Seán Canney (Galway East, Independent) | Oireachtas source

I welcome the witnesses, including my colleague from Galway East, the Minister of State. I have been listening to the meeting all morning. I refer back to what Senator Clonan said about his lived experienced with his child. To be blunt about it, it is something we have been hearing in the committee from families and from people representing families who have children with disabilities. Bluntly, there is much talk going on but the people on the ground are not getting the service they require, deserve and are entitled to. When the children’s disability network teams were being set up, I believe all parents were getting the excuse that they were setting up the teams and once they were in place, they would have the world and all. In the meantime, families were being left waiting. There has been a failure to actually put these teams in place in an efficient manner to make sure that children get the services they deserve as a right.

It would be remiss of me not to reiterate that we have failed our children who have disabilities. I do not want to see or hear a hell of a lot more talk about reconfigurations, team building and this, that and the other, and having all the paperwork right and a hell of a lot of money spent on it, and yet not have the services in place.

Only last week we had representatives from Down Syndrome Ireland in the committee. They told us of a survey they carried out among their members in which 65% of the respondents said they did not have one therapy session in 2021. That was 65% of the children with Down's syndrome. This is something I ask the officials to take away with them. The therapists are not there. They told us international recruitment is not happening by the HSE. Again, the section 38 and 39 organisations, which are a complete farce in this country, have left us with a triple tier of health payrolls and we have inequality within staff. We have that inequality petering down to the children who cannot get services.

The other thing I keep hearing – this is not from the Minister of State – is that basically, the Government will tell you that money is not the problem. However, I do not think that parents want to know what the problem is not; rather, they want the problems solved. There is a wake-up call for people who are involved in these services across the country to provide an equitable, accessible service whereby any parent who has a child with special needs will be given, first of all, a case worker who will bring the parent through the pathways where everything will be for that family. At the moment, when parents find that their children have a special need, it becomes a war zone for them within their family, as a result of what is not being done by the HSE and the Department of Health. That did not start today or yesterday; it has been going on for years. It is a war zone. The only thing that parents have in their minds is that they have to try to prove everything for their child. For example, when parents have a child who is permanently blind from birth, every time they are looking for some sort of support, they have to go back and get consultants' letters to prove that their child is still blind. That is unforgivable. I get emotional about this because I feel that we as politicians and as governments - not just the Government of today, but continuously – and the HSE continuously, have let our people with disabilities down badly.

There are many things to be done. The questions I had have already been asked. In a nutshell, we need to realise that this is not about protecting systems, ourselves or this, that and the other, and we need to take a bit of courage into our hands. I would say to Mr. Reid that it is time to put the boot in where it needs to be put in and make sure that the services are delivered and we have staff in place. For example, we had a witness telling us last week that they had been given an appointment. They were in the waiting room, waiting to be called into the appointment when they got a text to say that the appointment was cancelled. They were then told another therapist would perhaps be able to see them. Somebody else came out and said that the other therapist was out sick as well. That is not the way to treat families, people with disabilities and our fellow citizens in this country. There is a huge amount of goodwill and volunteering going on by people and parents. They are fundraising and they do everything for the sake of their children. The more they do, the more we stand back and let them at it, because it is easier. However, it is wrong.

I will finish on this. Today, I ask the visiting officials, no more than did Senator Clonan, to admit it has been a failure and say that we will start from today to put it right.