Ms Miriam Jennings:

I thank the Deputy for her kind words. The first thing I would say is that I think everybody here is a very reluctant advocate. We certainly would not choose to be here but we come here because this is our lived experience. To answer Deputy Harkin's question, we want to come with solutions. It is very important to us to be part of the solution and to bring what we know to those who have the power to do something.

We looked at the couple of schools providing a more or less full summer in-school programme, and the committee has received the information. We contacted three special school principals who sat with us and went through a full case study. They were fantastic. The first thing I will say about those principals is that each and every one of them said the reason they do it every single year is that they could not imagine these families being without this for nine weeks, not to mention that some of our children in the secondary school system go without this for 13 weeks. They said they could not not do it. They work all year round to identify and line up people to work in the programme. They are seeing a pattern where it is getting harder every year to obtain staff and retain their own staff. One principal said that perhaps the expansion of the programme and allowing their current teachers to work in the community on the home model, with children with less challenging needs has maybe resulted in the loss of a couple of staff from their in-school programme. They work all year to plan it and they ask their own staff in January who is available. They work from there and they rely very heavily on keeping intensive local lists and students who have been in on placement. They have a very good relationship with universities from which they place students. Special schools would have students coming from all the disciplines within the multidisciplinary team for experience.

This year we took one of those schools as a case study. It had lost a significant number of staff who had normally done the programme and who were not available this year. We took a look at who it had available and at the multidisciplinary students who were available there. We also interviewed three of those students as part of the case study. The bottom line was that it really was a win-win. Those students could not talk enough about their whole experience and what they had learned. It was what they went to college for and it was the icing on the cake. The experience over three to four weeks in the special school was something a couple of them had never been exposed to. They all said it was extremely daunting to start with but they got magnificent support. It just brought out so many positives for them in terms of capitalising on all they had learned in college and of a commitment to continue to be available and to work with the school going forward.

This is what our schools need. Our school principals tell us they need these local lists and these people to call on, so that certainly was a win-win. I refer to the practicalities of it and of how these schools are delivering a very detailed programme. Let us not forget that to deliver a special school programme for children with very complex needs and where you are talking about a 1:1 ratio nearly all of the time, you are talking about a huge responsibility for the principal and the child, but also for the student or that person who is coming in that is supporting. Each of the schools needed a significant hand-over time. That was done by one of the schools in June and it paid for it from its own board of management fund in order to have those students in from five to ten weeks on placement and for a hand-over for the specific child they would be working with. They made it work.

What we identified were the lengths these principals were willing to go to in order to ensure those families had the remaining support in the summer. A principal told me that each week they can gain from the summer programme, hopefully, means slightly less regression in September. The principal said that regression is inevitable as the school holidays are simply too long, but they are trying to work on lessening that regression.

The school on which we did the case study was quite unique. It had a good working relationship with its overnight service, that is, the respite services for the few children availing of that service. In that case, because it had the problems with employing staff this year, each child in the school had a four-day week. However, it immediately identified the children who would be with the overnight service within these weeks in July. It worked with it so that the night the children were with the overnight service could be the fifth day they were not at school and that it would have them the other four days. It was an example of cross-department or cross-service partnership working really well for the benefit of the child. The child was the focus.

These principals know exactly what our families are living with. They really identify the absolute strain and difficulties our families face for nine weeks. The Deputy will have read the stories and they are not easy reading but I can guarantee they are the reality and all of our families are always available to speak. In terms of the reality of raising a child with very complex needs, in many of our families, a lone carer cannot do that and a second parent has to take unpaid leave. Two parents have to be at home for that period of time. In many case their siblings, their younger brothers and sisters, take over some of those care needs. It is wholly inappropriate for a child to be a carer when that child is under the age of ten. That is what is happening in the summer with our complex needs children. We find siblings want to leave home a lot sooner as they cannot cope with living with their brother or sister.