The Assisted Decision-Making (Capacity) Bill is a very significant step on the road to our country ratifying the UN Convention on the Rights of Persons with Disabilities. For far too long this area of law has been neglected to the extent that the current provisions are helplessly and hopelessly outdated and do not reflect the standards that we should exceed in a modern republic.
Very often the debate on issues concerning persons with disabilities centres on resources and available infrastructure for day-to-day support and care. Equally important, however, is the legislative framework for ensuring that the rights of every person with a disability are realised and vindicated. There will always be additional challenges to achieving this crucial objective. The challenges must be met and the State must – not ought to or should – have in place the appropriate laws.
The Assisted Decision-Making (Capacity) Bill is the first time ever that Ireland will have a system of supported decision-making. It will provide the opportunity for individuals to make legally-binding agreements with others to assist and support them in making their own decisions. No longer will it be permissible to make decisions for a person without regard to that person’s thoughts, wishes and opinions, no matter how much the decision-maker is acting out of kindness or out of what they perceive to be the best interests of the person. No longer will we rely on terminology and definitions from an Act passed in 1871. No longer will we be dependent on the cumbersome, complicated and, to be honest, often ineffective ward of court system. No longer will we be operating a system for which there is no right of review, and no longer will we be reliant on a system in which consent to make medical treatment decisions is given solely on an ad hoc basis.
One issue that the Bill addresses is the increasing incidence of dementia. As our population lives longer, dementia is a pressing issue that is affecting more and more of society. I recall watching a television documentary on RTÉ on failings within the health care system – I think it was “Prime Time”. The undercover camera captured the ill-treatment of a vulnerable and elderly lady which I am sure was an isolated case. I recall the phrase the elderly woman used – “Let me alone, let me alone,” she pleaded. It was an old-fashioned phrase but one which left the viewer in no doubt as to the woman’s distress and of the complete disregard that was being shown for her feelings, wishes and preferences.
This Bill alone will not guard against such abuse but it is a very necessary component which will help establish a society in which vulnerable people are protected. Several organisations, including the Centre for Disability Law and Policy at National University of Ireland, NUI, Galway, Inclusion Ireland and the Disability Federation of Ireland, have highlighted a number of issues regarding the legislation which I think merit attention and consideration and which I hope will be explored further and addressed on Committee Stage.
I agree with the assertions made by the organisations that the positive measures in this Bill, which support people, must be open to all, accessible, inexpensive, easy to use and flexible. It is vital that the procedures and mechanisms being put in place in this Bill emphasise and prioritise the will and preferences of the person involved. While concerns have been raised relating to the use of informal decision-making mechanisms, a balance must be struck in establishing the most effective supports while ensuring such supports are accessible and uncomplicated.
Independent advocacy is important to everyone in society. At times having impartial, friendly and accurate information and support makes a world of difference to a person in a stressful or complicated situation. When a situation concerns a vulnerable person, it is even more important to have an independent advocate. I am encouraged to see that the Bill has been designed with a flexible system that reflects the different levels of support which people in different circumstances will require.
The decision-making option will help people who need a small amount of help in interacting with systems or in obtaining information. The co-decision making option, which requires court approval, will enable a person to appoint a trusted relative or friend to help make decisions on a joint basis. That the co-decision option contains a built-in review process is very positive and will help ensure that the order remains relevant and is the best option for the person with a disability. The decision-making representative option is a step further and is applicable to cases where a person with a disability is unable to be a co-decision maker. A crucial feature of this option is the role played by the public guardian on whose nomination a court appoints the representative. It is a clear, verifiable and independent process with the interests of the person with a disability at the very centre.
Above all else, section 8 of the Bill encapsulates what we are trying to achieve. It makes clear that capacity is always presumed until the contrary can be shown. It ensures that a person will only be considered to be unable to make a decision after all steps to help the person have been taken and that a person will not be considered to be unable to make a decision merely on the basis that the decision is considered unwise and that no interventions shall be made unless it is absolutely necessary to do so. I commend the Minister and his staff on the preparation of this Bill and welcome its progress through the House.