“I know now that I have the right to make my own decisions. I can ask for support and not be afraid that my independence will be taken from me.”
THESE ARE THE words of Margaret Turley, who has an intellectual disability, speaking recently at the launch of the Decision Support Service (DSS), the public service established under the Assisted Decision-Making (Capacity) Act 2015.
Available data indicates that over 200,000 adults in Ireland have an intellectual disability, acquired brain injury, mental illness or dementia. Margaret is one of nine ‘champions’, all experts by experience, who feature in the Decision Support Service’s ‘My Decisions, My Rights’ public information campaign which has been underway since the start of the summer.
All nine champions – activists, artists and entrepreneurs among them – share their stories of confronting challenges in order to make the decisions that matter to them. They speak of the importance of seizing opportunities, being treated as equals and doing the things they love.
The 2015 Act is long-awaited, rights-based legislation and it finally commenced as operational law on 26 April.
The Act repeals the adult wards of courts system under the Lunacy Regulation (Ireland) Act of 1871 and provides for the discharge of wards within three years. In her story, Lydia Fisher, another DSS champion, speaks enthusiastically about how she is looking forward to exiting the wardship system and becoming self-reliant.
Under wardship, a person is declared to be ‘of unsound mind’ and incapable of managing their affairs, something that has frequently been criticised as a blunt instrument. Under the 2015 Act, when capacity is assessed, it is done relative to the decision in question. There is no medical or diagnostic component.
Capacity is a matter of a person’s ability to understand at the time of deciding, the nature and consequences of a decision in the context of the options available.
The 2015 Act introduces a tiered framework of measured supports underpinned by guiding principles that emphasise personal autonomy, minimal restriction of rights and freedoms, and respect for a person’s will and preferences. The principles in the Act are informed by the United Nations Convention on the Rights of Persons with Disabilities, ratified by Ireland in 2018. An adult is presumed to have capacity and is entitled to be supported as far as possible to make their own decisions in relation to money and property and personal welfare, including decisions about accommodation and healthcare.
Paul Alford of Inclusion Ireland lived for 32 years in a residential service. When he decided to spend his own money on a guided trip to Beijing, he was told by the management of the service, apparently applying a presumption of incapacity, that he was not allowed to go. In his story, Paul describes with satisfaction how he booked the trip with his credit card and went anyway.
There is no suggestion that all or any of the 200,000 people in this situation will need to enter into a formal support arrangement under the 2015 Act. That will depend on their circumstances and the decisions that they need to make. The new support framework is not imposed on individuals or their families and should be approached as a problem-solving tool, to be availed of as required.
It would also be wrong to think of the Act and the DSS as being relevant only to persons who presently have a disability. Any of us could encounter future challenges with decision-making due to illness or trauma and it is often wrongly assumed that our ‘next of kin’ will have the authority to make decisions on our behalf.
In her story, Helen Rochford-Brennan talks about coming to terms with early onset Alzheimer’s and the importance of being able to plan ahead to ensure that her wishes are always known and respected, while she gets on with ‘living joyfully’.
The parents of Pádraig Schaler, who suffered a brain injury in a road traffic accident while still a student, speak of their determination that Padraig’s authentic voice should continue to be heard with the support of those who know him best. The Act provides for advance planning by way of a revised enduring power of attorney and advance healthcare directive, making this an Act for everyone.
In his story, Fionn Angus says that he has followed his dreams and made his own choices and that his core message is that everyone should love life and be optimistic. Just as importantly for her, Margaret Turley says that since being supported to take up permanent employment, she ‘can give out about paying taxes, like everybody else’.
The DSS has statutory functions to promote awareness and confidence about the new support framework, to provide information and guidance and to register and supervise decision support arrangements. The wide-ranging engagement has been ongoing for some time as this is an Act that impacts many sectors. Fundamentally, however, this is not an Act about professionals or services, it is an Act about people.
Áine Flynn is the Director of the Decision Support Service. For more information, visit www.decisionsupportservice.ie
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