Down Syndrome Ireland’s Submission to the Review of the Disability Act 2005

Down Syndrome Ireland welcomes the review of the Disability Act 2005 and the opportunity to strengthen Ireland’s legislative framework for people with disabilities. More than twenty years after the Act was introduced, there remains a significant gap between the identification of disability-related need and the delivery of the services, supports and opportunities required to meet that need.

For people with Down syndrome and their families, this gap is experienced throughout life: in waiting for therapies and supports in childhood; navigating education and transition; accessing employment and adult services; planning for greater independence; securing appropriate housing and community supports; and responding to changing needs later in life. The review must therefore be about more than improving existing processes. It should strengthen the connection between rights, responsibility and delivery.

In our submission, we have asked the Government to:

• Connect identified need with timely service delivery, by creating an enforceable connection between assessed need and an appropriate service response, with statutory timelines and effective remedies where services are not delivered.
• Establish a whole-of-life approach, with coordinated support plans, supported decision-making and continuity across education, employment, housing, independent living and later life. Review financial provisions so that families can plan for future disability-related needs without disproportionate loss of essential supports.
• Create stronger national standards, reducing geographical inequality and ensuring that access to disability supports does not depend on postcode, with transport availability, reliability and accessibility included in planning and delivery.
• Establish a reliable, privacy-respecting national disability data framework, allowing Government to understand population need, service access, waiting lists, regional inequalities and future demand without creating an unnecessary or intrusive condition-specific register.
• Create statutory accessibility and Universal Design obligations, covering physical, communication, cognitive and digital accessibility, including publicly funded and contracted provision, together with meaningful participation and co production.
• Strengthen accountability and enforcement through a Disability Ombudsman or equivalent statutory function, with investigation, binding compliance notices, corrective action, accessible redress and clearly coordinated complaint routes.
• Match rights with sustainable funding and measurable implementation, including workforce and infrastructure planning, employment quality and progression, published timelines, transparent resourcing and public reporting. Review protections against discrimination involving genetic information and the related barriers to insurance, housing and employment.