Submission 3352 — Name Withheld — NDIS Future Generations Bill

Submission to the Senate Inquiry

National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

Submission from , Father of

To the Committee / Inquiry Secretariat,

My name is                 . I am the father of                               , who lives with a rare, complex and

lifelong disability. has Trichothiodystrophy, epilepsy, intellectual disability, severe mobility impairment, PEG feeding needs, respiratory risks, continence needs and high daily support requirements.

I am making this submission as ’s father, and as someone who has lived the reality of complex disability within my family for many years.

is not a number, a budget item, or a case file. He is my son. He is loved, valued and irreplaceable. He belongs at home with us, where he is known, understood and protected.

As a family, we have had to band together to keep safe and at home. This has not been easy. It has required constant commitment from his mother, from me, from our family, and from the people around him who truly understand him. ’s needs do not stop at the end of a shift, at night, or when funding becomes difficult. His disability is part of every moment of his life, and his support has to be consistent, skilled and compassionate.

cannot be left alone. His support needs continue across the whole day and night. He requires support with personal care, PEG feeding, positioning, hoisting, continence care, respiratory monitoring, seizure risk, hygiene, communication, emotional regulation, transfers, safety and community access. These supports are not optional. They are the difference between remaining safe at home with his family, or being placed at risk.

Over the years, we have seen what happens when carers do not understand . At times, he has been subjected to cruelty, roughness, impatience or treatment that did not respect who he is as a person. Some carers did not understand his disability, his communication, his fear, his distress, his body, or his need for patience and gentleness. cannot always explain what has happened to him in words. That makes him vulnerable. It also makes it even more important that the people supporting him are trained, familiar, respectful and properly supervised.

No person with disability should be treated harshly because they cannot communicate in the same way as others. No family should have to fear that their loved one will be misunderstood, mishandled or treated without dignity because the support system does not provide the right people, the right training, or enough continuity.

This is why keeping at home matters so much to us. Home is not just a place. It is where his family notices the small signs others may miss. It is where we know when his breathing changes, when he is frightened, when he is tired, when he is uncomfortable, when he is about to seize, when he is in pain, or when his body is not right. It is where his life is understood in real time.

As parents, we have carried an enormous amount of responsibility. We have supported through medical crises, hospital admissions, respiratory distress, seizures, falls, PEG feeding,

oxygen use, continence care and the constant unpredictability of his condition. We have also carried emotional, physical and financial pressure for many years.

We want to remain at home. That is where he is safest. But keeping him at home requires proper support. It requires support workers who know his body, his communication, his distress signs, his fatigue signs, his breathing changes, his seizure risks and his routines. It requires enough workers at the right times, especially during high-risk personal care, hoisting, transfers, overnight support and disability-related health tasks.

When systems fail to understand complex disability, families like ours are left trying to explain the same things over and over again. We are asked for more evidence, more reports, more quotes and more explanations, while still managing the real-life care of a person whose needs do not stop.

I ask this inquiry to understand that complex disability cannot be properly assessed from short snapshots, general assumptions, or basic care models. People like require an individualised understanding of their actual daily life. His needs are not theoretical. They are lived every day in our home.

I also ask that the voices of families be properly respected. Parents and carers often hold years of detailed knowledge about the person they support. That knowledge should not be dismissed simply

because it comes from family. In                's case, his mother      has documented his life, his

care needs, his risks and his supports in extraordinary detail because she knows how easily complex disability can be misunderstood.

Families should not have to fight so hard to keep a severely disabled person safe at home. We should not have to prove, again and again, that a person with profound and complex disability needs consistent, skilled and adequate support.

I ask the inquiry to consider the following:

1. People with complex lifelong disability must be assessed according to their actual functional needs, not assumptions about what families can continue to absorb.

2. Informal family support has limits. Parents age, become unwell, and cannot safely replace properly funded disability supports.

3. People with communication difficulties are especially vulnerable to cruelty, rough handling, neglect, impatience and misunderstanding.

4. Familiar, trained and respectful support workers are essential for people like .

5. Disability-related health supports, personal care, PEG feeding, respiratory monitoring, seizure response, continence care and manual handling must be recognised as essential supports when they are required for the person to live safely.

6. Families need clear written communication, not confusing or changing verbal instructions.

7. Evidence from families, support workers, treating professionals and long-term carers should be taken seriously.

8. People with complex disability should be supported to remain safely at home with their families when that is their best and safest environment. ’s life matters. His safety matters. His dignity matters. Our family’s ability to keep him at home matters.

As his father, I ask this inquiry to listen to families like ours. We are not asking for special treatment. We are asking for to be seen as a person, to be protected from harm, and to receive the support he needs to live safely and with dignity at home.

Yours sincerely,

Father of