Introduction

I would like to thank the Committee for the opportunity, as short as the timeframe is, to provide comment on this proposed legislation. As a person with an acquired disability, the NDIS has been lifesaving for me. I have a neurological condition that is under researched and poorly understood in medical networks. But it has prevented me from working,  and maintaining relationships and any semblance of the active and constructive life I once lived. Instead, I am left with a life of chronic pain, where preparing and digesting food is difficult, participating in community and public life is largely impossible, I am unable to drive and rely on a range of mobility aids and other assistive technology.

My NDIS packages has never provided enough supports for me to be able to return to paid work, however, I do contribute as best I can through volunteer work, that is largely undertaken from my sofa.

I do not have the capacity to address all the detail of the bill. So, I will focus on four key issues:

• How it undermines the founding principles of the scheme
• Economic issues and if it responsibly and effectively addresses the need for savings
• Increased ministerial power
• Cuts to community participation

Founding principles of the scheme

This Bill proposes changes to the NDIS that entirely undermine the founding principles of the scheme, that was developed with, by and for Australians with disabilities. These principles include a human rights approach that provides individualised care to people with disabilities accounting for the whole person and their unique needs. Not only does the Bill seek to remove the notion of whole of person care. But overall, it removes the human rights approach that centres people with disabilities in their own care. After already having a Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability it is absurd the Government will now roll back the key mechanisms people with disabilities fought for to keep our community safe.

In addition to the basic human rights principles often summarised as #NothingAboutUsWithoutUs, the scheme was founded on the principles of

• choice and control
• value for money and
• reasonable and necessary

…drive expenditure of all supports. Regardless, many recent changes have already undermined these principles. For example, the refusal to allow participants to purchase off the shelf items that serve as assistive technology, requiring them to purchase from disability approved suppliers means they are forced to pay the higher prices of specialist providers. This might be the case for a grabber someone might use to pick items up off the floor, noise cancelling headphones required for those with extreme noise sensitivity, or an overbed table that could otherwise be purchased at a general provider.

The agency has also increasingly removed choice and control from participants. In addition to removing access to off the shelf assistive technology, the agency has directed the supports they should use and restricted the cost codes they can enter into the NDIA portal. This is inefficient, not only because it prevents access to care recommended by medical teams. But also it encourages expenditure that would not otherwise be used, or unspent funds in plans.

Ministerial power

The increasing ministerial power written into this Bill goes to the heart of the breach of the #NothingAboutUsWithoutUs and human rights principles upon which the Scheme was founded. Not only is it a gross overreach of power in a Westminster System, but it is also an incredibly inefficient and paternalistic approach to what is supposed to be a person centred, rights-based system. The removal of review mechanisms further exacerbates this paternalism, undermining due process to which all Australians are entitled, especially given Australia is signatory to the Declaration on the Rights of Peoples with Disabilities and other relevant international human rights instruments.

The Minister has already proven how completely disconnected he is from the needs of the disability community, let alone the specific needs of individuals with disabilities. He should not be given right of way over the care plans of all the nation’s people with disabilities. That should be the responsibility of qualified and experienced health and disability professionals. This is not a new argument. As a community, we have been arguing that plans need to be developed and approved by staff with disability qualifications, as opposed to the unqualified staff that so often make the life changing decisions on NDIS Plans within the Agency now. Moving these powers and more to the Minister, and removing any right of review is not only undemocratic, but may indeed be illegal. This parliament should not allow such a change to be made, and force some person with a disability or their family to test such law through to the High Court when this all goes terribly wrong.

Community participation

The blanket 50% cut to all community participation budgets is not acceptable. Community participation is not just people with disabilities going out for social gatherings. It is used to pay for people to attend medical appointments and run basic errands that they would not otherwise be able to do. For example, because my plan hasn’t met my needs for several years and the Agency hasn’t responded to any formal complaints or Change of Circumstances, I have not had any funding to use for support workers for community participation.

