Senator Miche?l Carrigy:

I thank the Business Committee for selecting this report for debate in the Dáil today. I also thank it for proposing, and the Dáil for agreeing, that I, as a Senator and Chair of the Joint Committee on Autism, could attend and be heard during these proceedings. I thank my fellow members on the committee for the work they have put into this report and Deputy Buckley, who sponsored the motion.

The Joint Committee on Autism held its first public meeting on the 28 June last year. It was established with a view to producing its final report at the end of March this year. However, it became very clear when we began our public meetings in June of last year that education matters, and particularly those relating to the summer programme, required urgent attention from the Government. At our very first public meetings, we considered the issue of education. As we engaged with stakeholders in the education sector, we received more and more correspondence from parents who could not access a place in the summer programme and from parents who could not even access a place in a school. Throughout the course of our public meetings, we received harrowing testimonies from families who have been failed by the education system. We have been privileged to welcome a number of families to speak before the committee - families who have fought tirelessly on behalf of their children and, indeed, their wider families. They have founded campaign groups, established support networks and provided information to families who find themselves facing the same challenges they did when trying to access services. The work these parents have done cannot be underestimated but it is work they should not have to do. Parents should not have to organise campaigns to convince the State to provide adequate places within the school programme. We should not have to fight to access school classrooms.

The report on the summer programme 2023 emerged in no small part due to the efforts of these parents and many others across Ireland. They should be commended on their tireless work in difficult circumstances. This interim report was undertaken in the context of the clear failings we identified with the summer programme in 2021 and 2022. Figures from the Department of Education show that 80% of children in special schools had no access to the summer programme in 2021. That same year, fewer than 5% of children in special schools got the full four weeks. It is unacceptable that the very children for whom the programme was established are now excluded from participating in it. I note that a number of schools sent correspondence to families last summer stating they would not be participating in the programme in summer 2023.

I am aware that forward planning and good organisation are central to providing a successful school programme. It is with this in mind that we published this interim report several months in advance of the committee's final report. We published it with the intention of giving the opportunity to the Minister and the Department of Education to ensure that adequate resources and supports are in place for schools to provide the summer programme for the children who need and deserve it.

I referred to the contributions made by the parents of autistic children. Parents discussed a range of issues that arise when a school-based summer programme is not made available to a child who relies on it. The interruption to an autistic child's routine can have catastrophic results for that child and their family. The report details the regression children with autism can experience during the summer holidays. Indeed, neurotypical children experience educational regression during the summer period. However, children with ASD and other forms of special educational needs experience regression to a greater extent than their peers. One of the traits that is sometimes associated with autism is a difficulty in acquiring and maintaining skills. A long period of interruption for an autistic child will greatly impact upon the skills they had acquired due to the efforts of themselves, their teachers, their SNAs and their parents. This is the fundamental premise upon which the summer programme is based.

As many Deputies will be aware, the programme emerged from a court ruling that children with special educational needs experience regression and that they have a right to an education. The very reason the summer programme was initiated was to mitigate this regression. This behavioural regression is one of many sources of stress experienced by families as a result of their inability to access a school-based summer programme. Parents have related heartbreaking stories about the pressure and stress their families are subjected to as a result of this regression. It is incredibly difficult for families to witness self-injurious behaviours, anxiety and anger in their children. Research has shown that the parents of children with ASD experience more stress before their child is diagnosed as they ask why their child is not developing in the way they would have expected.

Parents experience stress when they learn about their child's diagnosis and how they will be supported. Parents also experience stress when they try to access the services their children need - assessment of need, school places and healthcare. Campaigning for adequate services for autistic children is an additional source of stress that, unfortunately, the parents of autistic children have also had to reckon with in recent years.

One of the benefits that the programme can provide to families is respite. Respite is a lifeline for parents who are in the most difficult of circumstances. Children with ASC, autism spectrum condition, can have very high care needs and parents can find themselves as the sole providers of care for their child. Deputies will be aware of the difficulty experienced by many families in accessing respite care, whether publicly or privately. As mentioned in the report, the programme is sometimes the only form of respite available to some parents. Importantly, this respite does not just benefit parents, but entire families. Many parents find themselves directing a lot more attention to their child or children with higher care needs and sometimes feel guilty for being unable to give as much attention to their other children as they would like. Additionally, some children, who are also on their holidays during this period, find themselves caring for their siblings. Care is extremely stressful and difficult work. We should not rely on children to provide it to those who require it. For many, care is unpaid work. Parents have related that in the absence of the programme in their area, they have taken unpaid leave to look after their children. In the current economic climate when costs are rising, and many families are worrying about expenses, we cannot expect families to endure an increased financial burden over the summer months.

At a recent meeting of the committee, we heard from Dr. Áine Roddy of the Atlantic Technological University, ATU. She states that the average annual cost for having a child with autism is in excess of €28,000. She advised that these costs relate to private services, lost income and informal care. The absence of this vital public service contributes to families incurring costs, and in some cases debt, to access interventions and respite care privately, and it contributes to a loss of income due to the necessity to take unpaid leave.

The State cannot expect families to bear the burden of these expenses. The most cost-effective way for the State to intervene in this situation that emerges every summer is to provide a comprehensive summer programme with the funding that is available and to relieve a major source of stress and anxiety for parents. It is important to acknowledge the funding that has been made available by the Government for the summer programme in recent years, more than €40 million in 2022. I welcome the announcement prior to Christmas by the Minister of State, Deputy Madigan, that €40 million is available for the programme for 2023. I acknowledge the significant work that she has done to provide school places for children around the country.

We feel strongly as a committee that we must make a change in the summer programme. We must get more schools on board. There is a responsibility, in particular on the special schools and the principals of special schools. I acknowledge the hard work that they do throughout the year and have done for many years, but we must think of the child first. We must put these recommendations in place to make sure that more than 40 of the 136 special schools we have in this country have school-based programmes this year and that we do not have a situation where more than 6,500 children with the highest needs, the children for whom we set up the summer programme, do not receive it. For these reasons, I strongly encourage the Minister of State, Deputy Madigan, to accept the recommendations. I accept that a lot of work has been done in this area in recent months to adopt and implement the recommendations as outlined in the report.

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