Mental Capacity Legislation: Discussion

Wednesday, 22 February 2012

Joint Committee on Justice, Defence and Equality Debate

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Chairman: Information on David Stanton  Zoom on David Stanton  I ask members to switch off mobile phones completely. Please do not leave them on silent because they interfere with the recording system.

The purpose of the meeting is to have discussions with some of those who made written submissions on the proposed mental capacity legislation. Five organisations will come before the committee. First we will hear from Inclusion Ireland and the Psychological Society of Ireland, followed by the Alzheimer Society of Ireland and the National Institute for Intellectual Disability, and finally the Mental Health Commission.

On behalf of the committee I welcome from Inclusion Ireland Ms Frieda Finlay, chairperson, and Ms Deirdre Carroll, CEO. From the Psychological Society of Ireland I welcome Dr. Brian McGuire, chairman of the clinical division, and Dr. Simone Carton, principal clinical neuropsychologist. I thank them for their attendance today and for giving of their valuable time to help us in the work we are doing to optimise this legislation. I also thank them for the submissions already received by the committee. Each organisation will make brief opening remarks followed by a question and answer session. I ask delegates to keep their remarks to five minutes so we have time for questions and the interaction which is very valuable to us.

I draw the attention of the witnesses to the situation with regard to privilege. Please note you are protected by absolute privilege in respect of the evidence you are to give this committee. If you are directed by the committee to cease giving evidence on a particular matter and you continue to so do, you are entitled thereafter only to a qualified privilege in respect of your evidence. You are directed that only evidence connected with the subject matter of these proceedings is to be given and you are asked to respect the parliamentary practice to the effect that, where possible, you should not criticise or make charges against any persons or entity by name or in such a way as to make him, her or it identifiable. Members should be aware that under the salient rulings of the Chair they should not comment on, criticise or make charges against a person outside the House or an official by name or in such a way as to make him or her identifiable.

I call on Inclusion Ireland to make its opening statement.

Ms Deirdre Carroll:  I thank the committee for its invitation. I am CEO of Inclusion Ireland, which is the national association for people with intellectual disabilities. The organisation’s chairperson, Ms Frieda Finlay, will speak about personal experience of the impact of the current system.

Inclusion Ireland has been campaigning for modern capacity legislation for ten years. In 2003, we published a booklet, “Who Decides & How? People with Intellectual Disabilities - Legal Capacity & Decision Making”. This booklet was published as a response to the people coming to us with the difficulties they were experiencing in the area of decision making. We regularly produce policy or information publications on topics such as wills, education and employment and all of these books are reviewed and updated each year. However, we have never had to review or update this publication because in the past decade the law has not changed. In fact, the law has not changed in 141 years and counting.

Ireland was one of the first countries to sign the UN Convention on the Rights of Persons with Disabilities on 30 March 2007 and we are proud of this. However, we should not be proud of the five years’ delay experienced since. Out of 153 signatories there are 109 ratifications. We were among the first countries to sign the convention, and we do not wish to be the last to ratify. We are told the current legislative situation means we cannot ratify the convention, in particular given Article 12.2 which states, “States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.”. The Lunacy (Regulation) Act 1871 does not satisfy this obligation.

Inclusion Ireland is not campaigning for a change in the law for academic purposes. Inclusion Ireland is campaigning for change because of the real effect the current legal situation has on the real lives of people. Without recognition of people’s legal capacity we do not recognise their right to marry, have a family, manage their own money, make medical decisions, have a sexual relationship, decide where to live, enter into contracts or vote. We are denying people the right to many of the markers of citizenship.

When people in Ireland reach 18 years they are considered adults before the eyes of the law. Their right to make decisions for themselves is absolute with the exception of situations involving the power of attorney or being made a ward of court. Generally people are made wards of court because of an injection of money into their lives, perhaps through an inheritance or the awarding of damages following an accident. The application for wardship almost inevitably follows and unless the person is supported to resist this process they are typically made a ward of court. When a person is made a ward of court they do not just have their money regulated, they have their lives regulated. In 2010 there were more than 3,000 wards of court in the country. We estimate approximately 10% of these have intellectual disabilities.

We have been told by the father of a man who was made a ward of court that he wishes his son had never received the damages he did, as although the money helped with the cost of medical care, his son’s quality of life had deteriorated though his lack of control and choice. Other people who Inclusion Ireland have supported in the area of wardship have had battles to decide where they live, which is a basic human right. Permission has been needed when booking holidays, buying new clothes and deciding to give up medication.

The corollary is another important aspect and will be referred to by the Alzheimer Society of Ireland. Some 4,000 people with intellectual disabilities are living as voluntary patients in closed residential centres. We are told that they have the capacity to decide to be there and to consent to care, yet they cannot walk out the front door. As with the Eagles song “Hotel California”, which some of the members who are old enough might remember, one can check out at any time but cannot leave. The situation is the same for people in nursing homes.

If one is aged 18 years or over and is not a ward of court, one is an adult in the eyes of the law. This is the majority of people. On the face of it, this is equality of treatment. However, to treat everyone equally is to discriminate. There is often a perception among parents, siblings, carers, service providers and others that, if a person has an intellectual disability, the right to make decisions rests with the next of kin and not the person. This may be born out of being frequently told by medical professionals that the person has the mental age of a child. Parents are asked to sign medical consent forms for their adult children and to consent to trips and moving home. Parents or other family members have no authority to consent for an adult with a disability.

Inclusion Ireland is often asked who decides if a decision cannot be made by parents or others. Legislation in this area needs to make clear that the decision making capacity rests with the individual. Clear guidelines are required so that the matter of informal decision making does not remain a lacuna. The idea of a decision being made in a person’s best interests is too subjective and should not be the marker. Instead, the person’s wishes or desires should guide the process, even if another person would not make the same decision. The medical profession has developed ethical guidelines to give some guidance to medical practitioners who may be committing a battery if they treat a patient who is incapable of giving consent. We have received calls from bank managers who have issued joint bank accounts and are now concerned that financial abuse is taking place. We have received calls from solicitors regarding the best way to construct the wills of parents of people with disabilities or, increasingly, from people with disabilities themselves.

Article 12.3 of the UN convention reads: “States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.” People with disabilities should have the support they need to make decisions for themselves. Where a person lacks the capacity to make certain decisions, it is imperative that supports be put in place to develop the person’s decision making ability and to facilitate decision making in the short term. We should not legislate for the stripping away of decisions from the decision maker. Rather, we should acknowledge the rights of people with disabilities to have their decisions recognised, supported and given legal effect. Providing such supports would move away from the concept of guardianship and substitute decision making.

Inclusion Ireland has long advocated this system. We were among the first to invite to Ireland Professor Michael Bach of the Canadian Association for Community Living, CACL. Canada has an excellent system of legal representation. I urge the committee to consider its example when dealing with this issue. I have examples of the legal representation agreements that operate in Canada in respect of more than 4,000 people with intellectual disabilities and older people. These agreements do not bring people within any legal process and work well where low level, ordinary decision making is concerned.

Personal guardians or substitute decision makers should be a last resort. They should be for a particular purpose, time limited and give legal effect to the choice or wishes of the person with a disability. The idea of best interests should be ignored as a paternalistic concept best suited to 19th century legislators. Our mental health legislation contains the concept of best interests, which the Supreme Court has interpreted in a paternalistic way. There should be no room for it in any new mental capacity Bill.

When the mental capacity guidelines were introduced in 2008, we made a submission because we had many concerns. While it is of paramount importance that the Lunacy Act be removed from the Statute Book, a “ward of court mark II” should not be created in the process. It is essential that the recommendation of the Law Reform Commission, LRC, on replacing the court-based system with a tribunal system be implemented. We would agree with supported decision making with a limited application of personal guardians as a last resort.

Before I hand over to our chairperson, Ms Finlay, I will make another remark. The removal of the Lunacy Regulation (Ireland) Act 1871 from the Statute Book and the ratification of the UN convention comprise an urgent next step forward. It is imperative that wards of court be taken out of the legal limbo in which they cannot conduct lives of their choosing. We ask the Government to fulfil the promises made by it and the previous Government to introduce a legal capacity Bill without delay. I will now ask Ms Finlay to speak of her personal experience if we have the time.

Chairman: Information on David Stanton  Zoom on David Stanton  We are under some time pressure. Ms Finlay should address the Bill.

Ms Frieda Finlay:  I will explain the Bill’s effect. I thank members of the committee and am delighted to have been given this opportunity. In some cases, our people are considered second class citizens. The law needs to be changed if they are to have their rightful place in society as first class citizens.

