I write to express my concerns to the amendments of the National Disability Insurance
Scheme Act 2013 - National Disability Insurance Scheme Amendment (Getting the NDIS
Back on Track No. 1) Act 2024; and the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I base my concerns on 2 foundations:
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As a Plan Nominee for a 58-year-old man with Down Syndrome and Dementia in Regional Queensland – to be referred to with the alias Wally.
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As a retired Professor of Ethics and Disability with many years of personal, practical and academic experiences regarding Human Service delivery for and with people with disability in local, national and international arenas.
As a Plan Nominee for a 58-year-old man with Down Syndrome and Dementia in Regional Queensland.
My husband and I first met Wally in 1978 when we became house parents 24/7 in a family group home to 5 young people with intellectual disability who had all been institutionalised. Wally was 9 years old at the time and had been relinquished by his parents at birth to live the first 8 years of his life in a metropolitan hospital ward – with no schooling or early intervention. Subsequently, over the years, Wally has seen us and our children as his ‘family’.
[It is worthy to note here that this generation of institutionalised people have never received a public apology for the life-long injustices and lack of opportunities to them; and the families (who probably don’t even know that their loved sons or daughters are still alive).]
After many years of shared community living controlled by block funding to a disability support agency1, Wally saw the implementation of the NDIS as an opportunity for the first time in his life to live a life with choices that had always been denied. His choices were to live in his own house, by himself, close to us in a regional town. We financially and emotionally supported and accommodated his choices by building him a small house on our property. We then oversaw years of support for him – with no financial support for his house, nor the administration of his Plan. It was acts of love and generosity from our family to Wally. With his NDIS funding and a hand-picked team of independent support workers, we facilitated his full participation in his new community.
In late 2021, we needed a Plan Review as we could see his needs were increasing. Despite Functional Capacity Reports from OTs, he was granted substantially less hours than requested. The Planner (newly appointed from the aged care sector) had not even read the documentation before the phone interview – she “hadn’t had time!”. We subsequently sought a Review; and in the time of preparation for the Review process, we noticed a considerable cognitive decline of Wally. We observed that he was most probably in the early stages of
1 The transition from his previous agency of support was horrendous. Although the agency is a well-known national agency, we discovered there was a 12% error in their billing – being charged for shifts not done, days that don’t exist (eg 31st Nov) and activities without informed consent (eg an annual gym membership). In refusing to pay for these unsubstantiated costs, we were threatened with debt collectors!).
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dementia. We supplied additional information about this, including a reputable publication about ageing people with Down Syndrome and Dementia / Alzheimers. With no communication with us, our appeal was denied.
We had no other options but to go to the AAT. I have very experienced knowledge of this field and what we were dealing with; but the 18month Appeal process was one of the worst experiences of my life and I still feel traumatised by it. The reasons for this are;
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Remembering that we were unpaid, supporting Wally through love and generosity, we were being questioned by highly paid lawyers who were suggesting that our contribution to Wally’s life wasn’t reasonable and necessary – enough – and that we, as ageing caregivers with our own health challenges and family obligations, needed to fill the gaps in his support – although we had no moral or legal obligation to do so.
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The silencing of our knowledge – all the statements of issues were set by the lawyers.
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Their ignorance was profound, their demands were offensive and their lack of adherence to the rules of engagement were reprehensible.
During the Appeal process, and by our instigation, Wally was diagnosed with Alzheimer’s Dementia by a neuro-geriatrician who was a specialist in this field. Along with his Report, we provided scientific evidence of the decades known relationship between people with Down Syndrome and early onset dementia, as well as NDIS publications also of the relationship. The lawyers wanted to argue this was a secondary disability and shouldn’t be funded by the NDIS. We were asked to get another medical opinion to clarify if the dementia was permanent, whether it would be life-shortening and whether more support would be required – although all of this was stated in the specialist’s letter. We refused to do this and subject Wally to more specialist examinations at his expense; and questioned why this expert opinion was not satisfactory?
With the help of an Advocacy agency solicitor, the lawyers were subsequently advised that the position of their argument was illegal. We won the case, and Wally then received 24/7 support to continue to live a good life with those who love and care for him in the community in which he has flourished with the provisions of the NDIS.
Notably, since then, we have administered his plan at least 15-20% under budget and employed at least 10 tax-paying support workers. We also partner with a supportive agency to provide other support as needed (eg for him to have a holiday). We instigated an innovative and bespoke ‘village’ framework of support for him by which his paid support workers facilitated his community participation in local groups. This not only enhanced his sense of belonging in the community; but also built non- paid community relationships and friendships. Wally became a notable and much-loved member of the local community.
We accidentally discovered his skills as an artist and sought to support him to develop these - resulting in him being invited to have an exhibition of his works in the town’s
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public gallery. [The Planner in the negative Plan Review asked why he should go to a local art studio; and why could he not just join a local ‘disabled’ art group?]
