Ms Aileen O'Donovan:

I thank committee members for their kind invitation to this meeting to discuss disability services. I am here with my husband, Barry, on behalf of the West Cork Down Syndrome Support Group. We have three children. Our youngest son is 12 years old and has Down's syndrome. Having a child born with Down's syndrome can be a very unexpected and daunting journey and nothing will quite prepare you for it. In addition, some of our children can be born with complicated medical needs, for example, complex heart defects, and this can take over your immediate attention. Every child born with Down's syndrome benefits from early intervention services like speech and language therapy, occupational therapy and physiotherapy. These services are then complemented by the services of clinical nurse specialists, social workers and psychologists as part of the multidisciplinary team approach.

The West Cork Down Syndrome Support Group was established in 2013 in Skibbereen, County Cork. Our aim is to provide support for our children with Down's syndrome and their parents, siblings and wider families. It was set up by parents who felt that we needed a local base, as our nearest branch of Down Syndrome Ireland was in Cork city, which is approximately 80 km away from Skibbereen and even further for our families who live farther west.

One area of need highlighted was and still remains speech and language therapy. As a group, we have sourced private speech and language therapy and have organised group activities that help with the social, physical, sensory and emotional well-being of our children. Our children, with their siblings, have got to enjoy activities such as horse riding, pottery, swimming, music and dance. These gatherings have given our parents opportunities to meet up, share experiences and, in turn, give support to one another. This is invaluable, as having someone with additional needs can be a lonely and vulnerable place. All help and support are truly needed and welcomed. We have been fortunate that Down Syndrome Cork has come on board with us and now provides a successful outreach speech and language therapy clinic in Skibbereen weekly.

In 2013, our local service provider, CoAction, entered into partnership with the HSE to provide services to children up to 18 years of age with complex needs, for example, intellectual disabilities, including children born with Down's syndrome, autism spectrum disorder, ASD, physical and sensory disabilities, and complex developmental delays. This new service was part of the national Progressing Disability Services project, with west Cork being one of the first areas in Ireland where it started. Our services changed a great deal following this changeover, mainly due to the workload of the therapists providing for an increased number of children with a complexity of needs. Assessment took a large proportion of their working time. This had a negative impact on families, as we had had an enviable level of services beforehand. Providing these services is a continuing challenge for our service.

As parents of children with Down's syndrome, we are faced with multiple challenges when meeting the needs of our children. These challenges can be in the form of what services we do or do not get, coupled with our experiences and our expectations of the services we are receiving. There are also greater financial outlays, as our children may require specialised footwear, clothing and even transportation. Paying for private assessments and therapy can be another financial concern for families. Furthermore, as our children go through the different ages, we depend more on the school system as our provider of services, from preschool right up to secondary level with the hope of progressing on to third level education. In a rural area like west Cork, we do not have special classes for children with Down's syndrome, so our children rely on limited resources within our mainstream schools with the guidance of our therapists, with varied levels of follow-up. There is a greater requirement for our families, parents and schools to carry out the therapy for our children.

We have worked hard to have our children be included the same as any of their peers. As this can be done with limited resources, committee members can only imagine what could be done within a pathway of services dedicated to children and adults with Down's syndrome.