Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence


35.Supplementary memorandum from People First (MIB 1224)

GENERAL QUESTIONS

1.   What don't you like about the bill?

  The General Authority to act is open to abuse.

  Paid carers and relatives could say that we can't make a choice, because it is what is best for them rather than best for the person 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 our human rights, for instance right to freedom, right to family life, right to privacy.

  Our members have told us about their relatives and paid carers bossing them about, this shows that it is unwise to put 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. Also if it is a relative or neighbour stopping you from making a choice, there is no complaints procedure.

2.   What do you think is good about the draft bill?

  It is good that it says we should be supported to make our own decisions. But on a day-to-day basis in the places where people with learning difficulties live and spend their time, how do you make sure that relatives and paid carers keep to that?

HELPING PEOPLE TO MAKE CHOICES

3.   Can you think of any ways the Draft Bill could make sure that people are really supported to make choices for themselves?

  The bill should give a right to independent advocacy whenever some-ones ability to make their own decisions is questioned.

  People with learning difficulties going into places where other people with learning difficulties live or spend their time to ask them if they are allowed to make their own choices. Service users with learning difficulties are more likely to feel comfortable about speaking up to another person with learning difficulties.

  Training and information for people with learning difficulties by people with learning difficulties, about their rights to make their own decisions and what to do if people stop them making their own decisions.

  A right to non-means tested legal aid to help people to go to court if they are being stopped from making a choice.

4.   How do you think more about Person Centred Planning should be included in the bill?

  The bill should say that people who are supporting people to make their own choices should use Person Centred Planning to find out what people with learning difficulties want when they need to make a choice.

5.   Can you think of any ways the Draft Bill could make sure that people with communication difficulties are supported to tell people what their choices are?

  The bill could give a right to the 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, whose ability to make their own choices is being questioned, should have an independent citizen advocate.

6.   What would you like the draft bill to say about people's right to help from an advocate?

  As we said earlier, the bill should give a right to independent advocacy whenever some-ones ability to make their own decisions is questioned.

THE NEW "GENERAL AUTHORITY"

7.   If the Draft Bill became law, can you tell us about any problems you think might happen because of the general authority?

  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 tell 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 service providers because the service provider has not paid for enough staff to provide support for the person to go out.

  The "General 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 the general authority to control people with learning difficulties to suit themselves. If challenged, they can just say that they thought the person with learning difficulties could not make their own choice and get away with it.

  Another problem will be that people will say that it was reasonable for them to think that someone cannot make a choice just because someone has learning difficulties.

8.   Do you think the `General Authority' should stay in the Draft Bill?

  NO!

9.   If you don't think so, is there a different way to make relatives and carers understand what they can and cannot do when making choices for other people?

  The bill could say that people must support people to make their own choices using guidance like Person Centred Planning and the supported decision making guidelines done by Values Into Action.

  The bill could say that relatives, paid carers and other people have a duty to involve an independent citizen advocate if a person with learning difficulties is finding it hard to make a choice.

10.   If the `General Authority stays in the Draft Bill how might it be made better?

  We think the general authority is unworkable and dangerous no matter how many safeguards you put in, because some people will always do their best to get around the safeguards.

11.   Do you think the Draft Bill will make sure that the choices made for people with learning difficulties are really in their best interests?

  There should be a monitoring system to make sure that decisions being made by a court appointed manager are really in someone's best interests and that they are only making decisions for the person that they are allowed to make by the court.

  The government would need to check the monitoring system is working properly.

  If a Court Appointed Manager makes decisions that they shouldn't, they should be replaced.

  The likelihood of conflicts of interest should be highlighted. (Bone Marrow donation example)

  Having access to an independent citizen advocate and non-means tested legal aid is essential.

  If there is a dispute between the independent citizen advocate and the court appointed manager there needs to be an arbitration service as well as the option of going to the Court of Protection for a decision.

COMPLAINING ABOUT CHOICES THAT SOMEONE MAKES FOR A PERSON

12.   Can you tell us about any times when your members have successfully complained about choices that someone else has made for them? How did they do this?

  We know of lots of examples where People First members have tried to complain but have not been successful, the complaints systems don't work well for people with learning difficulties. (Nico's example)

13.   Can you think of any ways the Draft Bill could make it easier for people to complain if they are being stopped from making choices, which they think they should be allowed to make?

  Mandatory right to an independent citizen advocate with proper funding so there are enough advocacy services.

  Access to non-means tested legal aid. (Training for solicitors by people with learning difficulties.)

  Information campaign for people with learning difficulties about how to complain including training sessions by people with learning difficulties.

14.   Do you think that people with learning difficulties should help to train the judges and staff who will work at the new Court of Protection? What sort of training will they need?

  Yes!

  Training would need to cover:

    —  Judges having links self-advocacy groups

    —  Working in an accessible way.

    —  Realities of life for people with learning difficulties about being controlled and bossed about.

    —  The power imbalance between people with learning difficulties and their relatives, paid carers and other people.

    —  The conflicts of interest that often occur between people with learning difficulties and paid carers, relatives.

    —  How important it is to listen to the evidence of independent people like citizen advocates, stress that advocates cannot be relatives or paid carers.

    —  Some people with learning difficulties have learnt to be helpless and dependent because they have not been allowed to do things for themselves.

    —  Using intermediaries.


 
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