David Norris (Independent) | Oireachtas source

I welcome the developmental nature of this Bill, as demonstrated by the Minister of State in accepting amendments both from the committee and in the Dáil. I hope she will be open to other amendments which have been suggested today. I was amused to hear that she spoke about introducing a series of amendments on Committee Stage to transfer jurisdiction to the Circuit Court to reduce legal costs. As I recall, in the explanatory memorandum quite a play was made on the idea that this matter was so serious that it would go to the High Court. I am not sure that cost alone is a sufficient reason for making this change so I will listen with interest to what the Minister has to say on it.

The Minister and various speakers have said that this legislation was very necessary because we needed to ratify the United Nations Convention and that one of the reasons for our failure to do so up to now was the antiquated state of our law, as indeed is the case.One of the principal reasons preventing us from doing so is the antiquated state of our law. One of the main Acts governing this area is the Lunacy Regulation (Ireland) Act 1871. Even the word "lunacy" is now repulsive to national sentiment. That Act was passed "to amend the Law in Ireland relating to Commissions of Lunacy, and the proceeding under the same, and the management of the Estates of Lunatics; and to provide for the visiting and the protection of the Property of Lunatics in Ireland...". It is astonishing to think this legislation still survives and it is very welcome that it is being amended. We will now rebalance things away from the concept of the best interests of the patient and the "Does he take sugar?" approach to mental impairment. This was determined by others, that is, third parties; we are, therefore, moving towards the idea of following the expressed wishes and preferences of the individual concerned. People may need assistance in making decisions about where to live, for example, and whether they should move into a congregated setting such as a nursing home and so forth and it is good that they should be given such assistance.

I welcome the establishment of a decision support service. This is very good. However, why should it not be a stand alone body, rather than being under the Courts Service? It would be better if it was seen to be completely independent and not under the courts.

There are over 535,000 people in Ireland over the age of 65 years. As people get older, the incidence of dementia, particularly Alzheimer's disease, increases considerably. The number with dementia is rising every year. A total of 45% of people aged over 85 years are affected by dementia, a syndrome that causes a deterioration in memory, motor function, thinking, behaviour and the capacity to look after oneself independently. However, it is recognised that there are varying degrees; it is not just a blanket term of "lunatics". One of the most remarkable cases in recent years involved the distinguished author Sir Terry Pratchett. Despite being diagnosed with Alzheimer's disease which affected his spatial capacity, it did not affect his language skills and he continued to write novels up to the date of his death. It is very important that there is recognition of the variety of levels of capacity of the people concerned.

The Bill properly reflects the current idea that a person has the capacity to make a decision, unless the contrary can be shown and it can be demonstrated that he or she lacks that capacity. Frequently in the past people with dementia were considered to be incapable of making any decision, not just a particular decision, and the capacity was taken from them. I cite a case in the English courts, CC v. KK and STCC. It involved a patient who, in maintaining her right to stay at home, said that if she fell on the floor and died at home, she fell on the floor and died. That was her decision and it was perfectly reasonable. Many people want to stay at home. We are perishable goods and are all going to kick the bucket at some stage and she was quite satisfied with this. She indicated that the preferable option for her was to die in the emotional security of her own home, given the relative freedom she had. It was much better for her than the comparatively safer, more sterile environment of a nursing home. The judge agreed with her and cautioned against conflating a capacity assessment with beliefs about the person's best interests. We are back again to the question of best interests.

I took a particular interest in one of the many briefings I had received from interested groups. It was simply expressed, but it came from a group of people with limited intellectual capacity, the Inclusive Research Network. One of the points it made was that some of its members thought it should not give a response without an easy-to-read version of the Bill. That is a very good point. We deal with legislation all the time and, as Senator Katherine Zappone said, we often make decisions in a way in which we are not fully aware. As a legislator reading complex legislation, I am often not fully cognisant of the complete impact. I have often said in the House that it would be good if we could make the language of legislation more accessible. I do not make that point particularly with regard to this Bill, as it is no more dense than any other, but an easy-to-read version would be a good idea not just for people who are mentally impaired but for the general population. It would make the progress of legislation more accessible.

