Dr. Noreen O'Leary:

I would add there, in respect of the assessment of needs piece, that when clinicians and teams do diagnostic assessments through assessment of needs, they are comprehensive processes and a lot of time is spent with families and with the child. Again, families share a lot of information with us that is very personal and can sometimes be somewhat traumatising for them because they may be reliving some of the hardest and challenging times in their lives. It is certainly one of the difficult aspects, sitting in a room with a family and giving a diagnosis and telling them their child's needs. Inevitably, the follow-up question is when can we start to address that. As a clinician, saying that you do not know or that it is going to be however many months or potentially years and explaining to families that even though it is written in the documentation of assessment of need, it is just about assessment not intervention, seems counterintuitive. To diagnose a need and then not be able to address is a huge issue and flaw in the system around assessment of need. As Ms Moran has said, we need a comprehensive way of doing diagnostic assessment but we also need to be able to follow that up because it can be very challenging for families and parents. For some, having the diagnosis in itself can be helpful but for many families, they need that to be followed up with action. They need to be able to build on those relationships they have developed with the clinicians and not to be coming back in two and half years' time to a whole new group of people.

Gathering the data from on the ground was also mentioned. One of the things that is mentioned in the roadmaps that is for roll-out this year, is an information management system for disability services because at the moment, we do not have anything on a national level.

That is even quantitative data in terms of numbers. It is acknowledged - I do not think I addressed it earlier with one of the Senator's colleagues - that there is a discrepancy between figures in the action plan and in the road map. In the road map, it is caveated in the figures that are quoted that there may be discrepancies because, basically, it is manual data collection as opposed to having an electronic integrated system. That management system is meant to be rolled out this year. It would be fantastic within that if as well as quantitative measures of numbers of children and numbers of appointments, we could actually gather more qualitative or descriptive data around types of practice, what kinds in interventions there are and what the goals are for children. I know from linking in with some parent representatives that families would love something more technology-focused where they could upload information about their child. They could access their goals and link in with the teams rather than where families say they get questionnaires every time and have to refill them out. That is a huge amount of administrative work for a family who are doing a lot. Every time people retell their story, it is very emotional.