Ms Josephine Feeney:

As the Cathaoirleach said, I am a parent of two non-verbal, non-speaking autistic children in Longford, and Donna is also a parent of two autistic boys as well. We are speaking from the parents' point of view. I will talk about what we have found. Both my boys were diagnosed at two-and-a-half years old. They were quite young and we were lucky to get that diagnosis. With their presentation, it was obvious they were autistic. The process went quite smoothly. Within six months, both boys were diagnosed. Then there was a cut-off, however, and that was it. The therapies were not consistent after that. We were basically sent home as parents to become speech therapists, occupational therapists, psychologists, etc.

Things have not really changed. A big hit came during Covid-19, when there was no support whatsoever. One of my sons also has an intellectual disability, which means anything to be done over a screen is not going to happen. It is necessary to be physically in the room to try to capture his attention. My two boys are five-and-a-half and seven-and-a-half years old now. We are blessed to have a Sonas unit in the local primary school and both boys have places there. Even with this, when the oldest boy was going from preschool to the mainstream school, four children were seeking one place. That was a terrible experience to go through as a parent. The only reason my son got the place was that we were in the catchment area and the others were not. If he had not got that place, I would have been fighting to get two children into two different schools. Luckily enough, however, we received the place.

In the disability service in Longford, we do not even have half a disability team. We have 0.5 full-time-equivalent, FTE, of a speech therapist. More than 1,000 children are waiting to be seen. What are the issues with the HSE in this regard? Why is it so hard for it to source staff and why is the retention of staff so bad? Many therapists have left the CDNT teams and gone to primary care under the HSE because there are better benefits available. We understand that. These staff are human beings who need to work and have their own families to take care of. As far as I know, the CDNTs only provide 70% maternity leave, while in primary care with the HSE it is 100%. These major differences exist as well. When staff in the CDNTs go on maternity leave, no cover is provided and our children are being left there. Even if they have been seeing a therapist, no cover is provided if that person goes on maternity leave. There is no agency with therapists on hand to ring that could come in to cover for six months or anything like that. These things need to change. We need consistent services within our disability service provision.

From the point of view of a parent who has been bringing children to services for a very long time, they are capable, like anyone in a formal situation, like this one, for example, of masking and of being somebody else. Our children can do that. They may not be able to speak, and my children cannot. Other children can speak. Children will mask as well. We have to bring these children, to whom we cannot explain what is happening or where they are going, into a room in a strange building with these therapists and then we expect them to perform. Our children are not going to perform. It might be possible to get five minutes out of a child, but then they are gone.

The whole way of providing therapies to our children needs to change. The way I feel, and I am speaking for many other parents we have talked to as well, is that these therapists need to be brought into the schools and homes. My two boys are both non-verbal and autistic, but they are two completely different children. They learn completely differently. What works for one, will not work for the other. If these therapists came into the house, looked at how the children are when they are more comfortable in their home environment, they would see these children's true selves and their programmes could provide what is specifically needed for each child. When therapists go into the schools and work with the children there, the teachers and the SNAs are there as well. This helps the teachers and the SNAs.

My youngest son is five-and-half years old. He is in junior infants. His teacher came from mainstream education and this is his first year in the Sonas unit. He is doing his damnedest to try to learn how to teach my child. He is doing everything possible and says he is trying to teach him, but he is not being given the tools to do so. There is nobody to come in to help the teacher or SNA to teach my son. Both my sons, as well as many other children in the county, are not only experiencing a lack of services but also a lack of education because the teachers are stressed. They are trying their best to teach these children but they are not being given the tools to do it. This all falls back on the parents and the families. To be honest, I would not wish this life on anyone.