Submission to Senate Enquiry into the NDIS
To whom it may concern
Thank you for taking the time to read and consider this submission.
I am the mother, Primary Carer, QCAT Appointed Financial Administrator & Guardian over Service Provision & Health and NDIS Payment Nominee for an adult son with Level 2 Autism with PDA
Characteristics, Generalised Anxiety Disorder, Binge Eating Disorder, Severe Food Addiction, Type 2
Diabetes, Hyperhomocysteinemia, Severe Obstructive Sleep Apnoea, Periodontitis & a mild supination in both feet. My son currently resides independently from me in a 1 bed Dept of Housing unit and receives supports in his unit. His current supports consist of 40 hours/week direct support, twice weekly sessions with a level 2 exercise physiology, fortnightly sessions with a Positive Behaviour Support practitioner and a Mental Health OT. He also has 8 sessions per year with a dietician funded by NDIS to which has been added another 5 sessions provided by an Enhanced Primary Care Plan from his GP and monthly sessions with a qualified counsellor which is funded totally privately. He also has funding for Support Coordination.
It has taken time for all my son’s issues to be picked up & diagnosed. He was 1st diagnosed with Asperger’s Syndrome in Grade 2 and was placed into a Special Education Unit within a mainstream QLD Education school and completed Grade 12 in 2010. Since then, his life has been in a limbo due entirely to the lack of available supports. We moved from Townsville to Brisbane in mid-2013 so that my son could receive support from people with the requisite qualifications and live independently. I managed his supports until 2021 when due to deterioration within our relationship and my own declining mental health meant I was no longer able to support him directly, nor could I adequately and appropriately support his workers. The 1st new diagnosis was supination in 2002, the anxiety in 2010, the PDA was next being diagnosed in 2018, followed by the eating disorder, food addiction & hyperhomocysteinemia in 2020, the sleep apnoea is the most recent being diagnosed in 2026.
Of all the diagnoses the ones that continue to have the biggest impact on my son are the level 2 ASD, the eating disorder & food addiction both impact on his ability to manage his diabetes and all are complicated by the anxiety and specifically the PDA. PDA stands for Pathological Demand Avoidance or Pervasive Drive for Autonomy. PDA is born out of anxiety and can be summed up as an intense need to withdraw from ordinary, everyday life functions due to an intense fear of loss of control and/or autonomy. Because of the QCAT order, my son has no autonomy – in 2023 a legal determination of a lack of capacity was made by QCAT in a hearing to address an application made by me to address issues regarding the exact wording of the Guardian Order. My son can make decisions via a Supported Decision-Making framework, but those decisions can be overturned by me if I feel them to be unwise under the rules by which I am appointed. It is the PDA that has had the biggest impact on our relationship as my son’s reaction to my control over his finances & affairs has been to actively challenge my own autonomy over my own life. This is where we have our bitterest arguments. As a direct result of a physical assault on me that occurred in January of 2026, my management of my son’s affairs must now occur behind the scenes, with me working thru the support team.
My son’s functional capacity sits within the grey zone – he is simultaneously too high functioning to fit neatly into what are deemed standard disability services models AND too low functioning to fit neatly into mainstream support services. Repeated testing for IQ and functional capacity show differences between test scores on subtests within domains that are akin to the depth of the Grand Canyon in size, with such differences being seen as being either unusual to begin with or unusual for someone his age – mid 30’s. Ergo – I have grave concerns regarding the planned reassessment of every person on the NDIS, as the practice is that such tests get averaged out which shows my son has average mid-range
abilities & therefore does not need much by way of support - his strengths work to BOTH HIDE AND SIGNIFICANTLY MASK his weaknesses. Added to this is the planned use of AI in decision making with the NDIS. This is already a problem in the Aged Care System – people ARE being denied supports b y the AI AND the staff have difficulties in over-riding the AI!!
