Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witnesses (Questions 645-659)


21 OCTOBER 2003

  Q645  Chairman: Good afternoon, I would like to welcome you here. I would like to thank you for your written evidence, which is very helpful, and also finding the time to come and help us this afternoon. As you know the session is open to the public, it is being recorded and broadcast and if you are interested it will be on the Parliament Channel at 6  o'clock on Sunday evening. There will be a transcript of the evidence which you will see and if you wish to correct it you will be able to do so. If there are divisions in either House I will have to adjourn for about 10 minutes while either the peers or the MPs will have to go and vote. Even though we have microphones in this room the acoustics are not particularly good, if you would speak up it would be helpful. If we are unable to reach all of the questions we sent to you in advance and you want to write to us afterwards with your views on those or any of the exchanges that we have afterwards that is entirely in order. Can I suggest that you might like to introduce yourselves. If any of you wish to make a statement at the beginning this will be the time to do it.

  Mr MacGiven: Nico MacGiven, Campaign Officer for National People First, an organisation for people with learning difficulties.

  Mr Lee: I am Andrew Lee, I am a Director of People First. I have also been a trustee of POhWER, the advocacy agency in Hertfordshire which was awarded the ICAS bid for Hertfordshire. I have been in the self-advocacy movement since 1994.

  Ms Aspis: My name is Simone Aspis, I am a Director of Changing Perspectives, we do dissipated quality training and consultancy on a wide range of issues around disability and support various campaigns on disabled people's rights.

  Mr Downs: My name is Richard Downs, I work for Brent Advocacy Concerns as a coordinator. I am here today as a support to Changing Perspectives. I specialise obviously in advocacy.

  Dr Collins: I am Jean Collins, I am the director of Values Into Action, which is a research and development organisation. I work purely to improve the prospects of people with learning difficulties.

  Mr Brookes: My name is Mark Brookes, also of Values Into Action. I have been an advocate for self-advocacy groups all across the country around the White Paper and have been involved in advocacy for about 15 years now.

  Q646  Chairman: Thank you very much. Did any of you wish to make a statement at the beginning, a short statement, or shall we go straight to questions? Shall we start with the questions? Can I ask you, you have seen the draft Bill and you have sent us some very, very helpful written evidence, could I ask you first what you do not like about the draft Bill?

  Mr Lee: The general authority to act is open to abuse. Paid carers and relatives could say that we cannot make a choice because it is what is best for them rather than best for people with learning difficulties. This will go against the aims of more choice and control for people with learning difficulties in valuing people, for instance living independently or having relationships. It goes against the human rights, for instance rights to freedom, rights to family life and rights to privacy. Our members have told us about their relatives and paid carers bossing them about, this shows that it is unwise to put our faith in these people to really allow us to make our own choices. There is no easy way for people to complain. It is no good relying on social services' complaints procedures because they do not work and many people do not know how to use them. There is no complaints procedure for relatives or neighbours stopping you from making a choice.

  Q647  Chairman: Thank you. Does anybody else want to comment?

  Ms Aspis: Continuing from the list we would like to build on the list that people have first set and we have identified some additional concerns. The first voice does not start from the perspective of a right to make decisions it starts with the perspective that people are unable to make decisions, so it does not start from the basis of rights. The definition of incapacity and also the difficulty in terms of defining what capacity is are both subjective, which means it can be open to abuse by relatives or anybody who could really reasonably decide whether somebody else has the ability to make a decision for other people. On the other hand if you go for an objective perspective you then start going back to IQ testing and other ways of assessing decision-making as to whether somebody has the capacity to make a decision. That cannot be the right way to do things because we all make decisions in different ways. It also starts from the place that people must always make a decision as well so therefore there seems to be no room for people who for one reason or another might choose not to make a decision. It also starts from the place where people might wish to say no to a choice that is being made. We also think there an assumption, it starts with a person's deficit, so a person is unable to make decisions, as opposed to looking at the reasons why somebody cannot make decisions based on external factors like communication support and past decision-making experiences. We also think it goes against the principles of the Human Rights Act.

