Ms Cara Steinmetz:

I thank committee members for the invitation to today's meeting. I am a member of the management committee of Down Syndrome Cork and, more importantly, parent to Noah, who is 11 years old and has Down's syndrome. Noah is currently in fourth class in a mainstream primary school. The feedback from his school is that he is a kind, loving and very social little boy, he has a strong work ethic and his bright and bubbly personality adds so much to his class and school. Noah has an intellectual disability and profound speech delay. He has low muscle tone and needs speech therapy, physiotherapy and occupational therapy to achieve his full potential at school.

At the age of six, Noah was referred from early intervention services to community services. We were advised at the time that there was a three-year waiting list. As of now, at 11 years old, Noah has never had speech therapy through disability or community services. He is not alone. A total of 65% of respondents to a 2021 Down Syndrome Ireland survey reported that they had received zero speech and language therapy sessions. In addition, 87% had received zero occupational therapy support and 70% had received zero physiotherapy in the previous year.

Article 25 of the UN Convention on the Rights of Persons with Disabilities, CRPD, sets out that states parties shall provide "those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities". Therapies for children with Down's syndrome clearly come under this provision.

As Noah's mum, I gave up a successful career to care for him and, in effect, provide him with the one-to-one services he needs. I have had to learn how to help his speech and meet his physiotherapy and occupational therapy needs. For us, as for so many parents of children like Noah, Down Syndrome Cork has been our only reliable source of support. It is a parent-led charity organisation that is part of the Down Syndrome Ireland charity group. Our motto is "Share the Journey". Unfortunately, for all our members, the journey when it comes to access to disability services is one of constant worry, uncertainty, inadequate support and endless struggle.

For example, it has always been important to us that Noah be educated in the community in which he lives. With that in mind, he attends a local mainstream school. As he is in fourth class, we are now looking towards secondary education. We can see that as school gets more difficult, the academic gap is widening. Noah needs specific supports to help him to move at his own pace at school. Our first requirement was to have a psychological assessment of needs to assess his level of ability for secondary school. Again, we were let down. There was no option for us to avail of the National Educational Psychological Service, NEPS, and, therefore, we had to go privately at a cost of €750 for assessment. Since the assessment, I have visited or contacted every secondary school in our area. I have not been able to find a suitable mainstream secondary option that can provide the support Noah needs. Special education has been recommended and we have an excellent special education secondary school in our area. However, it is completely oversubscribed and there are simply no spaces for children coming from mainstream school. There is no support, no information, no contact and no transition plan for my son. There is simply nowhere to go.

Our children have proved they have so much potential to achieve at school, follow an educational path that leads them to meaningful employment and be able to contribute to society. Down Syndrome Cork has been steadily building our own capability over the past 40 years to enable our children to communicate, learn and ultimately gain employment. We are a dynamic branch that is volunteer-led and with a professional approach to everything we do.

Speech therapy is the single most important early intervention in the life of a person with Down's syndrome. As mentioned, most of our children receive little to no speech and language therapy intervention from the services. However, we have created a speech and language therapy service for which there are no waiting lists. This is only possible through constant parent-led fundraising, for which we receive no State support or subvention.

Our Field of Dreams initiative is a wonderful example of what financial support, State support and appropriate management can achieve. In 2014, Down Syndrome Cork recognised the need for specific educational and employment support for our adult children. With support from the Munster Agricultural Society and Cork Education and Training Board, as well as huge support from the Department of Agriculture, Food and the Marine, we have built a social farming and further education facility for people with Down's syndrome. Currently, we have 51 students on site every week on our campus receiving bespoke educational programmes. The programmes at the Field of Dreams facility have been a tremendous success, with 16 out of 18 graduates securing employment. Last year, Down Syndrome Cork also launched an employment programme based at our charity shop in the city. Through this initiative, we have been able to provide 12 adults with paid meaningful part-time work under a pilot project that is being replicated by Down Syndrome Ireland.

Down Syndrome Cork has proved that with the right support we can deliver a sustainable model that delivers life-changing results for our members. However, as parents, we cannot continue to do it alone. We are asking for financial support for the services we provide and that our children have co-ordinated and guaranteed timely access to multidisciplinary healthcare and educational services.