Right now, my son IS on progress to achieving his NDIS goals, albeit very slowly because of the impact of the interaction of his issues – THEY DON’T EXIST IN ISOLATION FROM EACH OTHER. But this has taken time for my son to mature psychologically AND significant effort from me finding the right people to work with him. People with the requisite skill set AND knowledge. We have gone from 1 step forward, 2 steps backward to ½ step forward, then a pause. ANY REDUCTION IN HIS
SUPPORT FUNDING AT THIS POINT WILL COMPROMISE THIS PROGRESS. AND THERE
IS NO-ONE ELSE WHO CAN SUPPORT HIM – I CAN’T ANYMORE AND NOR CAN HIS
OLDER BROTHER, WHO LIVES IN TOWNSVILLE STILL.
Because of this, long term I must hand my son across to Public Trust & Public Guardian here in QLD to manage his affairs. I cannot do so now because currently the ONLY way that’s been found to keep my son’s budget AND EATING under ANY level of control is to provide him with his weekly living budget as cash that’s kept in a safe when a worker is not present. He also has access to a LoadnGo Mastercard, also kept in the safe & only handled by a support worker, to provide funds for semi-regular expenses such as haircuts. My son is also allowed some online purchasing ability, which he recently abused to engage in a binge, spending $227 over 6 weeks on either Dominos Pizza or Guzman y Gomez. He was able to do this because when we purchase online, Pay Pal is the middleman, and the Pay Pal system stores the card number – I was advised by Pay Pal that it was better if I took over the online purchasing. This means if my son wants to buy online, he must send it to me for payment. He also used his account with the chemist to spend $41 in the month of June on Sugarless brand lollies. In case you can’t guess - food is the area of the most resistance to change in my son & all I have to deal with it is 13 hours p.a. with a specialist dietician because the NDIS won’t provide any more funding above the current 8 hours!!! It is hoped that over the next 5 years my son will develop the ability to maintain control over his food intake & budgeting, making the transition to Public Trust – WHICH WILL CHARGE HIM – easier.
In January I was diagnosed with PTSD. It is moderate level and self-controlled. It DOES inhibit my ability to engage in life management functions for myself and my son. This is because every time I have to open myself up to casual psychological abuse from the people I have to talk to because they’re just not stopping to think about what they’re doing or saying. When it comes to my son, it involves seeking information that will inform and underpin decisions I’m legally obligated to make AND legally liable for making. I have to ascertain who is the right person to talk to and then ask the right questions of to obtain this information and it becomes exhausting. It is this treatment that definitely contributed to my inability to continue to manage my son’s supports and to worsening of my PTSD over time.
I would urge the government to look at the complexity of the system as a way of saving money and not to cut funding to save that money. I see cooperation with state health authorities via the public hospital system as being a way to provide additional services for those whose needs are not as complex as my son’s are, for which the states need to be adequately reimbursed. Training of call centre staff is also important – in 2024 it took FIVE phone calls, THREE OF WHICH WERE TO A MANAGER OR SUPERVISOR to get a Record of Service sent to Support Coordination, a document they need to do their job!!! In 2021 when I switched from self-management to plan management, it took THREE calls to the NDIS to figure out how to pay my workers from the old plan, which formed part of the pay cycle and plan management didn’t have access to. Similar to fix up errors made by the LAC during the planning session like entering incorrect names and relationships and changing the bank account my son’s mobility allowance was paid into. Another occasion in 2020 I had to lodge an IT support ticket and included on that ticket the fact that I’d be away from home between set dates, so please don’t call
me during that time. Guess when they called me? Yup – during those dates. Support Coordination costs around $100/hour PLUS the hourly cost of the call centre operators I have to call multiple times to fix these issues caused by people working on autopilot. I have been told outright lies by NDIS staff – like that I couldn’t get Support Coordination unless my son was in SIL – and that came from a Planner!!!
Thankyou for your time and attention in reading this submission. Should any member of this Committee seek to speak with me in person, I will make myself available via Zoom or Teams. I can be reached via email – . In the interim, I remain
Respectively yours