  Mr Brookes: A couple of things, one thing is it was not accessible for people with learning difficulties. The other thing is that it is supposed to be about valuing people, there is nothing in there about valuing people. There is no advocacy in there and there is nothing about planning for people.

  Q648  Chairman: Would you think that since the Bill actually does say that everybody is assumed to have capacity and anybody who wishes to question it has to prove otherwise, do you not find that helpful that it is assumed that everybody has capacity and then you have to show people that they do not have that capacity? Do you think that is helpful?

  Dr Collins: One of the problems with that is there is an assumption that you either have capacity to make a particular decision at a particular time or you do not have capacity to make that decision whereas in fact in real life all of us have varying levels of capacity round particular decisions. It is very seldom that we can instantly make a decision by ourselves, we tend to look for help, advice and support from other people and the amount of that support from other people will differ enormously between different decisions. One of the problems is that you assume that you have capacity or you lack it. There needs to be a provision within the Bill for people to be able to receive support, to use support to help them work towards making decisions in exactly the way that the rest of us do, although perhaps we need less support most of the time, but nevertheless many, many people with learning difficulties can reach a decision if they are given, the kind of support that people need over a period of time and that takes into account their particular problems.

  Q649  Mrs Browning: Could I just ask following on from that, how do you envisage that support helping people with a disability where they have difficulty conceptualising something that is outside their own experience because very often for that group of people if you give them a choice of two or three options they cannot visualise what that would mean to them as individuals. How would you see the support they need? Would you suggest that no decision should be made until they have been, say, taken to see what the three different housing options are or is that where the independent advocacy would come in?

  Dr Collins: It depends on the type of decision they were making. If it is a decision about where somebody is going to live time does need to be taken to take people, perhaps not only just to see what the house might look like or the flat but to enable people to have the experience of living in it for a period of time in order to find out if it is something that they want to do. People need to have the opportunity to actually experience what is being offered to them. If it a less important decision, if it is not such an important decision in someone's life they might not be able to vocalise their views but they will have a view, they know what their likes and dislikes are and people round them need to work with them to find out what it is that they like and what they do not like and how that can then be expressed in the decision that needs to be made. For example, how does somebody want to spend their days, should they go to a day centre or should they be supported to do a variety of different activities? The person may not be able to give a straightforward answer to that question but the people round that person knows when they go to the day centre they can become very distressed or when they go swimming they have a great time. It is about knowing the person and it is about using their reactions, which may be extremely helpful. What I am arguing about is that even in relation to one decision at one time somebody might initially appear not to have the capacity to make a decision but through working with that person, helping them experience different situations they can demonstrate what they like and what they do not like and what the person is indicating is itself a decision. You can bring somebody to the point where they can make a decision even though they are not verbally saying it.

  Q650  Baroness Fookes: The Bill does actually allow for that, it seems to me it is concerned not so much with the wording of the Bill but as to how it might be implemented in practice?

  Dr Collins: You say the Bill allows it, it does allow it but it does not say it has to happen and for people with learning difficulties it will not happen.

  Ms Aspis: There are problems, it does not start from the right space. There are no rights, it does not say the right to advocacy, the right to decision-making, the right to personal centre planning, it does not specifically say those rights. It does start from a different place, it does not start from the right to make decisions and the support that is needed. In terms of the definition we would like to see something different from incapacity which may be kicking in with the process when somebody cannot make a decision as opposed to when a person is labelled to be capacitated because then it allows a much more objective view if they want to make a decision as opposed to whether the person is or is not able to do so.

  Q651  Laura Moffatt: Mr Brookes you said something very interesting, you said the Bill itself was not accessible, I just wonder if anybody or you yourself could say how that could be better the next time or what lessons can we learn before the Bill comes before us? Coming out of the second part of that conversation I am clear in my mind that the Bill is more effective for those who lose capacity and for those for who decisions have to be made and already this debate in the short-term has exposed it is very different from having a learning disability. My sister has worked with people with learning disabilities, she now runs a bungalow for a health trust for lots of people who have learning disabilities and their decision-making processes are very different and I think we need to explore that much more today so that we can be very certain that this Bill is going to do the business for people with learning disabilities.