As the parent of a 38 year old woman with an intellectual disability and who is a citizen by birth of an independent sovereign republic, I burn with anger every day at the thought that her capacity to make basic decisions about her life is governed by an Act passed in the British Parliament 140 years ago. That Act was passed by the Government of William Gladstone and was signed into law by Queen Victoria. As the committee knows, it was called the Lunacy Regulation (Ireland) Act 1871. It defines my daughter in legal terms as an “idiot, lunatic or of unsound mind”. One of the definitions in the Act describes me as the next of kin of a lunatic. Imagine how insulting it is for families and our children to be described as lunatics and to still be subjected to antiquated legislation of this type. In certain circumstances, it removes the rights of young persons aged over 18 years as well as any protection their parents can give them.

I cannot for the life of me understand why the law has not been changed before now. The only logical conclusion I can come to is that people who design laws and structures that take no account of the needs, rights and feelings of people with intellectual disabilities do it for a reason. The reason may be that people with intellectual disabilities are often viewed by the system as patients, inmates, clients, residents and service users. Only rarely are they viewed as people. They are real people. My daughter is a real person. She is an adult woman with all of the same dreams and desires as her three sisters or any other woman of her age. She may need more supports than her sisters to live independently and more supports and information to make decisions, but with that support she could make serious decisions about her life, where she wanted to live and with whom.

Due to the law, no one can help my daughter to make a major decision in her life. She cannot make it either, be it on a medical procedure, a relationship or finances. The only way major decisions can be made is by making my daughter a ward of court. Also due to the Act, we parents must exclude children with intellectual disabilities from our wills. Any property or money that they might inherit will result in them becoming wards of court. Peter McKenna’s family members pleaded for him not to be sent to Leas Cross Nursing Home, but they were powerless to do anything about it because he was a ward of court. He died ten days after arriving.

The stupid thing is that, because my daughter is considered by the law incapable of making decisions, I frequently receive letters from her service asking me for permission for her to have a drink at the Christmas party or when travelling on some outing. The latter is for “insurance purposes”. This is ridiculous, as no signature is valid - not mine, not the service’s and, most of all, not hers.

The Lunacy Regulation (Ireland) Act 1871 has a significant impact for people with intellectual disabilities in terms of section 5 of the Criminal Law (Sexual Offences) Act 1993. Section 5 is supposed to protect people with intellectual disabilities but because of the considered lack of capacity to consent this part of the Act actually denies people with intellectual disabilities their human rights. Is it possible that it simply never occurred to the lawmakers that people with an intellectual disability would, or could, have the same feelings as the rest of us? For some reason, they seem to have made an equation between intellectual capacity and emotional development. Is it not the case that the right to love and be loved is a basic human right? Why then is there a law against this for one group of people? How can this possibly be justified in any way, except the most callous and brutal terms? Politicians have it in their power to change the law, thus making it a law that gives people the support necessary to help them make, to the best of their ability, decisions about their lives and, more important, a law that gives justice and respect to people with intellectual disabilities.

Chairman: Information on David Stanton  Zoom on David Stanton  We have received more than 70 submissions on this legislation. This type of engagement on legislation is new. It allows for engagement with interested individuals and groups prior to publication of the legislation, the proceedings of which feed into the legislation. This has already been done in respect of two or three other pieces of legislation. I now invite Dr. Carton to make her presentation.

Dr. Simone Carton:  I thank the joint committee for the invitation to appear before it, which presents us with an opportunity to influence legislation and to strive towards best clinical practice. I am a clinical neuropsychologist and wrote this submission when chairman of the division of clinical neuropsychology. Dr. Brian McGuire works in the area of clinical psychology and is director of the training programme in University College Galway where he trains clinical psychologists, about which he will speak to the joint committee a little later.

The main thrust of our submission is to draw the joint committee’s attention to the fact that within clinical psychology we are in a pivotal position owing to our expertise, training and clinical practise to contribute to assessing mental capacity. There have been tremendous strides during the past ten to 20 years within the realm of psychology and neuroscience, which has assisted in the development of our skills. During that timeframe we developed an expertise which is now part of our practice.

What is interesting in clinical practice is that we are frequently asked to give opinions about patients’ capacity to make decisions in relation to their clinical treatment or to look after their financial affairs. These referrals usually come from our colleagues in neurology, psychiatry, rehabilitation medicine and so on. Currently this is the practice, which acknowledges the particular expertise we have and the strides made in terms of clinical and empirical clarity about what is important, given the understanding of the brain has improved so much.

In assessing capacity, we are asking people about their understanding of decisions. For instance, if they make a particular decision, what is their understanding of the implications in that regard, what is their ability to weigh up that information in terms of the pros and cons and can they communicate that decision in a meaningful way. The skills required to engage in that decision making process are attention, memory, an ability to communicate, reflect and consider the various variables, and to make a decision that is best for them and their care, whatever the context. We would argue that those are the skills we assess in our clinical practice, hence the importance of our being part of the assessment process and having the special status in terms of providing expert opinion.

As in the case of Inclusion Ireland, the Psychological Society of Ireland is often asked to give opinions about capacity but it should always be in response to a specific question. I had to assess a gentleman who did not have the capacity to look after many aspects of his financial affairs but who, as a trained financial expert prior to his accident, had a reservoir of knowledge. For him to be excluded from his decision making around his finances was psychologically devastating. We were able to put in place a particular arrangement in that case. However, ever since, in terms of providing opinion to the courts, this has not been accepted. One either has or does not have capacity. It is being presented as a black and white phenomena but it is not. It is many shades of grey.

I will now hand over to Dr. McGuire who is going to speak about training at university level for clinical psychologists.

Dr. Brian McGuire:  Clinical psychologists are trained in the discipline of human behaviour. They do a general degree in psychology, usually of three to four years duration, followed by at least one year in an internship before doing a three-year doctoral programme in clinical psychology. During that clinical psychology training we teach people about adult mental health, adult mental health difficulties, child psychology, family clinical psychology, the conditions that occur as people age, the conditions associated with neurological impairment and degenerative disorders. The training includes academic course work in the university and clinical placements during the three years in clinical settings with people who have impaired cognitive ability. One of the defining functions and roles of a clinical psychologist, which differentiates them from other professions, including our colleagues in medicine, is their training in psychometrics, the assessment of psychometric function such as memory, the ability to make decisions, to understand information, executive processing, the ability to weigh up information and consider alternatives. Again, we contend that clinical psychologists should play a key role in the enactment and delivery of the new legislation.

Chairman: Information on David Stanton  Zoom on David Stanton  We operate a lead questioner system, whereby one member will engage with each group following which other members will come in.

Deputy Finian McGrath: Information on Finian McGrath  Zoom on Finian McGrath  I welcome the delegations, in particular Inclusion Ireland, and commend and thank them for the work they have done over the past couple of years in terms of pushing the disability issue and the rights of people with disabilities.

My first question is to Ms Carroll who stated there are 4,000 people with intellectual disabilities in residential centres who have no rights and cannot leave those centres. How would Ms Carroll propose to deal with protection of their rights by way of this legislation?

Ms Deirdre Carroll:  Most of the people in residential care would, if in a psychiatric hospital as an involuntary patient, have the benefit of a review tribunal to review their detention. The people about whom I spoke earlier are effectively detained and cannot leave. We must assume that most people have capacity. Most people know what they want to do in life. In my opinion, there are very few people on behalf of whom one cannot get agreement in terms of action. We should have in place a system which allows us to determine whether these people are happy to consent to their treatment and to remain where they are and, if not, to put in place alternative arrangements for them. It must be remembered that these people are living in places that are unregulated and not inspected, thus there is no mental health protection for people who are psychiatrically ill or no inspections by HIQA of their living standards, conditions and treatment. There are approximately 4,000 such people in this country today. If we had proper capacity legislation, most of these people would be considered to have the capacity to consent about where they want to be.

Deputy Finian McGrath: Information on Finian McGrath  Zoom on Finian McGrath  Ms Carroll also mentioned the potential for financial abuse of adults with an intellectual disability. From her experience in Inclusion Ireland, is this widespread?

Ms Deirdre Carroll:  Yes.

Deputy Finian McGrath: Information on Finian McGrath  Zoom on Finian McGrath  Are family members, carers or the people running the services involved?

Ms Deirdre Carroll:  We are very concerned and particularly in recent years we have had many complaints from people who have no control over their own money. Even people’s disability allowance now goes through agency agreements to either family members or carers, and there have been a number of cases involving significant financial abuse. It is quite widespread and people come to attention or are made wards of court in such cases. Problems can arise when persons are made a ward of court, and I will provide a telling example.

