Action must be taken to support people with Down syndrome who are experiencing regression, a Galway East Fine Gael TD has said.
Deputy Pete Roche, TD for Galway East, has highlighted the findings of Down Syndrome Irelands Health Survey and is calling for a review to be carried out around how to better support those with Down syndrome regression.
Among the most urgent findings of the survey is that 17% of families have witnessed sudden and unexplained regression in their loved one with Down syndrome—a loss of communication, mobility, or daily living skills. The loss is often sudden and occurs over a period of weeks or months. In many cases, families are left without answers, appropriate medical support, or clear pathways to treatment.
“This is an extremely distressing and under-recognised issue that requires urgent investigation and a coordinated clinical response. Time matters. Early action can be the difference between recovery and long-term decline,” Deputy Roche said.
“Worryingly, we also see in the report that there is a lack of routine hearing checks for older adults, despite known links between hearing loss and dementia and a limited GP engagement, with just 31% seeing a doctor annually or more.
“The survey also found that there is an over-reliance on ageing parents and carers to coordinate essential healthcare. We need to look at how we can better support people with Down syndrome so they can live their lives to the fullest.
“We need to see a national review of Down syndrome regression and its clinical management so we can ensure people with Down syndrome who might be experiencing a regression get the support they need. A taskforce comprising a number of sectors like the HSE and Down Syndrome Ireland could work together to see how this regression can be recognised and treated,” he added.
“This is not simply a healthcare issue—it is a matter of human rights. Every person with Down syndrome deserves access to lifelong care, dignity, and inclusion.
“The Department of Health, the HSE, and all relevant agencies must respond to the findings with urgency. I will continue to engage with my colleagues, Minister Jennifer Carroll MacNeill and Minister Hildegarde Naughton, on how we can get a review in place to further understand the impacts of regression.
“We also need to see greater assistance for ageing carers and future care planning.
He thanked Down Syndrome Ireland for continuing to amplify the voices and lived experiences of individuals with Down syndrome and their families. Their work is not only vital—it is life-changing.
“We cannot leave families to carry this burden alone. We must act now to build a fairer, more responsive, and more compassionate system—one that listens, learns, and delivers. I will continue to stand with families in that fight,” he concluded.
