Joint Committee on the Draft Mental Incapacity Bill Written Evidence


84.Further memorandum from the British Institute of Learning Disabilities (BILD) (MIB 782)

  1.  BILD welcomes the draft Mental Incapacity Bill. Many people with a learning disability find it difficult to make decisions which involve weighing up the pros and cons of different options. However, most of them can take an active role in decision-making if they are given the right help. It is important that people who need help to make good decisions have their rights and interests protected in law.

  2.  BILD strongly supports the introduction of a functional approach to decision-making and recognition of the fact that a person's ability to make a decision may fluctuate over time and that he or she may need relatively little help to make some decisions, but a great deal of help to make others.

  3.  BILD is does believe that the concept of "capacity" will work in the best interests of people with a learning disability. Furthermore, "capacity" is inconsistent with a functional approach to decision-making. The functional approach would recognise that everyone (whether or not they have a learning disability) seeks information and advice from others before making an important decision. In general the more important the decision, the more extensive and formal will be the process of seeking information and advice. People with a learning disability need more help than those who do not have a learning disability. The greater the severity of the learning disability the more help someone will need. In our view, a law which instantiates the concept of "incapacity" as an arbitrary cut off point is likely to reduce participation in decision-making for those who are most disabled. The main defence for the use of "incapacity" is to afford protection to vulnerable people. In our view the arrangements for the assumption of general authority to act by carers will not achieve this (see below).

  4.  Clause 2 of the Bill sets the criteria for decision-making capacity. However, application of the criteria involves the use of "all practicable steps to help him" (make a decision). In our view the explanatory notes are extremely superficial. We hope that the Code of Practice will provide a very much more detailed account of what "all practicable steps" might mean. When the Code of Practice is drafted we recommend that both BILD and the Royal College of Speech and Language Therapists are consulted. We recommend that those providing support for decision-making are encouraged to record the different ways in which a person has been assisted in the decision-making process and the outcome in terms of their response. This applies equally to people who are deemed to have capacity to make a decision as much as to those who are deemed not to have capacity. The method of recording might be notes on paper, photographs, a video or an audio tape.

  The Code of Practice will need to recognise that over time new approaches to supporting choices will be developed. What is acceptable as "all practicable steps" in 2003 or 2004 will probably not be acceptable in 2013 or 2014.

  5.  Clause 4 requires states that any decision made on behalf of a person who lacks capacity must be in the person's best interests. BILD welcomes the emphasis on involving the person as far as possible. We recommend that the Code of Practice provides detailed guidance on how a person with a severe learning disability can be involved in decision-making. BILD has already published advice on this topic1 and we hope that the Code of Practice will build on this work. We also recommend that the Code of Practice suggests ways in which the person's participation in the decision-making process can be fully documented.

  6.  Clause 6 sets out the general authority under which another person may make decisions on behalf of a person who lacks capacity. BILD welcomes this as an improvement on current practice where no one is legally empowered to make decisions on behalf of a person who lacks capacity.

  However, we would draw attention to serious weaknesses in this part of the Bill:

    (a)  First, it appears to us that a person who has general authority is also likely to be the person responsible for determining that a P lacks capacity. Anyone who needs help to make decisions is unlikely to resist or contest the views of a carer who deems them to be lacking capacity. If the person with general authority fails to offer opportunities for P to engage in decision-making, his or her judgement (about P's lack of capacity) will become a self fulfilling prophecy. This will not be in P's best interest.

    (b)  Second, the guidance notes make it clear that no one person will be the holder of general authority. The examples given suggest that each person with general authority will act in isolation. In practice it is likely that different people, each of whom might assume that they hold general authority, will be involved in making (or helping P to make) decisions. In many situations this will contribute to the quality of the decisions being made. But what if different people with general authority disagree? For example, family carers may hold different views from the family doctor. BILD recommends that the Code of Practice includes advice on how different interpretations of "best interest" among those with general authority should be reconciled.

  7.  Clause 7 describes restrictions on the general authority. 7.1(b) states that a person with general authority may restrict liberty or movement if he/she believes that it is necessary to avert substantial risk or significant harm to P. BILD recommends that the Code of Practice draws attention to related guidance issued by the Department of Health and the Department for Education and Skills on the Use of Restrictive Physical Interventions 2. It should also clarify whether the provisions of healthcare, including dental examinations and treatment, is included within the meaning of 71(b).

  8.  BILD welcomes the fundamental changes signalled in this Bill. However, if the proposed changes are to make an impact on the lives of vulnerable people who need skilled and patient support in order to participate in decision-making, it is important that legislation is followed by an extensive and intensive programme of education and training. BILD recommends that when this Bill becomes law, the Court of Protection and the Public Guardian's Office are provided with funding to organise (or commission) an educational programme to raise awareness and provide practical training for all those who may be required to act with general authority under the Act.

REFERENCES

  1.  Grove, N (2000) See What I Mean: Guidelines to Aid Understanding of Communication by People with Severe and Profound Learning Disabilities. Kidderminster: BILD.

  2.  Department of Health and Department of Education and Skills (2002) Guidance for Restrictive Physical Interventions: How to Provide Safe Services for People with Learning Disabilities and Autistic Spectrum Disorder. London: Department of Health.

August 2003





 
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