A gentleman I know received a large sum of money from the redress board, having spent his life in an institution and having been found to be abused. He finally got proper redress and a large sum of money but he had to be made a ward of court to access the money. He has a loving family and he only has a mild learning disability. On being made a ward of court the money could be accessed and accessible transport was purchased so he could visit the family home, where his sisters live, and he goes there every two weeks. The wards of court released money for that van. The man is now in a wheelchair and cannot use the bathroom in his family home. The Office of Wards of Court will not release money to adapt the bathroom in the family home because it is not his home. Generally, money will not even be released for capital expenditure.

This shows how people get money which is meant to be for their best interest but it can be guarded in such a way that we make decisions on that best interest which are wrong.

Deputy Finian McGrath: Information on Finian McGrath  Zoom on Finian McGrath  Do the witnesses have any figures for the amount of people with an intellectual disability who are independent in mind and ability and who can make informed decisions? Like the witness, I am a parent to a daughter with an intellectual disability, as she has Down’s syndrome. She is 24 and is well able to make up her mind on matters and make decisions on what she wants with regard to care, etc. I know there are people with severe intellectual disabilities and communication problems but in the broader disability demographic what are the figures?

Ms Deirdre Carroll:  The national disability database has approximately 25,000 people with intellectual disability, with approximately 11,000 classified in the mild to moderate category. They would be people who can make decisions. We must be careful about setting the bar very high; the legislation could set the bar far higher for people with disabilities and other conditions than we set for ourselves. We all have the right to make a bad decision.

Ms Frieda Finlay:  The law must change and the approach of lawyers dealing with people with intellectual disabilities is very important as well. I know of a case which was dismissed because a young person was asked how many brothers she had but she could not answer. If she had been asked the names of her brothers she would have been well able to answer. If she had been asked the date of their birthdays, I can guarantee she would know every one.

People who go to court and cannot speak English get support from an interpreter and people with an intellectual disability should also get support from somebody who can help that person make decisions.

Deputy Finian McGrath: Information on Finian McGrath  Zoom on Finian McGrath  I have one or two further questions. The witnesses mentioned the term “second class citizens”. Is there a mindset within the political system that is not aware of the disability and equality issue? Some of us thought there had been change over the past ten years and there had been major progress. Do the witnesses believe that most parliamentarians, deep in their hearts, see these people as patients?

Ms Frieda Finlay:  Yes, and many people in the general population also feel that way. I would have felt that way before I had my own child. It is a matter very close to a person and experience would shape it. That experience must be used and valued. We know our children and there must be some form of functional decision making as well. They can live their lives from day to day without making such decisions as having a glass of wine at a Christmas party. Anybody who needs to make a legal or financial decision does not necessarily go in on their own. People bring in people with knowledge of those areas and so should people with intellectual disabilities.

Deputy Finian McGrath: Information on Finian McGrath  Zoom on Finian McGrath  With regard to signatures, service providers will often argue with parents and people with intellectual disabilities that there is an insurance issue. What is the response to that? If the witnesses were the Minister responsible for disability issues, what three important actions could be taken with regard to this piece of legislation?

Ms Frieda Finlay:  I would certainly remove the language that is so insulting to anybody; the Deputy or I would be greatly insulted if we were addressed in that fashion in the legal system.

Chairman: Information on David Stanton  Zoom on David Stanton  Will the witness give an example of what should be removed?

Ms Frieda Finlay:  The term “lunacy”. My child-----

Chairman: Information on David Stanton  Zoom on David Stanton  Could we-----

Ms Frieda Finlay:  Sorry, the Chairman is referring to the new legislation.

Chairman: Information on David Stanton  Zoom on David Stanton  Yes. Should the name be changed?

Ms Frieda Finlay:  Yes. It should refer to legal capacity rather than mental capacity. The Bill should deal with functional decision making and supported decision making as people should be able to make their own decisions on where to live, what they wear and where they go. People need support in making decisions and if that takes time, it should be given to them. The Law Reform Commission has been working with us for the past 15 years.

With regard to sexual crimes, people do not get sex education as there is an idea they will not have sex. It is outrageous that concepts such as romance and love are not considered. Organisations may argue this should not happen as it is a crime - parents may have the same idea - but that is to deny people their human rights. With capacity and consent, this happens to people all the time and their lives are separated, which is outrageous.

Chairman: Information on David Stanton  Zoom on David Stanton  Senator Bacik wishes to ask questions of the delegation from the Psychological Society of Ireland.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  I thank all the speakers for their excellent presentations. They have made the case very powerfully for the need to change the law, which we are all signed up to. It is great to have the heads of the Bill before us and this process in motion, as has been stated. Those from Inclusion Ireland made a very interesting comment on the title of the Bill and we should be careful not to fall back into the use of old language. From the criminal law perspective, where I come from, we still use the term “insanity” in the up-to-date 2006 criminal law legislation, and I would like to see that changed. I am conscious that much work has already been done in the Law Reform Commission, which over nearly ten years has produced reports on a new structure.

I will try to tease out a few of the issues in the structure. The first point is the idea of being expressly included as clinical psychologists. From reading the heads of the Bill there does not seem to be an exclusion. With regard to head 13, there was a request that expert reports would be prepared by clinical psychologists, but that is clearly envisaged in the head. I wonder if it is necessary or advisable to include specific categories of people from whom expert reports could be sought. It is safer to have a more general process.

There is a specific distinction made with regard to special visitors in head 38, and the delegation asked for the profession to be included in that regard. I have perused this carefully but I do not see any great advantage in this, as the registered medical practitioner is the special visitor and anybody else with the requisite qualification can be a general visitor. Head 32 gives powers of both and no distinction is made. It seems that it may be better to leave the discretion as to whether a general or special visitor could be appointed by the office of the public guardian. I do not see any particular advantage to the suggestions being made about the professional body.

Dr. Simone Carton:  In the current practice and theory, in order to be made a ward of court, for example, two medical practitioners need to be able to make that decision. In practice, clinical psychologists are being asked to give opinion, and that is being accepted by the courts. The idea is to clarify this. I welcome the Senator’s comments but we wanted to capture the point that there is no exclusivity in the title in reference to a medical practitioner or a clinical psychologist. If the question is about a person’s capacity to make a decision about having treatment, the issue might be that the person has the beginnings of dementia or a brain injury and may be forgetful. Let us leave law out of it. Clinically, a clinical psychologist would answer the question. In law, two medical practitioners do so.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  Not under the new Bill. The new scheme is more flexible under head 13, allowing the court to require any appropriate expert reports. Is that correct?

Mr. Brian McGuire:  There is a reference to “medical (including cognitive assessment)”.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  Is Mr. McGuire suggesting it should refer to medical or psychological?

Mr. Brian McGuire:  Yes, it confuses the issue.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  Perhaps we can recommend some reference to medical and psychological.

Mr. Brian McGuire:  With specific regard to the special visitor clause, it uses the term “registered medical practitioner” in each case.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  Special and general visitors are then grouped together for the purposes of what they can do.

Mr. Brian McGuire:  Our argument is the same, that the role of special visitors should be based on expertise rather than profession.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  That brings me to the more general point made in this submission. Inclusion Ireland has been making some of the same points about the functional approach to the definition of capacity, which is focused on a person’s capacity to make a decision at a particular time. The Psychological Society of Ireland and Inclusion Ireland have pointed out that recognition of the degree of capacity must be included in this. Would it be helpful to include some consideration of the type of decision to be taken? Dr. Carton mentioned that a person might not have the capacity to manage a large amount of money but may be clear and reasonable in the capacity to manage other decisions, yet there is no recognition at present of the type of decision.

Dr. Simone Carton:  There is a hierarchy of decisions, ranging from what a person will have to drink to whether to spend an amount of money on buying a house. These different levels require different processes of weighing up. The literature talks about the hierarchy of decision making, which depends on so many variables. Acknowledging this and having some guidelines must be pushed further. It is a grey area and greater clarity would be welcome.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  Head 2 gives information on how to weigh up a person’s capacity to make a decision but there is no reference to the type of decision and this seems critical. As a lawyer, I am familiar with the best interests test and I am interested that Inclusion Ireland believes it is not appropriate. Is it a matter of definition? Is it appropriate to define it in such a way that is not paternalistic? We use the expression widely throughout case law, although am not saying we need to retain it for that reason. What do we replace it with? Head 3 refers to how we could determine a person’s best interests, and the Psychological Society of Ireland has given a good explanation of the lack of clarity on how decisions are made by personal guardians. Head 7 and head 8 need to be more detailed. Does this address the point about the best interests test? Can it be made less paternalistic through more guidelines?

