National Disability Insurance Scheme
A carers’ perspective
1st June 2026
When our daughter was born in 2002, we were not prepared for the myriad of medical interventions and care she would need to live. That first year, we calculated that we had spent more than 200 of her first 365 days in hospital or in hospital accommodation. Time spent away from our son and family, from work and friends.
Over her first 12 years, she had to undergo more than 30 operations and procedures, weeks on-end of traumatic medical treatments, allied health recuperations and rehabilitation visits, and of course, enduring the usual childhood maladies too. As part of the medical model, our daughter had to attend multiple appointments, countless times, at a hospital that is 222km away from her home in a different state.
Over the past 23 years, her current age, my husband and I, and our family, have been thrown into this medical life. A life of coordination of medical specialists, general practitioners, medical complexities that even some GP’s might never experience, and syndromes that are new to most people. The learning curve of autism came at 15 years old when our daughter was diagnosed, on top of all her other diagnoses and two syndromes.
Before the NDIS, there were the local and state funded programs to assist families and supporting carers living with family members who had disabilities. Through these organisation we had support for our son, as a young carer. We had FAFF funding for assistive technologies and medical equipment.
We had home modification support for our daughter living with severe anatomical bowel incontinence. We had allied health support from incontinence nurses, physiotherapy and occupational therapy. We received carer respite and had support for our whole family to have a respite holiday once a year.
When the idea of the NDIS started, we went to every consultation and cherished the promised of becoming “parents again”. During this same time we also cared for my father who had multiple health issues and we began supporting him with his Aged Care Package, until his death in 2020.
What we noticed straight away, was that the supports for Carer’s stopped
once the NDS started. It seemed to us that the scheme was more about providing jobs in the new ‘support worker sector’ and privatising the allied services sector. No support for medical accommodation, travel or medications? No support for Carer’s anymore? No support for young carers? No more respite holidays together? Our role as carer’s did change but not in the way that we had hoped.
Our daughter had become a small business and everyone wanted a piece of her package. We were expected to run this ‘package’ and watched as providers changed their prices accordingly, and continuously. We had providers refuse to take her on, such as a job agency, as they wouldn’t make enough money out of her package?!? We had independent support workers overcharging, not turning up and still charging, and unwilling to negotiate a fair price for exorbitant weekend rates.
As the years have passed, the NDIA has become more and more work for us, the carers, to manage and what was initially offered has now been taken away. No more respite holiday for us to have a break from our caring roles. We have a COS, LAC, and Plan Manager, all who can not make a decision without writing to the NDIS. It took nearly 6 adults all employed in one way or another through the NDS scheme to make a decision about essential assistive technology for our daughter. This including a plan review, which means more evidence gathered by us, all this taking more than 5 months. When I said this to the LAC she laughed, she gets paid either way!
I sincerely believe the NDI should be ‘NOT FOR PROFIT’.
If the government are truly wanting to reduce the NDIS budget, making it not for profit would take away most of the provider rorting. Take away the over pricing for services and inconsistencies of rates. Make the government accountable for education and employment of ‘support workers’ and keep it affordable.
The death of the poor young 16 year old fellow on the Gold Coast in 2023 with uneducated support workers breaks our hearts as parent carer’s and fills us with fear. This tragedy should never have happened for this young boy, taking his own life, when supposedly supported by a 50 billion dollar scheme!?! It clearly shows that the government needs to be overseeing the scheme not handing it over to the private sector, where greed and non-caring is rife.
Our daughter’s current NDIA plan doesn’t reflect the level of support she now needs. Her therapy funding is running out, her COS is being phased out overtime, as are most of her other allied services? Her needs are lifelong
and her support should be the same not ‘planned’ to become no longer available to her? Her Core funding doesn’t seem to stretch far enough to cover the support hours she relies on any more. If her psychology or EP sessions stop, or if support worker hours are cut, I fear her progress will reverse more and we will be unable to support her living with us, with our own ailing health, as aging parent carers.
When surveyed recently by her ‘provider’ our daughter said want she most wanted out of the NDIS was social participation. She said she feels socially isolated and wanted more support to be with people of the same interests and age. The very thing that the young boy took his life over. The very thing that the NDIS is threatening to take away!
Our hope is always that our daughter become as independent as ‘is possible’ for her. That she is assisted by ‘caring and qualified support workers’ to continue working on managing her own life long health issues. That she is assisted in building more confidence socially and finds a place that she feels she can be part of in our local community.
What we need, as aging parent carer’s, is a support team to gradually step in where we are stepping back. A support team we can have confidence and trust in. With the right funding and consistency, we believe she will continue to thrive. Under the new changes non of the above will happen of course and this will be detrimental to our own health and well being. Phasing our care out will no longer be possible and living with a reality that one day, when we’re gone, what will her care look like?
We do appreciate the supports that the NDIS have provided her over the past 8 years and are grateful for every opportunity where this has allowed her to grow and thrive. We are asking that the government find other ways of better managing the scheme without taking away from the participants essential supports which they already have.
Sincerely yours