Ms Miriam Kenny:

I am the chairperson of Involve Autism, which is a voluntary, parent-led support and advocacy group based in D6 and D6W in south Dublin. I am joined today by our deputy chair, Alan Power. We are both parents of autistic children. We thank the committee and Chair for inviting Involve Autism to speak.

Involve Autism was founded in 2018 by a small group of parents of autistic children who came together to campaign for appropriate school placements for their children in D6, D6W and the surrounding areas of D16, D14 and D18. We now have a large membership and are a voice for autism in our local community. Our three pillars are support, advocacy and inclusion. We hold bimonthly support meetings and social activities for our children, and are developing partnerships in the community with groups, clubs, etc., to promote inclusion. We frequently hear at our support meetings about the difficulties parents experience accessing an appropriate education for their autistic child, plus their fight in relation to accessing services and supports. We also provide support through our social media platforms and are contacted frequently.

The difficulties experienced by parents is a source of great stress, anguish and anxiety that could be lessened if the system provided the support required to meet our children’s and families’ needs. Involve Autism has found over the past four years that our parents receive little support from the bodies that should be providing it and we are filling the gap in a voluntary capacity. Our advocacy has focused mainly on addressing the lack of autism classes in our area. We have also advocated strongly regarding the lack of access to services for our children.

I am passionate about health and education as I have worked in both sectors. Today we will be focusing on our advocacy in relation to the education of our autistic children. When we started our campaign, only one primary school had an autism class in our area and there was no autism class at second level for a large schoolgoing population. We were in fact the worst served area in the country. We were advised at the time that there was no issue in south Dublin. We have fantastic schools both at primary and second level in D6 and D6W. We have non-fee-paying and fee-paying schools and schools with different patrons and management bodies.

There are autistic children who are well supported in the mainstream setting, but some of our children, despite this support, struggle in mainstream education. There is a cohort of children who need the extra support of an autism class. Herein lies the problem. Our children who needed an autism class were unable to attend schools in the local community with their siblings and peers. They spent their days being bused past our schools. This appeared to be an acceptable practice, with parents being advised to apply to schools in other areas that had autism classes, as there was in essence none in our area.

Parents trying to find an autism class for their child were handed a list of classes by the NCSE and were applying to up to 30 schools. Our freedom of information request in 2021 found that €72,000 is spent daily transporting children with additional needs across south Dublin at an annual cost of €11.6 million, demonstrating the lack of historic planning by the NCSE. We were determined to make meaningful change and embarked upon a significant campaign. We have led a data-driven campaign, presented our data to several key stakeholders and been relentless.

Our campaign continues to be a full-time job, but this is not our job and never should have been. Our campaign in part led to the commencement of the section 37A process in south Dublin in November 2019. We were hopeful following this that there would be significant change in our area, but this did not happen. Unfortunately, some of our well-established schools have been reluctant to set up classes. Newer schools being set up by Educate Together and DEIS schools nationally opened autism classes. We have worked tirelessly behind the scenes to get autism classes established and have had to be cognisant that we were in a vulnerable position as our own children were involved.

The experience of parents of neurotypical children as they search for a school placement is for the most part seamless. When you have an autistic child, however, it is a perilous and extremely stressful journey. Our parents recount stories about having little to no support and a lack of up-to-date information regarding autism classes from the NCSE. Parents are sent a list of classes and told to search for a class for their child, again with little support. In our parents’ experience, searching for an appropriate school placement includes ringing schools listed to be informed that, in many cases, autism classes are full, having to send up-to-date psychological reports to each school applied for, experiencing difficulties with enrolment policies, anxiously waiting to hear if a child has secured a place and having little to no choice, resulting in many children travelling unnecessarily long distances to school. There are lots of other points to be raised in relation to that.

Parents recount stories of difficulties experienced when their child is considered to be in an inappropriate setting and how some children are managed out of schools due to those schools not having appropriate supports for the child. This leaves parents in a stressful and vulnerable position, with no one to help them advocate for their child and navigate the education system. At all times we encourage our parents to work in partnership and collaboration with their schools and empower our parents so they have an awareness of their children’s rights with reference to education.

As part of our campaign, we held two large public meetings, one in February 2020 and one in April 2022, to highlight the issues that our families and families across south Dublin faced in securing an appropriate school placement for their autistic children. We invited all key stakeholders to both meetings to encourage collaborative change in the educational landscape in the area. We invited politicians to sign a pledge to ensure classes were set up properly and schools were fully supported in doing so. We made a formal complaint to the Ombudsman for Children and our concerns are referenced in the Plan for Places report. We want an excellent, quality education for our children in schools in our local community.

We recognise that there has been some progress in our area and that our voices have been heard but we have continued to campaign. Our partnership approach has led to a lot of progress and positive relationships being formed locally and nationally. D6 and D6W still have no early intervention class and a number of schools are without autism classes at primary and secondary level. We very much welcome the announcement by the Spiritan Education Trust in March, and we look forward to further change in the area.

At a recent morning support meeting, it was heartening to hear one parent describe how her child is now in a local autism class and what a huge difference that has made to her child’s life and her family’s life. We know from speaking to principals the difference it has made to the whole school community to have an autism class in their school. Our schools need to be fully supported by the NCSE, the Department of Education and the HSE. To the schools that have established autism classes, we thank you for your commitment to our children and for making such a difference to our children and our families’ lives.

We want the committee to look at the following points. As Donogh O'Malley stated: "We will be judged by future generations on what we did for the children of our time." We feel there needs to be accountability to ensure the needs of our autistic children are met by senior political leaders and senior managers in the Departments and Government agencies involved. We would like a review of the NCSE, especially its operational functions. We want data-driven strategic planning for our children and not an any-place-will-do approach. We want a strategic vision regarding to the education of autistic children that is cognisant of Article 24 of the UN Convention on the Rights of Persons with Disabilities, UNCRPD, and that is child-centred. We want recognition of all educational transition points, preschool, primary school, including junior primary and senior primary, secondary school and post primary school options; a comprehensive plan for the educational pathway for each child; a centralised application process for autism classes, like the Central Applications Office; meaningful support for families; support for schools and allocation of resources required, including wraparound supports; and an advocate to support parents when they have to navigate difficulties with their child’s school.

We would like an overhaul of the structure and governance of schools' boards of management; an oversight and standardisation of admissions policies for autism classes by the Department of Education to ensure they are non-discriminatory; and comprehensive tracking and support of autistic children who are unable to attend school due to inappropriate school placement, are finding it difficult to attend school or whose educational placement has broken down. We would like training for teachers, SNAs and all who support our children. We would like full implementation of the Education for Persons with Special Educational Needs, EPSEN, Act; to ensure an inclusive education, as per Article 24 of the UNCRPD; and a diversity and inclusion officer on the board of management of each school.

We need to look at international best practice models and at the integration of health and education, for example, the education health and care plan, as in the UK, looking at the child holistically and ensuring that wraparound supports are in place. We would like our parents to be met with compassion by all they interact with, particularly schools. Parents are the primary educators of their children and should be encouraged to work in partnership and collaboration with their child’s school. Most of all, we should be and need to be ambitious for our children in order for them to reach their potential and an excellent education is a key enabler of that. Our children will become adults and deserve a meaningful future. They need and deserve an education that is excellent and why should we expect any less?

We commend our Involve Autism parents plus the parental advocacy groups nationally who have raised their voices in an effort to instigate change.

I also thank all those who have supported Involve Autism Dublin 6 on our campaign to date. I will leave the committee with the following:

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.

Our children matter.