Ms Deirdre Carroll:  I wonder why we need it in legislation. It is contrary to the UN Convention on the Rights of People with Disabilities, which never mentions best interests. The experience in involuntary detention through the Mental Health Act is that it is used in a paternalistic way. There are no guidelines on its use and it is something that should not be seen in such legislation. That is the view of Inclusion Ireland.

Chairman: Information on David Stanton  Zoom on David Stanton  Is Ms Carroll suggesting we should remove all of head 3?

Ms Deirdre Carroll:  Yes, that was in our original submission.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  Should we leave in the detail but call it something else? There must be a guiding principle.

Ms Deirdre Carroll:  The UN Convention on the Rights of People with Disabilities, to which we have signed up, makes no reference to best interests. We are talking about adults, not children, so in modern legislation this should not find a place. The minimum that can be done is to define it very broadly. Best interests are usually what the professionals see as the person’s best interests. That is our experience.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  I am interested in this point and I am grappling with it. A court may be asked to consider whether a blood test should be done on a newborn to save its life and, if the parents object, the best interests test is used. I take the point that it is perhaps not appropriate for adults but it is used so widely that we need something to replace it. Head 3 refers to how a person makes a determination on behalf of someone.

Ms Deirdre Carroll:  One must try to pursue the will and intent of that person, which is done by examining previous decisions, their background and the people who support them. Currently the best interests test is determined by professionals, and that has been the experience of legislation to date, including the Mental Health Act 2001. My theory is that it will follow in this legislation.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  These are helpful comments and I can see how we could build it into head 3 where there is already reference to the person’s past and present wishes and feelings. There is a requirement that a person should be permitted and encouraged to participate as fully as possible. I take the point that it is somewhat paternalistic. There is a lack of clarity for the person with the responsibility for making the decision - the personal guardian. The difficulty raised by other people is how to make this legislation compatible with existing legislation but Ms Carroll is saying that the existing legislation is problematic.

Ms Deirdre Carroll:  Many of the submissions in the review of the Mental Health Act refer to the best interests clause. Current case law is paternalistic in respect of this and perhaps we should leave this problem to legislators.

Mr. Brian McGuire:  In the same way as there is a hierarchy and guidance about the kind of decisions that need to be made, there could be a hierarchy to address the best interests issue. The default starting place should be assisted and supported decision-making, but at some point some people will be unable to make the decision. For these people, the decision must be made by other parties with the person’s best interests in mind.

Where we are talking about people with intellectual disabilities, it is not as relevant, but we must remember that capacity to make decisions is a fluid process. A person’s capacity today may be different and not necessarily worse and perhaps better in the future. Our research suggests that after providing specific education to people and measuring their capacity to make decisions related to sexuality, their capacity improves as a result of education.

Senator Martin Conway: Information on Martin Conway  Zoom on Martin Conway  My question on language has been pre-empted by Deputy Finian McGrath. I feel the title, Mental Capacity Bill, is inappropriate and we must be careful. Language has caused difficulty and offence in the past. It creates labelling, which creates division and inequality. As important as the Bill is, the language is equally important. I agree with the sentiments and I also believe the Minister does.

Chairman: Information on David Stanton  Zoom on David Stanton  That is an important issue. We had that previously with another Bill, which became the Education for Persons with Special Educational Needs Act 2004. We changed the name of that Bill and it made a significant difference to the thrust of the legislation as it went on.

Is Inclusion Ireland happy with the definition of capacity as in the heads of the Bill?

Ms Deirdre Carroll:  Yes. We are generally happy with-----

Chairman: Information on David Stanton  Zoom on David Stanton  With the Bill itself?

Ms Deirdre Carroll:  -----the definition of how one assesses capacity because there is no assessment on capacity. While recognising the learned persons and the medical profession, it must not be purely an assessment of a person’s capacity. There must be a social side to that. It must not be left to psychologists and psychiatrists to make the definitions and to assess capacity. There is a broader context. We would ask that, like in mental health tribunals, there be a lay member, a medical person and a legal person. We would like to see a more broad tribunal system in assessing capacity.

Chairman: Information on David Stanton  Zoom on David Stanton  I thank the delegations. If they wish, as they may want to interject later, they may move to the lower seats here or to the back, whichever they prefer. It is up to themselves.

Sitting suspended at 3.21 p.m. and resumed at 3.22 p.m.

Chairman: Information on David Stanton  Zoom on David Stanton  We are in public session. I ask everybody to turn off mobile telephones, and not merely leave them on silent, because they interfere with the recording system. If one has a mobile telephone, check to ensure it is totally off.

On behalf of the committee, I welcome Mr. Maurice O’Connell, chief executive of the Alzheimer Society of Ireland, Ms Eleanor Edmond, legal policy officer, and Ms Caroline Collins, public affairs manager. I also welcome Dr. Fintan Sheerin, director with the National Institute for Intellectual Disability, and Ms Siobhán O’Doherty, student support officer and research assistant. I thank them for coming today and giving of their valuable time and expertise to help us in our work and to get the best possible legislation on the Statute Book. I also thank them for the submission they supplied to the committee.

The format is the same as previously with a brief opening statement - try to be as brief as possible - and then an interaction, which, as they have seen, is quite important. We are focusing on the published scheme of the medical capacity Bill and how we can improve it. This is all about what the delegation thinks of it and how we can improve it.

Before I begin, I must draw the attention of the witnesses to the position on privilege. I ask them to note that they are protected by absolute privilege in respect of the evidence they are to give to the committee. However, if they are directed by the committee to cease giving evidence in respect of a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or persons or entity by name or in such a way as to make him, her or it identifiable. Members should be aware that, under the salient rulings of the Chair, they should not comment on, criticise or make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable.

I call on the representatives from the Alzheimer Society of Ireland to make an opening statement.

Mr. Maurice O’Connell:  On behalf of the Alzheimer Society of Ireland, I thank the Oireachtas Joint Committee on Justice, Defence and Equality for giving us the opportunity to present our position on mental capacity as it relates to our wider work and, most importantly, to the person with dementia. I am joined here today by Ms Eleanor Edmond, our legal policy officer to whom I will hand over at the end of my short statement, and Ms Caroline Collins, our public affairs manager. We welcome the opportunity to appear before the committee on this important issue.

We have made a formal written submission to the committee and I hope to use our short time today to cover some of the main points arising from this legislation as they relate specifically to the experience of persons with dementia.

Persons with dementia will be the largest single user group of the capacity legislation. Well over half of decisions under the UK mental capacity legislation relate to persons with dementia. There are over 44,000 persons in Ireland living with a form of dementia today and that figure is expected to reach over 100,000 by 2036. At some stage of their journey with dementia, every person living with dementia is likely to need some support in order to continue to make decisions.

To be effective, the legislation must create a system which provides a continuum of suitable supports, informed by and responsive to real-life situations of persons with dementia; is linked with the upcoming work on the national dementia strategy, which forms part of the programme for Government; and is accessible to persons with dementia.

The courts cannot be made accessible to persons with dementia. We cannot modify the courts in order to meet their needs. Persons with dementia need a flexible informal tribunal which can meet with persons in their own setting, at a time which it is suitable and most effective to them and with the appropriate supports to maximise their capacity. The principles of the legislation should focus on this support. Whatever approach to capacity is adopted, it must focus on supports. From the perspective of persons with dementia, their need for supports will change. For example, somebody who has been diagnosed early may require no assistance initially in making decisions. Slightly later, a minimal amount of individualised assistance can help someone to continue to make decisions. Even persons with moderate to severe cognitive impairment may be able to make their wishes known on a particular issue with assistance from someone who knows them well or from a skilled dementia advocate. Most persons with dementia will reach a stage where they are unable to exercise capacity and will need a system of substituted decision making that is accessible, flexible and accountable. It is critical that the will and preferences of the person remain central in all forms of decision making, even when a person can no longer express himself or herself. If the wording “best interests” is used, it must be specifically defined as requiring the will and preferences of the person to be considered as far as possible; and consultation with those who know them to help ascertain their will and preferences. It is critical that persons can use the window of opportunity following diagnosis to plan for their future and make their wishes known. Public education and legislation on advanced directives as well as the promotion of early diagnosis of dementia are essential.

On advocacy, the experience of Dementia Rights Advocacy Service and international experience shows that independent personal advocacy can play a key part in assisting persons with dementia to express their will and preferences and exercise capacity. Independent advocacy is mandatory in certain circumstances in the UK under the equivalent legislation and its omission in previous schemes is a cause for concern.

