Ms Fiona Walsh:

The reason we put off moving to Cork was that we were told Zoe would have two hours early intervention preschool here. Since then, the preschool in question has shut down. There is no early intervention preschool for a child like Zoe in Cork. There is no support for us in the public system. We have not seen it anyway. I have just gone through the process of completing her individualised family service plan. We were told to pick three areas we would like to work on. This is a child who can walk very short distances, cannot talk and spends hours crying because she is frustrated and cannot communicate. She has issues with her diet and medical issues. When it comes to picking three areas, where do you start?

We pay for therapy ourselves. We are very fortunate to be in a position to do that so we have to take her out of school several days a week to drive her to physiotherapy and occupational therapy, which we do in the house. We had been doing speech and language therapy online. That was not really appropriate for Zoe because she does not look at a screen. She has a condition called cortical visual impairment, CVI, so she is effectively blind. Looking at a screen does not work. The cost of that every week is €80 for physiotherapy and €80 for occupational therapy. When we were doing the speech and language therapy, that cost was €130. We will be doing intensive therapy next September with a group that comes over from the NAPA Center in Boston and that will cost €10,000. We have travelled to Boston, which probably cost us €15,000 between accommodation, the therapy and flights. We are able to do that. We are very lucky.

I look at other children going into Zoe's school in wheelchairs and I think they should not be in wheelchairs. They could be walking, they could be toilet trained and they could be self-feeding. Zoe does not use a toilet at the moment. If she had an individual SNA, we might be able to work towards that but she does not have one. They have too many children to look after. Walking is such a basic right for children. One of the major things Zoe can do now is take a couple of steps around our house. When she is hungry, she will walk to the kitchen. That is her communication. I feel that the job of an occupational therapist now is to decide which wheelchair to put a child in, rather than to work on helping Zoe feed or on her sensory issues or do timed toileting with her. It seems more like facilitating the child to be disabled rather than helping the child to progress as much as he or she can.

The Deputy asked about hope. I do not have much hope with the current system. Hopefully, we will get to 90 years old and Zoe will still be living with us. If the system remains as it is, we will be changing a 40-year-old's nappies. She will not be able to tell us when she is hungry. She will be crying because she is tired and we will not know whether it is tiredness. We will be going for drives with her to try to relax her.

Regarding speech and language therapy in the school, we have worked with companies from England and tried assistive technology with her but that needs to be done every day in school. They need more staff to be able to do that. They need the specialist speech and language therapist within that setting to be able to do that but none is provided. Some day, down the track, we will not be able to do this. What happens to Zoe then? I do not have hope. I do not want my other children to have to look after Zoe when she is older. I want her to be as independent as she can be. I want her to be able to walk around the house, pick up a spoon or tell me she is hungry. I want her to be able to go to bed when she wants to go to bed.