Seán Canney (Galway East, Independent) | Oireachtas source

I was not here for the start of the meeting but was listening to the witnesses' presentations in my office.

The more we speak and the more we bring witnesses before the committee, the more we realise how complex the whole area of disability is. One issue is often raised in my office and I seek the witnesses' views on how we can resolve it. It is regarding when somebody finds out that his or her child, who is at a very young age, has a difficulty. For the first time, it begins to dawn on such people that the child may have a need and they ask where they go. All of what the representatives have said to day, as well as the language they have been using is great. This is something that parents will find out over four or five years of having been in the system. They will become experts on everything and anything. However, in the very early stages of parents being faced with a child who has a difficulty, they have nobody to hold their hand.

They have no pathway by which somebody would sit down with them and say: "This is how it is going to be done and this is the pathway you will follow". There will be talk of strange things like speech and language therapists, and all kinds of therapists and assessments, including needs assessments. The parents will be in a state of flux and trying to come to terms first of all with the fact that perhaps their child has a special need. The frustration for parents is, first, they do not know who to turn to and, second, they are put on a waiting list and it can be anything up to two years before they have an assessment. We all talk about early intervention. We talk about UN protocols and everything else, but how are we going to address that? I find it frustrating that we are talking about the systems, policies, working groups and everything else, but at the end of the day, what are we going to do for these parents and their children, right at the very start so that they have a hand to hold to bring them on the journey they will be going on? That is vital.

This is not a criticism, but there is a huge amount of missing infrastructure. I have a case in Galway where a person with a disability who needs residential care was offered a place in Westport or Castlerea. That is not what was intended. The person is now being considered for a nursing home as an interim solution, which is not cheap. There is a deficit in the infrastructure as well.

To follow up on a point mentioned by Senator McGreehan, in Tuam we have St. Oliver's Special School, which is a beautiful, brand-new school. The name is up on it and people are asking why we put the word "special" into it. When I checked with the Department, it said it is a matter for the board of management. I think there needs to be a direction on that. The school is special, but every school in the town is special as well. As has been said, every child is special. As it was raised again, I think we need direction on that so that the schools would probably use some other name. "St. Oliver's school" would be grand, rather than St. Oliver's Special School.

I believe that we have an awful lot of work to do. I will go back to the interaction of the Joint Committee on Disability Matters and the Department with responsibility for disability with the HSE. It is a huge challenge to try and make sure that whatever the Department is doing we get it on the ground. People working in the disability services area of the HSE are finding it pretty difficult because they do not have the resources. For instance, a speech and language therapist who is going on maternity leave, who will be gone for ten months, is not going to be replaced. The children are being told they have to go back on the waiting list. We have a lot of work to do. It is not a criticism, but at times we need to portray what is coming into our offices at local level.

There are a lot of good things happening. Mention was made of pilot schemes that have been started, which is good, but we need to get back to the basics. A lot of parents I talk to say that when they hear about reconfiguration or doing things differently, and when something is being prepared, they see that now as being something to talk about rather than getting the problem solved. No matter what happens in the future, we must start at the ground and make sure that people get a hand to bring them along the way at the very start of the process.