6.1 MEMBERS OF THE MAKING DECISIONS ALLIANCE
Beth Johnson Foundation
Caring Matters (until 25 July 2003)
Down's Syndrome Association
Manic Depression Fellowship
Mental Health Foundation
National Autistic Society
POPAN (Prevention of Professional
The Relatives & Residents Association
Sense (The National Deafblind &
6.2 BACKGROUND INFORMATION ON ADVOCACY
Successive Governments have highlighted the
importance of independent advocacy and showed an appreciation
of the valuable role it can play in supporting people to access
vital services and ensure their rights are protected. For example,
the Disabled Persons Act 1986 charged local authorities with setting
up a formal system of authorised representatives who could make
representations about their disabled people's need for services,
get a statement of assessed needs and services to be provided
and make representations about this. However, this formal system
was never implemented.
6.2.1 More recently, the Health and Social
Care Act 2001 (part 1, section 12, clause 19A) empowers the Secretary
of State "to arrange, to such extent as he considers necessary
to meet all reasonable requirements, for the provision of independent
advocacy services". This Act also introduced two new mechanisms
to deal with health service complaints, PALS and ICAS. A similar
clause exists in the draft Mental Health Act in relation to the
help to be available from mental health advocates to qualifying
patients and to their nominated persons.
6.2.2 In addition, numerous white papers,
standards, guidance documents and reports from different Government
Departments have drawn attention to the benefits advocacy can
bring and emphasised the need for further development and support
for such services. However, apart from the limited funding announced
in the White Paper Valuing People for services aimed at people
with learning disabilities over the next three years, there has
been no indication of any national Government funding or resources
for independent advocacy services.
6.2.3 SOME MODELS
Citizen Advocacy is a one-to-one ongoing
partnership between a trained volunteer advocate and a person
who is not in a strong position to exercise or defend their rights
and is at risk of being mistreated or excluded.
Peer Advocacy is where one person advocates
for another who has experience or is experiencing similar difficulties
or who has similar life experiences (eg service users in a residential
Professional Advocacy is where people
are employed and paid within an advocacy service. This usually
follows a case-work model, focussing on particular issues.
6.2.4 If someone already has a Citizen Advocate
they know and trust, they should be able to use this support in
this situation if they so wish and if the advocate is willing
to do so rather than be required to use a paid professional advocate.
Similarly, if someone wanted to have a Citizens Advocate but there
are no such schemes in their area but paid professional advocates
were available it would be reasonable for them to accept this
as an alternative.
A man in his mid-60s has a previous history
of long-term institutional admission from his 20s to late 40s.
During a hospital admission a neighbour was very active in arguing
for him during discharge planning and agreed to provide regular
weekly support. At the meeting the gentleman did not challenge
this but was still very anxious about going home. It later emerged
that the neighbour had encouraged him to sell his family home
to move into a bungalow near her so she could "provide support".
In return, he had invested in an extension for her property.
6.2.6 As time went on, the promised support
from the neighbour never emerged. He had been unhappy with the
discharge planning at the time, but had never felt comfortable
saying anything in front of his neighbour. He didn't want to upset
her, as he was still hopeful that she would provide ongoing care.
Due to his history of institutionalisation, he was continually
scared of getting into trouble for whistle-blowing. Everyone assumed
that the neighbour was advocating for him; nobody realised the
neighbour wasn't independent. Nobody actually asked the gentleman
independently whether he was happy with the arrangements that
had been made. An independent advocate would have asked all those
6.2.7 CASE STUDY
The following case study is an example of how
someone's condition and their life experience to date have both
had an impact on their ability to make decisions.
18.104.22.168 A young woman with Asperger syndrome
had many different placements throughout her school life and early
adulthood. Her ability to make decisions was affected by these
changes in surroundings. She felt was unable to control major
decisions in her life, such as her placements, and, because the
settings were not appropriate, her reliance on her obsessions
(personal hygiene and domestic cleanliness) became more acute.
The reassurance she found in her cleaning adversely affected all
the other decisions she madecleanliness was the only thing
that mattered to her. As she became more settled in a more suitable
supported living arrangement, her obsessions declined and she
was able to engage in other activitiescollege, gym etc.
6.2.8 CASE STUDY
A non-verbal man with autism attended an autism
specific day service in a neighbouring local authority. It had
always been assumed that because of his lack of language and his
apparent indifference to his surroundings that he was incapable
of making certain decisions. When his local authority decided
that it would be cheaper for him to attend one of their own generic
day centres for disabled people the day centre appointed an advocate.
It soon became clear to everyone involved that he had understood
what was happening and wanted to stay at his present day service.
