Dr. Noreen O'Leary:

I think part of the reason is a lack of proactive planning. Our history has been very reactive to the needs of children, young people and adults with disabilities. The needs change over time. We can see that between 2013 and 2023, there was an increase of over 2% in the number of children who need access to children's disability teams but we are not planning proactively for that. There is also the issue that providing services for children with disability is not as simple or straightforward as saying that if we do X, we will get Y and the issue will then be addressed and fixed. As Ms Moran said, most children with complex needs will need supports of different natures at different times. In health services, we are sometimes more focused on things in which we can see clear inputs and outputs. Disability services do not lend themselves to that. They are much more complex. You cannot measure success by throughput. You measure by functional gains. There are intangible things such as family functioning, children's well-being and their participation in their community. They are perhaps not intangible as they are measurable but they are not as clear. Those are complex things to measure and to evaluate.

As Senator Clonan pointed out, as a country, the history of how we have supported and treated people with disabilities has not always been good, and that is potentially the case even now. This is not a period on which history will look kindly. Perhaps in other countries there has been more proactive planning and a greater acknowledgement that current and future needs need to be looked at. It is not that there is one perfect service but if we look at, say, Australia, it moved from have a service in which services were delivered by the state to one in which budgets are now provided to families individually through the national disability insurance scheme. While it is not perfect and issues have certainly arisen there, what it showed was a responsiveness to the need that was there, to what families themselves were saying they wanted and to their autonomy, and it showed trust that families may know best what their child needs.

It is not that families need to be the people who deliver the service. I want to touch on that as well. The Senator mentioned that he has had one consultation for his son. It is really upsetting to hear a measure of deterioration in the service provided because no clinician would want that to be the service. I imagine for the family it is hugely difficult to see that.

It is important to note that there has been a cultural move away from the idea of providing one-to-one direct therapies, which are often seen as the medical model. Direct, clinician-supported interventions need to be part of any effective model of disability services. Yes, we need to support families and carers and provide training and education. However, there is a worry that we are moving so far away from it that is almost the case that too far east is west and that we are losing a very important part of what is necessary. Families are telling us that this is what they want when it is appropriate. This issue comes back to the cultural piece of listening to the families, children and young people themselves about what they need because actually, they know best about what they need, and we need to listen to that. Culturally, we do not have a strong history of that. It is something to reflect on.