Abbey and Tyler's NDIS story
“As daunting and as hard it is to face the fact that you need help, trust me it’s worth it.”
This is Abbey’s story about her son Tyler’s experience with the National Disability Insurance Scheme (NDIS).
“My first encounter with the NDIS was after my son Tyler became critically ill, severely disabled and diagnosed with Leigh syndrome. There were so many things we required for this altered life we now lived. The NDIS made this possible.
We went through several review processes to fine-tune Tyler’s plan and get what was best for him. I wish someone had explained the importance of the goals at our initial appointment and how to articulate them as this would truly impact the decision making around funding. The process was overwhelming at times, however, as I built my knowledge on how the NDIS worked, and its purpose and fine-tuned Tyler’s goals, I built my confidence to speak up and ask questions. This resulted in coming out the other side with a plan that truly fit Tyler’s and our life.
After my son's passing in 2018 I became a Support Coordinator, a role which specifically assists people to implement their NDIS plans. Over a couple of years, it has become apparent that there have been several improvements to the NDIS process, what it funds and a better understanding that everyone’s needs are unique. I have experienced and seen first-hand the difference it makes to people’s quality of life.
My taking from our NDIS experience and my experience as a Support Coordinator is ASK! Ask questions, around what you may be entitled to and have access to. Ask if you’re unsure of anything. Ask for things to be re-evaluated if you’re unhappy. And don’t be afraid to ask for help if you need it. NDIS supports became an integral part of our everyday life and our son’s journey. The in-home supports, therapy and assistive technology made his short time on this earth a lot more manageable, comfortable and most importantly, enjoyable.
You are your loved one’s biggest advocate and voice. As daunting and as hard it is to face the fact that you need help, trust me it’s worth it.”
This case study has been published with the permission of the NDIS participant and reflects actual events. This case study aims to provide an example of an experience with the NDIS and share tips for others. It does not guarantee the same outcomes for any other individual.