This means I have not been able to attend my doctor to receive the injection I am supposed to take monthly to stabilise my immune response. I can’t go to that appointment alone because for all intents and purposes, I pass out when I have the injection and need to be supervised, and need to have someone with me who knows and understands my condition to provide me with assistance (including anti-nausea medication, ginger and water). I will barely be vocal, so they need to be able to understand my signals, and also provide physical assistance when the time comes to leave, helping me into my wheelchair and driving me home again. Without this injection, my pain levels have gone up, as have my requirements for other medications. It also effects my digestion and I am unable to eat whole, hot foods, including vegetables and many proteins. My fatigue is also significantly increased, preventing me doing basic life administration like showering, reading emails or signing service agreements.

Similarly, I have not been able to hire a support worker to take me to the post office, to collect parcels the postman failed to leave at my door. I recently hitched a ride with a neighbour to the local shops to collect such a parcel. He dropped me near the post office while going to the service station for petrol. However, because I wasn’t under the supervision of a support worker, when public construction workers turned on an electric saw and started cutting concrete pavers, my body shut down from sensory overload and I passed out. I was wearing one pair of noise cancelling headphones, but changes made to my plan several years ago meant I’ve not been allowed to refresh them for a long time and they no longer work as well as they should. I was never given any money in my consumable budget so I can’t buy any of the noise reducing headphones like ‘Loop’ the budget barrier compounded by the rule preventing off the shelf purchases). All these issues compounded to leave me passed out in a busy shopping centre known to be criminally dangerous, unable to get away from the stressor causing my physical state, or access a person to protect me. Cuts to community participation budget are cuts to the safety of people with disabilities.

I do spend some of my community participation budget to attend a weekly pottery class run by the Canberra Potter Society. I find the class incredibly therapeutic. Working with the clay is a great stress relief, helping me manage my anxiety and depression related to living with disabilities; but so is spending time with my classmates, who also live with disabilities. We are able to bond and build relationships in ways that just wouldn’t be possible otherwise. In addition to counteracting the feelings of aloneness that come with living with an isolating disability, the process of creation is incredibly valuable for my metal health, both from an artistic creative perspective, and a capitalist productive perspective. Since beginning these classes, my artwork has been displayed in exhibitions run by the Potters’ Society, the Australian National Veterans Art Museum, and the Tathra Warf. The weekly class is my only social interaction. I am able to transport myself there on my mobility scooter. The teachers are trained and experienced in social work and disability support in addition to art practice and cater to our specific disability needs. In that environment we are safe, supported and heard in ways that we simply aren’t in the wider world. I am not alone in my fear that this safe and productive space will be taken away from us with the proposed cuts.

Canberra Potters runs 12 classes with additional supports for people with al needs and abilities each year. In these classes, they have numerous students who attend through NDIS funding either independently or with support workers. Approximately 30 students who attend Canberra Potters classes year upon year do so with NDIS funding.

I asked some of my fellow students what coming to pottery means to them in the context of the proposed cuts. Everyone is very distressed about the situation. Person one, who has been attending the same class for several years said pottery provides a chance at communication, “to hang out with our friends, have a break from home, talk to friends and make something for the day. If you feel angry you can take it out on the clay. A lot of us live with depression and that’s hard to stay at home with. If we come here, we can talk it out with our mates. I think if we lose this group, it will take a lot of us down. Most of the peers here have been coming for ages and we’ve built a friendship and to lose that is going to hurt a lot of us… There are a lot of people with mental health problems, and they need their peers and friends to lean on. You can take it out on the clay, or you can make something that you want to make, but at home we can’t do that. And I wouldn’t be able to stay at home 24/7 because I would go insane.”

Person two has been attending the class for a year or two. She comes from a family with several people with disabilities. She said “for me it’s to get away from home because it’s so stressful with the housework, and everybody’s medical issues. And it’s something that I can take home and say ‘I made that’. And I can use it, and I can put it in front of me and say look what I achieved. It helps me to manage my depression and anxiety.”

