129.Memorandum from the Disability Right
Commission (MIB 1057)
1.1 The Disability Rights Commission (DRC)
was created by the Disability Rights Commission Act (DRCA) 1999.
Section II of the DRCA imposes the following duties on the Commission:
To work towards the elimination of
discrimination against disabled persons;
To promote the equalisation of opportunities
for disabled persons;
To take such steps as is considered
appropriate with a view to encouraging good practice in the treatment
of disabled persons; and
To keep under review the workings
of the Disability Discrimination Act (DDA) 1995 and this Act.
1.2 The Commission has given itself the
mission of seeking to achieve a society in which all disabled
people can participate as equal citizens.
2. Scope of the response
2.1 The DRC's response is concerned with
the interests of disabled people who could be subject to the provisions
in the Bill including:
Disabled people who may lack capacity
to make decisions at some times and/or who may lack capacity to
make some decisions, including for example mental health service
users and survivors and people with learning difficulties.
Disabled people who may be wrongly
judged to lack capacity to make decisions due to others' incorrect
perceptions of disability.
Disabled people with different methods
of communication who may be wrongly judged to lack capacity to
2.2 The DRC also notes that it is vital that
the same principles should underpin the Incapacity Bill and any
proposed mental health legislation: in particular, both Bills
should ensure that no one who is capable of making a decision
about their treatment should be given treatment without their
2.3 We welcome this opportunity to comment on
the Bill and would be pleased to clarify any points contained
in this response. However the short timescale allowed for written
responses (over the summer period when many people are on holiday)
has not allowed us to consult stakeholders in the depth that we
should have liked.
2.4 We have raised concerns about the terms
"capacity" and "best interests" and whether
these can be defined on the face of the Bill. We will be holding
a seminar on 22 October to enable stakeholders to discuss these
3. DRC response to the draft Mental Incapacity
3.1.1 Legislation to clarify who can and
who cannot make decisions regarding personal welfare and health
decisions (as well as financial ones) for someone who lacks capacity,
has been lobbied for over a number of years and is to be welcomed.
The Commission believes that there is a need to clarify law to
underpin decision-making when someone is temporarily or permanently
unable to take a particular decision, and to put in place robust
safeguards to maximise autonomy.
3.1.2 The Commission will however resist
any attempt to take away a person's right to make decisions on
their own behalf and to give that right to others, where they
are able to make those decisions. It will be essential to ensure
that disabled people are given maximum support to make decisions
3.1.3 The Bill addresses a complex area
and needs to provide clarity on decision making for a wide range
of people with different types of impairments, in different situations.
For example, a person with a learning difficulty who is in hospital
receiving intensive care must be given every opportunity to make
a fully informed decision about their treatment; someone with
a fluctuating mental health problem needs to know they will receive
support they have specified in advance, or support specified by
a person of their choosing, if they become temporarily incapable
of making decisions for themselves.
3.1.4 The underlying philosophy should be
that support for decision-making is available but only at points
where it is needed. It should not be forgotten that many people
with learning difficulties and mental health problems are leading
independent lives today who 20 years ago would have been considered
unable to do so. Whether we consider people "capable"
depends on the context in which people are living and the attitudes
of those around them. It is all too easy for well-meaning professionals
to take over decisions, to provide "help" with decision-making
when it is not required. When people are "helped" in
this way they do not gain the confidence and skills to take decisions
themselveswhich can confirm the view that they are "incapable".
This happened on a large scale through institutionalisation; but
can also occur in community settings. The belief that people are
"incapable" in effect becomes a self-fulfilling prophecy.
The DRC believes that a success measure for the proposed legislation
would be delivery of greater (not fewer) opportunities for people
with mental impairments to take their own decisions.
3.1.5 In pursuance of this vision we would
want to protect a person's right to make decisions irrespective
of whether others might believe them to be "wrong".
There should not be an assumption that disabled people need particular
protection from risk. They should be expected to take risks in
the same way that all citizens do. There should be a level playing
field allowing disabled people the same level of freedom to make
decisions, with their attendant risks, as other citizens. We would
also want disabled people, like their fellow citizens, to have
the full protection of the law if they were exposed to unnecessary
risk or had been victims of crime.
3.1.6 The underlying principles as stated
in the Bill are therefore welcomed:
Capacity must be assessed against
a particular decision at the material time.
A person must be assumed to have
capacity unless it is established that he lacks capacity.
A person is not to be treated as
unable to make a decision merely because he makes an unwise decision.
A person is not to be treated as
incapable of making a decision unless all practicable steps to
help him do so have been taken without success.
