As an NDIS participant since its very beginning when the Newcastle LGA became one of the first trial sites in 2013 before the national rollout, overall, I have had a positive experience. It has definitely changed my life for the better and allowed me to have experiences as well as achieve goals and dreams beyond my wildest imagination like living independently and gaining mainstream employment. However, since mid-October 2022, the level of admin work I have had to complete has been completely unnecessary. How has this all come about? Through a lack of communication and transparency from the agency. 

In a matter of six weeks (mid-October to late November), I had the start and end dates of my NDIS plan updated three times without my knowledge or consent. The only reason I knew that this had happened was when I logged onto the NDIS self-service portal to put a claim in. To say this angers and infuriates me is an understatement. 

The agency has expectations of us as participants of the scheme to be transparent if our situation changes at any point, yet in my situation, there was a complete lack of transparency when they make changes that impact my life. Just before my most recent plan date change, I had just had the final quote approved for home automation. When this was done a staff member from the agency took it upon themselves to put new plan dates in place without my knowledge or consent. 

Now it may be asked what the changing of plan dates means. Plain and simple; more paperwork, contacting my service providers, informing them what has happened, then depending on their process, a whole new service agreement must be created and signed by me. It’s not only my time wasted, but the time of NDIS service providers and staff within the agency. Changed plan dates and new service agreements add to the enormous workload and pressure chamber being created due to the backlog of work, challenges with workforce and resourcing. These people and organisations are already being pushed to the limit and in some cases even beyond breaking point, and everyone suffers as a result.

In addition to time, this has caused unnecessary psychological and emotional stress which ultimately impacts my personal life, and relationships with friends, and family and meant that I am less productive at work. The saddest and most significant impact is that I begin to reinternalise and believe the “choice and control” that I, and all participants seek, is back in someone else’s hands. This is a belief, and oftentimes reality, that people with disability battle every single day of our lives. 

NDIS participants inform the NDIA as soon as possible whenever there has been a “change of circumstances”, but I believe strongly that this expectation goes both ways. We must remember that the NDIS was introduced and promoted in the market to put the choice and control of daily life back in the hands of participants. 

Understanding the multifaceted impact of NDIA decisions, processes and actions requires much greater community consultation. People with lived experience need to be sought out and heard, as only then can we co-design the greatest National Disability Insurance Scheme we possibly can.

About the Author:

Scott Taylor is a passionate Sydney-based disability advocate, and an avid supporter of the NDIS as one of the first participants on the scheme. Represented by Champion Health Agency, Scott enjoys giving back and engaging with the community to ensure that all of us - regardless of our situation and circumstances - can go on to live a life of their choice. Scott has advocated to State and Federal Ministers of Parliament, been interviewed by Kurt Fearnley on ‘A Nation Changed’, spoken at Disability Expos and shared his lived experience for technology giant Apple at the Global Accessibility Awareness Day event. 

https://www.championhealthagency.com/scott-taylor