and give people hope that the scheme is destined for greatness.
I live in the ACT with my husband and my son James. James turns 21 in October, he has a severe disability and we have been involved with the NDIS for nearly 3 years now. For the last few years of James’ schooling I often lay awake at night wondering what was going to happen when he left school; how was I going to make ends meet? How was I going to provide a good life for my family if I couldn’t work? How would James have a fulfilled life if there was no funding for him? James didn’t want to spend every waking minute with his mum and dad, he was a teenage boy, and he wanted to have fun doing boy stuff and experiencing life without his mummy hanging around all the time. I had so many thoughts, so many questions that would go around and around and no one who could answer them.
I remember it like it was yesterday, a meeting at James’ school when he was in year 9 and his teacher said to me, “You should consider retiring because there isn’t any funding for you when James leaves school.” I think I cried every day for 4 years. I was at work one day, crying to my CEO; a very prominent and passionate advocate for the disability sector, my mentor and my inspiration. She told me about the NDIS, at this stage it didn’t even have a name. She said, “Don’t worry. If this [NDIS legislation] passes, James will get the support he needs and you may be able to continue to work.”
The start of the NDIS journey
Then James’ time for the NDIS arrived. We gathered his information to be assessed for his eligibility, we sent it in and then came the planning. Back then the planning process was more complex and I had to address every aspect of his life; 6 goals if memory serves me, strategies and outcomes. It’s a little different now; basically tell me about your life and give us 3 goals. But how do you sum up someone’s goals, hopes and dreams in 3 goals? For his first review I thought, “Wow this is so much simpler than the first plan. But is it better?” I don’t know, personally if it was James’ first plan I would have found it harder because it didn’t prompt me to think about all aspects of life. But the overwhelming consensus from people moving through the process was simplifying it will make it better.
James and I met with the planner, and James’ support worker was also involved in the meeting. We talked about James and what support and equipment he needed, with James interjecting here and there, generally to tell the planner about daddy’s truck. She prepared a draft plan, we met again and made some changes, and we had a few robust conversations about various things. There was some “but why?” and a few “actually it says here you can do that.” My extensive NDIS knowledge meant I might have taught her a few things!
When James’ first plan came through it was itemised and laid out, but I did not start using his funding straight away. I was scared of it to be honest. Going from; you will have nothing to; here you go start using it, felt a bit surreal. After the initial fear, I found it easy to follow but as I started to find my confidence managing it, I felt it was too restrictive. So they changed his plan and bundled items together so the plan could be used more flexibly. I am not a huge fan of change and at first I struggled to look at these huge budgets and work out who got what. It actually made me a little anxious; what happens if I didn’t budget properly and over spent not realising?
The NDIS has changed our lives for the better
Well that is now ancient history, I have settled in to the changes, and can comfortably account for each individual thing. Two and a half years later we have employed our own support workers and we self-manage, which is not for everyone but it works for us. James attends a day program 4 days a week and spends the other day with our support worker usually baking at the moment. The support is flexible enough that we have been able to take our workers away with us to help with James’ personal care. They have also stayed at home and cared for James while we have had a night or two away. James is happy, he is getting out and doing things, meeting new people and being a social butterfly. There was no chance of doing any of this without the NDIS, and we are happy because James is getting to make choices about what he wants. We do have to help him a little, but he’s pretty good at saying NO! We have been funded for modifications to our car so our workers can take James out and about, and a few other pieces that will ensure everyone’s safety.
Recently I posted my thoughts on a social media page about the amount of negativity going around about the NDIS. Yes, constructive criticism is good and it can pave the way for improvements, but what I was seeing wasn’t always constructive and I am sure it is causing unnecessary worry for those who are yet to transition to the scheme. As human beings, the more negativity we see and hear the less likely we are to go into something new with an open and positive mind.
My post was well received by most but there was some negative feedback about my comments about being “thankful” and “grateful” for the NDIS and that people shouldn’t be thankful or grateful for the scheme. Well, I disagree.
I am thankful to the people that have fought for the rights of people with disabilities for so many years. Without their tireless work we wouldn’t be where we are today. I am thankful to our governments for passing this scheme to allow people with disabilities to live better lives and in a way that they choose is best for them.
The other issue I see being talked about is: why should people with disabilities have to jump through hoops to be deemed eligible, plan their lives when others don’t and discuss their hopes and dreams with a complete stranger? I think this is a small price to pay to have access to funding that will support the people in our lives with disabilities. The funding and plan is designed to be flexible so it meets the needs of the individual, not just putting them in a box based on what disability they have and saying this is what people with your type of disability gets, good bye.
We may not realise it but we make plans every day. We all have hopes and goals for the future no matter how small, some we make happen and others are just pipe dreams. The only difference is most of us don’t write them down on paper.
As a parent I am always thinking about the future, and what my son wants for his future, and I can say without a doubt that my son wants to experience life. He wants to have fun and he wants to feel secure. No, the scheme is not perfect and yes, some people’s experiences so far have not been as positive as others. But I think we need to remember that this is new to everyone. Not only are we trying to navigate through the uncertainties of the scheme but so too are the NDIA themselves. They are trying to continually make improvements to make it better but mistakes are going to be made on the way to greatness.
We need constructive feedback, not just criticism
I believe that we need to help the NDIS by giving them constructive feedback about what does and doesn’t work, not just criticism. My son is into his second plan and just in these two years I have seen many changes to try to improve the scheme. They are listening to feedback, sometimes it just takes time to fix the problems. We need to remember that the NDIA are trying their best to meet individual need and this is far more difficult to balance than the old one size fits all approach.
I could not imagine where we would be without the NDIS, that’s why I thank my lucky stars that we live in a country like ours. Yes it took a long time to get to where we are today and there is still work to be done, but here we are and I for one am grateful.