Thanks to an NDIS package, Alison can keep working.

My name is Alison and I live with my husband and our son James. He is turning 21 this year and has a severe disability.

He is one of the most down-to-earth and easy-going people you will ever meet. He inspires me every day to be positive, enjoy the life I have been handed and not dwell on the little things.

As a working carer, I have worked in many roles across the disability sector over the past 10 years including employment services and support coordination and I believe our lived experience gives me a deeper understanding and insight into my chosen work.

We have been involved with the NDIS for nearly three 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 four years.

I was at work one day, crying to my CEO, a 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.”

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 – six goals if memory serves me, strategies and outcomes.

It’s a little different now – basically tell me about your life and give us three goals. But how do you sum up someone’s goals, hopes and dreams in three 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 overspent not realising it?

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 four days a week and spends the other day with his 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.

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 can choose what is best for them.

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.

Source: Based on a personal story from Every Australian Counts.