Through specific questions and his use of symbols the advocate
was able to ask him about his current day service and how it helped
6.2.9 CASE STUDY
A man who suffered a mental breakdown at university
is now paranoid about his immediate family, who are doing their
best to help him. However, he sees any support they suggest as
oppressive and detrimental to his interests. He is very intelligent
and can communicate well, but his views are distorted through
his delusional beliefs. An independent advocate is needed to help
him express his preferences to enable decisions to be made in
his best interests.
6.2.10 CASE STUDY
A young man with autism and very little language
needed a hernia operation and was in a great deal of pain. Because
of his autism he hadn't alerted anybody to the pain he was suffering.
Staff began to notice his discomfort and he went to a doctor.
He lived in an autism specific residential service and the staff,
his parents, his psychologist and surgeon agreed he needed the
operation. However without the use of an advocate it was agreed
that consent could not be assumed. The advocate was able to explain
impartially the consequences of an operation. Following access
to an advocate he gave consent and the operation was successful.
6.2.11 CASE STUDY
A lady in her mid 90s was living alone in warden
accommodation. She was physically ill but refused on several occasions
to go into hospital. It was unknown how serious her illness was
due to lack of tests (which could only be done in the hospital)it
may have been a minor blockage that could be easily rectified,
but it could also have been something much more sinister. Due
to past history the lady was adamant she did not want to leave
her home as she was very clear that she wanted to die in her own
home. She was aware that she may be shortening her life by this
decision but for her the potential benefits of a move into hospital
did not outweigh the fear of going there. The GP became very anxious
about this and instigated a Mental Health Act assessment, the
GP tried to argue there were questions over the lady's capacity
but it seemed much more to be a case of "covering the back"
by the GP.
22.214.171.124 The lady was very traumatised by
the experience of many strangers entering her home and asking
very personal questions. There needed to be someone in this process
very clearly advocating for her wishes to stay at home, as her
wishes seemed to be totally lost in this process. The concern
would be that a GP under the new system would act under the General
Authority and remove her into hospital, as the lady herself could
express her wishes if given the time and space and when asked
appropriately but was too weak to really challenge anyone. An
advocate would have clearly been able to challenge the GP's concerns
and any "medical" decisions that he made.
6.2.12 CASE STUDY
A man's health was deteriorating; and his insight
and ability to communicate were severely diminished. There was
an on-going dispute between his sister and father and his wife
when he became ill, which resulted in a long battle to register
an EPA. The family said they were quite happy for his wife to
handle all financial and business matters with the EPA not being
registered. However, the family then started to take him to meet
with solicitors and clerks, seeking revocation of the EPA when
he visited them, causing much friction. An independent advocate
may have helped to establish and communicate his views.
126.96.36.199 Q. How can you advocate for someone
whose views on the particular issue can't be established?
A. You can build up a picture of a person's
views and preferences from their behaviours and the way they react
to different things. From that, it is possible to work out what
they may prefer to happen and what makes them happy. It is however
very important for advocates to make it clear when it is not possible
to ascertain someone's wishes and feelings.
188.8.131.52 Q. HOW
A. Mental capacity isn't a black and white issue.
Someone may be capable of making some decisions and not others,
or may not be capable of making many decisions but could be able
to express views or preferences that can help guide the actions
of the substitute decision-maker. An independent advocate can
help explain to someone in a way they are more likely to understand
what the decision is about so that as far as possible their views
184.108.40.206 Q. HOW
A. The independence of the advocate is important
to the success of the advocacy. Work needs to be done by organisations
providing advocacy to establish how advocates can guarantee independence
and accountability for the individual. But we need to make sure
that the possibility of informal advocacy is not removed through
any formal process of ensuring independence and accountability.
220.127.116.11 Q. WHO
/ OR RESOURCING
A. Central Government should fund the provision
of independent advocacy support needed to make the commitment
in the Bill to a presumption of capacity a reality.
18.104.22.168 Q. HOW
A. No accurate figures are available. However,
the MDA believes that every local authority area should have an
independent advocacy service that is able to support people who
are affected by the Bill. For some areas, this will be new provision.
For others, existing services would need to be enhanced. It should
also be borne in mind, however, that many of recommendations are
about providing access to advocacy for those who do not have alternatives.
Most people will probably continue to use informal advocates (family,
friends, and neighbours) with no substantial cost implications.
