Ms Linda Whitmarsh:

I will speak on behalf of the Cavan-Monaghan Parents Committee. I am just an ordinary mum but I have two extraordinary children. My eldest son is aged 11. He was discharged from the children's disability network team, CDNT, when he reached six. We waited five years for an assessment for him of dyspraxia. Those were five long years where he regressed and we have to work harder now to make things easier. Five years is a long time for a child to wait for a diagnosis. In the interim he was diagnosed as autistic as well. He is quite mild. He is a lovely fellow. He is great. He is very formidable but waiting those five years has put a strain on him. If only had those services from the start, instead of waiting until he was six and then being discharged. That is five years of a child's life gone.

My other little child, Finn has just turned nine. Finn has cystic fibrosis. He has an intellectual disability and he is autistic. Finn is only speaking now. Up until last year he was non-speaking. The services have failed him and let him down. These are two extraordinary children who get by with all these challenges and do amazingly. Finn is such a happy wee soul and he sees the world in a different way. He leaves the curtains open at night so he can look out into the sky and see the moon and the stars. Just the way he looks at things would teach you but he only started speaking in the last year. Finn is nine and he has received three hours of speech and language services in the past nine years. Everything else has been private. We as a family, myself and my husband Ronan, have spent €15,000 in the past two years on private assessments for the kids and on services. I have had to stop working. I loved my job but now we are carers. We just get by. My husband is working. It is a struggle but you cut the cloth to measure because the kids are the most important thing. We cannot wait around for the services for them so we have to go private. Out of pure frustration, this time last year, in April, we formed a parents' committee to help everyone in counties Cavan and Monaghan because we knew we were struggling and we did not want to struggle on our own, and we did not want another family to have to wait all this time. Let us think of a nine-year old who was non-speaking; when he was eight he had only received one hour of services. When we formed our committee, he got two extra hours of services. He received a speech device. However, why do we have to shout or fight? It is so time-consuming and hard mentally and physically when you are looking after your kid and doing everything that you do for the love of your kid without having to fight, write emails to constantly ask, "Where is my child on the list?", or to say, "He's waiting". It is too long and too late. My biggest fear as a parent is that I have let him down because we have waited so long. We have done everything we can with our private services but Finn is nine and he is only speaking now. The likelihood of him being in residential services when he is older frightens the life out of me and sometimes I cannot sleep at night thinking about it. What if they had have go in earlier? What if he had been receiving regular speech and language therapy from the age of four and not just given a device? He was given an augmentative and alternative communication, AAC, device. We have our device so we were not entitled to speech and language therapy. He has received one hour of occupational therapy in the past nine years and that was only because the occupational therapist, OT, went into the school. I have been on numerous courses - someone would not be able to work with all the courses they have sent me on - but they have not seen my child and, therefore, it is not an individualised programme.

It is not just us. We have come together. We have a committee and a Facebook page of 110 people and all our stories echo each other. It is not just Cavan-Monaghan; it is everywhere. At the end of the day, there are facts. Last week, I got these figures from our CDNT. There are 670 children just in Cavan alone. There are two speech and language therapists, 3 OTs, 2.4 psychologists and 1.5 physiotherapists. That is 8.9 therapists for 670 people. How can someone get supports and services with that? There are 2.46 social workers, 0.8 of a family support worker and no dietician. We are just parents. We are just laypeople trying to help other people. We are not a charity. We are just advocates working together. Myself and my husband have come up with a way of how to solve this crisis. I will ask him to talk about the four points that we have discussed that would help end the crisis for us all today.