Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

40.Supplementary memorandum from RESCARE (MIB 1217)

  The Committee asked our witnesses at the 21 October session to submit further comments in writing. Assessment of capacity and best interests were named by the Chairman and a response to the questions which time did not allow. We thank the Committee for the opportunity to be questioned and for the courtesy and understanding afforded our delegation comprising of Dr Maurice Brook, Mr David Sugden and Mrs Mary Pearson. We further comment as follows:

Assessment of Capacity: The Draft Bill needs to say no more about assessment of capacity procedure as changes in technology, knowledge and experience make this particularly appropriate for guidelines in a Code of Practice.

In most day-to-day situations a person in a caring role must necessarily make assumptions about capacity. The more knowledge they have of the individual in different situations the more reliable will be their assessment in relation to any particular decision. Before waivering an apparent decision signalled by a handicapped person the person providing care must believe that the `incapacitated' individual has failed to consider obvious risks and possible adverse consequences and cannot be helped to overcome their own lack of understanding. The incentive of offering an alternative course of action that satisfies is a diversionary technique acquired by many parents through experience in day to day management.

RESCARE is concerned with people whose IQ is below that of over 98 per cent of the general population. It has especial concern for the many, ie. tens of thousands who mentally remain infants and young children. Although IQ alone is not always an adequate predictor of capacity it has an important bearing on it, particularly on capacity to assess and understand the consequences of decisions.

Some vulnerable individuals will appear to agree with suggestions made by someone they see as in authority, or someone they want to please. They say convincingly whatever they believe their particular interrogator wants to hear. RESCARE frequently encounters situations where social workers have taken a handicapped individual aside, emerging later with the claim that the individual wants to do this or that: for example to live where the authorities happen to have a vacancy they want to fill. Even, sometimes, RESCARE has met claims that the handicapped person has decided that they want nothing more to do with their family, after many years of apparently harmonious and loving relationships.

We should record the fact that many of those for whom we have concern never have and never will exercise the fundamental right of a citizen to vote in an election. They can be on the electoral register, but it will be obvious to the polling clerk that they have no understanding or awareness of the process and therefore may not be allowed to proceed. This is an example of a lay person necessarily assessing mental capacity. In practice, of course, they are not taken to vote.

Pragmatically, we think that elaborate, inadequately tested procedures of assessing capacity must be eschewed except perhaps when there is serious disagreement about an individual that affects important decisions. In reality, carers will rely largely on commonsense, tempered by experience and training. For `life-important decisions' appointed Deputies will have an authority related to an earlier assessment of capacity.

`Best Interests': The term `Best Interests' covers all contingencies while `Maintaining Independence' is related to the extent of disability and multiplicity of needs to be met. We are concerned with the thousands of individuals who are already highly dependent.

Assistance to help the individual to make an informed decision, where practicable, is important. This process could require expert effort, detailed knowledge of the person and take time.

Some life-important decisions, such as where to live, health, medical and dental requirements, are particularly critical. `Best interests' long-term may not be perceived by the individual (or some others) as in their best interests short-term. A practical example is that of an elderly mother who has cared at home for a severely handicapped daughter, herself now in her 50's. Mother, advised by her doctor that her health is failing, finds a residential home which she thinks would be congenial for her daughter and offer life-long security.

Daughter enjoys several visits and an overnight stay but clearly has no appreciation of what it will mean to leave her mother, except for visits. Daughter is moved and not surprisingly is bewildered and miserable at first. In time, fortunately, she becomes noticeably happier although sad and tearful when each visit home comes to an end.

Decisions about medical and dental treatment can be especially tricky when the handicapped person vigorously signals objection to a procedure that is necessary in their `best interests' even though it may not be to deal with an immediate, life threatening situation.

This term seems to us to be sufficiently widely used generally, and, in English law and medical practice for it to be undesirable to create inconsistency by modifying the term or substituting another, such as `personal benefit'. Of course, a Code of Practice will be necessary to provide guidance on what is important in determining someone's best interests. We hope and expect to be directly involved in the drafting of Codes of Practice in respect of those for whom we are most concerned and with whom we have direct experience, bearing in mind that over 70% of them live within their own families.

We would like to add other comments that may be helpful to the Committee including response to questions not considered.

Appointment of Deputies: We welcome this opportunity in the Bill with the intention that there could be joint deputies; two parents, one parent and a sibling, two siblings etc. We are sure that many families will want to become deputies as a means of establishing their legal rights and responsibilities as substitute decision makers for those of their relatives who clearly lack decision making capacity in relation to important aspects of their lives; where to live for example, or what medical and dental treatment to have. At present, the Bill takes inadequate account of the views of the Law Commission. They envisaged that `Managers' (now `Deputies') would normally be a family member. For those incapacitated from birth, whose mental age remains that of a young child, our members feel strongly that their role must be recognised in law by endorsing the desirability of them becoming deputies to act when appropriate as substitute decision makers. This could be done in a Code of Practice.

In connection with deputies, our witnesses strongly disagreed with the committee member who expressed the opinion that, eventually the `professional's' would make the final decision. It is to avoid precisely this that RESCARE has been lobbying for legislation for some 15 years. In brief, the professionals should be advisors and persuaders. Decisions should be made by the individual, when they have adequate capacity, or by an identifiable substitute ie—a Deputy. If there is a real concern among the professionals/authorities, or indeed within a family, that the wrong decision is being made then recourse to the advisory or other more legal services of the reconstituted Court of Protection will be available.

Extended Minority: The concept of Extended Minority arose in the late 1970's, from a working party of The Law Society. In essence, regard is given to mental age. Those of much reduced mental age would continue to be treated as minors, with parental rights and responsibilities being continued with ongoing protection beyond the chronological age of majority. This simple concept appeals to some of our members, especially if their relative is profoundly handicapped. The opportunity offered by the Bill to occupy the role of deputy is a satisfactory and more flexible way of dealing with the problem for parents and relatives. However, regard to damaged intelligence and substantially reduced mental age should be incorporated in a Code of Practice, giving guidance about decision making.

Advocacy: We assume that he Committee will not seriously entertain the suggestion made by other witnesses earlier on the 21, that parents/relatives should not be advocates. This is precisely the role most of them have fulfilled for years. Any attempt to exclude them will cause much disruption and will fail.

Taking account of `the expertise' of the caring family: We recognise that many adults with mental illness and mentally incapacitated elderly people wish to avoid family involvement. However for those with life-long incapacity, committed family members are the only people who maintain a concern for their welfare throughout life and who thereby acquire a unique longitudinal knowledge of their needs, preferences etc. Moreover, they are invariably called upon by the statutory authorities to sort out difficulties or provide support: for example if their relative is admitted to hospital for treatment. This happens even when the statutory authorities have previously kept the family members at arm's length.

Scale of Costs: This will presumably include the Bill and any Code of Practice Guidance. The voluntary sector could well play an important role and we expect those charities, such as ours, in direct contact with their members to disseminate information as a welfare service at modest or no charge to public funds.

Do we like the Bill: Yes. For the first time ever the long awaited Bill offers protection for people with a life long incapacity and recognises the need for Deputies (Substitute Decision Makers). It ensures a minimum of bureaucratic intervention with the application of common sense.

The Bill's ultimate and important potential is to progressively and drastically reduce the areas of costly confrontation and increase mutual respect. That can only be good.

Our members wish fervently to have legislation along the lines of this Bill quickly.

October 2003

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