Ms Linda Whitmarsh:

I will go back to Deputy Murnane O’Connor's question on inclusivity. We have a long way to go on inclusivity and not just in regard to working for these children. I had an eight-year old standing with me in a shopping centre, waiting in a queue. He is quite noisy and he is quite overwhelmed, and I have no option but to bring him in. Adults are staring at him. What hope do we have to include him and to get him to live an independent life when there is still so much that has to be done around awareness and inclusion?

On the issue of respite, in Cavan we only have respite of one week for children and one week for adults, which is not good enough at all. Our committee includes the parents of a 15-year-old girl. She has intellectual disabilities and chromosome deletion and has very high, complex needs. She only recently went into respite because she can be quite aggressive. It is not her fault; it is her needs. The parents are begging for respite and begging for help. They seem only to get the respite for two days every ten weeks and they cannot cope. Because that 15-year-old’s needs are so high, when she goes into respite, instead of having four clients there, there is only one other client. Instead of it being the highest standard of respite to care for the highest needs and to have four people with the highest needs, that girl is not getting the respite she is entitled to because of her complex needs, if members know what I mean. Something has to be done.

Senator McGreehan referred to unmet needs and spoke about it being relentless. Therapists are giving me advice without ever seeing my child, without knowing what he looks like. As someone said, they would not be able to pick him out of a line-up. These are voiceless children, literally voiceless as they are non-verbal. It is the most harrowing thing about having a child with additional needs - you have to put yourself out there and you have to fight. It is a constant fight and a constant battle. The thing that haunts you is the passing of time, the regrets and also what is going to happen when you die. Is this child going to be in residential care? What way is he going to be treated? How is he going to feel? Are they going to know to leave his curtains open at night as he likes the bright lights in the night sky and the moon shining in at him? Is he going to have that rural environment and be looking out at the cows? Of course not. That is what haunts us the most. This beautiful child that you would do anything for has got additional needs and sees the world in a completely different way. He is helpless and so am I because the HSE is tying our hands, with no intervention and no support. There is no foresight even to have the clinical staff on the workforce planning committees instead of having managers, who are fantastic but they may not have worked with a child in 15 years. We need to have people on the ground who know what is going on and know how bad things are so these children can progress.

I feel that the longer a child is waiting for intervention, the closer they are getting to residential care. My husband always makes this analogy about PDS. All of the parents are running for the same loaf of bread. We are all running to get these crumbs for us, for our children and for our families. This is what we are all doing now. It is about us all standing up together and saying we are not going to take that piece of bread from them. We are going to go to the bakery and demand that they make more bread because that is what has to be done. With all the help and support, we will get there and it will take time. However, let us not have another family of an eight-year-old who is non-verbal waiting three years and having to go as public as I have to get one hour of services yesterday and an hour in March because I went to a TD.