Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

33.Memorandum from People First (MIB 778)

  Dear members of the Draft Mental Incapacity Bill Scrutiny Committee.

  Here are People First's views on the draft Mental Incapacity Bill.

  People First is a national umbrella organisation for over 100 self-advocacy groups of people with learning difficulties.

  People First members think the Government's ideas in the draft Mental Incapacity Bill will mean that people with learning difficulties will be bossed about and controlled even more than we are already. (There is a list of things People First members have said about control in their lives at the end of this letter)

  We think this law is more about people making choices for us, than about our rights to make choices for ourselves.

  The Government says that it wants a new mental incapacity law to make sure people are allowed to make their own choices, but we think the main reason for bringing out the new law is because of pressure from parents, and carers, organisations and from service providers, so that carers and paid staff will be legally covered if they make choices for someone with learning difficulties.

  The Mental Incapacity Bill could result in people without learning difficulties over-controlling people with learning difficulties.

  The decisions should be made by us it is important that we don't go back to the old days where disabled people were not allowed to live independently.

  People First do not like this Bill because it will take away our independence and break our human rights it will also go against the Government white paper, Valuing People.

  People will be able to read between the lines and pick bits out of the new law to boss us about.

  The Government's proposal to give a "general authority" to anybody to make decisions for someone who they think is unable to make their own decisions is especially worrying. This will mean that anybody will be able to legally interfere with a person with learning difficulties' life as long as they think what they are doing is the best thing for the person with learning difficulties.

  We think it is very dangerous to give a right to people to make choices for another person on the basis that they "believe" the person is incapable of making their own choices.

  How are people going to make a decision on who can and cannot make decisions? Where do you draw the line? Someone may say yes I can make my own decisions and another may say no I cannot make my own decisions.

  Lots of People First members have relatives or paid carers who always assume that we cannot make choices for ourselves just because we have learning difficulties.

  Relatives and paid carers often think that we are not able to do things that we can do, or could do, given the right support. They often overprotect us and will not let us do anything that they think is at all risky.

  There is no guarantee that everyone will just help people the way they are supposed to, because some people only see us as children, not what we can do and how we can do things for ourselves, they will only say no you cannot do that because they only like to be seen to have the power over us, which is wrong.

  Also, people have the right to make "bad" decisions. This Bill would mean workers and carers having too much power, this is wrong.

  People without learning difficulties often do not let us make choices for ourselves, because they cannot be bothered to spend the time and effort to help us make a choice for ourselves. People need time to make decisions. The draft Mental Incapacity Bill says nothing about how the Government will make sure that we are given enough time to make choices for ourselves.

  The Mental Incapacity Bill says lots about how you should help someone make their own choices. It also says lots about how to make a decision for someone which is in their best interests, but this is no good because there is no way of checking that somebody has really tried to help someone make a decision for themselves, or that a decision has really been made in someone's best interests.

  The draft Bill says nothing about how the government will make sure that people are really supported to make choices for themselves.

  Our relatives and paid carers and other people often say we cannot make a choice ourselves because they don't like the choice we want to make for ourselves.

  Don't you think it's wrong for any person to make a decision, like for example a next door neighbour does not like people with learning difficulties, so the neighbour says that she or he doesn't think that she or he can live independently and make their own choice if they want to go shopping or pay their own rent.

  Relatives and paid carers often stop us from making our own choice because they want us to make a choice which is best for them, rather than what we want. Many People First members have had people like relatives, carers and social workers who have made decisions for them which have been best for the relative, carer or social worker, not for them.

  The draft Bill says nothing about how the Government will make sure that choices are being made for people with learning difficulties that are best for them rather than best for their relatives or carers. The Government is putting too much faith in our carers, relatives and other people without learning difficulties to make decisions for us that are really in our best interests.

  There are often conflicts of interest between us and our relatives and care workers, the draft Mental Incapacity Bill does not take proper account of this.

  An example of this is where a person with learning difficulties wants to move out of their parents' home into their own flat. The parents say that their daughter or son is unable to make this decision, but their real reason for not allowing their son or access to their son's or daughter's social security benefits, or lose the extra pension they will get if their son or daughter is still living with them when they reach retirement age.

  Another example is where a person says that they want to get direct payments to organise their own care, instead of living in a residential home or going to a day centre. The staff in services like this may say that someone is not able to make this choice, but the real reason they are saying that someone is incapable of making this choice, is because the staff working in the service are worried about losing funding attached to the person and therefore, the possibility of losing their jobs.

  We think it is very bad that people who are bossing us about to suit themselves will be able to say "we thought it was the best thing for them", to defend their actions if they are challenged. It is to easy to just say "I thought they were unable to make the choice and I did what I thought was best for them"; there is no way of disproving this.

  Another very big problem with the Mental Incapacity Bill is there is no way for people with learning difficulties to challenge decisions that have been made for them.

