Ms Miriam Jennings:

I thank the Chairman and the committee members for the opportunity to address them. We are a parents' group whose children attend special schools and classes countrywide. The vast majority of our children have complex needs and life-altering disabilities. Their needs are severe, multiple and present from the cradle to the grave.

The July provision school programme came about following a High Court judgment in 1993 that recognised that children with severe needs lose skills over the long school holidays that may never be recovered. It was replaced by the expanded summer programme in 2020, which saw an increase in eligibility from 15,000 children in 2019 to 80,000 children in 2021. We believe, however, that our children's need for a school-based summer programme was not safeguarded. No plan was put in place to ensure that complex-needs children, for whom the scheme was set up, would access it. Department of Education figures from 2021 show that 80% of children in special schools had no access to the programme, while less than 5% of the 8,000 children in special schools got the full recommended four weeks.

The home-based programme promoted by the Department is not an appropriate alternative. The National Council for Special Education has stated this is the least effective way to deliver the programme, given many children with autism and intellectual disabilities cannot cope and will not tolerate strangers in their home environment. A home-based programme cannot be mooted as an alternative to the school-based programme to facilitate children for whom it is not suitable.

The school day provides more to our children than a curriculum. It provides routine, stability and an opportunity to be a part of a world outside of their home. Our children have access to school facilities such as sensory and occupational therapy rooms and secure play areas. The impact of the long school break during the summer is significant and frightening. Our children's essential routine stops abruptly and they cannot understand why. They cannot communicate their multiple worries and uncertainties given so many are non-verbal. They regress rapidly.

We have submitted real-life stories from ten our families, as the committee will have seen. The pressure on the child, parents, siblings and extended family is immense. There are no summer camps, playdates or family holidays during the nine or 13 weeks away from school. The long break causes an increase in the number of episodes of sensory overload, a regression in skills and a greater incidence of anxiety, self-injurious behaviours, aggression towards parents and siblings, destructive outbursts and absconding. When a child is regressing and losing the ability to cope, this puts a strain on families trying to support him or her. Family relationships come under immense pressure. Siblings end up assisting with care and are left with no summer holidays themselves while parents try to hold the family unit together under incredible levels of stress and in a constant state of hyper-vigilance.

We ask, for the sake of our children and their families, that the committee fight for complex-needs children to be fully included in the school-based summer programme. We ask that a tiered approach to the provision of the programme be established based on absolute need. We voiced our concerns to our schools, local representatives and the Department of Education, along with the Minister for Education and the Minister of State, Deputy Madigan, earlier this year, yet we still watched from a lonely distance as families prepared for a summer break, anxiously wondering what would happen to our children over the summer. Many families learned only in June that their school would not provide the programme, while many parents scrambled to ask their employer for unpaid leave, just to cope.

We have been proactive in our advocacy for our children and have worked hard to propose solutions. We have contacted the departments of education in all 36 jurisdictions in Europe. We have identified, as has the Minister of State, Deputy Rabbitte, a highly effective special school summer model in Malta. The Maltese utilise a combination of school staff and external multidisciplinary professionals, students and trainees, such as nurses, doctors, speech therapists and respite workers, to work with the children over eight weeks of their school holidays. A fresh approach benefits not only the children but also the professionals, who gain valuable experience.

The Minister of State, Deputy Madigan, has received information from interviews with three Irish special school principals running very successful school-based programmes. These principals often employ external professional staff and trainees and they start planning in January. We need the Minister of State and the Department of Education to design a fresh approach and to commence work on it urgently. We need collaboration between Departments to ensure our complex-needs children will get access to our next summer programme. They cannot afford to lose another year.