Dr. Fidelma Brady:

On behalf of Down Syndrome Ireland, I thank the Joint Committee on Education, Further and Higher Education, Research, Innovation and Science for inviting us to speak here today. My name is Fidelma Brady and I am the head of education at Down Syndrome Ireland. I am joined by my colleague Mr. Turlough Kelly, the communication and advocacy manager with Down Syndrome Ireland. I would echo a lot of what Mr. Harris has already said.

Down Syndrome Ireland, the national charity which supports thousands of Irish people with Down's syndrome, is gravely concerned by the content of the circulars issued by the Department of Education recently relating to the SET allocation for each school from the 2024-25 school year until further notice. In the circular it is proposed that the category of “complex educational needs” be removed as a criterion for allocating special education teaching hours. Based on our own analysis of the proposal, feedback from our members and the results from various surveys, the proposed change will have a potentially devastating effect on many pupils with Down's syndrome and their educational attainment. We are basing this conclusion on our understanding and long experience of supporting students with Down's syndrome at all levels of the education system.

A child or young person who has additional support needs arising from one or more complex factors or multiple factors is deemed to have "complex needs". To say a pupil has complex needs is not just a matter of terminology; it is a very real and important description of that pupil’s educational needs and the supports they require. Those needs are complex and multifaceted. When we look at children with Down's syndrome, we must consider both the intellectual disability and the chromosomal disorder or disability.

The chromosomal disorder in itself has multiple factors. It affects all parts of the body so a greater awareness of physical health is needed. Specific motor and sensory issues are common, with a very significant additional impact on speech and language. The intellectual disability and chromosomal disorder together both contribute to delayed motor skills, health issues, auditory and visual differences, speech and language disorders, short-term memory difficulties, consolidation and retention problems, difficulties with generalisations, thinking and reasoning as well as concentration and attention challenges. The combination of all of these factors must be considered complex for children with Down's syndrome and the very complexity of their needs must be the basis for the educational environment we provide for them. There is no possible one-size-fits-all approach that respects and addresses those needs. Quite simply, many pupils with Down's syndrome will not thrive educationally if their complex needs are not specifically addressed.

Research has found that academic progress and achievements are better for children with Down's syndrome in mainstream school once adequate educational supports are in place. The majority of children with Down's syndrome now enrol in their local primary school, with many progressing to mainstream post-primary school. A recent internal survey conducted by Down Syndrome Ireland prior to the issuing of the circulars indicated that 62% of our members who responded were enrolled in mainstream schools. Many parents have since expressed their concern and their intention to move their children to a special education setting due to the removal of the category of complex need for SET allocations. A survey in 2023 found that 35% of families who had already moved their child to a special school did so because the supports provided in mainstream schools were not adequate. If the supports provided then were deemed to be inadequate, how will less capacity enable schools to meet the needs of this most vulnerable cohort of children? The Department's directive indicating that the most support should still be directed to those children with the greatest level of need has implications for all children and not just children with Down's syndrome. We must remember that the learning experiences of all children will be impacted by this and not just those with special needs. Things are going to get worse if resources are spread more thinly.

While we have had engagement with the Department of Education since the circular was issued, I would like to take this opportunity today to express our concern and disappointment with the complete lack of consultation between the Department of Education and disability groups such as Down Syndrome Ireland.

While we of course respect the necessity for unions and boards of management to be a big part of the consultation process, organisations such as those represented here have a wealth of knowledge and of members’ experience to draw on. Had we been involved in the consultations at an earlier date, the concerns we are raising today would have been raised at a much earlier stage; parents would have had more opportunity to reflect, respond and prepare; and they would not now be in the position of urgently contacting public representatives to safeguard their children’s educational future.

All in all, we consider this action of the Department of Education to be very detrimental for our members with Down's syndrome. Every year, between 130 and 150 babies with Down's syndrome join our population. In the 1980s, the average life expectancy for someone with Down's syndrome was about 25 years. It is now about 60 years. The Department of Education, by failing to provide adequate teaching supports in childhood, is kicking the can down the road. It is not just impacting on the lives of children with Down's syndrome right now but is storing up social and economic costs for the future. Students with Down's syndrome have the right to be educated in their local mainstream school. It is not unreasonable to expect that any additional support and resources required should be provided.