The legislation provides an opportunity to address the situation of the “incapacitated compliant patient”. Many persons with dementia fall outside the protection of the Mental Health Act even though they are not free to leave the institution in which they reside and are not capable of consenting to remain. A critical issue for people with dementia is the absence of a robust review regime for medication and restraint. There is much evidence that both are often used inappropriately and guidelines are misunderstood or not applied. Capacity legislation offers an opportunity to strengthen protection for those who cannot consent to treatment.

On the need for public education, it is a big leap from 1871 to 2012. The public in general, people with dementia, family carers and health and legal professionals will all require education and support. A rights based approach to dementia is not currently prevalent despite pockets of good practice. There is a critical role for an office of public guardian or equivalent in terms of codes of practice, education and support.

I invite our legal policy officer, Ms Eleanor Edmond, to make a short statement.

Ms Eleanor Edmond:  I thank the joint committee for the opportunity to appear before it. Mr. O’Connell has outlined the key points in our submission, on which we would welcome questions.

One of the points raised in the earlier discussion was the need to emphasise supports. Senator Bacik asked whether best interests are ever appropriate. From the point of view of someone who worked as a dementia advocate for three years and is now trying to apply that experience in the context of what is needed in the legislation, it is extraordinarily important that the principles of the legislation emphasise the need for support. We see capacity assessment as triggering support. The Council of Europe Commissioner for Human Rights, Thomas Hammarberg, in a recent paper, referred to the functional approach having a place where it triggers assessment of support. That involves asking what supports need to be put in place rather than leading to the removal of capacity.

Senator Bacik also asked a question on whether there is a need for different types of decisions. The principles are extremely clear. Every decision is a specific decision as to which capacity is being assessed. That in itself is a protection against the threat of people’s capacity being unduly limited. However, we would like to place emphasis on support and advance planning. It is vital that people with dementia have an ability to make their wishes known in advance on adequate supports and consideration of advocacy. Our colleagues in the United Kingdom have asked us to learn from their mistakes on the deprivation of liberty safeguards. Such safeguards were added later in the UK in response to cases which did not work out as well as they should have. The capacity legislation provides a strong opportunity to consider the position of people who are not free to leave the institution in which they reside. One of the issues our colleagues in the UK indicated to us is research that shows a frightening degree of overuse of anti-psychotic drugs in people with dementia in nursing homes and other institutions as a form of behavioural control. The lack of a robust review regime is critical in this regard. A framework for decision making, regardless of whether it is described as “best interests”, is needed which allows people to be held to a particular standard when making decisions about treatment and medication. One of the things our colleagues in the UK have reported is that legislation there has been useful in addressing the issue of inappropriate restraint.

A great deal of useful analysis has been done recently. A report by the Mental Health Foundation in the UK on the application of best interest decisions indicated that people with dementia may be at a disadvantage in the interpretation of best interests. Specific issues need to be addressed in this regard. The report also examines solutions around de-paternalising and defining. The term “will and preferences”, as used in the United Nations Convention on the Rights of Persons with Disabilities, should be part of the definition of best interests if such a definition is used.

Chairman: Information on David Stanton  Zoom on David Stanton  I ask the delegation from the National Institute for Intellectual Disability to make its presentation.

Dr. Fintan Sheerin:  I thank the joint committee for the invitation to make a presentation. I will speak to the submission, after which my colleague, Siobhan O’Doherty, and I will field questions from members.

The mission of the National Institute for Intellectual Disability, NIID, is to promote inclusion for people with intellectual disabilities through education, research and advocacy. We have many stakeholders, including people with intellectual disabilities, their families, service providers, advocates and the research community. We consider all developments in civil society, including legislative changes, from a rights based perspective. When considering the impact of legislative changes on the inclusion of people with intellectual disabilities in society and their rights any representations must reference the existing position of people with intellectual disabilities in Ireland and the tangible impact the proposed legislation may have on the lives of our most important stakeholders, namely, people with intellectual disabilities. We hope to convey the human impact of the existing legislation and the concerns our stakeholders have regarding the proposed changes.

To provide a little background, I am an intellectual disability nurse by profession, in other words, one of those who is considered to be part of the old system or model. I do not apologise for being a nurse. I have realised in recent times that we have undergone model changes which have involved moving from the medical model. Deputy Finian McGrath questioned whether we had moved beyond the medical model. We hear in this debate that we have moved beyond medical models to social models or disability models. We need to throw out all the models. I am conscious of the words of President Higgins the other day when he stated that when one hears references to service users, customers and clients ultimately one is referring to citizens. One must consider this issue in the context of rights and the rights based perspective, as opposed to a rights model. If we fail to do this, the risk is that professionals like me will jump in and start to run the model again, resulting in what I describe as the perpetuation of model making.

It is important to consider the overall context in which people with intellectual disabilities live and how it is has been constructed to some degree in Ireland. Historically, people with intellectual disabilities have been marginalised, their lives regulated and daily decisions made for them by others. This has inevitably had an impact on their ability to develop their mental capacity for decision making. The report last year of the working group on congregated settings recommended dispersed accommodation and supported living in the community. While this recommendation is to be welcomed, it must be acknowledged that many Irish people with intellectual disabilities are in a position where the ethos of their service providers remains grounded in policies of control, congregation and regulation.

I have been involved in the establishment of Intellectual Disability Rights, a participatory action group. It is interesting to bring stakeholders - people with intellectual disability perspectives - to the table. We have engaged with 450 people with intellectual disabilities and asked them what are the most important rights they want in their lives. They have told us they want a place to live and call home, which is fine, and they also want to have relationships and a family. This includes being able to have a relationship with another person which does not stop when someone says it is going too far. They want to have relationships which have the potential to meet intimacy needs. The right to which they attached the highest priority was choice. They want choice not necessarily around the big things in life, but around the everyday small issues. They spoke about normal living patterns. At the end of one of our meetings, one man said: “I want to choose what clothes I wear in the morning.”

We are talking about legal and mental capacity for many of the big issues. If people are not supported and facilitated to make a choice about the everyday small issues in their lives, how can we expect them to learn how to take on decision making and develop their capacity? We are all born with potential capacity and many of us have that potential brought to reality through the support of family friends and mainstream educative structures. However, unfortunately, this is often not the context in which people with intellectual disabilities develop and many have not experienced the supportive environment and societal structures that are available to others. Thus, irrespective of real potential, it might be put forward that people’s incapacity in many cases is a socially constructed incapacity. In other words, it has been created by society, by us not allowing them to develop capacity or make decisions. Without a fundamental change in service provision and a statutory requirement for capacity to be supported and developed, I and the NIID believe that the experience of people with intellectual disabilities with regard to decision making will remain unchanged.

The National Institute for Intellectual Disability has examined the proposed legislation to determine whether it truly supports the rights of people with intellectual disabilities who need support in making decisions or who have been determined to lack the capacity to make decisions. Bearing this in mind, we wish to raise three concerns with regard to the Bill.

Chairman: Information on David Stanton  Zoom on David Stanton  I regret to say we are under a time constraint and would appreciate it if Dr. Sheerin could be as concise as possible.

Dr. Fintan Sheerin:  Okay. We feel there is a lack of detail on statutory supports, training and information for those persons tasked with acting as personal guardians to people with intellectual disabilities who are deemed to lack capacity to make decisions and we propose that provisions for support and training of persons tasked with acting as personal guardians be included in the Bill. We also feel there is a lack of information on the development of accessible information and training in decision making. There are three issues central to decision making for people with intellectual disability. First, we must support the capacity of people with intellectual disabilities to make decisions. Second, we must ensure that all practicable steps have been taken to ensure that a person with intellectual disabilities lacks capacity to make certain decisions. Third, we must recognise that decision making skills can change over time. Therefore, our submission addresses the need to make it a requirement that information and education on making decisions is embedded in this legislation.

Repeal of section 5 of the Criminal Law (Sexual Offences) Act 1993 was mentioned briefly earlier and we feel there must be a reference to that section in this Bill. I am aware this may be considered to be outside the scope of this piece of work, but if we do not deal with this issue, something central to people’s lives will continue to be regulated and governed by the perception among people working in the services that if they allow relationships to develop among people with intellectual disability, they place themselves in a legal quandary which could end with them being brought before the courts for breach of criminal law. We have spoken to those in these services and they have told us this is the perception.

