I started my business to provide a service I wanted and didn’t receive as an NDIS participant. Since beginning our family’s NDIS journey, I have felt uneasy about the process. Other parents of autistic children told me to make sure I base the planning meeting on my son’s worst day. This felt awful and almost dishonest. I did it as a necessary way of jumping through the NDIS hoops to hopefully secure funding to support my son.
My partner and I applied to the NDIS after our son’s plan approval and were accepted. I had learnt by then that the language of the NDIS was capacity building and a functional capacity assessment (FCA) got us both over the line as late-identified autistic adults. It was a relief to gain access to the support that I needed for so long.
As we all engaged support services within the NDIS space, we started to see a clear pattern - we were looked at as incompetent and in need of services ‘taking control’ of our lives. I had never been so clearly treated as less than or not capable of making decisions about my life. Infantilised is the word that comes to mind. Our support coordinator was constantly condescending to me, even when I pointed out budget concerns, I was met with the attitude of ‘don’t worry’ about that hard stuff.
I liked the idea of support coordination as a job, it felt similar to a social work position and I’ve always wanted to be a social worker. I settled for community services because the placement hours were a lot less and more manageable for my family life. I did training in support coordination and then decided it was the right path for me. After my training, I fell in love with the idea of the position. Supporting families in a respectful and more affirming way sounded like a solution to the anguish I had endured since joining the scheme.
Shortly after starting my business, the NDIS ACT changed. I don’t think I can put into words how stressful, devastating and outright injustice this new legislation is. The barrage of media stories focusing on participants spending their funds on out-of-the-box supports was a dishonest manipulation of Bill Shorten to convince the public this legislation change was justified and so desperately needed. Outlandish holidays, sex work, Uber Eats the list goes on. Most of these supports would have been won at a tribunal hearing and are not readily available to anyone on the scheme, but this was not mentioned. The truth is, getting funding for things that are not usually funded by the NDIS is incredibly difficult. Participants jump through many hoops and usually end up at the ART to get these sorts of supports included in their plan.
The in and out list was also misrepresented in the media. Bill recently said at a press conference that 90% of participants are happy with the changes because they were confused about what they could spend their funding on. This is untrue, the lists have brought more confusion than ever in understanding how to spend a participant's funding.
Putting the lists aside, the legislation changes that were not made public are more concerning. The NDIS now have the power to throw participants of the scheme, raise depts for participants and service providers, change participants' funding management style and in some cases decide what service providers a participant can use. Choice and control are long gone. The media won't hear about how participants are being phoned out of the blue and having their plan slashed without the time to gather evidence or how planners are now changing the plan management style without consent because they believe an invoice or two was incorrect. The consequences of changing a participant's plan management from self or plan-managed to agency-managed is huge. They will lose all of their current supports if they are not NDIS-registered service providers. This is being done without notice or a chance for the participant to explain.
I could go on for days about the hidden agenda of this legislation change and how much it will change the support received by participants but the most stressful part of this transition has been hearing the way participants are talked about within the service provider industry. Some support coordinators agreeing with this harsh treatment of disabled folk, believing their human rights aren’t violated by this change within the system.
As a disabled person with a disabled family, my perspective has always been different to those who work in the industry with no lived experience. I have been on both sides of the table. As a participant, I found the system toxic and as a service provider, I have found the system even more toxic. The idea that I could make a difference for neurodivergent folk in this system has been shattered into a million pieces. The system has grown more ableist and will continue to be this way, more than ever as more changes roll out over the next year.
I have to make the decision to protect my values. To protect my mental health - I will no longer be a service provider for the NDIS. I can’t align myself with this ableist system. I can’t. It goes against everything I stand for and believe in. I tried doing it in an affirming way, I had dreams of creating a team of neurodivergent peer support workers who could work outside of the system to give families the support they so desperately need but I can’t have the NDIA as my boss, dictating what I can and cannot do to support autistic folk. It just won’t work.
So I am pivoting my business, I am focusing on my passion for creating resources and writing. I won’t be offering any face-to-face services, only self-directed learning materials for neurodivergent folk. I will offer resources to navigate the NDIS and the new legislation changes but not as a service provider, instead as a peer, trying to navigate this system myself.
I’m grateful to those who supported me on this quest for a better NDIS experience for autistic participants, it may no longer be possible but we can individually and collectively keep advocating for a better support system for disabled Australians.
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