  Mr Brookes: The first one first, I do not know if the group or whoever wrote this worked with people with learning disabilities, maybe you could work with people with learning disabilities to help write it so there is a lot more pictures, a lot more shorter words, not 120 pages long like the White Paper when it first came out, and I actually read that from cover to cover.

  Q652  Laura Moffatt: You beat me.

  Mr Brookes: Yes, it took a long time. I think that answers that question. Perhaps do not do just one draft, if a couple of things do not look right you can go back until they are. Your second question, I will give you a for instance, I was at the Orchard Hill Hospital—I went on behalf of another organisation, I belong to the National Development Team—and I was accompanying someone round. It is dreadful, it is a shocking place to go. Some of the people there could express when they were happy and when they were sad, we took one young man out and he was smiling all the time because there they do not get to go out much for walks. I think people can express it in some way. I have also worked with quite a few people on a one-to-one basis and if you spend time with them you have to be patient with them. You have to patient with anyone who you work with, even Jean has to be patient with me! It is about understanding and a lot of the time knowing what they want. It can be done. Thank you.

  Q653  Stephen Hesford: General authority open to abuse. Can you help us on this, does the Bill add to the current problems, ie what the common law currently does or does it add to it, is it the same as or is it better? At the moment I do not have a general understanding as to whether this Bill creates an offence by its very existence or whether it is just might be what you want in an ideal world?

  Dr Collins: As is currently drafted in my view this Bill legalises what is currently done by and large unlawfully in terms of decision-making being done on behalf of other people. At the moment because the law is so unsatisfactory many, many decisions are made for people with no legal basis. This Bill if it were to go ahead would legalise that position without ensuring those decisions are what people want and without ensuring that people's views are properly and thoroughly taken into account, it would actually worsen the situation of people with learning difficulties.

  Mr Downs: I would agree with that totally for people with learning disabilities. I think the Bill fails to recognise the reality of the lives of disabled people through general authority and it accepts that a lot of people have already shown they cannot be trusted with these best interests and are being put in a position where they can say, "I did this because I was acting in your best interests". If their best interests are the same as what I think is in my own best interests then I do not have any recourse through this Bill.

  Q654  Lord Rix: Could I ask Mr Downs and Simone Aspis if there is so much wrong with the Bill they think we would be better off without it or would we be better off with a similar Bill but with a more positive approach to the problems you are listing. For instance instead of being called the Mental Incapacity Bill it was called the Supported Decision-Making Bill, and that was carried through the clauses of the Bill as a theme, would you consider that to be more acceptable?

  Ms Aspis: Can I move on to ensure that Nico gets an opportunity to respond before I answer your question .

  Mr Lee: This is in answer to Mr Hesford's question.

  Mr MacGiven: The "General Authority" is too easy to abuse, it puts too much trust in relatives, staff and others to really support people to make their own choices. Lots of People First members have told us that relatives and staff do not support them to make their own choices. Our members told us that they are bossed about by relatives and staff and that decisions are made for them that are really best for the relative, paid carer or service provider. For instance, people who need support to go out will be stopped from going out by services providers because the service provider has not paid for enough staff to provide support for the person to go out. More authority will mean that over-protective relatives, paid carers and other people will be legally able to stop us doing things that we could do. Paid carers, relatives and other people will be able to use general authority to control people with learning difficulties to suit themselves. If challenged they just say that they thought the person with learning difficulties could not make their own choice and they getaway with it. Another problem will be that people will say that it was unreasonable for them to think that someone cannot make a choice just because someone has learning difficulties.

  Q655  Chairman: Thank you very much, that is very helpful indeed.