As the law currently stands, consenting sexual relations between people with intellectual disabilities can be considered a criminal offence. Therefore, people with intellectual disabilities, their families, care givers and other stakeholders may be afraid to give support, information and guidance in the area of intimate relationships. This view is supported by the work of a PhD student in Cork who found that people with intellectual disabilities conduct their relationships behind the backs of other people so that they are not regulated by others. We urge strongly that section 5 of the Criminal Law (Sexual Offences) Act be considered in the context of the issues being dealt with in the Mental Capacity Bill. Notwithstanding this, the NIID shares the concerns of many stakeholders regarding the rights of persons who are deemed to lack capacity under the current legislation. We urge the committee to consider options that do not render a person as “lacking capacity”, such as supported or facilitated decision making.

In conclusion, we welcome the progress made in the drafting of this Bill. Our key stakeholders, people with intellectual disabilities, are confronted like all of us with life decisions. We urge the committee to consider the context in which these people live and the support currently afforded to them in exercising their capacity and to embed the proposed Bill and its operation in that context.

Chairman: Information on David Stanton  Zoom on David Stanton  Thank you. I invite Deputy Hayes to begin with his questions for the representatives of the Alzheimer Society of Ireland.

Deputy Tom Hayes: Information on Tom Hayes  Zoom on Tom Hayes  I thank the witnesses for their presentations. One issue that struck me throughout all of the presentations was the focus on the need for support. Will the witnesses elaborate further on what they mean by support, the supports that are required and when they should kick in? Should these supports be supplied by Government or by families? The main issue seems to be support. I am aware this is a very broad question, but will the witnesses elaborate further for the benefit of the committee on the supports required?

Ms Eleanor Edmond:  We would stress that the people who will be covered by this legislation are individuals. Therefore, it is essential that the support must be appropriate for the individual and we would emphasise the need for a continuum of support. As Mr. O’Connell said, people in the early stages of dementia may need little support. For example, someone may need little support if they are experiencing mild confusion and cognitive impairment and may prefer support in written format so that they can take something away and examine it in their own time and place where they can have someone they know talk through it with them. At a different stage, people may need lots of time. They may be able to come to a decision on something, but may need to hear the bones of what they are thinking about several times over. They may need the person providing support to get a sense of where they are and whether that is a consistent position. The supporter may need to build up a relationship with the person and visit him or her several times over a period of weeks in order to understand that every time some issue is raised with the person, he or she has the same view on it. The need to be given time to make decisions is not something unique to people with dementia, but as mentioned earlier, there must be an understanding of the time people need to make decisions.

In terms of the types of things that could be put in place to support decisions, it is important to understand the situations in which people function best on a day to day basis. Advocacy is an important support and we are very concerned at the omission of advocacy from the original scheme. In the United Kingdom, the experience would be that access to an independent advocate in certain situations has been critical to a person’s outcome. Advocacy is particularly important where a person does not have a circle of support or family members who know him or her well when he or she is faced with a life-changing decision. For example, in the United Kingdom, access to an independent mental capacity advocate is mandatory under the legislation in cases where a person faces a decision about where he or she will live or serious medical treatment and does not have access to family support or an informal circle of support.

With regard to people who are not free to leave the institutions in which they live or are detained, one of the reasons for the inclusion of the independent advocacy provisions in the United Kingdom was the strong hint from the European Court of Human Rights in Strasbourg following the Bournewood case. In that case, the applicant’s isolation from people who could assist him independently with making decisions was part of what weighed in his favour when it was found that he was, effectively, being detained. Therefore, advocacy is a key support.

Another key support is the recognition of the environments in which people function well. If people are diagnosed with dementia, they find themselves on a different trajectory from somebody with an intellectual disability, who, with support to make day to day decisions, like choosing clothes, and support with regard to exercising capacity, can maintain a level of capacity and grow and develop. People with dementia will experience fluctuations in their capacity, depending sometimes on whether an environment is disabling or not or depending on the specific time of day. Ultimately, however, they are on a trajectory which leads to a decreasing ability to make decisions for themselves. In maximising capacity for people with dementia the key is having their wishes and preferences known in advance. Advance directives are a key issue. It is likely, even with the best system of supported decision-making, representation agreements such as the British Columbia model and supports such as advocacy, some people with dementia will find they do not have a circle of support at some point. While we emphasise the need to put support mechanisms in place, there will be a point at which an accountable, fair and accessible system of supported decision-making will be necessary for them.

Deputy Tom Hayes: Information on Tom Hayes  Zoom on Tom Hayes  What if the levels of support required are not available?

Ms Eleanor Edmond:  This was reflected in a recent report on the functioning of a system of best interest decision-making under the Mental Capacity Act in the United Kingdom. One of the report’s concerns was that the quality of decision-making was limited in many cases by the resources available.

Deputy Tom Hayes: Information on Tom Hayes  Zoom on Tom Hayes  Decision-making was dictated by the resources available.

Ms Eleanor Edmond:  Exactly. Resources will very often dictate the quality of decisions made.

Deputy Dara Calleary: Information on Dara Calleary  Zoom on Dara Calleary  Do advance directives have any legal standing in other countries? At what stage does a person move beyond making his or her own decisions? Is there a medical diagnosis or a time definition? How many legal areas such as mortgage law, finance law and legal capacity do advance directives affect?

Ms Eleanor Edmond:  How long is a piece of string? There are many examples in many jurisdictions which we should consider. Advance directives can take many forms, cover many areas and contain many options. We ask legislators to examine the options because for people with dementia advance directives are the key in maximising capacity.

Senator Ivana Bacik: Information on Ivana Bacik  Zoom on Ivana Bacik  The courts can regard specific written instructions.

Ms Eleanor Edmond:  Yes, but we need to look at formalising these arrangements.

Chairman: Information on David Stanton  Zoom on David Stanton  We are all agreed that we need to aim at a rights-based perspective. The National Institute for Intellectual Disability, NIID, made several specific points about the legislation. It referred to the lack of detail on statutory supports and training information for those tasked with acting as guardians. Should they be qualified to act as such with some statutory training and supports? Putting a measure on a statutory footing must be specific. Is this diploma, certificate or FETAC level training? The National Institute for Intellectual Disability referred to the lack of information and the development of accessible information on training in decision-making. Head 14 in the legislation refers to decisions on incapacity being subject to review at regular intervals by the courts. Is the National Institute for Intellectual Disability suggesting the Judiciary should be trained in this regard?

Ms Siobhan O’Doherty:  Anyone required to make a decision needs to be informed about it. In the case of people with intellectual disabilities and their interface with society, it is very difficult to gather information because it is not accessible. The National Disability Authority’s monitoring reports on its code of accessibility for public bodies indicated that only 41% of public bodies had procedures to make information accessible. This is an indictment of society and does not even include private entities such as banks or private medical institutions. The World Health Organization reports cited the inaccessibility of health information, not mobility, as a key contributor to health inequity. It is important to enable and support people to make their own decisions. They do not have that chance, however, if the information is not accessible.

Chairman: Information on David Stanton  Zoom on David Stanton  What is meant by accessible information?

Ms Siobhan O’Doherty:  An accessible information working group has produced reports on this issue. It is the provision of information in plain English, that is easy to read, captures the salient points and may have graphics to support it. It is good practice to develop it in consultation with people with disabilities. For example, people who have English as a second language benefit from this type of presentation. Inclusion Ireland has developed excellent materials on decision-making, but it should be in the public realm and not fall to voluntary bodies to provide this information.

Chairman: Information on David Stanton  Zoom on David Stanton  I recall Down’s Syndrome Ireland producing a booklet which included basic information on the political process.

Dr. Fintan Sheerin:  On the provision of statutory supports and training, we do not want to create more professional groups. However, we have to ensure those engaged to act in supportive roles are properly positioned to act in these roles and not serving more than one master, which was a problem in the past. Many times those who acted in these roles were also providing services and it was difficult for them to act beyond the ethos of the service which was typically conservative in many regards. The provision of training has to be looked as a separate issue. We must understand how it fits within a rights-based approach, a normative living approach and a world which recognises capacity as opposed to incapacity.

Chairman: Information on David Stanton  Zoom on David Stanton  The appointment of a personal guardian is a significant part of the legislation. We have to be clear on what is involved in the National Institute for Intellectual Disability’s call for statutory training and supports. Who would provide the training? What would it entail? If the National Institute for Intellectual Disability has more to say about it, it can come back to us on it.

Dr. Fintan Sheerin:  We would be very happy to come back to the committee on it.

Ms Siobhan O’Doherty:  Germany operates a Betreuung system under which there are over 1.5 million guardians. Some are voluntary while others are not. We would be happy to send information on this to the committee. I am referring to the people who are appointed to help people take decisions. This system has been running for over ten years and a variety of people are involved. I can certainly send that information to the committee.

Chairman: Information on David Stanton  Zoom on David Stanton  They have an important role. That is something that struck me.

