Improve the legal rights of people with Down syndrome across the lifespan

The EPSEN Act 2004 was a ground-breaking piece of legislation that sought to put the provision of education for people with special educational needs on a new footing.

It required considerable changes to be made to the existing educational regime, and the legislature has recognised that time will be needed to meet the requirements necessary for full implementation of the Act. For this reason, provision was made for the phased implementation of the Act over a five-year period, beginning in October 2005. More than 10 years later, the EPSEN Act has still not been fully enacted.

What does this mean?

When parents are looking for pre-school, primary or secondary school, the EPSEN Act should give students with Down syndrome the legal right to a well-supported and inclusive education model so children can attend their local primary school and be supported to access the curriculum. Full enactment of the Act would give parents the right to demand appropriate support and individual education planning for their child.

The Assisted Decision-Making (Capacity) Act 2015 would mean that adults with disabilities, upon completion of their education, would have the right to make their own life choices and to be supported to live as they choose rather than the choice being taken away from them.

Relevant parts of the Act, which sets out guiding principles that are intended to safeguard the autonomy and dignity of the person when decision-making capacity is questioned, have not been commenced.

The ground-breaking and long-overdue legislation is a comprehensive reform of the law on legal capacity and replaces the Wards of Court system.

The pivotal legislation replaces the archaic Lunacy Regulation (Ireland) Act 1871 and will mean that all adults are presumed to have capacity to make decisions unless the contrary is shown.

For the first time, Irish law would provide for supported decision-making through a decision-making assistant or a co-decision-maker appointed by the person or a decision-making representative who will be appointed by the Decision Support Service

These reforms address the right to equality before the law, otherwise known as legal capacity, which is the right to have decisions recognised by the law. Recognition of legal capacity is central to ensuring that many other human rights are upheld.  

This legislation is relevant to all adults, both young and old who have been unfairly discriminated against, not to mention their families who have endured the stress and heartache of navigating and bearing the brunt of a pivotal law which snatched their decision-making ability and control from them.

The Assisted Decision-Making (Capacity) Act 2015 sets out guiding principles that are intended to safeguard the autonomy and dignity of the person whose decision-making capacity is in question.

The guiding principles of the legislation state that:

-There is a presumption of decision-making capacity unless the contrary is shown.

-No intervention will take place unless it is necessary.

-Any act done or decision made under the Act must be done or made in a way which is least restrictive of a person’s rights and freedoms.

-Any act done or decision made under the Act in support or on behalf of a person must give effect to the person’s will and preferences.