98.Memorandum from Advocacy Partners (MIB
1. Advocacy Partners provides independent
advocacy to people with disabilities, mainly in South West London
and in Surrey. Established in 1981 the organisation largely works
with people with profound learning disabilities and also works
increasingly with older people with disabilities, including those
affected by dementia. Advocacy Partners is a registered charity
and a company limited by guarantee.
2. We broadly welcome the proposals in the
draft Mental Incapacity Bill ("the draft Bill") and
believe that it helps to fill a significant gap in legislation
that at present negatively affects many of our clients as well
as carers and professionals who support them. However we believe
that substantial amendment is needed if the draft Bill is to enhance
rather than to reduce the autonomy of people whose capacity to
make particular decisions may at times be questioned.
3. We have, where possible, answered the
specific questions posed for the Scrutiny Committee and provided
more detailed comments on a number of areas of the draft Bill.
4. Was the consultation process preceding
the publication of the draft Bill adequate and effective?
The issues addressed by the draft Bill have
been published and consulted on since the late 1980's, we believe
that the process has been adequate and effective.
5. Are the objectives of the draft Bill
clear and appropriate?
It is clear that the objective of the draft
Bill is to provide a legislative framework where none previously
existed for people who lack capacity. It would be more appropriate,
and render a greater service to many people whose capacity may
at times be questioned, if legislation set as a second objective
providing a framework and support to enhance capacity.
6. Are the proposals in the draft Bill workable
Greater safeguards are needed specifically in
relation to the general authority, clarity is needed about how
capacity will be assessed and by whom. An entitlement to independent
advocacy is required to enhance the capacity of people to make
decisions and to protect the autonomy and rights of people who
may nevertheless lack capacity to do so. For these reasons we
do not consider that the proposals are workable or sufficient.
7. Are there relevant issues not covered
by the draft Bill which it should have addressed?
Yes, entitlement to advocacy and to support
to assist communication and enhance capacity.
8. In what other ways might the draft Bill
Please see detailed comments below.
9. Approach to incapacity
9.1 We welcome the definition of incapacity
relating to the ability to make a particular decision.
9.2 We believe that an adequately resourced
information, awareness raising and training strategy, as well
as the code of conduct and guidance, will be required to reinforce
this understanding of incapacity. As practitioners well used to
the vagaries of interpretation of legislation and policy, we are
concerned that without this the enactment of legislation will
lead perversely to significant number of people being considered
by professionals and others to be "incapable" without
sufficient regard to a specific decision or time.
10. Inability to make decisions
10.1 We welcome the requirement that all
practicable steps must be taken to help a person to make a decision
and that these must have failed before the person is treated as
unable to make that decision.
10.2 We believe that this requirement needs
to be accompanied by explicit reference within the proposed legislation
A requirement that reasonable steps
are taken to provide information at a time and in a way that is
most helpful to the individual in supporting their ability to
make a decision.
A requirement in relation to major
appropriate professional advice on methods of communication to
enhance capacity is wherever practicable sought and acted upon.
A duty on relevant statutory authorities
to provide such advice and support in line with this advice where
A right to provision of independent
advocacy to enhance the person's capacity, at least where triggered
by specific major decisions and events (some of which are described
in this paper).
11. Best interest framework
11.1 We welcome the best interest framework.
We have used the (similar) framework outlined in the consultation
paper Who Decides over a number of years, including in our policies
on confidentiality and referrals, in appraising options on behalf
of clients and in providing supervision to advocates working with
people who lack capacity in relation to particular decisions.
We have found these to be appropriate and workable.
11.2 We are concerned that the test for
compliance 4(4) needs to be set higher in many cases. It ought
to be explicit that donees of a L.P.A., deputies and employees
of health and social care agencies making major decisions under
the general authority must have due regard to the factors outlined
in 4 (2) wherever it would be reasonable for them to do so and
2(3) in any case.
12. The general authority
12.1 Explanatory notes suggest the application
of this clause to "day-to-day decisions". We note that
this is not made explicit in the draft Bill.
12.2 We broadly agree that such an authority
is helpful in providing protection to carers and professionals
in supporting people who are unable to make some day-to-day decisions.
12.3 The draft Bill does not provide a formal
process of assessing capacity prior to the general authority being
used. We appreciate that there may be a tension between ensuring
that people are supported to make their own decisions whenever
practicable and the need to reduce potential intrusion and unhelpful
formality, particularly where this may jeopardise care provided
by relatives and other unpaid carers. Nevertheless we are concerned
that in the absence of assessment of capacity, legislation based
upon the draft Bill runs the risk of legitimising paid staff and
carers making decisions on the part of a person who can be supported
to do so himself.
