Ms Noeleen Smith:

I thank the committee for inviting us here today. CAPS was established in 2011. It was set up by parents of autistic children who saw a gap in services. In the beginning there were nine members registered with CAPS. Throughout the years it has continued to grow and expand. Due to the yearly rise in members and increased workload, it became a company limited by guarantee in 2018. Today, there are 96 members from 85 families registered with CAPS, and ten of these families registered have multiple autistic children and adults. Every child has a right to survival and development. The Government acknowledged this when it signed the United Nations Convention on the Rights of the Child. However, 20 years since the son of Bernie Nelson, founder of CAPS, was diagnosed with autism, our children are still without vital services. They are left surviving but developmentally living nowhere near their potential. How sad is that? How utterly sad, and for us as parents of these kids, how frustrating and upsetting that they are not where they could be, deserve to be and have the right to be. There are no services. Every child has the right to an education. Education is vital for us all to reach our full potential but without regular occupational and speech and language therapy, how can our children be comfortable in their classrooms? How can they learn how to cope with the overwhelming or indeed insufficient sensory stimuli at school? How can they learn how to communicate with their teachers and special needs assistants, SNAs, in order that they can concentrate better, understand better, regulate themselves better and ultimately, learn better? They cannot do it without these therapies, and we as parents have to look on, helplessly, as they struggle day in and day out.

Just last week, I had a meeting with Enable Ireland, looking for help. My eight-year-old daughter is suffering with meltdowns, kicking and bruising her legs and chest. She cannot communicate the problem and we are both left totally distraught and exhausted. Since she does not get occupational therapy or speech and language therapy, I wanted help. I wanted some respite in order that my husband and I could have a break. I got nothing. I was advised that because she is in an autism class in a mainstream school, she would not be eligible for respite. The respite service is only available to those in special schools. Even then, there is a three-year waiting list for respite in Cavan and Monaghan. It has gone too far. Enough is enough. There are three, four, and even five-year waiting lists for therapy, respite, assistant dogs and everything. It is just not good enough because, as we hear all too often, early intervention is key. In Cavan and Monaghan, the only saving grace that autism families have is CAPS. CAPS is a registered charity that provides a variety of supports to families in County Cavan and surrounding counties. Some of these services include the Saturday club, which is held weekly for the younger members of the group. Activities at the Saturday club include music therapy, arts and crafts and other activities such as games and sports. We have the computer club, which is held weekly on Friday evenings throughout the year for the older members of the group. We have seasonal camps, which are held during the school holidays at Easter, summer and Hallowe'en. These camps include trips to play centres, pet farms, trampoline parks, zoos, a chocolate factory and many more locations around the country. We have monthly social morning events on the first Tuesday of each month in the Teach Oscail family resource centre, County Cavan. These meetings are open to everyone, not only members of CAPS. We provide social outings, which include going to the cinema, bowling and restaurants. The aim of these outings is to improve social skills and integration. We also provide a range of workshops, training and therapy sessions as and when required. Previous services have included first aid, meditation, mindfulness, reflexology, parenting programmes, coaching and counselling. During all CAPS events, all members are accompanied by a volunteer carer. CAPS is very fortunate to have an amazing team of volunteer carers year on year. Our volunteers include students from transition year, TY, classes, colleges and those looking to give back to the community.

CAPS is constantly working on the planning, preparation and delivery of projects and initiatives to support its members, their families and volunteer carers. CAPS constructed a sensory garden that is located beside Cavan County Museum. This garden is wheelchair accessible and open to everyone. The aim of the project is to provide a safe environment where individuals of all ages with disabilities can visit and explore their senses without feeling overstimulated by them. The garden is also beneficial for parents, guardians, carers, siblings and others who do not have disabilities. In it, they also have a safe place to relax and unwind. This project was part funded by the Department of Rural and Community Development and Cavan County Council under the CLÁR scheme and municipal district funding. Safe and secure spaces like this are greatly lacking throughout the country. This is the only public sensory garden in the region to date. The CAPS sensory garden was officially opened on 28 April 2022 as part of our Together We Can All Make A Difference autism awareness campaign.

At CAPS we conduct almost all of our work on a fundraising basis, with little Government funding. We certainly would not be able to provide any of these camps or activities without the ongoing support we get from our fundraising events throughout the year and our volunteers. Groups like CAPS should be nationwide and should be State-funded via the HSE. This is because they provide the services that the HSE is failing to provide. The HSE should be providing effective access to quality occupational therapy and speech and language therapy. It should also provide therapists to regularly visit schools. In America, studies have been done on babies who have a higher chance of having autism because older siblings who have autism. These studies are enabling autism traits to be picked up as early as at eight weeks after birth. That is when early intervention with these children needs to start. We need such intervention.

We thank the committee for the opportunity to have our voice heard. We hope that it will take all our work to the next level and that it will work equally as hard, with the goal of having these much-needed supports and services for our autistic community provided and funded by the State. We, the parents, have been doing the Government's job but we should not have to do it.