Ms ?rla Egan:

I am the principal of St. Joseph's National School in Longford town. We are a DEIS band 1 school with three special classes for children with autism. Situated in Longford town, we have a very diverse school community. I was asked to speak on behalf of a very concerned and frustrated group of parents regarding the lack of supports and services in our town. There are major concerns about the lack of services and the waiting times within the CDNT in Longford and the struggles with the allocation of services within the disability team.

As we all know, research shows that early diagnosis of and interventions for autism are more likely to have major long-term positive effects on symptoms and skills. Early intervention not only gives children the best possible start but also the best chance of developing to their full potential. The sooner a child gets help, the greater the chance for learning and progression.

Parents of children within our special class often come to me. I will provide an insight into what some of them have come to me to talk about. What can I say to the mother of a seven-year-old boy who was crying because she knows in her heart that her little boy is trying to communicate with her but is only receiving his first ever block of speech and language therapy? Another parent has English as an additional language and was given a programme for speech and language therapy to do at home with her child. Not only does she not have the language but she does not understand the complexities involved in the process. Speech and language therapists and occupational therapists are trained for a number year to degree level or higher but due to the lack of supports and services this has been put back on parents, who are asked to complete programmes at home. Parents are not trained professionals with the necessary knowledge base but due to lack of services they are asked to do this. The teaching staff, SNA staff and support staff in my school are also asked to carry out duties with regard to the programmes that are given. We try our best but we are not specialists in these areas and we should not be expected to carry out these roles. We do not expect speech and language therapists or occupational therapists to come into our school and delver a curriculum, so we should not be asked to carry out their roles.

Another parent whose daughter has severe behaviours asked for support with the disability team, only to be told there is no behavioural therapist within the local team. This is not good enough. A little seven-year -old boy with severe anxiety was given an appointment every two to three weeks, for only six sessions. How can this timeframe and break in continuity help the boy overcome his fears and anxieties, even to get that little lad in the door of the therapy services? Another parent begged me to help with a clinical diagnosis as the closing date for enrolment is pending. Her child requires a diagnosis and a recommendation for a special class but unfortunately the disability team will not have it completed on time for that parent to seek a place. She knows that a special class is the best possible setting for her child.

Children with ASD will require various types of interventions as they grow but unfortunately, these resources are just not there in Longford town. The services within the town are almost non-existent and we are at crisis point. I understand the pressures and lack of human resources within the CDNT, but how is it that this is being allowed to happen in 21st century Ireland?

I have listened to what was said by other parents and advocacy groups and, unfortunately, we lack a support system for these parents. There is also a lack of knowledge within the community. In our town, we have no respite services, resource centre or community support and, most of all, we have nobody to ask because there is no one there to pick up the telephone. One parent would love his little boy to join the local soccer club. Luckily, we have a club for children with additional needs. All that little boy wants to do is to play soccer, but he has been on the club's waiting list for two years.

Evidence from research and observation agrees that early intervention increases the chances of success. We all know this. I refer to improved overall development, social skills, coping skills, relationships and quality of life. By investing now in their future, these children have the potential to be independent and to contribute fully to society. Why is this not happening? Why is every day a constant struggle and a battle for these parents to acquire the services their children deserve? This is the voice of the parents. All we want is for our children to be heard. Currently, we are their voices. Every child has a right to be heard and to live a fulfilled life, but unfortunately for us, we may never hear our children's voices or see them live independently as members of society who are contributing fully. This is because they have missed out on the services and supports required during a vital period of their development, namely, the period of brain development when the brain is ready and has the greatest capacity to alter the way it designs itself, based on the kind of experiences the child is exposed to. This time is now lost to our children, never to be replaced.