Richard Boyd Barrett (Dún Laoghaire, People Before Profit Alliance) | Oireachtas source

I welcome the introduction of this Bill. I commend the Minister of State and the departmental officials on producing this substantial legislation in an area that is complex, sensitive and vital for a huge range of people who will be affected by it, be they those who were born with incapacities or disabilities, those who developed them, or elderly people. Huge numbers of elderly people develop dementia and of the half a million elderly people in the State, 44,000 of them, which is a substantial proportion, have dementia.

We are speaking here about huge numbers of people who are affected, including the families and loved ones. I do not pretend to be an expert on this. In so far as I have developed any awareness or understanding of it, it is because I have been pressed to do so by constituents who are affected. On foot of those representations I have asked about the Bill on the Order of Business. On a number of occasions I asked on behalf of one family. I will not mention it by surname but I commend it for its interest. The family member concerned is April, who is a ward of court and is a constituent of mine. Her guardians, Jim and Noelle, are very concerned that this legislation will be passed.

I would also like to pay great tribute to the range or organisations who were mentioned earlier which have scrutinised the Bill, made submissions and are still seeking further amendments to make it everything that it needs to be. I believe we are all agreed that it is long overdue, that laws that even refer to concepts such as lunacy are outdated and unacceptable and that we should not in any way be governed by such laws that make reference to such categories. It is, therefore, welcome that we finally have a chance to discuss these issues and try to legislation in a humane way, in a way that, as has been said by other speakers, starts from the simple premise that because one has a disability or incapacity that does not mean one should not enjoy any less the rights available to any other citizen. It is about ensuring and underpinning legally the idea of equality for all citizens, be they elderly, incapacitated or disabled in one way or another.

I fully accept the bona fides and commitment of the Government in terms of the stated intention of the Bill to try and improve the situation in that direction. The stated intention of the Bill that people must have the right to make decisions themselves in so far as that is possible must be vindicated. In this regard any assistance, support and legal underpinning must be given to them so that they can make their own decisions about their lives, their treatment, the care they may receive, where they live and their financial affairs. In April's case as a ward of court, a big issue was her right to control her own financial affairs.

This is not the place to discuss issues we have debated many times in this forum, such as cuts to services and so on. However, in order to give full effect to legislation that is attempting to move in a positive direction, it is not enough to enact legislative provisions. To do many of the things the Bill seeks resources are required. An example in this regard is one that received considerable public attention a couple of years ago. In one institution people with mental illnesses were essentially, because of cutbacks, locked up in an unsuitable and inappropriate ward over Christmas because of staff shortages. We should seek to have the best legislation in place and while I fully accept the intention of the Bill to provide the best legal situation in terms of equality and rights, without the resources to secure full vindication serious problems can arise. The rights of people can conflict with the ability of the State to deliver and resource those rights.

Another example along these lines concerns a residential home in Monkstown in my own area which caters for the severely physically disabled. I think of two categories of people in there at the moment. One woman campaigned for a long time that she should not have to be in this residential environment and wanted to live in her own home. She had to fight for the right to do that against those who said she was better off in residential care where she would be looked after. One of the submissions concerning this legislation referred to a similar case in England where the courts decided that even if it was the case that there might be certain dangers associated with somebody living alone, that person had the right to make such a decision about their own life and to have that level of autonomy and personal dignity, including if needs be how that person should die. That is a right and I am glad to say that the woman to whom I referred earlier eventually won her battle to live where she wished. She had to fight a battle against those who thought, and perhaps with good intention believed, it was not in her in best interest to do so.

However, in that same home a situation has arisen, because of threatened cutbacks and closures, where many other residents do not want to leave. Just a few years on the situation has now been reversed on the back of cuts, austerity and so on. People are now being told they will have to be cared for elsewhere, ideally in their own home or with family members. Many people there do not want to leave as they have been happy to be there.

These are examples of how in order to underpin the legal rights we are endeavouring to enshrine in this legislation, the issue of resources is very important. Many of the issues under discussion are sensitive and complex. As one who is inexpert in this area I must emphasise it is crucial we listen to the people who know. In so far as I have learnt anything in this area it is from those who know, including those directly affected, that is, those for whom we are legislating as well as those organisations which help them and have developed expertise in these areas.