The submission from the Inclusive Research Network also states: "No one has come from the law commission to explain the Bill and ask us questions". It is an interesting observation, as its members are directly affected. It proceeds to ask: "What happens when a professional assesses your capacity? What if they get it wrong?" I do not know if there is an appeals mechanism provided for in the Bill. There is then the question of relationships. The submission states:

We know it is our right to have sexual relationships under the United Nations Convention on the Rights of Persons with Disabilities. We were told by the Law Reform Commission that the Criminal Law (Sexual Offences) Act 1993 would be changed at the same time as this capacity Bill. We feel that by asking us these questions government will say they have consulted with us. We don't see the point if our say doesn't go anywhere and seems to be made little of.

There might be answers to all of these questions and they are relevant because they come from a group of people who are affected by this legislation.

Turning to another group, I have been contacted by a family with a son who is in this category. Investments made on his behalf deteriorated very rapidly during the financial crisis, about which the family was very concerned. A report from the Committee of Public Accounts made the following points:

1. Some individual funds were severely depleted in value in the period from May 2007 to January 2009 because of the fall in the unit value of the growth fund required units to be sold in a depressed market in order to make maintenance payments to the ward. [That considerably disadvantaged the beneficiaries of this fund.]

2. While the funds, held in trust for wards of court, are invested by independent fund managers the overall performance of the fund is not subject to independent assessment.

That is extraordinary. If money is invested on behalf of people through a third party administrator, it should be independently assessed. The report continued:

3. The funds of the wards of court are not audited by the Comptroller and Auditor General.

The committee recommends as follows:

1. The management and performance of the Wards of Court growth fund in the period from May 2007 to January 2009 should now be the subject of an independent review having regard to the dramatic fall in the value of certain individual funds which have become severely depleted to the point where there may be a danger that the funds will run out.

2. The ward of court fund should be subjected to periodic independent assessment in respect of the investment performance of the fund and such reviews should be published.

3. The funds held in trust for wards of court and any funds held in trust by the proposed Office of Public Guardian should be audited by the Comptroller and Auditor General and legislative amendments to facilitate this should be brought forward by the Minister for Finance and-or the Minister for Justice and Equality.

That appears to be very reasonable. If people are charged with the administration of funds on behalf of people who lack capacity, they should be monitored.

Another question concerns the use of restraint. I have received a communication from Mr. Mervyn Taylor who states:

Chemical restraint is a violation of personal and bodily integrity, constitutes inhuman and degrading treatment and, in our experience, is being used in certain circumstances to effectively deprive people of their liberty rather than to address underlying clinical issues. As such it is in breach of Article 3 of the European Convention on Human Rights and must be prohibited.

I have also received information from the College of Psychiatrists of Ireland on a similar related issue, engaging in restrictive practices on people in this situation where it is considered to be "in their best interests". We come back to what is being reversed by the Bill. It states:

For example, persons with intellectual disability and other illnesses occasionally need phlebotomy (blood tests) and other painful interventions which they may resist (e.g. vaccination). [I have just had my influenza vaccination because I am 71 years old and people over 65 years of age are advised to get it.] Restraint is sometimes used in such circumstances in order to carry out the procedure in the best interests [we hear this repeatedly] of the person. It is the view of the College that this Bill's provisions regarding informal decision-making are insufficient in view of the intrusiveness and coercive nature of such necessary actions.

Finally, even more worrying to the organisation, and also I think to all of us, is the question of people of limited capacity when they discharge themselves or run away from the institution, sometimes endangering their own health and life. It states:

If the safety or life of an individual with intellectual disability is at risk because of absconding from the place where he or she lives or works, this Bill does not appear to provide any legal basis for preventing the individual from leaving. This is likely to be a key issue with families of the individuals with disabilities, who regard intellectual disability placements or residences as places of safety for their family member. This may no longer be the case under this new Bill.

Therefore, I seek reassurance from the Minister of State that this matter will be or has been addressed so that people who may be a danger to themselves may be prevented from running away from a place of security.