  People First asked Rosie Winterton MP, (who was the Minister responsible for the Mental Incapacity Bill before Lord Filkin), how somebody will be able to complain if they are being stopped from making choices which they think they should be allowed to make. The Minister's answer was "we just don't know."

  People First thinks that it is really bad to give a right to people without learning difficulties to make choices for us, without giving us a way to complain if we disagree with choices being made for us.

  The draft Bill says nothing about easy ways for people to complain if they disagree with choices that are being made for them, or if they disagree that they are incapable of making their own decision(s).

  It will be very, very hard for people to complain to the Court of Protection, especially if they have no independent support, like an advocate, to do this.

  It will be very hard for people who have communication difficulties to complain and these people are even more likely to be labelled as incapable of making their own decision(s). If workers, carers etc, don't communicate in ways the person needs, they are likely to say the person can't decide for themselves.

  People who have labels like "profound learning difficulties" are the people who are most likely to be labelled as not able to make their own decision(s), but it is these people who are usually most isolated and have no one to support them if they want to challenge decisions that are being made for them.

  The draft Bill does not give people who are having choices made for them a right to an independent advocate. If the government were really serious about making sure people who find it hard to make choices were in control of their lives, they would be making a law giving us a right to independent advocacy.

  If the draft Mental Incapacity Bill becomes law it will be a very big step backwards for people with learning difficulties' rights.


  Here are some things People First members have said about paid carers and relatives controlling their lives. These stories show that giving more power to our relatives and paid carers to make decisions for us is a very bad idea which would lead to our lives being controlled even more.

    "We have no access to our money, we are treated like children and patronised by staff."

    "I have to go to bed at nine o'clock, get up at seven o'clock and have a bath straight away, just because the staff say so, not because I want to."

    "I was not allowed to make a cup of tea myself at my family placement. People First helped me make a complaint. Now I can make a cup of tea when I want to."

    "I do a lot of volunteer work for People First which means I travel all over the country, I have to keep my trips around the country secret from my Mum, I am sure she will try to stop me if she finds out."

    "Julie and I planned to get married, the staff at Julie's group home stopped us from seeing each other and have sent Julie's engagement ring back to me."

    "I was told for years by my residential home staff that I was being stupid to think I could live more independently. Now I live in my own flat and have got married."

    "I am not allowed to take my own medicine; the staff say I can't manage it, even though I coped with it well in other group homes I have lived in."

    "I was told I must tidy up my room when the staff tell me to, otherwise I will be sent back to the long stay hospital."

    "My fiancé and I have been told that she can only stay at my group home on one day each weekend because of insurance requirements."

    "The group home where my partner lives will not allow couples to sleep in the same room if they are not engaged or married."

    "I have a problem with my parents and he always shouts at me, he always drinks too much at home and I get upset. I would get a flat of my own but my parents say I can't get my own flat."

    "I don't like people interfering with my choices, I would like to do what I want when I want. I don't want to be ignored because I can't hear very well. Staff have stopped me from washing up. I wish I had more choices than watching the television at home. I would like to live on my own with a carer."

    "My carer is trying to stop me getting my own house; if it wasn't for help from my advocate I would not be moving."

    "I want to look after my own money."

    "I don't like being told what to do. I don't like being told when to change my trousers or to go to bed."

    "I want to work but staff in my home stop me."

    "I am stopped from going out by my Mum, I would like a place of my own because sometimes I am treated like a child. I wish I could do things myself."

    "Staff at the adult training centre treated us like children; they tried to stop me and my girlfriend seeing each other before she became my wife. We are married now."

    "I couldn't do what I wanted to do when I lived at home. I had to be in bed by 10 o'clock. I had to be up by six o'clock to be at the centre. I didn't have control of my money at all. When I asked for money I only got £5. If I spent it she got mad."

    "My daycentre staff will not let me go to my local People First office and try to stop me going to conferences and other events."

    "My Mum and Dad shouted at me and my father even said he would murder me."

    "I live with my father, we are both deaf, he drinks too much, he bosses me about and he has hit me."

    "My Mum stopped me from seeing my girlfriend, I was so upset, I really loved her but my parents kept stopping us. When she told me I could not see my girlfriend again I went mad and went to my bedroom and slammed the door, I wanted to ring my girlfriend but my Mum wouldn't let me, I know my girlfriend phoned and asked to speak to me, but my Mum told her no."

    "My community nurse tried to stop me going out to see my Mum, she made up a story to back her decision but it was false, she lied, she was sacked for it."

    "Before I went to People First I wouldn't speak up for myself, now I can speak up and I control my life. Now I am getting my own flat, I will be able to make more decisions for myself."

    "My Mum said I can't have a boyfriend."

    "I have to go to the daycentre because my Mum says otherwise I will lose my place."

August 2003

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