Statement of Support from Down Syndrome Ireland
Down Syndrome Ireland stands in unwavering support of the families and advocates who are courageously raising their voices to highlight the severe deficiencies in Children’s Disability Services in Ireland. We are deeply concerned about the troubling issues brought to light by Rebecca O’Riordan of FUSS Ireland and Aisling Byrne of DCA Warriors, and we echo their call for immediate and substantial reform.
The recent resignations of Rebecca O’Riordan and Aisling Byrne underscore the profound challenges and systemic failures that families of children with disabilities face daily. The disturbing accounts of families being marginalised, threatened, and retaliated against for advocating for their children are unacceptable and deeply troubling. Such actions not only violate the basic rights of these families but also undermines the trust and integrity of our disability services.
At Down Syndrome Ireland, we firmly believe that all children, regardless of their abilities, deserve access to high-quality, appropriate, and timely services. The current system’s reliance on inadequately trained personnel to carry out educational assessments, despite clear guidelines, is a disservice to our children and their families. The reported instances of file tampering, threats of service withdrawal, and unwarranted referrals to Tusla are alarming and highlight the urgent need for a robust, independent complaints mechanism.
Furthermore, the lack of regulation for children’s disability services, as highlighted, points to a significant oversight in ensuring that both families and staff are supported and protected. The call for regulation is not merely about compliance but about creating an environment where minimum standards are met, safe working conditions are ensured, and families can trust that their children are receiving the best possible care.
The model of “progressing disabilities” has not been supported by comparative evidence, and its implementation has led to a dismantling of specialist services that are critical for addressing the unique needs of children with disabilities. This model has placed undue strain on an already under-resourced workforce, expecting them to navigate complex cases without sufficient support or infrastructure.
Down Syndrome Ireland joins the call for a comprehensive review and overhaul of the current system. We support the establishment of clear regulations that involve all stakeholders, including families, professionals, and independent bodies, to create policies informed by evidence and lived experiences. It is crucial that the voices of those directly impacted by these services are not only heard but are central to the decision-making process.
We urge the government and relevant authorities to prioritise the needs of children with disabilities and their families, ensuring that they receive the respect, dignity, and quality of care they deserve.
It is time to move beyond rhetoric and take decisive action to reform Children’s Disability Services in Ireland. Our children deserve better, and it is our collective responsibility to ensure that they receive the support they need to thrive.
We remain committed to advocating for the rights and well-being of all individuals with Down syndrome and their families, and we stand in solidarity with those who are fighting for a fairer, more equitable system for all children with disabilities.
Down Syndrome Ireland
