Ms Fiona Walsh:

The Deputy asked how the roll-out of progressing disabilities is going. I guess it has just transitioned over to that here in Cork. As I said earlier, I was told to pick three things that I would like to work on. That is just not practical. I got a lovely type-out of what those three things are maybe two months ago and nothing has been done since then. I do not call it progressing disabilities; it is regressing disabilities.

I have no therapist. I spoke to somebody on a Zoom call such as this and that is my only access so far to the progressing disability services, PDS. That is not good enough. I want somebody to come and do practical things with my daughter. I do not want it on paper; I want it in person. I am baffled by what the progressing disabilities is meant to be achieving because I am not seeing any results from it here. I am part of a Cork mum's Facebook group and there has been no positive feedback about it. I understand much of that is down to staffing.

There is one physiotherapist who works part time for 800 children under the foundation that our daughter is with. Obviously, he will never be able to see all our children. We should be getting weekly physiotherapy. He has 800 children to see. In a part-time role, how is that possible? Maybe it looks okay on paper. I have seen the videos and thought that this could be a step forward. It has not been.

In Australia, the way it works is you do not go to somebody and be assessed. You say that your goals for this year would be, for example, for us this year if I lived in Australia, that I would love for Zoe to be able to put her clothes on in the morning and the NDIS would fund a carer to come in in the morning and work on that with Zoe. I would say the carer might be there for an hour in the morning helping Zoe get dressed and feeding her breakfast, not like I am while looking after two other kids but focusing on getting her to use a spoon or to pick up a cup and drink herself, and trying to make Zoe's life better and try to give her autonomy.

She needs physiotherapy because she needs to walk up steps. We live in a two-storey house and her parents cannot lift her up and down the stairs forever, so the physiotherapy goal might be walking up steps for the year. Then, we talk about occupational therapy. We would say that Zoe needs sensory breaks and needs a sensory room, so we might put a light in, and the occupational therapist would work on different strategies with us. We would have weekly sessions with the therapist whereas my CDKL5 family in Sydney have two hours of OT per week.

On speech and language, we would be working on different strategies with them but we would get to pick the therapist that we think works for us. It would not be that this is the one person available and this is who we get because of where we live. My daughter’s needs are very different from what that person has trained in, so I might want to go to see another therapist. We have the choice to do that, we are given the budget and we have control of the budget. We then pick out where our goals lie and work on that for the year, and it is reassessed at the end of that year.

It is so far away from this PDS, where we pick three things to work on. It is chalk and cheese.