Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

32.Memorandum from Changing Perspectives (MIB 71)


  This Bill should start from the position that a person can make decisions and that appropriate support is in place. There must be recognition that some people can't make decisions if their communication needs aren't met, whether through provision of interpreters, communication facilitation or appropriate equipment or their behaviour/gestures have not been correctly interpreted alongside inaccessible information. There is nothing in the bill which will make it law for such support to be provided so that the person without perceived capacity can be involved in the decision making process.

  Additionally, there is no provision of advocacy. This is an obvious gap in this proposed legislation and the Disabled Peoples and Representation Act 1986. It is critical that any proposed legislation must include such proposals as one person says:

    "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."

  Without such proposals many people may be WRONGLY perceived to be without capacity, when in fact they need support on how to participate in the decision-making process.

  The Mental Incapacity Bill assumes that anyone making decisions on behalf of people without perceived capacity is always acting in their best interests. There is no acknowledgement of any conflict of interest, which may rise in any decision, both "significant" and "insignificant". Some examples where the bill may allow others to make decisions on behalf of people without perceived capacity where conflict of interests will arise WITHOUT FAIL.

  John and Lesley were living in separate group homes. Both of them were married and wanted to live together as a couple in their own home with support of Direct Payments. The staff in the group homes were against the idea and made this clear at John's care planning review meeting.

  The conflict of interest arises where the staff are only being paid whilst residents live in the home. It is not in the staffs' interests if residents want to live on their own.

  Another example will be where persons without perceived capacity are living at home.

    "I did not have control over my money at all. When I asked for money I only got £5. If I spent it she got mad."

  This is another example where there will be conflict of interest. In this case, parents may rely on the financial income from their daughter or son with learning difficulties and therefore be unwilling to give money to him or her.

  We have concerns that the Mental Incappacity Bill will violate the fundamental rights of people without perceived capacity. Under Article 6, the claimant must have a right to an effective remedy where his/her European Convention Of Human Rights (ECHR) have been violated. The proposed Bill GIVES NO EFFECTIVE Remedy if a person without perceived capacity believes his/her fundamental rights (ECHR) have been violated. In this case Articles 6, 8, 10, 14 (the right to a fair trail, right to privacy and family life, freedom of association and assembly and not to be discriminated against on the grounds of disability.

  Such cases where people without perceived capacity rights will be violated:

  This Bill will affect the rights of people without perceived capacity, in this case disabled people labelled with learning difficulties.

    "I don't like people (staff) interfering with my choices. I would like to go where I want when I want . . . Staff have stopped me from washing up." (ECHR article 8 violation.)

    "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 both group homes I have lived in." (ECHR article 8.)

    "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." (ECHR article 8 violation.)

    "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," (ECHR article 10 violation).

  If the Mental Incapacity Bill becomes law Disabled People with learning difficulties like these would have no RIGHT to appeal where a declaration that their rights have been violated. Furthermore, the person with learning difficulties will not be able to seek an injunction against the decision makers.

  It is very clear that the Human Rights Act covers the actions and decision-making processes of statutory bodies. This also includes service provision. Such landmark cases include X, Y and Z where it was ruled that the manual handling procedures of carers/personal assistants services must respect disabled care receipt ants with learning difficulties fundamental human rights (Articles 3 and 8). The Human Rights Act is limited to STATUTORY Bodies decisions which may include their directly contracted services. The Human Rights Act is likely to fail when non statutory bodies or persons employed by them make decisions on behalf of persons without perceived capacity. Many people with learning difficulties are stopped from making and implementing their own decisions by their parents and carers who would not be covered by the Human Rights Act.

    "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."

    "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, and I wish I could do things myself."

  When such decisions are made on behalf of persons with learning difficulties there will be no redress even under the Human Rights Act. Such redress will need to be incorporated in any proposed Bill.

  The Government says there is sufficient checks and balances to ensure that only the right people can make decisions on behalf of someone without perceived capacity. From our understanding a person can make decisions on behalf of another if she or he "reasonably" believes that a person lacks capacity to make a particular decision. The problem with this is that it allows anyone to consider another can't make decisions based on the stereotypical assumptions about what people with learning difficulties can do as People First say.

    "People without learning difficulties often only think about what they think we can't do, rather than what we can do, or could learn to do."

  The Government says that some decisions should be made by the courts. Here, the Bill have not specified which decisions should or should not be made by the courts. As a consequence it will be left up to the "integrity" of the decision maker to invite the courts to make a ruling. We would assume that most decision makers wouldn't refer the matter to the courts. As with now, the courts are involved with financial and healthcare matters for people without perceived capacity where one would expect legal safeguards to be in place. However, it is unclear whether such legal safeguards will remain.

  Where a person is unable to make a decision for whatever reason legal safeguards must be in place to ensure ALL decisions are made in the best interests of the person with perceived incapacity. Anyone making decisions must be registered. Independent advocates must also be involved.

  We think having a lasting power of attorney is a good idea where people who are unable to make decisions can choose people who they can trust to make decisions for them. This could be extended to selecting particular persons to make specific decisions.

  To conclude we would like to see a Bill titled "Supported Decision Making" where the focus will be on how people can be supported to make their decisions. Where decisions cannot be made by a person a tough legal framework is in place to ensure conflict of interests of decision makers is kept to a minimum.

  Changing Perspectives providing training and consultancy on disability rights issues. Simone Aspis (director) and disability rights activist was the former People First Parliamentary and Campaigns Worker. Additionally, Simone has been very active in campaigns to safeguards the rights of disabled people who are perceived to be without capacity.

  Alongside People First, we would be interested in submitting oral evidence. It is important that the committee hears the voices from many disabled people with learning difficulties. The Committee needs to find a balance of hearing non disabled people's organisations that claim to represent people with learning difficulties and self-advocacy groups run by disabled people with learning difficulties.

August 2003

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