Hildegarde Naughton (Galway West, Fine Gael) | Oireachtas source

I thank the Senator for raising this important issue and for offering me the opportunity to respond. The Government is committed to advancing the rights and improving the lives of people with disabilities. We are working towards the vision of the United Nations Convention on the Rights of Persons with Disabilities. This translates into putting people with disabilities at the heart of the services, enabling independence and choice, and supporting them to participate in life and in the life of their community with access to the supports they need. To do this we need to deliver a real step change in disability services to make them easier to access, more person-centred, more responsive and tailored to the individual needs of those who use them.

While the large majority of people with disabilities access the services and supports they require through mainstream services, funding from the Department supports the approximately 80,000 people who access specialist community-based disability services provided by or on behalf of the HSE. These include services such as personal assistance, home support, day and residential services, respite services, multidisciplinary therapies for children and adults, as well as community neurorehabilitation services.

My Department has allocated €3.2 billion in funding for disability services delivered by or on behalf of the HSE. This is a record amount of funding and represents a €1.2 billion increase over 2020 levels. It demonstrates the Government’s strong commitment to enacting meaningful change in specialist disability services. In 2025, €333 million in additional funding over and above the 2024 budget has been allocated. This funding will provide for some natural demographic change in service demand and will go towards providing for the increased cost of providing services. It will also fund new developments under the action plan for disability services.

On the Senator's specific question, Down's syndrome regression disorder, DSRD, also referred to as regression, is a rare but serious disorder that occurs in some adolescents and young adults with Down's syndrome. Regression is used to describe the loss of skills an individual has previously learned. These skills can be daily living, language, movement or social skills. The loss is often sudden and occurs over a period of weeks or months. The cause of regression is thought to differ among individuals, and I understand there is ongoing research to look at causation and treatment options. The role of the HSE is to provide a multidisciplinary team approach, which includes the provision of health and personal supports required by people with Down's syndrome and Down's syndrome regression disorder, and it incorporates hospital, primary care and community services. It is important to note that specialist disability services are provided based on the presenting needs of an individual rather than a specific diagnosis. Services are provided following individual assessment according to the person’s individual requirements and care needs.

The majority, around 80%, of specialist disability provision is delivered through non-statutory sector service providers. The HSE works in partnership with organisations, including section 38, section 39, out-of-State and for-profit organisations, to ensure the best level of service possible is provided to people with a disability and their families, within the available resources. One of these organisations is Down Syndrome Ireland. This organisation has more than 3,000 members and 26 branches nationwide and provides a range of services, including early intervention and development programmes, mother and child groups, therapy services, employment opportunities, counselling and adult advocacy services. Down Syndrome Ireland has specialists in the areas of health, speech and language, early development, education and adult education and independence that enhance the lives of thousands of children and adults with Down's syndrome.

I am grateful for the work Down Syndrome Ireland does. I am also proud of the role my Department plays in providing supports for those with Down's syndrome and Down's syndrome regressive disorder, in tandem with the broader health and social care provision sector. I will be meeting with Down Syndrome Ireland today and I will raise this and get feedback from its representatives. I am also happy to engage with the HSE on this. As I have said, there is research happening in this area and my door is open to trying to progress access to services, especially for children and adults with Down's syndrome.