Ms Siobhan O’Doherty:  It is important to have input from advocates. For example, a national platform of advocates is being formed at the moment. It is important to have people involved who themselves have disabilities. That is our ethos.

Chairman: Information on David Stanton  Zoom on David Stanton  We will now take a short break before we invite the next group in.

Sitting suspended at 4 p.m. and resumed at 4.01 p.m.

Chairman: Information on David Stanton  Zoom on David Stanton  On behalf of the committee I welcome Ms Patricia Gilheaney, chief executive of the Mental Health Commission, and Dr. Mary Keys, commission member. I thank them for their attendance at today’s meeting and the submission they have supplied to the committee.

The format of today’s meeting is that the witnesses will be asked to make a brief submission and then we will have some interaction with the committee members. I draw the attention of witnesses to the situation with regard to privilege. I ask them to note that they are protected by absolute privilege in respect of the evidence they are about to give to the committee. However, if they are directed by the committee to cease giving evidence with regard to a particular matter and they continue to do so, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise nor make charges against any person or entity by name or in such a way as to make him, her or it identifiable. Members should be aware that under the Salient Rulings of the Chair, members should not comment on, criticise or make charges against a person outside the House or an official by name or in such a way as to make him or her identifiable. I invite the witnesses to make their submission.

Ms Patricia Gilheaney:  The commission welcomes the opportunity to address the committee. I will briefly outline the role of the Mental Health Commission, which will take approximately two minutes, and then I will hand over to my colleague, Dr. Mary Keys, who is a member of the commission and lecturer in law at NUI, Galway. The commission is an independent statutory body that was established in April 2002 pursuant to the Mental Health Act 2001. That Act commenced in full on 1 November 2006. Under the Act, the commission has two principal functions: to promote, encourage and foster high standards and good practices in the delivery of mental health services; and to protect the interests of persons who are detained in inpatient mental health facilities in Ireland.

With regard to the protection of persons, there are a number of specific functions. The commission appoints the Inspector of Mental Health Services, who statutorily must inspect every inpatient facility at least annually, and any other facility where a mental health service is provided at his or her discretion. The commission also appoints persons to mental health tribunals to review the detention of involuntary patients and appoints free legal aid to such persons. Since November 2006, there have been approximately 10,000 reviews of mental treatment detention orders in psychiatric facilities. The commission also makes rules to protect the interests of persons who are detained with regard to specific treatment interventions, as outlined in the Act, and is also involved in developing codes of practice for persons who work in mental health services. I will now hand over to my colleague, who will present the commission’s statement to the committee.

Dr. Mary Keys:  I thank the committee for inviting us. The commission acknowledges the recent developments, even since we wrote our extended report on the mental capacity Bill when it was published in 2008. Since then, there have been significant interpretative changes with regard to the UN Convention on the Rights of Persons with Disabilities. There is a need to focus on assisted or supported decision making as a key element in the proposed Bill. In the particular area of mental health law, we need to be aware of the importance of supported decision making in underpinning the mental health policy document A Vision for Change and the recovery ethos in mental health care, which focuses on the potential of the person to reach his or her maximum ability in controlling his or her own life. The recovery ethos is a fundamental philosophy underpinning mental health care, as is the move towards community care. The idea of support and assistance in making one’s own decisions is critically important.

To focus particularly on our remit here and what was contained in the 2008 Bill, there is, for example, no reference at all to mental health law and the interface with mental health legislation. It is a difficult area, as has been proven in the UK. We are very aware of the problem in the practice of mental health care, and I will outline for the committee the number of people, as far as we can ascertain, who might be affected by capacity law. The total number of admissions, according to our most recent figures, was 19,000 in 2010. This includes 2,000 people who were compulsorily admitted and 17,500 voluntary admissions. There is no Irish research on this area which allows us to extrapolate how many of those 17,000 might be affected in terms of having reduced capacity, either permanently or for a short period due to illness. I hesitate to suggest that we should follow these numbers, but they are the best we could do. We have to bear in mind that these pieces of research did not take account of the complexities of individual situations or the level of support involved in finding these people to be incapacitated. Nevertheless, the commission picked what we felt were the two most helpful studies. The number of people who are voluntarily admitted to mental health care and who lack capacity is between 5,000 and 6,000 annually. That is an approximation and members can see more detail in our submission.

Specifically, the concerns of the commission are to do with wards of court and other categories under the current law. We hope the wardship system will change with the incorporation of new legislation. We are expecting that to happen. The number of wards of court in mental health care is currently about 80 inpatients. The shocking thing is that these people are effectively detained, because they are not free to leave, but they have absolutely no safeguards under the present law. For example, they do not have access to a review of detention or a second opinion on their consent to treatment. They are a category completely outside the legislative structure because of a clause in the 2001 Act which retains jurisdiction for the High Court for any decisions to do with wards of court. Unless the High Court implements a similar system for detained patients, there is complete inequality here and potentially a breach of human rights law.

I will not go into everything we have suggested in our review of the Mental Health Act. We said, in response to what was in the 2008 Bill, that there should be a dual approach under one of the headings. There was a suggestion in the published scheme - I am not sure whether it was revised later - that there be a dual approach to wards of court, which would mean that new wards would be able to avail of the provisions of the Act while old wards might wait for a period of time. I cannot give the exact detail now but I know there was going to be an inequity in the system.

I will move on and look at the various categories under the Mental Health Act where issues of capacity arise. First, there is the issue of involuntary patients. Some involuntary patients are capable while others are incapable, but in either case their capacity can be overridden in terms of consent to treatment. The Act does refer to capable patients who are detained, and capacity is to some extent assessed, but we would argue that the provision is not strong enough. An important point was raised in a case in the European Court of Human Rights, Shtukaturov v. Russia, which we need to take into consideration, namely, that mental disorder alone cannot be the sole reason for removal of capacity.

By virtue of having a mental disorder, we cannot remove that person’s legal capacity. That is a very important statement underpinning all of this. We have people who are involuntarily detained, whose illness is unrelated to the mental disorder and they may not be capable. The capacity law will have to apply there. If they have a physical illness, like a broken leg, it is clearly not related to their mental disorder.

We recently made submissions in the review of the Mental Health Act 2001 and stated that all sections of the Act which refer to consent should be reviewed in line with mental capacity law and with the UN Convention on the Rights of Persons with Disabilities. We have emphasised that there needs to be a synergy between these laws, or else there will be enormous fragmentation.

There are 1,900 to 2,000 involuntary admissions made every year, which represents 10% of all admissions. There is obviously a much larger figure for voluntary admissions. Let us say that someone has been discharged from being involuntary. The person has been detained and it has been established that he or she no longer needs to be detained, but may remain in mental health care. That person then becomes a voluntary patient. There is no consideration of his or her capacity in that situation. There is a real concern about people in that category. It has been raised in the courts, but because of our paternalistic approach to best interests and to the definition of voluntary, which does not really differentiate from people who are de facto detained, the issue has gone unchanged.

Voluntary admission and treatment is a very obvious category. We can think of a person who is compliant but who is incapacitated. It could be somebody who has dementia. It could be for any reason and we could be talking about any kind of person. Hospitals are powerful places, so compliance is very easy to obtain from people. We need very clear protections in this area.

The UK has brought in very extensive, turgid provisions on the deprivation of liberty safeguards. It is extremely legalistic and is a massive process. People are now beginning to wonder whether it is appropriate at all. We must address this because we have people who are called voluntary who might be subject to a more restrictive form of care and treatment than a truly voluntary person or a person who is just voluntary and lacking capacity. Someone who is actually deprived of liberty may be subject to a regime of medication, does not feel free to leave and objectively is in a place for a not inconsiderable period of time. Such a person is deprived of liberty. We need to look at that particularly category because it arose in the European Court of Human Rights in the HL case, which was referred to earlier as Bournewood. The court stated that where a level is imposed that amounts to a deprivation of liberty, a procedure must be put in place under a state’s capacity law.

There is much concern about the age of consent. It is 18 under the Mental Health Act 2001 and 16 for general consent to medical treatment. The Law Reform Commission has produced a very good document on this that provides a comprehensive examination, and it has dealt with mental health care as well. That needs to be considered.

The next points are in respect of the guiding principles. When we wrote our first report, we welcomed the obligation in the proposed scheme to have regard to the principles underpinning the proposed law. That is still our position and it would apply to formal and informal decision making. We have concerns with informal decision making, because it is so vast. Reference was made in head 1(c) to assisting people to make decisions. All efforts reasonably possible must be made to ensure that people can make their own decisions. People spoke already about the statistics for the future with 100,000 people having capacity issues in 10 years or so. We really need to consider the sustainability of whatever approach we take. As a starting point, supporting people to enable them make their own decisions is clearly the most sustainable approach. The person is enabled to be independent in his or her decision making, so the State does not have to take that on board. We need to highlight that, and it would be in keeping with Article 12 of the UN Convention on the Rights of Persons with Disabilities. It would also be in keeping with the principle of the least restrictive alternative, which is a very important human rights principle when we intervene in people’s lives.

