Maria Byrne (Fine Gael)
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I welcome the Minister of State, Deputy Naughton.

Nessa Cosgrove (Labour)
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Cuirim fáilte roimh an Aire Stáit. World Down Syndrome Day took place on 21 March and many of us will have celebrated in all our constituencies with wonderful music and dance. There were performances celebrating World Down Syndrome Day, and I was fortunate to attend a wonderful event in Sligo Town Hall.

When I was there, I spoke to the mother of a young person, Constance. Constance is now aged 20 and has Down's syndrome. Constance has always been a very bright and enthusiastic child who has made really good and consistent progress in her development and mastery of life skills. Then, about 18 months ago, Constance's progress slowed and actually started to reverse. A loss of previously acquired developmental skills in any individual, such as toileting skills, eating independently and dressing oneself, is known as regression and is naturally frightening and worrying for both the individual and the individual's family. Constance also developed behaviours that were not characteristic of her personality at all. Constance has always been a gentle, sociable and loving young woman, but suddenly she became withdrawn from her friendship group and peers, and now she has inexplicable outbursts of anger and uncontrolled inappropriate laughter.

Assessments and interventions followed from diverse health and social care professionals - therapists, physiotherapists, speech and language therapists and behavioural and occupational therapists, along with psychology and education services - all trying to help Constance's family to understand what was going on. A range of diagnoses could have explained the deterioration in Constance's quality of life. One is Down's syndrome regression disorder, which is an autoimmune disease caused by the body's response to something, perhaps an infection. People with Down's syndrome, as most of us here know, have an additional chromosome. That particular chromosome - chromosome 21 - seems to increase the frequency of autoimmune diseases, infections and brain or neurological disorders. An analogy that has been used to help me understand this is that while most of us have a hearing aid listening to what is going on in our body, people with Down's syndrome have a satellite dish, so the body's response to a simple infection can be completely overwhelming. There are other similar conditions, including Down's syndrome disintegrative disorder and paediatric acute-onset neuropsychiatric syndrome, PANS. There are a number of other conditions. With some of them, symptoms can be mirrored in one another. Sometimes, these behaviours may also be confused with autism.

If the cause of the condition varies, so do the treatment and the pathway to recovery. Currently, as testing is determined by the observation of symptoms, a treatment for one condition may be trialled while the individual is undergoing other treatments and other testing for another condition. The crux of the whole matter, however, making it very confusing, is that recovery with the right treatment is possible for this. It is crucial, though, to get an accurate and timely diagnosis. Eighteen months on from the onset of her symptoms, Constance is still undergoing assessment under the leadership of an advanced nurse practitioner. This matters because treatment in the first two years of the onset of symptoms has been shown to have a dramatic and positive impact on the outcome for the person with Down's syndrome. I ask the House to imagine if any person with a learning delay or disability were to display symptoms of suddenly not being able to toilet or dress himself or herself and bursting into these uncontrollable fits of laughter. None of us would be expected to wait for 18 months not knowing what is going on.

How can we approach this in a way that ties in with the proper assessment and diagnosis of this under the Equal Status Act and Article 25 of the United Nations Convention on the Rights of Persons with Disabilities? People should have equal access to healthcare and appropriate diagnostic treatment. This is not a criticism of the excellent staff who have helped Constance, but something is wrong. We need to equip medical professionals to work with families in promptly recognising an issue with a child or young person's development and then swiftly moving on to assessment, diagnosis and treatment.

I know I am running out of time but I call on the Minister of State to work with the HSE and the Minister for Health to set up a task force to take in a number of different professionals together to look at Down's syndrome regression disorder. Since I have brought this up - I know you are giving me extra time, a Leas-Chathaoirligh - other concerned parents have contacted me about it. There is not enough research done about it. There is treatment available in other countries. Could people who are displaying these symptoms of Down's syndrome regression disorder be directed to proper treatments in other jurisdictions? I am sorry for going over time.

Hildegarde Naughton (Galway West, Fine Gael)
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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.

Nessa Cosgrove (Labour)
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I thank the Minister of State. It is really good to hear such a positive response. With regard to delays in treatment, parents and experts are saying that if it is not treated within the first 18 months, the delays in treatment can lead to irreversible and permanent regression in people.From speaking with parents of children who are displaying symptoms of Down's syndrome regression disorder, they are hoping that we could establish a task force that would encompass all the different professionals in the HSE and Down Syndrome Ireland. It would look to see what the best pathways for children and young people are to receive the required testing and acute diagnosis. If they are not available in this jurisdiction, can opportunities become available beyond our borders, whether privately or publicly, funded by the HSE or the Department of Health? Part of the theme of World Down Syndrome Day was to improve support systems. I know we are discussing a small cohort of people but this is a support system that could change their lives, because early intervention is crucial.

Hildegarde Naughton (Galway West, Fine Gael)
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I thank the Senator again for raising the issue. The suite of supports that may be required for a person with Down's syndrome regression disorder can come from across the health and social care system, incorporating but not limited to supports from the mainstream healthcare system, such as hospital supports or primary care supports, as well as inputs from specialist disability services, depending on the presenting needs of the individual and the resulting appropriate care pathway. I am committed to ensuring that disability services are appropriately resourced to provide support for individuals who need them. I will raise it with Down Syndrome Ireland today and get feedback from its members about their lived experience with this.