The need to permit and encourage
him to participate, or to improve his ability to take part, as
fully as possible in any act done for and any decision affecting
3.2 The aim of the draft Bill
3.2.1 "The Mental Incapacity Bill aims
to provide a clear, simple, informal system that will ensure people
can maintain a maximum level of autonomy. People would be able
to choose someone who can make decisions for them when they cannot
do so themselves. And there would be clear rules on how decisions
should be taken, making sure that vulnerable people were not left
open to abuse." Lord Filkin CBE Parliamentary Under-Secretary
at the Department for Constitutional Affairs.
3.2.2 For many people the Bill will achieve
what it sets out to do. This includes, for example, some people
with mental health problems who run their own lives successfully
when well but when in crisis are sometimes unable to do so; they
will be able to nominate someone to make daily decisions about
their lives on their behalf.
3.2.3 However for some disabled people,
particularly those with learning difficulties and those in "closed"
situations, there is a clear danger that the "general authority"
far from enabling choice, control and autonomy, will make it easier
to override their wishes.
3.3 The general authority
3.3.1 The general authority makes it lawful
to act for someone who lacks capacity where it is reasonable for
the person taking the action to do so and the act is in the person's
best interests. No formal powers are necessary. It is envisaged
that "Most of the day to day care of adults who lack capacity
will take place under the general authority with no need for any
formal decision-making authority."
3.3.2 Historically disabled people have
experienced decisions being made for them by others inappropriately
(sometimes well-intentioned, sometimes not), and are rightly concerned
that the general authority, instead of providing protection from
what currently happens (sometimes illegally), will in fact simply
legalise such actions.
3.3.3 While it is recognised that the provisions
in the Bill would simplify the job of carers and assist them in
dealing with day-to-day healthcare and other problems and also
provide safeguards for professionals, such as doctors, nurses
and social workers, the rights of the individual must be paramount.
3.3.4 The general authority, places all
responsibility on the carer or professional to judge whether someone
lacks capacity to make a decision, and then to decide what is
in their best interests. It relies totally on the understanding
and goodwill of the carer or professional, sometimes with no independent
support for the disabled person. It is therefore open to misuse
and abuse, both intentional and unintentional. It offers little
protection for the rights of people who may have difficulty making
or communicating decisions. In particular the safeguard for the
decision-maker that "there is sufficient compliance of acting
in the persons best interests if the decision-maker reasonably
believes that what he or decides is in the best interests of the
person concerned" is extremely weak in protecting the disabled
person. The DRC believes that a stronger safeguard is needed in
the form of a right to independent advocacy (see below). This
would both assist the individual in asserting his or her wishes
wherever possible and act as a check on the professional's or
carer's judgment where the person could not express any view.
Where the advocate and carer/professional could not agree the
matter should be referred to the Court.
3.4 Definition of Capacity and best interests
3.4.1 The Bill lays down some general principles
regarding capacity, and some criteria and those people who should
be consulted, in deciding best interests.
3.4.2 The Bill does not address the current
lack of a clear legal definition of who does, and who does not,
have capacity to make day-to-day decisions. To safeguard disabled
people from being wrongly deemed to lack capacity (either in some
instances or overall, whether deliberately or unintentionally)
what "capacity" means needs to be defined as clearly
3.4.3 The Bill includes a list of criteria
for use when considering what is in the best interests of the
person concerned but there is no clear definition of what "best
interests" means or how they are to be decided. Even in cases
where the disabled person has a carer who wishes to maximise their
decision-making, the terms "best interests" and "capacity"
are not sufficiently defined to aid them.
3.4.4 The lack of clarity surrounding these
issues has caused considerable problems for disabled people in
access to health services for a number of years up to the present.
Do Not Resuscitate (DNR) notices have been posted on disabled
people's notes without consultation as the consultant has decided
it is in their "best interests".
3.4.5 What is meant by "capacity"
and "best interests" should be addressed on the face
of the Bill as far as is practicable, but so as not to restrict
flexibility in relation to the range of situations the person
might be in; and then reinforced and developed in the codes of
practice. This will be crucial in achieving the aims of the Bill.
3.5 Advance Decisions to Refuse Treatment
3.5.1 Advance decisions to refuse treatment
may be used by people who wish to plan for a future loss of capacity
and who wish to make clear what treatments they would wish not
to receive. An advance decision must be made whilst the person
3.5.2 There are many sound arguments in
favour of advance statements. For example Mind has welcomed, "The
clear recognition that people will be able to state in advance
which treatments they do not wish to have should they lose capacity
(eg if someone has experienced bad side-effects from an anti-depressant
in the past)."
3.5.3 However there have also been concerns
raised regarding people in "closed" relationships, where
the disabled person can be vulnerable to coercion by others who
have an interest in the outcome, for example, who would benefit
from the death of the disabled person.