  Ms Aspis: I will answer your question, we would like to recommend a Supported Decision-Making Bill so it starts in the right place. It would be based on rights and the following rights would be: to make our own decisions, the support to make decisions, to communication support, to make mistakes, the right to advocacy, to make decisions without pursuing incapacity, to change our mind, to have a personal sense of money, to access supportive decision-making panels—

  Mr Downs: I will talk about that later

  Ms Aspis: —access to information, to explore decisions, which is what Jean Collins was talking about, the resources to make it happen, the right to say no, the right to complain and appeal and to know that bad practice can and will be penalised, to have decisions affirmed and the right to be respected for your self-interest.

  Mr Downs: What is interesting about this is that Simone and I met yesterday with each other yesterday at 3 o'clock and by 8 o'clock we came up with this solution to this problem. I have a problem with the process because I do not believe enough disabled people and disabled people's organisations have been involved in the consultative forum. There is some difficulty because again the people who were typically assuming the general authority are the people who make the decisions for us, when we actually want to make them ourselves, and have been involved in the process. Having looked at the Bill from a position of rights we recognise the fact that we have to have a process that enables those rights to happen.

  Ms Aspis: The way we would keep this in would be to first of all say that out of necessity a person can act on behalf of another, as they do at the moment within the common law and then the process will be kicked in as soon as there is any doubt about whether somebody can make a decision, as soon as somebody feels that a decision needs to be made on behalf of somebody else that is not necessary because this process will be kicked in.

  Mr Downs: We are talking about a decision-making Bill which is for a supported decision-making power to be set up which when capacity is in doubt and it will act from a code of practice to be agreed as acceptable to disabled people. The panel shall have the power to provide guidance to the people involved. The panel would have the power to review any decision which is made in the name of best interest and it would have the power to call for an independent complaints panel and an appeal. It would have an obligation to create a stir if it registered something like a court of protection, and I acknowledge a court of protection has often failed disabled people. It would have the power to initiate a decision-making assessment of the recommendations from which it must be implemented. Again we say that advisedly inasmuch as local authorities are not recording the feelings of disabled people. It would have a responsibility to ensure that our rights based framework is observed. The person who would make a best interest decision would also be able to seek a second ruling from the court if people's opinions are in conflict. The reason we are proposing to have a Bill like this and a process like this is because basically common law has failed to protect the interests of disabled people.

  Q656  Lord Rix: How would you protect the people with a learning disability, who had profound and multiple disability, because going through a bureaucratic process would be virtually impossible at any sort of speed? How do you deal with that?

  Ms Aspis: We basically see this as a similar model where a court rules when a young offender gets convicted there is the first time offenders panel and they will meet regularly with that person to help them and this would be the same order for disabled people who need support making decisions. The benefit would be that in an on-going process where they would be reviewed, people would be involved or a programme would be set up, so it would not be like the court deciding this person is incapable somebody else has to make that decision, it is usually one person makes that decision under general authority. This will give more safeguards towards people who have profound learning disability because there would be more people acting in their interest than one person.

  Mr Lee: In relation to your question, the Bill could give a right to communication aids that people need with enough funding to do this properly. Paid carers and relatives should have proper training and support from communication experts so they are able to deal with the communication needs of people who find it hard to speak up. People who have communication difficulties and whose ability to make their own choices is being questioned should have an independent citizen advocate.

  Chairman: You are answering quite a number of the questions we were going to ask you, we are doing very well on the framework of questions.

