Fiona O'Loughlin (Fianna Fail) | Oireachtas source

I thank all the witnesses. I am utterly depressed, although I do not why I am more than normal, after listening to these testaments. The story that has been painted is just so utterly bleak. In whatever way we can, we must try to give hope as well as support to families in this position. I thank the witnesses for their honesty and courage in coming to tell us their stories.

I have a few comments and questions. I have heard about Ms Holmes several times from my colleague, Senator Ardagh, and she speaks very highly of her and MJ and the work they do. I live in Kildare, which is part of community healthcare organisation, CHO, 7 as well, and I am only too well aware of the issue from the families I work and deal with in Kildare. I know exactly what they are facing.

Families are waiting two and a half years and the witnesses have all noted the importance of early intervention, and that is shocking. There is no mention of respite or home care. I noted in particular that families are steered away from requesting any direct intervention therapies. Will the witnesses expand on that a little?

I will put my questions together. The survey mentioned by witnesses indicates 56% of families are waiting without services, and there is absolutely no way anybody could ever stand over anything like that. Will the witnesses comment on July provision? I certainly know that in my area it is very difficult to get schools and special needs assistants to deliver it.

I know Ms Whitmarsh met the Minister of State, Deputy Rabbitte, last week. Fair play to her and her husband for setting up this group because it is very important that families are able to talk to one another, share and advocate. She mentioned the need for such a process and the lack of those types of family forums. The Minister of State, Deputy Rabbitte, is going to all the areas and listening to families, which is very important. She has not come to my area yet but I believe what she heard is grim. Nevertheless, these views must be heard by everybody, including the HSE. I know the HSE did not even send representatives to one of those meetings, which I believe was in Cork. That is appalling. We must absolutely call the HSE out on that.

I have listened to what the witnesses described as happening to them during the Covid-19 pandemic. They had to give up jobs and do not now have money for private treatment, which is beyond belief. One of the children has only received one hour of intervention in the past three years, which is appalling. He is non-verbal and is not getting those supports. What would be the best practice schedule for intervention in that case? There was mention of people going to counties but how does that work with respect to transport and costs?

I thank Ms Hart for her contribution. My brother, who has Down's syndrome, is 47. When he was born, he was the ninth child in the family and there were two more after him. My mother brought him to private speech therapy twice a week. It was a considerable distance from our home. As children, we were all encouraged to help and be part of that therapy. He is an absolutely amazing man now and the heartbeat of our home.

It seems that 47 years later, things are basically exactly the same. Cathal was born just four years after the Down's syndrome association started to fight for these people. It shocks me that things are still so bad but it is so hard to get change. With an early diagnosis, there is no reason plans cannot be put in place in terms of an intellectual disability database etc. That is unforgivable. We know the excellent work carried by the Down's syndrome organisation in Kildare, with literacy programmes and a horticultural programme. They are going through every single imaginable hoop in trying to keep those services open for young adults. It is a volunteer group.

We need to sit and listen but we must also bring recommendations. I thank the witnesses for the recommendations they have made. As I have said, I am just beyond despair but perhaps the witnesses will comment on what I have said.