6.3 MDA COMMENTARY ON MENTAL CAPACITY
LEGISLATION IN OTHER COUNTRIES
Mental capacity legislation has been the subject
of debate and legislative change around the world over the past
20 years. Many countries have made changes to their laws to ensure
that they deliver the necessary safeguards for citizens who lack
capacity to consent. An ageing population, advances in medical
technology enabling people with severe disabilities to live longer,
and the move from institutionalisation to community-based living,
were cited as the main reasons for reform. These are all issues
that are relevant to England, Wales and Northern Ireland.
This paper examines mental capacity legislation
in Scotland, Australia and Canada.
The Adults with Incapacity (Scotland) Act 2000
In March 2000, the Scottish Parliament passed
this act, recognising that the existing law was failing to meet
the needs of adults unable to make decisions for themselves. The
Scottish Law Commission produced a report in 1995 on the subject
and, after extensive consultation, the Adults with Incapacity
Act was passed in May 2000.
22.214.171.124 Mental capacity legislation takes a
functional approach to determining capacity. So, the act makes
an assumption that individuals will be able to make their own
decision unless it is proved that they are unable to do so. The
act states clearly that interventions in the affairs of adults
who lack capacity must be in the best interests of that adult;
and that the guardian (a spouse, nearest relative, and so on)
has a General Authority to act reasonably on day-to-day decisions.
The Act creates a new offence for an appointed guardian neglecting
his/her duties or failing to act for the benefit of the person
who lacks capacity to consent.
126.96.36.199 Under the Act, several agencies supervise
those who take decisions on behalf of the adult, ensuring those
decisions are in the person's best interests. These agencies include:
the Public Guardian, which has a
supervisory role and keeps registers of attorneys, people who
can access an adult's funds, guardians and intervention orders;
local authorities, which can look
after the welfare of adults who lack capacity in instances where
no guardian can be found (other local authority roles under the
Act include investigating circumstances where the personal welfare
of an adult is at risk, providing information and advice to those
exercising welfare powers and supervising attorneys and guardians);
the Mental Welfare Commission, which
protects the interests of adults who lack capacity as a result
of mental disorder.
188.8.131.52 Under the Act, the main ways that other
people can make decisions for an adult who lacks capacity are
Individuals can arrange for their welfare to
be safeguarded and their affairs to be managed properly. They
can do this by giving another person (who could be a relative,
carer, professional person or trusted friend) power of attorney
to look after some or all of their property and financial affairs
and/or to make specified decisions about their personal welfare,
including medical treatment.
Intervention and guardianship orders
Individuals can apply to their local sheriff
court for an intervention order where a one-off decision or short-term
help is required, or a guardianship order, which may be more appropriate
in cases where there is a need for the continuous management of
affairs or the safeguarding of welfare. Any person claiming an
interest in the adult's affairs, or a local authority may make
applications for intervention and guardianship orders.
Medical treatment and research
The act allows treatment to be given to safeguard
or promote the physical or mental health of an adult unable to
consent. Where there is disagreement a second medical opinion
can be sought. Medical practitioners have to consult close relatives
before administering medical treatment. Cases can also be referred
to the Court of Session in certain circumstances. The act also
permits research involving an adult incapable of giving consent,
but only under strict guidelines.
Access to the adult's funds
Individuals (normally relatives or carers) can
apply to the Public Guardian to gain access to the funds. Authorised
housing and care services can also manage a limited amount of
the funds and property of residents.
All the Australian States introduced mental
capacity legislation between the late 1980s and 1990s. The principal
model is the Guardianship and Administration Board Act 1986, in
Victoria (recently amended in 1999). Legislation covering different
states takes the functional approach to determining capacity.
This paper examines South Australia's Guardianship and Administration
Act 1993 as an example of the approach used by other states.
184.108.40.206 The Guardianship and Administration
Act 1993South Australia
The Guardianship and Administration Act 1993
came into operation in 1995. This set the Guardianship Board,
which is responsible for applying the new law, the task of setting
out a number of orders. It is assumed that close relatives will
make day-to-day decisions, but the Act encourages those who may
lack capacity in the future to appoint a guardian. However, guardians
can only make welfare and medical decisions on someone's behalf.
The act creates a new offence for an appointed guardian neglecting
his/her duties or failing to act for the benefit of the person
who lacks capacity to consent.
220.127.116.11 Administration Orders
In terms of welfare and financial affairs, the
Guardianship Board may appoint an administrator to look after
such affairs. The following can be appointed to act as an administrator:
A trustee company under the Trustee
Companies Act 1988.
A relative appointed by the Board.
18.104.22.168 Medical decisions
There are two laws that deal with the issue
of who has the legal authority to consent to medical and dental
Consent to Medical Treatment and
Palliative Care Act 1995.