  Q657  Mrs Browning: I want to put to you scenario, if I may, I listened very carefully to what most of you have said. In terms of the parent I am must declare an interest, I am a parent and whether I am dealing with issues to do with my son who does have a learning disability or my other son does not we very often disagree quite vigorously on all sorts of matters, and I think that is life and that is always going to continue. I fully understand why you are making the case for your own independence free of what in your verbal and your written evidence you describe as "parents have a view". In one piece of evidence you say they might take a decision because of the financial implications for the person, I fully understand that. There is a worry for parents, and it is this, parents also feel they have a responsibility and it is a lifelong responsibility and sometimes third parties make decisions also based not on their knowledge of that individual but on the resources that are available to someone. It has been put to us in this Committee some of things you are advocating and some of the things that other witnesses have advocated to be incorporated into the Bill, I am not saying that is a the bad thing, I think that is a good thing but there would need to be a huge amount of resource behind this Bill for it to work because if they were there we would go back to the old business, a situation I find very unsatisfactory, that, for example, social workers are employed by the very people who provide the service and I do not believe they can represent you as the advocate. What do you do, and this is my question, Chairman, about the parents who are themselves very elderly still caring at home for the adult with the learning disability where that adult with the learning disability flatly refuses to become involved in any form of independent living because those parents as they get older know they are going to become frail, die within a matter of a few years and yet unless things are put in place during their lifetime for the person, the adult with the learning disability, it then becomes a decision taken in a crisis. This happens all too often and any decision taken in a crisis does not usually offer choice and does not usually offer appropriate provision. Where do we get the balance between parents who are trying to provide during their lifetime for adults and the needs you expressed very articulately today for your own independence, where do we strike the balance in the Bill?

  Mr MacGiven: I am not complaining but if the person with the learning difficulty is living with an elderly person and if that person wants to live independently the elderly person would say, "you cannot do that because I will not get my pension otherwise".

  Q658  Mrs Browning: I will agree they do sometimes but equally there are adult-dependent children still living at home with very elderly parents who out of fear or even a lack of resources themselves would be very afraid of making that big step, and it a big step, from the security of the parental home to independent living. I think that is quite a worry and problem for parents who can see that if it is not done in their lifetime it will be done under circumstances that will not necessary be in that child's interest.

  Ms Aspis: Which is the reason why we would like to see a Supported Decision-Making Bill, where that decision-making starts from a much younger age than 16 and therefore you start that process of helping people to make decisions. This whole idea about resources seems to me to be about the priority of how we spend our money. If we are really committed to the fundamental rights of all humans beings to live with dignity then we must resource it. We do have the money out there in other governments departments that could be more usefully spent in doing things in terms of people making those decisions and to experience different ways of living and then it does not get to crisis point when a decision has to be made and where the person with learning difficulties is unable to make the choice.

  Mr Lee: The thing is when people with learning difficulties are actually born the first thing many parents are actually told is your son or your daughter will never walk, never talk, they will be a complete cabbage for the rest of their life and the best thing to do is stick them in an institution, which is what my parents were told. The thing is that doctors and nurses and the medical profession generally start from the point of actually telling parents that their son or daughter will not be able to do things, which is completely wrong. The medical profession are using their strength to actually dash the hopes of parents at the very beginning and their aspirations are dashed and that is because doctors and the medical profession generally are not educated in the social model. I think that is something that Parliament could do as far as educating our medical profession so that they start from the position that a person with learning difficulties will be able to achieve things rather than the position of they will not be able to. If parents are actually given the confidence and are told that they will be able to do things and the information is accessible and it is there right at the very beginning, where they sit down with someone and they say "this is available, this is available and this is available and this is how you go about doing it" then their confidence will be boasted and their attitudes towards disability will be positive rather than negative and the person with learning difficulties for the rest of their life are fighting their parents and society generally. There needs to be a massive education programme and you need to put people with learning difficulties at the heart of it. All forms of advocacy needs to be at the heart of government policy if we are going to change decades of the way which society perceives disability, which is completely wrong. We are fighting against so many things and there is so much this Parliament can actually do about it.

  Q659  Chairman: Okay. Would you agree that applies with all forms of disability.

  Mr Lee: I agree with that but people with learning difficulties also have difficulties within the disability movement. If you take Mr and Mrs General Public when you talk about disability they think deaf, visual impairment, a wheelchair, not learning disability because learning disability is invisible unless you have Down's syndrome and that is actually wrong. If you have a strong point of view and you happen to have a learning difficulty then there is a kind of bracket that society tries to put you in and try to reduce you, your view is actually worth less than a person who does not have a disability.

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