Submission 2190

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au

Date: 29th May 2026

We welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am a family member of an NDIS participant

I apologise if I have not submitted this submission in the format required. I feel there has not been enough time for me to express my views and it is the best I can do in the time I have. Please consider my point of view.

NDIS Submission

My name is . I have a daughter with a rare genetic condition. She has generalised muscle weakness that means she is confined to a wheelchair and needs assistance with most tasks. Despite her disabilities she has completed a journalism degree, is a working journalist and lives independently. My wife, and I are proud parents.

Her mother and I were her only carers between 1999 and 2017. There was no NDIS and we relied on a patchwork of support from various sources, primarily referred by the Royal Children’s Hospital in Melbourne. Incidentally, her neurologist was professor Monique Ryan who is now the member for Kooyong.

We were able to access a motorised wheelchair, various aids to manage her disability and 4 hours respite from the council every fortnight with a co-payment.

It was a difficult time for our family with two other kids who missed out on our attention because we were always busy caring for our daughter and attending hospital visits, once or twice a week in the early days.

Taking responsibility and trying to make the best of our situation took its toll on our family. We had a mortgage to pay and all the expenses of trying to raise three children. Caring for our daughter was a full-time job. In the early days it was 24/7 with no days off.

We both tried to work, finding childcare and school with support. It was exhausting trying to hold down jobs and also trying to ensure that our daughter’s needs were met at childcare and school. Often, we had to fight for basic facilities others took for granted, such as a wheelchair accessible toilet.

Submission 2190

We collapsed a couple of times under the strain. Her mother had to reduce the hours she worked and to stop working all together. As a one income family, we were barely able to make our mortgage payments and we missed a few.

My family do not want to tell our story to solicit pity. It is personal and intrusive to explain how disability has impacted us. We do not want to be treated differently. We do not want to make ourselves vulnerable to unkind people. We would like to participate in this society as equals, with dignity. We are constantly pushing back at people who can only see the disability and not the possibility of the person behind that disability.

We are supporters of the NDIS

The NDIS is a life saver for my family. Without NDIS support my family would have collapsed. Not only would society have lost the contribution of my daughter, but also myself, my wife and possibly my two other children. The flow on effects of not supporting a person with disabilities is grossly underestimated in the community.

However, this submission is made with the experience of disability and interaction with the NDIS. Any discussion of NDIS public policy should be driven by people with disabilities and their families.

Why is the NDIS costing so Much?

Reining in the growing cost of the NDIS by cutting 160,000 participants is the worst way to stop the growth of the NDIS. We need to ask why the cost has escalated so much. After years of experience, we can tell you the costs are escalating because the NDIA does not deliver any services. All supplies, support services, health professionals, accommodation, and even management and administration provided by the NDIS are outsourced to private providers.

There are huge conflicts of interest issues that end up being resolved by cutting the very participants they are meant to serve. The profits of the service providers are always put ahead of the participants. Even the best providers and not for profits put their financial needs ahead of participants.

Fraud is only a tiny part of the problem

We are not alleging fraud or corruption are the cause of rising costs. It is minor part of that increase. Where we have seen it happen, like most participants who are able, we have reported it or taken steps to stop that fraud or corruption. It can be identified and prosecuted if the NDIA was properly resourced to find it and root it out. But what a waste of money that would be - to chew up valuable resources in compliance. Outsourcing creates a huge regulatory problem that are expensive to fix and diverts resources into activities that do nothing to provide genuinely required services.

Outsourcing is the problem

Submission 2190

The outsourcing model of service delivery is the most expensive way to deliver services. The idea that the market will regulate the industry is a fantasy. Participants do not have the market knowledge to choose the most effective service to meet their needs. Often the participants are only given a choice of meeting their needs or not.

The NDIS is like a honey pot to service providers. They just have to get a health professional to say there is a need and then they can charge whatever they like. Wiley salespeople can work out a pitch that fits the needs of individuals. The cost is not something participants can assess. The system is designed like that. It is hard for a participant to argue the cost. Doing so would jeopardise their access to equipment or services they need.

The conflict of interest stretches to the relationships allied health professionals, plan managers and co-ordinators have with service providers, suppliers and disability workers. They all have their own interests to protect and the participants are at their mercy. The concept of choice and control is distorted by these relationships.

These conflicts of interest result in

• wheelchairs costing more than a brand-new car.

• Disability support workers scheduled to meet the needs of the service provider rather than the participant. This can cost ten times what it should.

• Assistive technology costing tens of thousands of dollars more than it should have.

• Accommodation costing millions of dollars paid for by the NDIS & Government benefits only to be become the property of NDIS millionaires – a massive transfer of wealth to private businesses and individuals. The purpose of SDA funding has become morphed into a wealth accumulation vehicle rather than a service to provide housing for people with a disability.

