Ms Karen O'Mahony:

I am a mum to four children. Two of my sons, Sean and Stephen, are autistic. I am also a co-founder of the Rainbow Club Cork Centre for Autism. I am grateful for this opportunity to come before the committee today and discuss the many issues we see in our lives and the lives of the 1,028 families who attend our service weekly. For years, families like ours have been treated badly by heavily funded State agencies, left behind without support, put into situations they do not deserve, and our teens, children and young adults discriminated against and neglected in so many ways. This story is not uncommon. I am sure the committee members have all heard these stories, but the reality is this is our life every day. My sons have been let down by the State and the education system that did not cater for their needs, breaking the trust of Sean and Stephen and leaving them with trauma and emotional fallout that was often aggressive and which our family had to endure. The current provision of child and adolescent mental health services needs to be examined, and there are many teens like my son Sean on medication that is not being monitored appropriately.

A black hole we ended up in with no one to get us out led Jon and I to campaign and set up the Rainbow Club so that children and families could receive support in an holistic, caring and loving manner which they deserve and in which will thrive. We provide 21 activities and interventions six days a week. We cater for children from two years old up to adults of 23. We provide a place that can help them to cope daily, build friendships, reduce anxiety around sensory issues, regulate themselves, accept themselves for who they are and what they need, and encourage them on their pathway, being by their side along that journey. We provide sibling support, parent training, counselling and support groups. We advocate in schools for families. We support families with housing difficulties or difficulties with forms and service provision, or who are experiencing hardship and homelessness. Our sports department has many programmes, all of which target the difficulties that stop and exclude children and teens from participating in mainstream sports daily by building a model that will allow them to learn, with no expectation or stress in an activity that is supposed to enhance positive mental health and well-being. Computer and games programmes is the future for many, and is the skill the children need to know about and learn. The groups are all set up for every child so he or she can be part of a group enjoying activities, growing in confidence and equipping them with what that child needs for his or her adult life.

We are proud of what we have built. Shame on this State for not supporting us with the funding we so desperately need to expand and provide more services to families in Cork city and county. Families are so desperate that they travel to us from Limerick, Kilkenny, Waterford and now Killarney, all because there is nothing there for them. We will replicate. We will get our forever home because I will not stop until Rainbow Club is national so no one is left behind. I will never give up fighting until this country sees the child and family at the centre. Rainbow Club is a universal model for autism which is now seven years old, thriving in a little corner in Mahon, Cork, and filled with laughter, healing and progress every day. It is a community model that has the family at the heart of it with a strategy that is actually achieving its goals. Our organisation, including our café, offers an inclusive environment for all and provides jobs for local people and autistic adults. Our café is a training café that welcomes students from the National Learning Network, NLN, L'Arche, Aspect, schools and colleges. It is where Seán, the Autistic Baker, found his love for baking. It is a haven for all, buzzing with chatter and modelling acceptance every day.

Rainbow Club is a beacon of hope. It shows the way services should be provided, the impact this model has on families' quality of life and the impact of the wrap-around support to the autistic person to thrive and live a fulfilling, positive life, allowing him or her to participate and give back. Autistic people have the right to be included, accepted and supported in their life but this is not the case. They are made to feel more excluded and rejected every day in the society we have created, and that needs to change.

The committee has the opportunity to listen to all sides. Autistic persons, advocacy groups, community groups and parents should all be part of the discussions and debates for this new policy, ensuring every voice is heard. “People first” should always be our goal. Trying to put supports in place is not acceptable anymore; action is now needed.

Alternative education is another programme we want to provide in education, with a sensory diet for the child and teen who cannot cope, and if the correct supports are in place, it can provide a wrap-around for the individual and a transition back to school, all catering for the needs of the person in a caring nature. Summer provision is also a must. Without appropriate respite, these families need support and consistency throughout the year. We also supply that, again without State funding. Too many schools refuse to do it or to carry it out effectively. Too many children go without help, routine or structure during the summer months and the fallout for them and their families is a high price to pay.

I ask the committee members for three things, namely, a plan and policy that will provide what autistic people and their families need, support for the Rainbow Club model and the impact it has and can have for families in Ireland if replicated, and a thought for children such as my sons, Sean and Stephen, when they make decisions, implement change and continue their oversight of the policy that will impact on their future. The committee can make the world a better place for them if it hears their voices today.

I thank members for listening to the voices I represent in the Rainbow Club.