Ms Helen Holmes:

In respect of the reconfiguration, it feels like the goalposts are being moved for parents. The system was one way and we were promised all the shiny new things that would come along with the new progressing disability services, PDS, programme and the children’s disability network teams, CDNTs, but they have not transpired. It is now a more challenging system to navigate. It seems to focus on a family-centred model, which is really good, but there is no therapist to back up or support parents to run that. We are kind of left in limbo. The issue arises where children are put on a list on the basis of priority. Who wants to hear whether their child is priority number one or number four? That just angers parents further. A parent's child is his or her child and that child is entitled to services but, as we know, the lists are not moving in the proper order.

There have been issues even with parents whose children were at the top of the priority list. One parent who attended an intervention recently with therapists on Armagh Road was asked to bring home the child because the child had behavioural issues. If a psychologist, an occupational therapist, OT, a speech and language therapist, SLT, and a disability manager are telling a parent that he or she will have to come back without the child, what kind of hope does that leave the parent regarding what kind of services are going to come? That parent is undergoing a block of parental courses every week. She is going through it and trying to get some strategies to help her son, but her son is in desperate need of intervention and respite, as are the wider family, yet they are being turned away. There is nobody there to help them, and that is the last thing we want to hear as parents.

From the campaign’s perspective, we met the Minister of State, Deputy Rabbitte, in February. She assured us money was not an issue in respect of therapists and that there was plenty of money in the pot, with the same old story about recruitment. I do not know where the recruits are being placed because we are not seeing things happening as quickly as we would like them to. The recommendation referred, in particular, to OT and speech and language assistants coming in and supporting the therapists, which would take a little pressure off. The parental course I am attending is, like many of them, hosted by two senior psychologists. I cannot help but wonder every week how many children these people could be helping while we are attending the course. As other guests said earlier, there are some fantastic therapists out there and this is not meant to bash them. There are some very understanding therapists once you get into the system, but it is about getting in to see them and getting the support. There is sometimes an undertone that suggests the disability manager has been told to run cases in a certain way.

As well as meeting the Minister of State, we suggested there should be more administrative assistance in the CDNTs. In some cases when family plans are being drawn up, the senior therapist has to type up notes, which leads to a further delay in the process. That has since been improved and the feedback taken on board, particularly in my CDNT in Cork Street, where an administrative worker now looks after much of the stuff, which is fantastic.

We were able to contact a therapist who had recently left the HSE. That person had not been there for long but paperwork was a big issue. The therapist had been spending their time drowning under the paperwork, rather than being out there helping the children. That issue is systemic and needs to be addressed.

To return to the case of the child whose appointment was cancelled, what fuelled the matter was that, unfortunately, the disability manager was unaware of where the staff were. Somebody had called in sick, which happens and is understandable but I do not think somebody would call in sick ten minutes before they are due to start their working day. There is usually a bit of notice. In that example, when it was suggested another OT could take over, the receptionist had to inform the disability manager that this person was also out sick. A disability manager should know where his or her people are on any given day and be able to make amendments through a messaging system, which should be in place. There are messaging systems everywhere and it is not complex software to install. Such a system would be valuable in that it would avoid upsetting children who might not want to be there and wasting people's time. The appointment might involve a big change for the child and the parent might have prepared him or her for it with social stories or visual aids. If the plan is then changed, that can have a significant knock-on effect for parents that will be felt beyond that day. The child could have a meltdown that will last for up to two days because of that change.