Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail) | Oireachtas source

First, I must apologise too because, like Senator Ruane, I am going from committee to committee. I am sorry I missed their opening statements

I am a Carlow woman and I welcome the Carlow group here today. I would be very much aware of the services within community health organisation, CHO 5.

My nephew has Down's syndrome and I am his godmother. Let me tell you, he rules the house. He rules my house, my mother's house and his house. Jamie is 26 now. I would have seen the challenges that CHO 5 would have brought to the family of my brother and his son, Jamie.

The one thing I will say is the love from Down's syndrome children is phenomenal. With my own nephew, I see that he has a routine. He loves his routine, as, I am sure, these parents have said. Jamie has a routine and we dare not break that routine for him. If the day to go for his chips is Thursday, we dare not be late. That is so important to us as a family. It is important, too, that families and the impact on families are talked about today. As I said, there is so much love there but there are many challenges for families too.

We spoke about the carers. I myself see it. There are families that would have come to me that do not qualify to get the carer's allowance. In some families, in particular, the mother does not go out to work. Sometimes it is the father who might stay at home. It should not be assessed in terms of money; it should be an automatic right to children.

The other change that should happen is that the funding should be much greater. The witnesses spoke about orthotics. I would have seen, with Jamie over the years, the amount of orthotics that Sandra would have had to buy for him because he was at the stage where he had to get really expensive runners and he would have had to get orthotics for them. That is even a general point, when it comes to fashion in clothes, etc.

My nephew is so grown up. I can probably speak more about Jamie and all his friends at this stage. We have Special Olympics in Carlow. I am sure the witnesses are aware of it. Friday night is the night one goes, and one dare not miss it. The lads have their routine and they go bowling, and then go for their chips afterwards and whatever. It is a lovely social outlet for them and so important. Senator Ruane spoke about the social aspect of it. Down Syndrome Carlow goes on a weekend away every year. They are not too long back.