Ms Margaret Lowndes:

I thank the committee for inviting the Dublin 12 parents autism support group and the D12 Campaign 4 Autism Inclusion to present to the Joint Committee on Autism today. I am a parent of two children with additional needs and the chairperson of the support group and campaign. I acknowledge the input of our vice chairperson, Helen Holmes, who worked with me on today's submission but is unable to attend.

Our organisation was set up in 2018 due to the frustration of parents regarding the lack of education provision, support services and therapies for children in our area. We advocate for equal opportunities in education and improved disability services and to promote acceptance for our children with additional needs in our community and beyond. The work of our campaign over the past four years has resulted in the opening of a brand new autism special school in Crumlin in 2021. Thirty-six children were enrolled initially and that has now increased to 48. In addition, according to the website of the National Council for Special Education, NCSE, the service provision in the Dublin 12 community has increased from seven primary autism classes and one early intervention class in 2018 to 16 primary autism classes and three early intervention classes now. It is also worth noting that, at secondary level, there are currently only six autism classes.

We achieved this by presenting our autism inclusion proposal for Dublin 12 to show there were not enough suitable placements within the community for our children and that children as young as four years of age were continuing to be placed on home tuition or bussed out of the area. Continued pressure and meetings with the Department of Education, the NCSE, Ministers and our Deputies and Senators followed, as well as the arranging of local protests.

While we are happy with the progress to date, there is more work to be done to ensure all schools in the locality have an autism class to ensure inclusivity for all. There are only three primary schools and three secondary schools across Dublin 12 with no autism classes and no immediate plans to open one. We continue to liaise with these schools and the NCSE and Ministers on how they can be assisted.

In addition to this, we advocate for children with additional needs who attend a mainstream setting to receive the extra support and the correct resources needed to assist them and to support teachers in their roles, be it full training in autism or training in other comorbid conditions. The NCSE provides training but places are extremely limited. Teachers need training when in college so they have more time to understand the different abilities of the wonderful children they will meet in their classroom. In January 2021, the first national training programme for special needs assistants, SNAs, was introduced by UCD. This is a positive step forward but the course needs to be accredited as the SNAs need to be able to work and look after our children every day. We look forward to the course being rolled out further.

At present, special schools throughout the country have no therapists. The new special school opened in Dublin 12 was given the school inclusion model, SIM. The SIM is not fit for purpose. It does not allow therapists to work directly with children but instead gives teachers advice on how to handle situations. This model is not suitable for a special school, or any school. Our vision is for all schools in Dublin 12 to have at least one autism class and for children to receive suitable educational placements. We want schools to be able to liaise with each other while building their autism school communities and to have support from the Department of Education and the NCSE to do this.

Our autism support group for parents was also launched four years ago in response to a massive need for families to have a place to go in the area where they could meet other families dealing with similar issues. We pride ourselves on our three core pillars of inclusion, support and advocacy. We provide monthly support groups for parents and a safe space to come and chat or just listen. Our community has grown, and it is great to see parents now connecting with each other. We have been organising activities for children with additional needs for more than 40 families in our community since 2018. We have run family Lego clubs, sports clubs, sensory play activities and trips to jump zones and farms. We have held Christmas parties and arranged socially distanced visits from Santa Claus and the Easter Bunny during the Covid pandemic restrictions. In partnership with Dublin City Council, we were asked to hold an autism awareness morning and a celebration party for World Autism Day in April to promote awareness and acceptance in our community.

A common theme among our families is that their children have very limited opportunity for social interaction, so we reached out to sports and swimming clubs. We liaised with the local library and now we have an amazing cubby that children can use. Many of our local sports clubs offer neurodiverse children an opportunity to take part in football, GAA, boxing and swimming. These sessions are specifically tailored to meet the needs of our children while also providing them with a safe place to enjoy sports like their peers. To promote advocacy for parents, we invite a number of key speakers to talk to us to ensure we understand our own rights and those of our children in areas such as education and disability services. Parents want to be empowered when it comes to their own children, and there is no better advocate for a child in their early years than their own parent.

The roll-out of the progressing disability services model, which has been delayed, is fantastic on paper but in reality it is a different story.

We spoke previously at a joint committee in May 2022 on the main issues, including communication, inconsistencies across the teams, waiting lists, recruitment and grants for families to access therapies. We also met the Minister of State, Deputy Rabbitte, to discuss these issues and, most important, to make recommendations for the improvement of services. Families are waiting too long for interventions for their child, and big social media announcements in advance of any real action give false hope to parents. A child who is referred to the disability teams will not be seen by a member of the team for up to two years. That is two years of families being left in limbo with no support. Families seek out our local support group as they want reassurance, understanding and to be supported. As parents we need a clear pathway to services with the HSE. A letter saying your child will be seen in two years and no other communication during that time is simply not good enough. A key area affecting families right now is the cost of living. Private therapies are in increased demand due to the failure of the HSE. This time last year a 45-minute session with a private occupational therapist cost €100. Now it costs €120.

If the committee takes only one thing away from this meeting, it is that it really listens to the parents and caregivers on the ground supporting their children and young adults. We are the people who can tell the committee the reality of dealing with the health service and accessing education. Too much time is spent discussing the same issues year after year with absolutely no change. While the system fails the people it is trusted to help, local support groups are left to support families through these challenging times. Families support families. Support groups need to be recognised for the voluntary work they do. These are parents who come together and help their communities.

When parents start their journey, it can be very lonely, but in Dublin 12 they now know there is a group to support them and that makes a huge difference. It gives them peace of mind in a space where they can build friendships for themselves and their children. As the saying goes there is strength in community. Alone we can do so little, together we can do so much.