National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1158
Inquiry: The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. My recommendations
Introduction
My name is Scott Harry. I have Duchenne Muscular Dystrophy (DMD) and at 50 years old, am one of the oldest people in Australia with this condition. I live with my brother Daniel who is 47 and has the same condition. We require 24/7 physical support, as we are on assisted ventilation full-time, and our physical strength limits our movement, to the point where we cannot even turn our head, scratch an itch, feed ourselves, move our finger if it drops off our wheelchair control and even limits our ability to hold long conversations. We are only able to move our fingers to operate a mouse and drive our power wheelchairs. Below are my concerns about the legislation changes, based on my experiences before the NDIS & since the NDIS began.
We currently share a Department of Housing residence in the suburb of Taigum in Brisbane. For almost 14 years, Daniel and I have self-managed our support and lived a safe and full life thanks to the NDIS. But this could all change. This legislation proposes going back to the antiquated congregate care block funded group home situation.
Before the NDIS, Daniel & I, for 5 years, lived in a block funded group home financed by the then Disability Services Queensland. This home was controlled by a private company. Those 5 years were difficult and miserable. We had no say in who was employed to do extremely personal things such as being showered. Even if it was clear that a worker was completely unsuitable, our opinions and feelings were ignored. I was even sexually assaulted. We had no say in who we shared our house with and were forced to live with people who had extreme behaviours and quite often we were scared for our safety. I’m outlining this, not for sympathy, but to illustrate my fears of having my choice and control taken away once again.
Below are my concerns around the result of this legislation changes.
Cuts to Social & Economic Participation
In today’s society, isolation and loneliness is a plague on society. I know how hard it was for me growing up to feel included, & these cuts will have profound lifelong impact on the younger generation. Social opportunities are very limited when you can’t drive and your physical disabilities limit what you can do.
There is a lot of talk about how to ensure the safety of people with disabilities. Building community around participants is extremely important to keeping them safe. Reducing funding for social opportunities adds to these already reduced opportunities, is in turn, going to make it even harder for people with disabilities to build around themselves.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1158
We all want an inclusive society, but once again, the government seems to want to put people with disabilities back to once again limit their inclusion in society. I urge you not to cut social and economic participation funding.
Ministerial Overreach
There seems to be an intention in these proposed legislation changes to give the Minister for the NDIS way too much authoritative power. There is no point in having a system to decide what participants are entitled to, only to have one person being able to destroy a person’s life with the stroke of a pen. A scenario where this power could be misused, is if someone in the disability community used their right of free speech to continually hold the NDIS to account, the Minister would then have the power to reduce their supports and make their life extremely difficult. It would also mean they don’t have the proper support to exercise their right as a citizen, because, for example, they would not be able to participate in a protest.
No one should have the power to do this to another person, especially someone as vulnerable as a person with a disability.
Eligibility Criteria
There is provision in this legislation to prevent a person with a disability who has not had all the treatments available from accessing the NDIS.
For example, one of the treatments available for people with Duchenne Muscular Dystrophy is to use steroids. There are many possible complications and poor health outcomes from using steroids. I have chosen not to use steroids, because I have seen too many young people with my condition have other health issues worsen because they have chosen this course of treatment.
This would mean, under this proposed legislation change, a person with Duchenne Muscular Dystrophy is not eligible to access the NDIS because they refused steroid treatment.
Block funding/Commissioning Service Providers
During Minister Butler’s April National Press Club announcement, he specifically said future reform work would include “commissioning supported independent living, plan management and support co-ordination – rather than relying on a market that isn’t working.” In other words, block funding. which means taking away individualised funding. Individual funding is vital to ensure choice & control of participants.
This is where a block of money is given to a private company to provide a service, such as a group home, & the company offers people with a disability support & a place to live. People with disabilities then move into these homes and the company has full control of their support AND where they live. A massive problem arises if the participant, for any
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1158
reason wants to leave. Because the funding is tied to the company and not the individual, the participant will lose all their supports. And I know this can happen, because it happened to me. Even though where I was living was totally unsuitable, I couldn’t leave because I needed the support.
Also, if the company knows the participant is basically locked into a place, there is no incentive for the company to do the right thing for the participant. But with individual funding, if the participant is not happy, they can leave & take their funding with them. This will help ensure companies do a good job. Going back to the antiquated congregate care block funded group home situation is a huge step backward. Block funding means taking away individualised funding meaning choice and control are totally removed from the participant.
Self-Management
I feel that Daniel and I are great examples of the lives people with disabilities can live if given the right amount of support, autonomy and freedom. The best way to ensure this can happen, is through self-managing supports.
Benefits SM (Self-management)
- Costs Cost of my support using NDIS rates charged by a service provider $690,937.01 per year Cost of my support using worker rate of pay plus 10% for costs $404,701.60 per year That works out to be a saving of $286,235.41 per year That is a 41.43% saving!
As of December 2025, there was 717,000 NDIS participants, of which 26% (186,420 participant) fully or partially self-manage their plans. I could not find any data showing the number of participants who fully self-manage.
Let’s say there are 100,000 participants who fully self-manage. The average NDIS plan is $67,000 per year. That is a overall cost of $6,700,000,000. If all those participants saved 40%, that equals $26,800 per plan saved, or an overall saving of $2,680,000,000.
As you can see, self-management is a great way for the government to save money. But there are other benefits for every participant who have the ability to self-manage.
- Safety There is a wrong perception I have heard stated many times, “Having unregistered providers is not safe for participants and has led to fraud and rorts.” For 5 years I lived in a group home funded by Disability Services Queensland, run by a Registered Service Provider. There were many times I did not feel safe in those 5 years, forced to be with workers I did not trust, & forced to live with other participants I was scared of
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1158
The absolute best way to keep participants safe is by building a trusted community around them. After self-managing for 14 years, I am now surrounded by people I trust, & feel 1000 times safer. I don’t have the answers for keeping all participants safe, but for me self-management is the best way.
- Psychological benefits In the group home my self esteem was non-existent, and most days felt like a struggle. I now have a team who respects my opinion and I feel I have a purpose. It feels good when people ask, ‘who is your service provider?’ and I answer, ‘I don’t have on, I self-manage my support!’ The NDIS should focus more on building participants skills to be able to self-manage, because it is not only economically viable, but it upholds the principles of which the NDIS was built.
Conclusion
The Bill must make clear that the provider registration framework must not be used to move participants into registered-provider-only, commissioning-style or block-funded arrangements that remove genuine choice of provider. For people who self-manage or self-direct supports, the right to choose who provides support is central to safety, dignity and quality service provision.”