Legislation such as this, which deals with complex and sensitive issues, cannot be set in stone. It must be a work in progress and one that is subject to review. There must be an openness on the part of the Government, as the Bill makes its way through the Oireachtas and subsequently, to listen and take on board the views of those who know at first hand what is needed, what are the deficiencies and what assistance and supports people need in order to have the right which the legislation seeks to enshrine. It is the right to make decisions about their own lives.

As other speakers have said, there are a number of key points in that regard that those groups of organisations have set out as priorities on which they still hope there can be further amendments and refinements to the legislation. I hope the Government is open to that discussion and to trying to refine the Bill as it passes each Stage in the Houses. We must first have the strongest presumption of capacity, the right to legal capacity and safeguards about choosing co-decision makers who will assist people who have difficulty in making decisions to make sure that people have the fullest autonomy to make the decision about who they want to assist them. The provisions and rights enshrined in the Bill should extend to everybody who has an incapacity or a disability, particularly those in prescribed mental health institutions.

The other issue that was mentioned is the advanced care directives. Where people still have the capacity, which they may lose subsequently, they should have the right, in as far as is possible, to make decisions in advance about what they do and do not want in terms of treatment, how they will end their lives and various other decisions. That is complicated because as some of the submissions indicated, it is sometimes easier to legislate for what people do not want than to legislate for what people might want in future situations. In complex areas such as that it is a question of going through this legislation line by line and trying to get the best formulations that are specific enough but flexible enough to accommodate those grey areas and complexities in the best possible way.

The issue of restraint is critically important. One of the popular dramatisations of neglect and abuse in these areas was "One Flew Over the Cuckoo's Nest", which is a brilliant film that dramatises those issues very well. It showed how people were subject to abuse in particular situations. The film was set in the United States and showed how people were force-fed drugs they probably did not need, subjected to forced electrotherapy and so on. It was a shocking dramatisation of the potential for abuse where people are categorised as being mentally or physically incapable. I am not saying that persists here but there is always that potential where there are prejudices and stigmas. Where people do not fully have the capacity to articulate their own desires, views and needs there is always the potential for them to be mistreated, abused, ignored and dismissed, and restraint being the most serious example of that. Another brilliant book is Sylvia Plath's The Bell Jar, which is a similar instance about women in the United States treated in that way and categorised as mentally unwell, incapable of making their own decisions and therefore becoming subjects of abuse and victimisation.

In terms of restraint, the various organisations have mentioned not just physical restraint but also chemical restraint and the misuse of medicines to restrain people unnecessarily. This is not just a point for people with incapacities. There is a more general issue in that it can often be cheaper, easier and, for some pharmaceutical companies, more profitable to give people drugs than to listen to them. I attended a very interesting meeting recently of psychiatrists and people involved in the critical psychiatry movement who spoke about that. There is a real issue that we need to examine in that regard. There is a more general issue in the area of mental health but when we are talking about people in mental health institutions this is an area about which we have to be careful. We have to try to ensure that people are not being given, for the wrong reasons, drugs to restrain them because it is easier to do it that way to manage them. We have to avoid doing that and listen as much as possible to the people themselves, allow them identify the help they need, and not have other people deciding what is best for them, often on the basis of what is easier to manage certain situations.

Another area that has been highlighted is the right of people to appeal decisions where they believe their rights have not been fully vindicated, they have not been listened to or decisions are being made on their behalf that they do not believe are in their best interests through an appeal mechanism. I welcome in that regard the proposal on the office of the public guardian. However, I echo the point made that when we are talking about co-decision makers the group of people who should not be allowed on that list is those who work in institutions because there is a potential conflict of interest in that regard. On the other side of that equation the idea that we have an independent body, an office of the public guardian, that will monitor and make sure that the rights and best interests, as the people themselves see it, are upheld and vindicated is the right approach.

I welcome the legislation and the debate. I congratulate the officials on what is a detailed and complex Bill. I am sure a good deal of work went into it but I hope that as it passes each Stage in the Dáil, there will be an understanding and a recognition that there is probably still work to be done on it in terms of refinements and that all the stakeholders and the people who have knowledge and expertise in this area will have the opportunity to fine-tune the Bill to make it the best possible legislation.

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