NDIS Future Generations Bill 2026, Parliamentary Inquiry Committee submission by
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To whom it may concern, I am a 52 year old single mother and full time carer from the Adelaide Hills, SA. I am the fulltime parent and sole carer to my two daughters, both who are autistic and have multiple chronic comorbidities. I also have an adult son with AudHD. We have no informal supports and no access to community supports.
I have not been able to work at all for over 5 years due to several chronic health conditions. Prior to then, I was unable to work at all as I had no respite options to provide care for eldest child since she became unwell at aged 16 years at the beginning of 2018 and was now bedridden and required care. It took fighting and advocating for my daughter for 7 years to finally get acceptance for her severe me/cfs and POTS diagnoses 12 months ago from NDIS. We fought at the ART tribunal for over 12 months for appropriate supports, and we are still collecting the required evidence through our OT for much needed AT equipment, complex home modifications and vehicle modifications.
I have also been accepted by NDIS for severe me/cfs and POTS and am also bedridden and housebound. We, all three of us, rely entirely 100% on support worker assistance to be able to leave our home for all of our medical appointments, as well as errands, shopping, and social and community participation. We are also completely dependent on support workers to provide all in home support and personal care for us all on a daily basis as we cannot cook for ourselves or do any household chores due to our very limited functional capacity. Due to being house bound and with limited capacity, even with the assistance of support workers, if our supports are reduced we would not be able to maintain the care of ourselves or our companion animals as they support us with our emotional regulation, not including the overall hygiene to our household. Our pets play a vital part in teaching my youngest child feelings, boundaries, behaviour along with general life skills including nutrition and healthcare. This has been a great impact on teaching my youngest child self awareness due to her PDA, we are unable to use any behaviour techniques. We would not be able to reach our nutritional or medicinal needs on our own. Our health would suffer to the point of requiring hospitalisation, then my children and I wouldn’t be able to continue living in our own home as we are currently able to only due to being able to access our current support through NDIS.
When my children were younger, I was only able to work sporadically for short periods if I could find any suitably flexible casual work of a few hours (as casual employment during schoolwork hours are like trying to find gold), but often had to resign due to my high care load requiring me to take off a lot of time from work for my children as they could not cope in school, let alone with any out of school hours care. I have not been able to work fulltime for over 25 years, since I first became pregnant with my eldest child, who is now almost 25, as I also got hyperemesis gravidarum for all my pregnancies, as well as problems with my hips, back and pelvis from what I now know is connective tissue disorder. So due to this I only have very minimal superannuation, I am still paying a mortgage, I have a HECS debt that I will never be able to pay. I am currently in Family court proceedings with the support of Legal Aid yet again against my financially abusive ex-husband for Adult Child Support for my eldest’s care needs, as our medical expenses are very high. Ever since our separation in 2009, my ex-husband has worked in his family business, salary sacrificed his pay increases into his super, not declared his Fringe Benefits he receives from the family business and been receiving cash gifts from his father in lieu – thus lowering his taxable income to avoid taxes and reduce child support payments. I have made several reports to the ATO and Child Support over the years to no avail. So while myself and the kids struggle financially and with their care, he has continued to work “fulltime” in his family’s business, completely unaffected and part of a Family Trust and Family Business worth tens of millions. I only mention these additional medical and life issues that have occurred as it has severely impacted the opportunity for me to earn an income and to be financially independent. If supports were cut, we have absolutely no means to access supports or have the capacity and ability to earn any income to cover these vital, life sustaining supports. Over the last 8 years of my oldest child being house bound due to her disability, we have approached family members on both my side and my husband’s side for support and yet have received nothing. The only care and support we receive is from our current support workers, which are funding through our NDIS plans. We have looked into community supports, but one of their requirements is not being a NDIS participant as you are considered immediately ineligible. If we were not on NDIS, they wouldn’t be able to provide the specialised and appropriate level of supports our disabilities require.
I am extremely concerned by the changes announced by the government for the NDIS, focusing on the decreased support worker funding, and social and community participation that supplies all of our daily care, transport, meals, assistance with mobility equipment and other AT equipment along with the general house hold tasks that due to our disabilities we are unable to do any of these tasks on our own, even though they are vital to our everyday living. To do so would severely impact our capacity and require us to be hospitalised. It’s vital for us to have access to the appeals process. For all evidence to be equally measured and taken into account instead of relying on one single 3 hour yes or no assessment by a non professional that doesn’t even have a medical, allied health or disability background.
After taking 8 years to get an increase of appropriate supports, if we had not had the access to the appeals process, this would not have happened and I fear for what could have happened to my child being a statistic. Cutting our social and community supports that provide us access to our necessary medical care, without these supports we couldn’t get ourselves to the hospital, medical appointments, a haircut, grocery shopping, therapy appointments, community and social groups and even to visit family. I am concerned by the I CAN assessments which are completed over a 3 hour period (many participants including ourselves, this will not be accessible due to our functional capacity will be exceeded due to our already limited capacity impacted by our disabilities. Which are done by non medical or disability experienced individuals, are proposed to replace years of evidential assessments done by allied health and medical professionals which have gotten to know us and understand our disabilities thoroughly and how our impairments affect our lives. It is impossible to get the same level of understanding in such a short amount of time, and accurate results along with the full history of somebody’s life. There has already been much concern in the disability community about the ICAN assessments suitability and that it is not fit for its purpose. Having one person to read through every report each participant has, to be able to gather what is necessary.
At the ART tribunal last year we were forced to go through an IME for my eldest, even though we had 2 Functional capacities Assessments by an OT who specialised in our disabilities, one that had just been completed just before the tribunal process started. The IME report that we
received was shocking. It was the most unprofessional, inaccurate report I have ever seen. Itwas full of statements by the OT to questions that he never even asked us during the assessment. He was supposed to be in our home for 3 hours, but left after 1 hour and 50 minutes due to myself and my daughter not having anymore capacity. He advised us at the beginning that he would be using AI to assist him, but when I pointed out all of the mistakes and completely wrong assumptions that he had made in his report, he did nothing. I raised this during the tribunal meetings and told them how it was only fit for the rubbish bin as it was so inaccurate saying that my child could shower herself independently, when she can no longer bathe herself and requires full support by support worker to assist her into and out of the bath and to wash her body and hair. She cannot sit in a shower chair, let alone stand in a shower.
With the government so keen on cost cutting, using non-professionally trained allied health staff to conduct an automated assessment process and using an algorithm and AI to work out an individual’s support needs is utopian and reckless. There will be a huge fallout from this which will be the lives of many disabled people and their carers. There will be blood on your hands.
Taking away the appeal rights of PWD to appeal their NDIS plans allows the government to get away with stripping away the human rights and dignity of every disabled person and their family. The ART process has been the only checks and balances to stop the government brutally cutting
and denying much needed necessary supports that have been recommended by medical and allied health professionals. To not only ignore professional advice, but to only take away the only avenue to try and overturn the decision and make the NDIS access the need and requirements of an individual against the laws in place is putting the lives of PWD at huge risk.
Please stop this cruelty and recommend reviewing the provider price guide and focus on the fraud and the huge government wastage from unnecessary bureaucratic red tape and use of private barristers against disabled people and their families.
Yours sincerely,