Submission 711
Hello, I am a mother and primary carer of my son. He is non-verbal and has ongoing support needs.
NDIS means a lot to me and my family right now.
As a parent, I see every day how important these supports are in real life. They are not extras. They are part of what helps him stay connected, active, regulated, and involved in life outside the home. Without them, life becomes much harder, not just for him, but for all of us.
He responds extremely positively to one-on-one support work and consistently shows a level of excitement and engagement that is rare in other areas of his life. Before support outings, he is often visibly enthusiastic and eager to participate, which shows the strong emotional value these sessions have for him.
He needs support in social situations and in the community. He also needs help to get outside, go for walks, stay active, and have something meaningful to do. It can often be diƯicult to encourage him to engage in physical activity independently. However, during one-on-one support sessions, he becomes much more active and motivated. He particularly enjoys going to parks, spending time outdoors, and being in natural environments. These experiences encourage movement, exploration, and participation in the broader community in a way that would otherwise be very diƯicult to facilitate.
From my experience, and from the perspective of the people who support him, these supports make a real diƯerence to his mood, behaviour, and wellbeing. When he has regular support, he is more engaged, has more positive experiences, and has the chance to build communication skills, social awareness, confidence, emotional regulation, and connection with another person. These supports also help him safely access community, social, and recreational activities in an inclusive and supervised way.
When he does not have that support, it aƯects him in a very real way. He can become more angry, irritated, and unsettled. He has fewer things to look forward to, and daily life becomes harder for him. I have also noticed that when sessions are cancelled or cannot go ahead, he becomes visibly disappointed and saddened. This shows how important these outings have become to his routine, emotional wellbeing, and overall quality of life.
These supports also matter a lot for our family. Caring for a child with high needs is not just emotionally demanding, it is also physically and mentally exhausting. Having a support worker helps ease some of that burden. It gives parents a little breathing space to manage other responsibilities, recover, and keep going. That matters more than people realise.
Submission 711
The financial side matters too. Therapy is expensive, disability-related costs add up, and NDIS funding helps make the support he needs actually possible. Without that funding, it would place a much greater strain on our family.
If ’s social and community supports were reduced or removed, it would aƯect him in a very real way. He would lose opportunities to get out into the community, practise his communication and social skills, stay active, build important connections, and take part in meaningful activities that support his development and wellbeing. It would also place more pressure on our family and make daily life much harder.
For us, NDIS funding is not just about services on paper. It is what helps make everyday life manageable. It helps my son have a fuller life, and it helps our family keep supporting him in a way that is sustainable.
Response to Reflection Question
What would these changes to the definition of permanence mean for you?
If the definition of permanence changes in a way that makes it harder to recognise ongoing disability-related needs, it would be very worrying for me as a parent.
He needs are real and ongoing. Even if some things improve over time, that does not mean he no longer needs support. In reality, he still needs help with communication, regulation, social participation, community access, and daily functioning. These are not short-term issues that simply disappear. They are part of his everyday life.
If permanence is interpreted too narrowly, I worry that people may assume he will “grow out of” needs that are actually long-term and still require support. That would have a very real impact on him. He could lose access to supports that are helping him stay connected, active, regulated, and engaged in the community.
It would also have a major impact on our family. Without the right level of support, the pressure on us would increase emotionally, physically, mentally, and financially. It would make daily life much harder and less sustainable.
For me, the concern is not just about wording. It is about whether my son’s real and ongoing needs will continue to be recognised properly. Changes to the definition of permanence could create more uncertainty for families like ours, even when the support needs are clearly still there.
Submission 711
Thank you for the opportunity to provide this feedback. These supports make a meaningful diƯerence to my son’s life and to our family’s ability to continue caring for him in a sustainable way.