Submission on the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

To the Senate Community Affairs Legislation Committee,

I am writing to express grave concerns about the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024.

I am a middle aged autistic man who is not currently an NDIS participant.

I was diagnosed with autism (Autistic Disorder under the DSM 3 R) as a child in 1991, when at the time autism was considered a rare condition affecting 1 in 1,400. Before diagnosis, as a much younger child, I had needed help from a speech therapist to talk, and had from mainstream schooling been referred to hearing testing when teachers recognised some of my communication difficulties. After diagnosis I was referred to an occupational therapist who I believe focused on movement and coordination issues, and following a move to rural NSW a physiotherapist when this was what was available at the time.

In 2011, having moved to Sydney I engaged with Aspect, now named Autism Spectrum Australia, to participate in their social group program for autistic adults. It had no cost to participate, and I presume may have been funded through a combination of block funding and other sources. My recollection is maybe 30 autistic people participated regularly, and that the service required 2 part time staff, Caroline Smith had made it clear that she had around 2 hours a week outside of the program where she would perform administration and planning and Anna was employed only for the time the social group actually met.

In 2013 the Aspect social group held an information session to explain that something called the NDIS was changing how the group would be operated. We would all need to apply for insurance through the government and in doing so the increased funding would allow for much more services and staff. I believe it wasn’t what the majority of the participants wanted and the path of least resistance for me at least was just to stop going.

For me, the NDIS has continued to be a barrier preventing access to services. Someone suggested I engage Autism WA to help with seeking employment but the service per https://www.autism.org.au/our-services/employment-support/looking-for-a-job/ is only available to “Individuals who have a diagnosis of Autism and who are eligible for DES or who have a NDIS plan for finding or keeping a job, or school leaver supports”

I have tried to seek help accessing the NDIS. I have spoken to GPs and a psychiatrist, and found they really don’t understand what it is or why I should want to be on it any more than I do. I have spoken with NDIA and Mission Australia staff who suggest that I can’t access it with a diagnosis from 1991, lacking mention of autism levels that were only introduced with the DSM 5 decades after I was diagnosed. I know that I am “autistic

enough“ to have been identified at a time when few autistic people were but that doesn’t seem to matter, all it means is that I don’t have what they are looking for. The NDIA staff member suggested I’d need to seek a new diagnosis, which I don’t know much about, but I know from discussions with undiagnosed autistic people it’s expensive and difficult; and why should I do that for a chance at maybe getting on the NDIS which maybe if I am lucky might help?

The phrase “Kafkaesque nightmare” gets tossed around a lot, but that’s what I see the NDIS as. I know people on the NDIS, some manage to get it to fund supports that are very helpful while others have a different experience. A friend (whom I don’t want to name for their privacy) was accepted onto the NDIS and was given a plan with tens of thousands of possible funds, but was stuck for years not able to get some kind of person that had to be allocated to her plan to actually fund a single service. Rather than enabling anything it was just a source of more stress and anguish, having passed all the hurdles to be accepted into it only for bureaucratic and likely stretched service to continue to not provide any help.

Not only do the changes in this bill not fix the NDIS, nor seem to address the extravagances of moving away from block funding of services to a system where the services from almost every provider seem heavily marked up because the providers boast that the recipient is not footing the bill and look your plan has all this money anyway; but they propose to make the system tangibly worse with the threat of a “robo-debt” like consequences for NDIS participants acting in good faith being “sold” services perhaps they might be determined not to need.

I have personally seen an NDIS plan management service use a predatory advertisement telling participants to choose them as they’ll get a “free” iPad (with the fine print explanation it will come out of their funding, and only be if it is deemed reasonable and necessary for them), obscuring to the participant that it is only for those that need it.

The bill might change ‘reasonable and necessary supports’ to ‘reasonable and necessary budgets’, but going back to the example of the social group I attended through Aspect, as an autistic person I would have never called it “necessary” - my life was worse without having it, but I survived without it (ie. I’m alive), so it wouldn’t be something I’d call “necessary” on my own, and if I would have gone onto the NDIS I would have to call it such to have funding allocated to continuing to participate.

Participants might come to understand what is considered reasonable and necessary, but I suspect many find the concept remains foreign to them and likely try to navigate the system based on what the experts they refer to suggest. They should not have debts raised against them for trying to navigate a confusing system. Many autistic participants are risk adverse and will take the threat of debt which could be quite high considering the charges of NDIS services, to mean that they are reluctant to accept services they need or will benefit from, not because they are less deserving than those that do, but simply because it seems too much like a sword of damocles hanging above their heads.

Instead of putting the accountability onto the participants alone, the consequences need to be shared with any and all NDIS provider organisations that authorise or even encourage spending that might be reviewed by NDIA to in fact not be ‘reasonable and necessary supports’ or within ‘reasonable and necessary budgets’.

We are in the midst of a housing and affordability crisis, and I believe it should be obvious that disabled people are significantly impacted. Even the threat of a robo-debt like bill for declined NDIS funds that have already been spent will have dire consequences.

This bill seems focused on cost cutting, but at the expense of the original vision of the

NDIS.

One doesn’t even need to agree with that vision to see that these measures may result in costs being cut in the wrong ways. I believe the right way to cut costs would be to determine which services could be cheaper to be ran under something like block funding, and to transition to that before beginning to hack away at the pillars that the NDIS has at its base.

The reality, I believe, is that the NDIS is for many adults diagnosed (and those without or seeking diagnosis) with a condition like autism, the NDIS is less “insurance” and more a lottery. It is a process heavily favouring those either most adept at jumping through all the hoops in the system or lucky enough to have connected with the right help to do so, which in consideration of the changes, and ways a person might be forced off the NDIS, needs to be understood as ephemeral (I have issues just trying to keep up with having a bank account and medicare card, I don’t even have a photo ID at the moment not managing to have a driver’s license. If one is “lucky” enough to have all the stars align to become a recipient, with funding and the right people to enable them to use it, a wealth of supports become available that might lessen the burden of their disability, but in light of Mr Shorten’s address for the changes, and praise of the program’s success, I worry it’s conveniently forgotten that many living with disability are not being served by the NDIS presently, and that the bureaucratic hoops needed to engage with the version we have now, before the proposed additional hoops are added, is a barrier for many.

I don’t think the bill puts the NDIS on track, rather it ignores many existing issues faced in accessing the NDIS and being a participant by adding more hurdles and potentials for the system to fail participants, while ignoring and increasing all the current gaps in the system (and example of increasing a gap would be the changes to consideration of primary disability, as if disability is necessarily something that can be considered separately such as a person with ADHD and autism, where ADHD is not currently covered under the NDIS, might be forced to speak to the unanswerable question of how to separate the two parts of their experience)

Thank you kindly for your consideration of my thoughts and concerns,

Nat Ringham