Personal Submission on Proposed Changes to the NDIS Bill

Dear Senate Community Affairs Legislation Committee Members,

Re: Personal Submission on Proposed Changes to the NDIS Bill

I write as the sister, advocate, and lifelong support person of my brother , who lives with Angelman syndrome.

This submission is not theoretical. It reflects our daily reality, ’s safety, his dignity, and my capacity to continue supporting him now that our parents are no longer here. I respectfully ask that you consider the lived experience of people with profound disability when assessing the proposed changes to the National Disability Insurance Scheme.

People with Angelma syndrome represent the original intent of the NDIS, individuals with permanent, significant, and complex disabilities requiring lifelong, individualised support. will never live independently. He cannot communicate verbally and has no understanding of danger. His safety, wellbeing, and participation depend entirely on the presence of consistent, skilled support.

While I recognise the importance of financial sustainability, the NDIS is not merely a budgetary instrument, it is a human rights framework. Australia is a signatory to the United Nations Convention on the Rights of Persons with Disabilities, which affirms the right of people with disabilities to live with dignity, participate in the community, and receive the supports necessary to do so. Any reform must remain consistent with these obligations.

  requires 24/7 high-intensity support due to his severe intellectual disability,

communication impairment, behavioural complexity, and lack of safety awareness. Even minor reductions in support can result in immediate and serious risk. The proposed legislative changes introduce powers that enable broad or standardised reductions across support categories, as well as tighter controls on what supports are funded. These create a significant risk for people like , whose needs cannot be safely met within standardised models or reduced funding envelopes. I strongly urge the Committee to recognises a protected cohort of participants with profound and lifelong disability, for whom standardised cost containment measures are unsafe and inappropriate.

Since the death of our mother, I have taken on a role that extends far beyond any reasonable expectation of sibling responsibility. Supporting involves constant supervision, care, medical coordination, behavioura support, and interpreting his needs without reliable communication. This is not informal care, it is specialised disability support. The proposed framework risks assuming that families will absorb reductions in funded supports, making this work invisible and unsustainable. I cannot

• replace trained, funded support without serious consequences to my own health, employment, and long term ability to support .

When has appropriate and consistent support, he is able to safely engage with the world. He goes for walks, participates in sensory activities, and experiences genuine and meaningful moments of joy and connection. However, when support is reduced or inconsistent, his world quickly becomes unsafe, isolated and distressing. cannot tell you when something is wrong. If his needs are not understood, his distress and behaviours of concern escalate. Without adequate supervision, he may unknowingly place himself in danger. I have seen reduced support lead directly to increased agitation, unsafe situations, breakdown of routine, and significant strain on both support staff and me. These are not hypothetical risks, they are predictable outcomes.

I am particularly concerned about proposed reductions to social and community participation supports. In ’s case, these changes are expected to result in approximately a 50% reduction in his community access supports within his plan. Community access is not a discretionary extra, it is essential to his emotional regulation, physical health, and connection to the world. Reducing this support will significantly shrink his life, increasing isolation, frustration, and behavioural distress. For a person with no reliable verbal communication, this level of isolation is profoundly harmful and raises serious concerns regarding his right to community inclusion.

  ’s Supported Independent Living arrangement already needs increased funding,

not a reduction of any type, because it has the potential to be totally individualised and based on his functional needs, including appropriate staffing levels. While future funding and commissioning models are still being developed, there is a clear risk that standardisation and cost constraints will override individual need. We have already experienced the consequences of stretched supports, unsafe environments and family crisis. SIL must remain flexible, accountable, and tailored to each individual.

  also relies on allied health supports, including speech therapy, occupational

therapy, physiotherapy, and behaviour support. These services are not optional, they are essential in maintaining his safety, communication, and overall functioning. Reductions to these supports will lead to regression, increased behavioural risks, and greater long- term cost to both and the system.

   ’s severe communication impairment makes him particularly vulnerable. He

cannot reliably report pain, distress, or harm. This creates a heightened duty of care on the systems that support him. Communication support is central to his safety and dignity. Any reduction in support without strengthened safeguards risks serious harm.

I strongly support the need for independent review rights for all plan changes, as well as ongoing parliamentary oversight and genuine co-design with people with disability and

• Their families.

• Many of the most significant impacts of these reforms will occur through future rules, making transparency and accountability essential.

Ultimately, the supports receives determine whether he lives a safe and meaningful life or one defined by risk, isolation, and distress. They also determine whether I can continue to support him without sacrificing my own health, employment, and future. This is not simply a funding issue, it is a matter of human rights, safeguarding, and social responsibility.

I would welcome the opportunity for and I to meet with the Committee so you can genuinely understand what these decisions mean in practice. Seeing and how he experiences the world would provide insight that cannot be fully captured in writing.

Thank you for your consideration.