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
(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.
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