12.4 We believe that further consideration
is needed about how to achieve the right balance here and that
community care assessment and care planning may provide tools
to achieve this in some cases.
12.5 There is also an opportunity to ensure
that proposed legislation encourages the provision of guidance,
resources and training on supporting people's autonomy in these
day-to-day decisions. Such materials need to be relevant to service
users, professionals, carers and those who support them.
12.6 In the draft Bill the general authority
appears to apply in deciding major questions on behalf of a person
believed to lack capacity, such as where to live, significant
medical treatment, contact and use of restraint.
12.7 We work with a large number of men
and women who face very major decisions, for example about where
they will live in the future. Many of these people lack capacity
to make these decisions. In our view, the draft Bill does not
provide sufficient safeguards for the use of the general authority
in this situation.
12.8 We suspect that there are likely to
be a number of different proposals as to how safeguards can be
strengthened here. We suggest that in relation to major decisions:
(i) It should be specified that the general
authority should be exercised in relation to significant medical
treatment by the relevant health professional, and
(ii) In the case of people provided with
health and social care services, a formal assessment of capacity
must take place, and a recorded best interest decision must be
made prior to major decisions being enacted using the general
authority, except in the case of emergency treatment/action.
(iii) A duty is placed on PCTs and local
authorities that if they are aware of a person who faces a major
decision that s/he lacks capacity to decide, they will ensure
that independent advocacy is made available to the person.
12.9 In relation to s. 7, we are concerned
that even with the above amendments, there may not be sufficient
safeguards to the use of restrictive physical interventions for
non-emergency situations. We believe that the proposed legislation
presents an opportunity to provide greater clarity and greater
protection here. This should include a right to advocacy. Consideration
should also be given to introducing a requirement that a Court
order is sought in some circumstances, and a formal procedure
followed in all cases of non-emergency restrictive physical interventions
known to statutory authorities.
13. Lasting Powers of Attorney (LPA)
13.1 From our work, especially with older
people with disabilities, we believe that the creation of LPAs
has the potential to be of considerable benefit to people who
may experience declining capacity or wish to have safeguards in
place in case this occurs.
13.2 We have experience of abuse of the
EPA system and are concerned that the position of donors of LPA
is strengthened by clear information to potential donors and the
availability of guidance, advice and where necessary advocacy.
13.3 In our experience statutory authorities
and service providers are sometimes hesitant to intervene where
they suspect that EPAs (and appointeeship) may be being misused.
As a consequence we believe that it is important that, prior to
enactment of legislation, effective information is provided to
statutory authorities, service providers, advice and advocacy
agencies on the use of LPAs and about mechanisms to challenge
suspected inappropriate use of these.
14.1 It appears from 19(1) that the draft
Bill appears to wish to keep to the minimum any restrictions on
who may become a deputy. We believe that some factors to be taken
account of in the selection of a deputy ought to be provided and
that issues of potential conflict of interest for deputies must
14.2 In order to provide sufficient safeguards,
we believe that the Court should have the power to require a local
authority or PCT to arrange for the appointment of an independent
advocate where the nature of the decision is such that further
checks and balances are needed. This may be especially relevant
if there are potential conflicts of interest for the deputy and
where the powers of the deputy are likely to span a number of
issues or may be required for a protracted period of time.
14.3 We agree that in general the powers
of the deputy should be as limited in scope and duration as possible.
We think that to provide the most assistance to, for example,
people with profound learning disabilities, the appointment of
a deputy over a considerable period of time may nevertheless,
in some circumstances, ensure fuller account is taken of the person's
preferences and interests than would be the case with several
appointments or repeated reference to the Court.
15. Assessing capacity
15.1 We appreciate the draft Bill provides
for a Court to determine whether an individual has capacity to
make a decision. We believe that the draft Bill also needs to
address how capacity will be assessed, by whom and whether this
can be challenged other than by application to the Court.
15.2 Consideration needs to be given as
to any conflict of interest that may arise for professionals and
organisations making such assessments. A right to independent
advocacy to provide support and safeguards in the assessment process
must be included for the person being assessed.
40 "Major decisions" will be used in this
paper to include decisions about where to live, significant medical
treatment, contact and use of restraint.