Support is not a one-off situation. It is a process or continuum to enable and build decision-making capacity. An important aspect of policy for us in this State is that we develop a supportive decision-making system. The Council of Europe has said that states need to look at any private arrangements that people can make themselves for their own futures. That statement was made as far back as 1999 in one of the early documents on capacity.

Best interests under the guiding principles is a really contentious issue. The commission is very concerned because the Mental Health Act 2001 has been interpreted by the courts in a very paternalistic way in some cases. There may have been concerns that people’s rights were overridden in pursuit of a best interests approach. The UN Convention on the Rights of Persons with Disabilities refers to the philosophical shift we need to make away from paternalism towards recognising the will and preferences of the person. Senator Bacik mentioned that earlier. I only recently realised that many decisions in our courts refer to preferences of people, so it is not outside our realm of language. In our review of the Act, we have stated that best interests have to be defined in keeping with the UN convention, however that is done.

The commission believes that advocacy is another form of support that should be introduced, not just because it is done in the UK, but because we have a wide variety of advocacy. We can have volunteers. We have a very large number of people who have recently retired or who are about to retire from practice. These people are able and capable. We have people who could be advocates. We do not always have to see it in terms of cost and State resources, so we should be pushing the issue of advocacy.

One of the Senators asked earlier about advanced directives. We already have enduring powers of attorney under our law. The scheme of the Bill proposes to advance that in a better way, and that is a form of advanced directive. It is already in our law. Advanced directives are being used widely. They are a natural type of support that we can offer to people, but not everybody takes them up. It is all about education and informing people about the benefits of it.

The last two points I wish to make are in respect of the decision-making structure. This is critical. The authority that will rule here in Ireland is proposed as a public guardian. Whether we call it public guardian or not - perhaps guardian has other kinds of overtones - we need an oversight body. There is no question about that. Whether the decision making structure should rest with the courts is a matter we need to take seriously. We need to think about issues of flexibility and sustainability. In England, the Court of Protection is not able to deal with all the difficulties it has encountered, so it has to be accessible as well. Flexibility, accessibility and sustainability are the three elements I would apply to whatever decision-making structure we have. Right now in Ireland we already have the mental health tribunals, which are flexible, accessible and can be responsive. That is not to say that is the system, but within it we could incorporate all of the issues we have spoken about. The circle of support around the person could be presented before such a body, which would enable the person and so on. When we move from what we are comfortable with, such as talking about the courts system, we also have other systems that might be more responsive to individual needs.

Reviews of the Mental Health Act and the Criminal Law (Insanity) Act are currently taking place. We are now producing a new capacity law. It is the first time we have ever had an opportunity to look at three laws that intersect significantly. If Government Departments were to pull together there could be a tremendous forward-looking approach.

Chairman: Information on David Stanton  Zoom on David Stanton  I thank Dr. Keys for the comprehensive analysis of the current situation.

Deputy Jonathan O’Brien: Information on Jonathan O'Brien  Zoom on Jonathan O'Brien  I want to touch on the last issue. The presentation referred to a co-ordinated approach and that there is an ideal opportunity for such an approach given the current review being undertaken. Dr. Keys referred to the fragmentation risk. Are we missing the boat? Are we considering things in isolation without looking at them in an holistic manner? Are we in danger of not having a co-ordinated approach?

We heard submissions on section 4 and people’s best interests. In her submission and Dr. Keys suggested we should change the title to “guiding principles”. She also said we should give some consideration to including new principles in the Bill. Can she comment on that?

Dr. Mary Keys:  I was referring to the Mental Health Commission’s review of the Mental Health Act. We have made suggestions on that. The commonalities are very clear in all the legislation and proposed capacity law. The underlying idea of supported decision making would apply across the board.

Deputy Jonathan O’Brien: Information on Jonathan O'Brien  Zoom on Jonathan O'Brien  I do not know if it is fair to ask a question or whether someone else wants to answer it. The more I read the submissions and speak to people, the more concerned I am that the proposed legislation will not bring us up to the standards needed to ratify the convention. Last week in the Dáil, the Minister of State, Deputy Kathleen Lynch, discussed the issue of disability. She said one of the objectives in the programme for Government is to ratify the convention and in order to do that we need to address some legislation. Is this enough?

Chairman: Information on David Stanton  Zoom on David Stanton  The point of having these hearings is to get different points of view.

Deputy Jonathan O’Brien: Information on Jonathan O'Brien  Zoom on Jonathan O'Brien  If we are to have a co-ordinated approach we need to make sure we do not ratify legislation which falls short.

Chairman: Information on David Stanton  Zoom on David Stanton  Again, that is the reason we are having these interactions with experts and practitioners who have studied the matter for three years. It will ensure we are informed as to where we might improve the legislation. If members want to table amendments we will take them on board. The Deputy makes an extremely good point. It would be terrible to pass legislation in the Houses and find we still cannot ratify the convention, which is one of the aims of the Bill. The Bill is badly needed in its own right. The Deputy might remind us of that.

Dr. Keys said there could be a better definition of “best interests” in the draft heads of the Bill.

Dr. Mary Keys:  Will and preferences have been raised, based on the UN convention. The wording needs to be strengthened in order that it refers to a particular person and his or her life.

Chairman: Information on David Stanton  Zoom on David Stanton  I ask Dr. Keys to suggest the wording. It would be helpful. We want to see how we can improve the Bill. We know what has happened up to now has not been adequate. We want to move from 1871 to 2012. We want to put legislation in place which will be effective and proper for however long is relevant. People coming after us might have other ideas.

Dr. Keys also referred to the important role of advocates. Is training crucial for them?

Dr. Mary Keys:  It would be very important.

Chairman: Information on David Stanton  Zoom on David Stanton  She mentioned public guardians and questioned the terminology.

Dr. Mary Keys:  There are very different views on that. I am more interested in how it works out. I do not have a suggestion on the terminology.

Chairman: Information on David Stanton  Zoom on David Stanton  If anybody has a suggestion on whether the term “guardian” is too paternalistic, I ask him or her to tell the committee.

Ms Deirdre Carroll:  Inclusion Ireland meets with its counterparts in other parts of the world. A lot of countries, such as Hungary, the Czech Republic and Slovakia are reviewing guardianship legislation which they introduced in the 1960s. The term “guardianship” is seen as all embracing. It would be useful to examine some other term. We would wholeheartedly agree with Dr. Keys on looking at the concept of tribunals rather than replacing one court-based system with another.

Chairman: Information on David Stanton  Zoom on David Stanton  Mr. O’Connell made that point in the submission from the Alzheimer Society of Ireland. People with Alzheimer’s disease were concerned and he made the point that there should be flexible informal tribunals which can meet people in their own settings at a time that suits them and with the appropriate support to maximise their capacity. We have heard that from a number of different witnesses. The term “guardian” suggests control and so on. We would appreciate suggestions from people who have a different approach.

Ms Eleanor Edmond:  To respond to Deputy O’Brien, a number of organisations, including us, have come together to try to identify principles to address what is needed to implement the spirit of the UN convention. Our submissions were made available to the committee. While people have different trajectories and specific concerns, there is a wide consensus on some of the principles which are necessary to fully implement the UN convention. Some of them have been addressed. Accessibility, to which the Chairman referred, is a major issue.

Chairman: Information on David Stanton  Zoom on David Stanton  There is a broad philosophical approach as well as the nitty-gritty detail of the wording of the Bill. The challenge we have is to try to mesh the two together. We would be happy to receive any help from delegations.

I thank the delegations for the interesting and valuable contributions on what is a complex matter. The new approach the Oireachtas has embarked upon, whereby we deal with the heads of Bills first, means we have an opportunity as legislators to have an input into Bills before they are published. Once Bills are published they are often set in stone and it is very difficult to change them.

The Bill has not been published, rather there is a proposed scheme which is up for grabs and can be changed, adapted and modified. That is why we are having these hearings. This is a complex Bill and impacts on many people and families. Their lives can be improved if we get it right. It is to be hoped the system will work. The delegations should feel free to keep in contact with the committee as the Bill progresses through the Houses of the Oireachtas.

The joint committee adjourned at 4.30 p.m. until 9.30 a.m. on Wednesday, 29 February 2012.

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