Guardianship and Administration Act
22.214.171.124 If a person has not appointed a "Medical
Agent", or has not made an "Anticipatory Direction"
(a living will) under the Consent to Medical Treatment and Palliative
Care Act 1995, and mental capacity is lost, then consent to medical
or dental treatment for a person with a mental incapacity must
be sought from the following:
(a) the guardian appointed by a person, prior
to mental incapacity, to make medical decisions;
(b) the guardian appointed by the Guardianship
Board under a Guardianship Order. The written order will specify
the areas in which the guardian is empowered to make decisions;
(c) where there is no guardian or enduring
guardian, specified relatives can give consent, including a spouse,
a parent, a sister or brother aged 18 years or older, a daughter
or son of aged 18 years or older.
126.96.36.199 In terms of prescribed treatment such
as an operation, where a person is unable to give their consent,
the Guardianship Board is the only authority that can give consent.
The Guardianship Board is governed by a set of criteria when making
decisions about such a treatment or procedure.
6.3.2 6 The Office of the Public Advocate has
also been set up as a "watchdog" with the responsibility
of educating the public on issues relating to disability and promoting
the interests of people who lack capacity to consent, and in some
instances, their carers.
Adult guardianship legislation
The situation in Canada is similar to Australia's
in the way that each province has its own legislation. Until recently,
mental capacity legislation varied considerably from province
to province. There were two main approaches adopted. The traditional
system regarded incompetence as absolute (eg Ontario's Mental
Incompetence Act 1980). This means that legal rights, possessions
and decision-making power of the person lacking capacity to consent
are transferred to another once the court makes a decision that
the person lacks the capacity to consent.
188.8.131.52 This approach was heavily criticised
by disability organisations as being paternalistic and open to
abuse. Major reform took place in the early 1990's (see Ontario
184.108.40.206 The second approach, adopted in Alberta
(the Dependent Adults Act 1976), was one of the earliest attempts
to adopt a more functional approach to mental capacity.
220.127.116.11 Ontariotowards reform
In 1992, Ontario abolished its mental incompetence
guardianship regime and enacted three new legislations: the Consent
to Treatment Act 1992, the Advocacy Act 1992
and the Substitute Decision Act 1992. This legal reform promoted
the autonomy of those who lack capacity to consent, and prevented
unnecessary legal intervention in their lives. The Act states
clearly that interventions in the affairs of adults who lack capacity
must be in their best interests. People will be presumed to be
able to make their own decisions, unless it is proved otherwise.
In all the areas of decision-making, the Act makes clear the need
to encourage the individual to participate as fully as possible
in any decision affecting him/her. The appointed guardian has
a General Authority to act reasonably. As with the legislation
in Scotland and Australia described above, the act creates a new
offence for an appointed guardian neglecting his/her duties or
failing to act for the benefit of the person who lacks capacity
18.104.22.168 Individuals can arrange for their welfare
to be safeguarded and their affairs to be managed properly, by
giving another person (who could be a relative, carer, professional
person or trusted friend) power of attorney. These include decisions
about their property and financial affairs and/or to make specified
decisions about their personal welfare, including medical treatment.
22.214.171.124 Finally, the Health Care Consent Act
has created a simple procedure that recognises the social position
of family members as natural substitute decision-makers. It provides
the legal framework for carers to appeal against medical decisions.
It should be noted, however, that if the patient has granted the
power of attorney for personal care or if a guardian has been
appointed, then the attorney becomes the substitute decision-maker
and other family members lose their automatic status.
126.96.36.199 Ontario's legislation has also established
the Office of the Public Guardian and Trustee to provide a number
of services. Some of these include:
This service manages the financial affairs of
individuals who lack capacity to consent, when there is no one
else who is able, willing and appropriate to provide this service
for them. The office may be appointed as guardian of property
by a doctor in a psychiatric facility, a designated capacity assessor,
or the court.
Personal Care Guardianship
The Personal Care Guardianship is occasionally
appointed as guardian of the person to make personal care decisions
for a mentally incapable adult, if this is necessary to protect
the person from serious personal harm. Only a court can make these
appointments. As guardian of the person, it is the office's responsibility
to make decisions about things like custody, safety and housing.
Decisions about Treatment and Admission
to long-term care
This service is responsible for making decisions
about medical treatment and admission to long-term care for those
who are mentally incapable of doing so when there is no one else,
such as a family member, willing and able to provide this service.
2 In 1996, the Advocacy Act was repealed and the Consent
to Treatment Act was replaced by the Health Care Consent Act.
This was done under the Advocacy, Consent and Substitute Decision
Statute Law Amendment Act 1996. Back