Despite all these successes Wally still has significant challenges. The dementia is increasingly impacting him; but he continues to live by his choices and remains well supported in a close knit ‘village of support’. With the help of a speech therapist, we encouraged him to communicate by signing as well as speech to extend his communication potential as he now experiences significant cognitive decline. Without all these opportunities to create safety nets of bespoke support for Wally with the provisions of the NDIS, Wally would now be withering away in shared accommodation or a nursing home.
Sadly, he is still profoundly and traumatically affected by his early years of relinquishment and institutionalisation as well as the lack of his choice in 50 years of shared living. To be placed back into this type of accommodation for economic expediency, rather than his needs, would be immeasurably harmful for Wally.
As a retired Professor of Ethics and Disability with many years of personal, practical and academic experiences regarding Human Service delivery for and with people with disability in local, national and international arenas.
I am concerned that the proposed legislative changes to the NDIS are ill-conceived, too economically focused, too technologically dependent, with misplaced power and decision making with inadequate safeguards.
These dominant foci result in the silencing and voicelessness of people with disability, their families and carers; and ethically, also risk causing them immeasurable social and economic harms and ordeals as they navigate a complicated system that ultimately impact their human rights. This is despite the CRPD and the Social Model of Disability being stated as critical tenets of the NDIS. The voices of People with disability, their families and carers not only need to be intrinsic to the functioning of the scheme; but also not surrendered or erased to be replaced by bureaucratic or ministerial decision making. Unless these protections are in place, adversarial discourses will dominate, rather than collaborative and supportive discourses seeking the best outcomes for people and the society in which they live.
Certainly, the NDIS can be ‘fixed’ or adjusted to operate better; but the proposed changes drastically miss important areas for review such as these listed below.
Fraud and misuse of funding is an important issue – but I would argue this mainly occurs within inappropriate organisational and business service delivery models with not enough scrutiny. A dominant focus on functionality and assessments fail to recognise the whole ‘personhood’ of an individual and risks people being merely categorised / labelled
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in the most deficit ways to attain funding; rather than to support how people can flourish and contribute to the social fabric of a community. Algorithmic decision making in planning is highly problematic and detrimental. These can only function with the limited information contributed to the process; and risk missing profoundly important information such as a person’s unique circumstances, experiences of trauma, abuse, hardship, social isolation and locations of living. [People in regional and rural areas currently lose a considerable percentage of funding as they seek services in other locations, or pay travel money for professionals to come from other areas.] Shifting or allocating some participants to other administrative areas will cause extra burden on families with multiple members with disability, as families are then forced to navigate multiple systems causing fatigue and an increasing encroachment to their private lives. Too much focus on economic concerns and discourses of financial burden to government budgets fail to recognise the positive impacts that the NDIS facilitates in people’s lives, the building of social capital in communities and the opportunities for employment. Conversely, a lack of adequate funding to participants prohibits employment opportunities for people with disability, families and carers (ie therefore needing to be supported by pensions, carers’ payments or allowances rather than being supported to participate in a chosen career.) There are other significant structural issues as outlined below that also impact the functioning of the NDIS; and to which little attention has been given. For example: The Health and Social Assistance workforce is one of the fasted growing workforces in Australia on the back of the Aged Care and NDIS requirements. Whilst burden is contributed to people with disability and their needs, there is little economic information available as to the positive financial impact of this workforce in its growth, the payment of taxes, providing employment, and decreasing dependency on unemployment benefits etc. Accreditation of support workers is a positive step, but there should also be more scrutiny of the training content and opportunities for this workforce. Large proportions of this workforce are comprised of allied health, nursing, education, social work and human service professionals. Support workers are generally VET trained. Whilst much of the content of training focuses on functional, administrative and technical skills, there is very little content on ethics, the philosophies of disability, and quite simply how we interact with the diversity of humanity. Prohibitive access to studies in the humanities is a major contributor to this problem. Whilst quite a lot of VET training is available from private providers, there needs to be more opportunities for university study to enhance skills and critical thinking. This point is particularly pertinent where there are regional
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campuses of this biggest workforce in the area, with no on-campus tertiary access opportunities. University degrees also need to be revised to adequately prepare graduates for work in the NDIS context, even if this means creating hybrid content from traditional degrees. In the context of transparency and quality, it should also be publicly stated (eg on government websites) what mandatory training and content are undertaken by NDIS planners and decision makers.
In conclusion, the NDIS is a revolutionary scheme proposed to support people with disability to have better lives in more inclusive communities. The proposed changes, though seeking economic stability, seem ill conceived with too many emphases on economic restrictions, an over important focus on functionality and permanence at the expense of personhood and opportunity, service redistributions, forced changes, and ministerial power. Combined together, there is not only a lot at risk for people with disability, their families and carers, but also potentially significantly detrimental effects of harm and ordeal for them which is not ethically defensible.
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