Submission 209

Submission to the Senate Community Affairs Committee NDIS Future Generations Bill 2026

Submission to the Senate Community Affairs Committee

NDIS Future Generations Bill 2026

My name is and I am parent of a 33 year-old man who has disability with high and complex support needs. We live in – a launch site of NDIS in 2013. We know first-hand the benefits of NDIS, as individualised funding has been integral in supporting my son to lead an ordinary life, included in our community as an active and valued citizen.

Importantly the NDIS provides a framework for our nation to uphold the UN Convention on the Rights of People with Disability (UNCRPD).

I am afraid the NDIS Future Generations Bill 2026 undermines the rights of people with disability and sets us back on a course where people with disability must be congregated with others in order to receive support. The Bill undermines choice and control, natural justice to challenge government decisions and brings forth austerity measures for disability support.

This is the antithesis of the NDIS Act 2013.

I do agree though NDIS needs reform. The implementation of the NDIS saw the removal of important community supports – to which we owe “the only life boat in the ocean” analogy.

However, I believe the NDIS Future Generations Bill 2026 is ultimately a cynical cost- cutting measure. It has been introduced against a backdrop of highly publicised allegations of fraud and rorting — amplified through media briefings ahead of the announcements — which appear designed to manufacture public consent for harsh funding cuts.

I am also tired. I am tired of writing submissions, participating in consultations and defending the rights of people with disability to live with dignity, choice and freedom, included in our communities.

Submission 209

Submission to the Senate Community Affairs Committee NDIS Future Generations Bill 2026

As I highlight my concerns with the Bill, I would also ask that changes to the NDIS legislation and policy give weight to the lived experience of people with disability and clearly demonstrate how feedback informs reform.

Background

My son is an NDIS participant. He is 33 years old, loves cricket, swimming and brewing his own beer.

   has very complex support needs.        requires support with all daily activities

and has significant disability related health needs. He is nourished by PEGJ (jejunal tube), needs frequent respiratory support in the form of monitoring of oxygen saturation, suctioning, non-invasive ventilation, nebuliser and oxygen therapy.

has epilepsy and periodic seizure activity. He has limited movement and uses a wheelchair for mobility. has complex communication needs and requires “smart communication partners” who know his unique communication and can assist with his PODD (pragmatically organised dynamic display) communication system.

      lives in his own home and has support workers assisting him around the clock.

His support workers are specifically trained in all ’s care needs and have developed a high level of skill in safely supporting health and disability needs as well as supporting his need for community inclusion.

    shares his home with his friend and housemate            .      does not have a

disability. I live in immediate neighbourhood and see him most days.

    enjoys being active and involved in the community.      was a long-time

member of Newcastle University Toastmasters Club and contributes to the accessibility and inclusion of our community through his audits of community events and venues.

We have been self-managing s NDIS plan and directly employing his support since 2014. Prior to this we ‘self managed’ state government funding, where we were “allowed” to recruit ’s support workers who were then employed by a service provider.

With NDIS funding we had the ability to move to direct employment of s support team. While I take on additional responsibility of being the employer of

Submission 209

Submission to the Senate Community Affairs Committee NDIS Future Generations Bill 2026

support workers, the benefits are significant, cost effective and enable to be

supported safely and so he may enjoy an ordinary life included in the community.

Due to the complexity of direct employment, is not actively involved in the

administration processes. He is however, actively involved in the recruitment and

training of support workers, how he is supported and how he lives his life. Indeed his

involvement is testament to the success of direct employment.

In this submission I raise my specific concerns regarding

• Registration for High risk support

• I-Can assessment, algorithms and limits to external merits appeals

• 50% cut to social and community funding

Generally, I reintegrate that reforms must demonstrate the upholding of the

convention on the rights of people with disability and be informed by lived

experience.

Registration for High risk supports

As you will have noted we directly employ support workers to assist my son is his daily

living supports at home and in the community. These supports are indeed high risk,

which is precisely why we have a specially trained team of support workers to assist

him.

I believe registration of high risk supports requires a carve out for family governed / self

directed supports. Like support arrangements, these arrangements are highly

individualised to the support needs of the person.

     support arrangement are safer and more stable than anything that could

be provided by a registered provider, and far more cost effective.

I-Can assessment, algorithms and limits to external merit appeals

Together these are a triple whammy undermining core tenets of the NDIS as we

currently know it.

Submission 209

Submission to the Senate Community Affairs Committee NDIS Future Generations Bill 2026

I am concerned about I-Can or any other standardised assessment accurately capturing a person’s support needs AND factoring in their personal circumstances, lifestyle choices, living arrangements and life aspirations. It is unclear how much weight this information will carry in budget decisions, how assessors will interpret them, and the ability to challenge decisions if personal circumstances were not properly recognised.

This will be exasperated by funding determinations by algorithm. Human discretion and intervention are a vital requirement in ensuring budget allocations are right for each person.

External merits review is one of the few independent checks on NDIA decision-making. And is an important safeguard against errors, systemic bias, and cost-driven decision-making. The limits prosed in the legislation undermine natural justice and will potentially have dire outcomes for people with disability.

50% cut to social and community funding

My son requires someone skilled in meeting his health care needs available to him at all times.

If there is a cut to his social and community funding he will need to spend more time at home. Will there be an increase in funding for home to make up the shortfall?

Perhaps most concerning about this policy direction is it shows how utterly out of touch the government is when it comes to people with high and complex support needs.

The other outcome of this policy decision is that all community supports will need to be delivered congregated with other people with disability.

Imagine trying to pursue your particular interest or going to a doctor’s appointment with another person with disability in tow because that’s how the funding works!

In Summary

Submission 209

Submission to the Senate Community Affairs Committee NDIS Future Generations Bill 2026

• Protect self-management and family-governed and self directed arrangements.

• Ensure people with disability are not pushed into provider models that do not suit their lives or needs.

• Ensure assessment processes properly reflect the realities and complexity of supporting people with high and complex support needs

• Maintain strong review and appeal rights for participants and families

• Reject proposals that systematically reduce social and community participation supports.

• Ensure any reforms do not undermine Australia’s commitments under the United Nations Convention on the Rights of Persons with Disabilities. In fact reforms should enhance rights.

• Ensure people with disability and families are meaningfully included in reform processes.

• Give genuine weight to the lived experience of people with disability and those alongside them.

• Clearly demonstrate how feedback has informed reform and decision- making.

Thank you for taking the time to read my submission.