40.Supplementary memorandum from RESCARE
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
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
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
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
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
iea 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.