Holly Cairns (Cork South West, Social Democrats) | Oireachtas source

I welcome the witnesses and thank them for being willing to share their experiences. Regrettably, PDS and CDNTs are failing children and families every day. Ultimately, the witnesses should not have to come before this committee to share their stories. I am really familiar with the incredible work of West Cork Down Syndrome Support and Down Syndrome Cork and I have no doubt about the importance of Down Syndrome Carlow. As public representatives, we know that parents of children with disabilities are among the most exhausted and at the end-of-their-tether people we meet in our work. People should not have to come time and again and tell committees about these issues. It should not be that way.

It is important to say at this committee and the Joint Committee on Disability Matters, of which several of us are also members, that each of the witnesses' children and all the children they represent have a right to proper health care. They have a right to education and to be members of their community and to live full lives. It is essential to never overlook that point. The children may need additional supports or considerations but these are not optional extras or charitable interventions. They are entitlements for those children under international law.

My first question is for West Cork Down Syndrome Support. The most standout and worrying aspect of the group's opening statement is what was said about services in west Cork and how they have gotten worse under progressing disability services. We know from the disability matters committee that none of the CDNTs in the entire country is fully staffed. I made the point previously that if we were fielding a team for the Irish rugby team and there were not enough players we would not call it a team. The plan was to overhaul supports and healthcare for children so will the witnesses elaborate on that point with examples? It does not have to be the witnesses' own family, it can be other families within West Cork Down Syndrome Support. It would allow the committee to understand the true, on-the-ground impact of that for people.

From the witnesses' perspective, what needs to change? The parents are the experts in what their children need. What do the Government and the HSE need to do differently?

Also, because there are different groups here could West Cork Down Syndrome Support Group in particular elaborate on the challenges in a rural area like west Cork? The witness spoke about proximity to the city to access speech and language therapy and how it is an hour and a half from where they are based, and a person needs to add an hour on to that if they are from the Mizen or Castletownbere.

Ms. O'Donovan also mentioned the fact there is no special school in the entire Cork South-West constituency. I have a question for Down Syndrome Cork. They very clearly articulated that speech and language therapy is the most important early intervention in the life of a person with Down's syndrome, and the utter failure of the State to provide that vital service. As was highlighted, 65% of respondents to the Down Syndrome Ireland survey have never received speech and language therapy. Down Syndrome Cork, in contrast, have created a speech and language therapy service in which there are no waiting lists. This service is only possible through the fundraising of parents but if we could put that aside for a moment, the point I am focusing on is what is Down Syndrome Cork doing differently that means it has no waiting lists while the HSE has disgracefully long waiting lists? The HSE attended the Joint Committee on Disability Matters last week regarding those waiting lists and they always say is that it comes down to staffing and that they are doing all of this recruitment and spending all of this money on recruitment. At the end of the day there are different ways this could be treated in terms of how the HSE approaches it and it is very obvious to me that it is like, "We are trying, we are trying, we are ticking boxes all of the time", but if it was really trying and if it was treated as more of an emergency like during Covid-19 and at different times like that, something could be done. We saw that when the HSE wants to move mountains for something it can. It is really annoying when we have those conversations at the disability committee when we are constantly met with "staff, staff, staff". Could Down Syndrome Cork highlight how they can do this without waiting lists? I know it is on a different scale but we all know that if the HSE really wanted to it could and to hear from an organisation that is doing it through fundraising would be really helpful for us as a committee.

On the funding issue, Down Syndrome Ireland clearly has a really successful model in that vein that is providing a much-needed service. What has happened when it has approached the Government and HSE to seek funding? They have to be able to see the success of the service and I am wondering what it gets in relation to support.

My final point is on the issues of education and the transition from primary to secondary. We spoke about this at length at the Joint Committee on Disability Matters also. It is kind of incredible that there is not a count of how many there are in special classes, in special schools, and in autism spectrum disorder, ASD, classes, in primary school to prepare for that in relation to secondary school. It is incredible that basic forward planning is not being done. Could members of the committee speak to that, because in any report we do if we hear from witnesses it helps us to reiterate and re-highlight that point.

In terms of home tuition, perhaps Down Syndrome Cork or Down Syndrome Carlow could answer if it is the case that children with Down's syndrome who previously could access home tuition hours are now unable to? I thank the Chair.