• Community participation services, transport, allied health and every service you can mention have become self-generating money-making machines that have distorted the need they are set up to serve.

You end up with opportunistic people circling people with a disability looking for ways to tap into their funding rather than meeting their needs. The most venerable are taken advantage off and even those of us who have experience with managing service providers can be taken advantage off.

Throwing people out of the system rather than addressing the real problem

It is easy to make hasty decisions to cut budgets and throw people out of the system. You can talk about “social licence” if you only tell people the headline figure and not

Submission 2190

what is happening. It is not the people with a disability that are causing the budget to blow out. It is the design of the system and the conflicts of interest inherent in it.

My family understand why the proposed cuts to the NDIS are distressing. We can see how the 160,000 people with disabilities and their families feel. The support provided to them is invaluable for keeping their families together and coping with the huge responsibilities they have.

Cost shifting to the states and territories will harm people

Again, it is about system design. Lazy politicians are trying to shift the responsibility onto someone else without any funding or plan to support those people.

• The States are not ready. Even if they start now they are all saying they do not have the resources to deliver the same services.

• This decision is going to segment decisions between state and federal governments. People may have multiple disabilities. It is now going to add another layer of confusion about who should provide the service. We are headed towards another battle between state and federal responsibility, each blaming the other for non-delivery or failure.

• More bureaucracy will make delivery more expensive. We will have more resources absorbed into 10 separate administrations with 10 sets of rules, and inconsistency in delivery of services between the states. This will be compounded as the political persuasion of each government changes.

With all the waste in setting up 10 different systems it will be the receivers of services that will suffer. Scarce resources will be squandered in building parallel systems and duplication. These are the reasons why the NDIS was established in the first place.

Put participants First

The central thrust of my submission is that it is the design and model of the NDIS that has made it so expensive. Our experience using the NDIS have made its flaws, failures and cost blow outs obvious to us as participants.

The design of the system puts participants last. Contrary to the rhetoric about choice and control at every step someone else’s interest comes first. The financial needs of the providers come before the needs of participants.

We need investment to improve the NDIA as an agency

There is also a problem with the NDIA that makes the system even more expensive.

• The bureaucratic need to tick a box comes before the commonsense delivery of support. Excessive reports, evidence, trials, records and Allied health

Submission 2190

assessments are demanded. None of which are read. Decisions are made without proper explanation.

• There seems to be no service standard for decision making. By the time a decision is made new problems have arisen and new decisions need to be made.

• The communication is appalling

  • Clients receive multiple letters from one interaction and the letters do not make sense. They are obviously written to cover themselves against complaint and do not answer any questions or convey any meaningful information. A trained lawyer would find it difficult to understand the letters let alone the average punter that is trying to get funding for a service they need.
  • It is impossible to find someone who can answer your questions and give you clarity.
  • It can take 6 months to a year to get an answer and it is never clear how the decision was made and on what basis.
  • You have to tell your story multiple times. You get a different person every time who has never seen the person with a disability. They can ask the most frustratingly obvious questions because they only know the person as an NDIS number.
  • Your dignity is violated multiple times by the asking of intrusive questions over and over again.

The cost blows out because of these delays. Moreover, the frustration and lack of service leads to an unhealthy relationship with the NDIA. This is exploited by service providers.

We have never wanted to publicly criticise the NDIA because we value the support provided by the NDIS. We not want to undermine its’ support among people who do not use it. However, the delays have been costly. In one instance it took the NDIS 3 years to make a decision to purchase a $4000 portable hoist, in the meantime they paid over $20,000 to hire it from the provider.

We have to shift the NDIS to its primary purpose: that of providing support to people with a disability rather than a vehicle for the private sector to grow their wealth. Its aim should be to alleviate the pain and suffering of people with a disability, thereby enabling them and their families to actively participate in society, contribute and receive the benefits of our society like everyone else.

Submission 2190

If you do not have a disability, you would expect government services to take into account your personal circumstances and provides services like disaster relief, education and healthcare so that you can flourish, contribute and enjoy life. It should be the same for people with a disability.

Conclusion

Bringing Service provision in house would enable focus on participants first. It will not be distorted by conflicts of interests and having to meet the need for profit. That coupled with investment in improving the NDIA as a client focused agency that delivers efficiently with service standards would reduce the cost of the NDIS or at least arrest it growth.

The government could:

• Use its bulk buying power to reduce the cost.

• Investigate how to provide supplies such as wheelchairs, mobility aids and assistive technology more cost effectively.

• Build public housing stock for people with a disability, thereby reducing the cost of SDA funding over time.

$50 billion a year could add public assets for people with a disability rather than providing a gift to the private sector for profit making.

The possibilities are endless.