National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 13
Submission for the NDIS Senate Amendment (Securing the NDIS for future Generations) Bill 2026
From
Karen Forde
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 13
Submission for the NDIS Senate Amendment (Securing the NDIS for future Generations) Bill 2026
I’m a disabled person (not on the NDIS). I acquired my disability from a workplace accident which left me with a brain and spinal injury in 2011. I am on a Disability Support Pension.
I was an experienced cooperating class teacher (disability education) in a Category 1 school in Adelaide’s northern suburbs – working with extremely disadvantaged students from First Nation and CALD backgrounds, so I understand the diversity of our disability community.
I have since lost my hearing in my right ear. My treatment for these ongoing disabilities is funded by Medicare and my private health insurance.
I have a 10-year-old autistic granddaughter (Level 3). I believe in inclusive education, but I help pay for her to attend an independent autism specific school as I know that state schools are currently not able to provide the intensive speech therapy she requires, nor have classrooms which can cater for her sensory needs. She communicates using immediate and delayed echolalia, Auslan and communication devices.
My late partner was on the NDIS. He had Cerebellar Degeneration and later Early Onset Alzheimer’s. Both are terminal, degenerative conditions.
My late partner’s experience of the NDIS was mixed. We were able to find excellent support workers and allied health professionals with the assistance of sensible Support Coordinators who knew their stuff. Neither my partner or I would have cognitively been able to manage the paperwork or find the right people by ourselves.
Having experienced Occupational Therapists and Speech Pathologists who were able to assess him and prescribe the correct equipment and home modifications meant he could stay at home as long as possible. He had Degeneration of the Cerebellum (cognitive impairment, vision loss, difficulty swallowing and talking, loss of balance and falls) and Early Onset Alzheimer’s.
The main problem we had was dealing the NDIA. Their inability to comprehend his disability and understand the need for new types of equipment and home modifications as his condition worsened, mean that he was left without the correct equipment for up to 6 months or more. This delay meant more hospitalisation as he would fall, hit his head and often require surgery and hospitalisation.
He required a modified bathroom to accommodate his wheelchair. Again, the NDIA delayed this for an inane reason. The assessor couldn’t understand the plan and decided that they would delay approval because it looked as though we ‘wouldn’t have a lot of space left in our loungeroom’. This was an incorrect assumption. This could have easily been checked by 1) emailing the OT who drew up the plan or 2) asking us to provide photos by return email. Instead, we had to wait months for letters, clarification in writing from the OT before the quotations for the work could even begin. In the meantime, my partner had several falls in the old, unmodified bathroom and sustained more head injuries which contributed to a more rapid decline of his condition.
When he died last year, I was left with thousands of dollars of equipment which I couldn’t return to the NDIA because they have no re-use program.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 13
I gave most of it away to charities which sent the equipment overseas (manual wheelchair, walking frames, shower chair).
I gave a Smart- Drive which was valued at over $9,000.00 to a young person’s family who had been denied one by the NDIA, even though he was unable to self-propel his manual chair and had shoulder damage. They offered me money for it, which I declined as I felt it was unethical to accept money for an item already paid for by our taxes.
Support workers in the home for him also meant that I could work part-time and pay the mortgage and bills. This support was only for the hours I worked. I had no support to help lift and toilet him at night or deal with his wandering. This left me severely sleep deprived and with injuries from lifting him. We never went on holiday or had a new car, but we had a good, ordinary life which we would not have had prior to the NDIS. And we didn’t have to worry about becoming homeless or dependant on our children due to our disabilities.
I currently work part-time for a NDIS provider – a disability arts organisation which includes First Nation and CALD participants. This organisation has run in SA for over 25 years. We are audited regularly and have always passed this process. My workplace employs other disabled support workers too; several rely on support workers for personal care to help them get to work.
If my grand-daughter’s support gets cut, it means that I will need to retire early to look after her while her parents work. This will impact on my superannuation and ability to look after myself in my old age.
The fear and distress my colleagues and I are seeing from participants and their families is very upsetting. They have no idea what the future will look like for them. I’ve had a 10-year relationship with these people, and I am distressed for them too. We all wonder who will protect our vulnerable family members when we are gone.
My son is an independent support worker with longstanding, trusted relationships with the children and adults he supports. They are extremely distressed at the thought of losing him, not only emotionally, but the impact on their ability work, pay a mortgage and bills. One family are from a CALD background and have no relatives or close friends in Australia. The child’s father also has PTSD from the war in his homeland.
Political spin is painting us as frauds and burdens. We are not. We contribute just as much as anyone to the financial and cultural life of Australia. We will not allow our families and fellow disability community to be sent back to institutions and poverty that was our past.
Key Points:
The Minister for the NDIS should not be given powers to deny the right of people with a disability to appeal an NDIS/NDIA decision about their care and supports needed to live ordinary lives.
Parliament should remember the Robo debt scandal (and the suicides) and the ongoing problems with Workcover. Clerical workers should not have the right to veto medical evidence and deny disabled people necessary care.
Automated systems alone cannot make suitable, safe decisions about the supports needed by disabled people. This should not continue.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 13
There are currently no State based alternatives in place for participants whose support has or will be cut. Where are the documentation and timelines for these alternatives that the Federal Government is talking about?
Investigate the way the NDIA operates. It is inefficient in the length of time it takes to provide support. This has led to the blow-outs in costs, not participants.
The terms Reasonable and Necessary should apply to the individual and their needs, not as a one-size fits all term.
Participants already have functional assessments and documentation from medical and allied health professionals to provide evidence for their continued need for support. This should be enough for progressing the scheme into the future.
Reinstate support for children with a Level 1 support rating. The rating scheme is not evidence based nor accepted best practice. There is no such thing as mild autism. ‘Thriving Kids’ will just delay autistic children’s progress as it is not appropriate early intervention for all autistic children. It will cause more problems for schools and the medical profession in the future.
Increase NDIA staff numbers to investigate and regulate existing providers if there are reports of misconduct and fraud.
The NDIS contributes significantly to the Australian economy. This should be encouraged and supported. Cuts to the NDIS will increase unemployment of both disabled and non-disabled people.
Investigate other revenue raising options to fund the NDIS currently and into the future e.g. the taxation rate for large companies and the sale of Australian natural resources.
Parliament needs to make a formal apology to the Disability Community and it’s allies for blaming them for the problems with the NDIA. The blame lies squarely with the past and present Ministers and Senior Public Servants who have mishandled the scheme.