One classmate experiences a high level of mental health conditions. She has been attending for many years with the assistance of a support worker. She said “this whole week has been hard. Coming here makes you realise, what a big difference it makes for me. I’m scared of losing this. Every hour of the day is difficult. People don’t realise. It’s essential to have that. They need to know that some people are living differently to them.”

Student five said, “pottery means everything to me, it stops my suicidal thoughts. I made friends for the first time in 30 years. It gave me a purpose. It gave me a weekly structure and a sense of accomplishment because I found out I was good at this kind of art. It’s therapeutic, but I feel like I’ve actually achieved something. I’ve found out I’m good at a craft that other people like. I’ve also got a community of teachers and artists that I feel like I’m part of. Before I didn’t have any community, I was at home, with no community. My only outing was shopping, I didn’t feel like I had a personality. Although I had seen a psychologist for years, the act of pottery has given me more mental health than anything else.”

Suicide prevention and other crisis prevention benefits seemed to be a common theme in the most serious student responses. The consensus seemed to be, as person four said, “it’s the only time we get space from our own head.” But one of the teacher’s said she’d “seen enormous growth in confidence, in risk-taking, in knowledge and community connection. Seeing personal growth and the sense that people can do something that they couldn’t do before, or even begin to do. For me that’s lovely to see.”

Savings and economic issues

Examples provided in the submission already illustrate systemic ways in which the NDIA is wasting resources including creating plans with therapies not recommended by participants’ medical team. There is substantial wastage rejecting supports to which participants are entitled and using outside law firms to fight litigious cases against people with disabilities when rotating law teams often don’t even know the details of a case from one appearance to the next. Removing the right of review is not the answer to this wastage. Correct allocation of supports, in line with a rights-based approach is. So is suitable disability training of staff within the Agency.

For all the complaining about how much the NDIS costs government, what is not being discussed is that for each dollar spent on the NDIS an estimated $2.25 goes back into the wider Australian economy.[1] More than 1 in 5 Australians have a disability[2] which means every Australian knows someone with a disability or someone who works in the disability sector. Anyone can become disabled at any point in their lives. Choosing to cast people with disabilities aside at this point in history not only lacks foresight, and empathy, it is un-Australian and undemocratic. There are so many places on the big end of town that could be a source of revenue or budget savings for the government, instead of pulling services from the countries vulnerable. At a time when the world is becoming increasingly polarised, targeting the other and those on the margin, Australia should be standing up to make our country more safe for such people, not less. The NDIS always was a win:win, creating jobs and supporting the economy, not just costing the government money. But successive ministers and governments have let the media run certain narratives to the contrary. People with disabilities are nothing but a burden.

But each of us contributes in our own way. I volunteer my time with community groups, working for human rights, social justice and community cohesion. I write. I work with refugees. I teach people practical ways to help the environment. In the past 5 years, I saved the lives of nearly 500 Afghan women’s human rights defenders needing to escape the Taliban. But I don’t get paid for any of that work. Before I got sick, I served in the Australian Army. How much difference have you made, truly, with your high paying salary, that would justify cutting off life saving and basic supports to Australians with disabilities? Perhaps some of these savings should be coming from parliamentary salaries and benefits afterall, though I never argued for such cuts before.

Conclusion

A blanket cut of 50% to community participation in all plans is not safe, nor is there any way to tell if such cuts would be removing supports that weren’t reasonable and necessary. Savings should be found by reducing the NDIA’s legal expenditure, cutting down on actual dodgy providers in the fashion that participants have asked, and responding to needs for savings in accordance with the co-design principles required of a human rights approach to disability support. The Minister should not be provided with the additional powers requested under this Bill. The participants must not have their right of review withdrawn.

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[1] https://nds.org.au/news/new-modelling-shows-52-billion-benefit-of-ndis-sector-launches-election-campaign-to-warn-of-impact-o (accessed 29 May 26)

[2] https://www.abs.gov.au/media-centre/media-releases/55-million-australians-have-disability (accessed 29 May 26)