3.5.4 Baroness Findlay of Llanduff quotes an
example from her clinical practice.
"A lady aged 59 was very ill.
Her family appeared to be very concerned about her pain and constantly
asked for her diamorphine to be increased. However, we remained
unconvinced that her pain was really that severe. In fact, the
patient declined increasing doses of diamorphine. Her 60th birthday
arrived and was passed with minimal celebration, after which the
family visited very little. She became depressed and spoke to
one of the night nurses, explaining that the problem was that
on her 60th birthday, her fixed-term life insurance policy expired.
The family would not now inherit what they thought they would
if she had died, and if her drugs been duly increased."
3.5.5 The draft Bill does not contain sufficient
safeguards to ensure that disabled people are not coerced into
making advance statements.
3.5.6 If it is possible to legislate sufficient
safeguards and Advance Directives are given legal status, then
they should include the right to say what positive treatment the
disabled person does wish to be taken to sustain their life in
the event of accident or illness, for example use of artificial
ventilation. This could have a positive effect on safeguarding
disabled people's lives. At present the whole debate on advanced
directives is biased towards refusalnot acceptanceof
treatment. This is an unacceptable bias.
3.5.7 There is a further risk in advance directives:
that someone who has never experienced disability, who has incomplete
understanding and who is influenced by negative perceptions of
what life with a disability might be like, could decide thatwere
they to become disabled and incapable of making a decision eg
develop dementia or experience brain injurythey would wish
to have no treatment. There is a major challenge in ensuring that
individuals are provided with substantial, unbiased information
before making advance statements concerning conditions that they
have not experienced. It is much more difficult for them to know
in advance what they might wish than it is, say, for someone with
a fluctuating mental health condition who already knows which
treatments they do and do not want when their condition recurs.
3.6 Independent advocacy and communication
3.6.1 The draft Bill does not contain sufficient
safeguards for some people (especially those in "closed"
situations) to ensure that they are able to make decisions for
themselves wherever possible, nor does it provide a proper mechanism
to support people to make their own decisions or make their wishes
3.6.2 Historically, many disabled people
have been excluded from making decisions or have had their wishes
overridden. Sometimes this happens inadvertently but, unfortunately,
sometimes it is intentional. Other disabled people can be deemed
to lack capacity simply because they have difficulty communicating
3.6.3 A particularly important safeguard
and support that has not been included in the Bill is the right
to independent advocacy. This would: ensure that disabled people
are not wrongly deemed to lack capacity, enable disabled people
wherever possible to make decisions and be involved in mutual
decision-making, ensure their "best interests" are at
the heart of decisions when they lack capacity, and ensure they
are not open to coercion.
3.6.4 It is difficult to envisage how the
Bill can achieve its aims for all disabled people without a right
to advocacy. For example the Bill states that "all practicable
steps must be taken to help the person make the decision before
they can be regarded as lacking the capacity to make that decision".
This is often best achieved through independent advocacy (sometimes
simply to aid communication).
3.6.5 It is essential that disabled people
have access to independent advocacy when they need it, to enable
them to make choices for themselves. In particular, it is essential
at important points of the process eg when making advanced statements,
and when the Court is considering whether the person has capacity
to make their own decisions, when capacity is being assessed in
relation to a major life changing decision, when appointing an
attorney to act on their behalf, and when appointing a deputy
in the case of disputes.
3.6.6 Access to independent advocacy is
the key safeguard that would strengthen the right of individuals
to make decisions for themselves. The General Authority, without
a right to advocacy, could leave this right open to threat.
3.7 Consistency with proposed mental health
3.7.1 The DRC believes it is vital that
incapacity law and mental health law should be based on consistent
principles. In particular no one who has "capacity"
to take decisions about treatment should be given treatment without
consent. Please see the attached DRC response to the Draft Mental
Health Bill 2002 for a fuller explanation of these arguments and
3.8 General issues
3.8.1 The Bill will require sufficient funding
to successfully achieve its aims. The DRC will want to see as
a prerequisite, a legislated, funded right to appropriate support
to enable disabled people to make their own decisions, and protection
from having decisions imposed upon them. This will include: access
to independent advocacy, effective dissemination of information
on the existence of the legislation and its provisions (for disabled
people, carers and professionals), and access to communication
support. There must be readily available and accessible information
for disabled people, on their rights and where to get help.
3.8.2 The Codes of Practice will be crucial
to ensuring that the law protects those it is intended to protect
whilst not undermining the autonomy of others. Sufficient time
and outreach must be devoted to consultation on the Codes to allow
proper consideration of the implications.
3.8.3 In addition, the working of the legislation
will require in-depth monitoring to disclose whether it is effectively
enabling the autonomy that has been promised.