32.Memorandum from Changing Perspectives
This Bill should start from the position that
a person can make decisions and that appropriate support is in
place. There must be recognition that some people can't make decisions
if their communication needs aren't met, whether through provision
of interpreters, communication facilitation or appropriate equipment
or their behaviour/gestures have not been correctly interpreted
alongside inaccessible information. There is nothing in the bill
which will make it law for such support to be provided so that
the person without perceived capacity can be involved in the decision
Additionally, there is no provision of advocacy.
This is an obvious gap in this proposed legislation and the Disabled
Peoples and Representation Act 1986. It is critical that any proposed
legislation must include such proposals as one person says:
"My carer is trying to stop me getting my
own house, if it wasn't for help from my advocate I would not
Without such proposals many people may be WRONGLY
perceived to be without capacity, when in fact they need support
on how to participate in the decision-making process.
The Mental Incapacity Bill assumes that anyone
making decisions on behalf of people without perceived capacity
is always acting in their best interests. There is no acknowledgement
of any conflict of interest, which may rise in any decision, both
"significant" and "insignificant". Some examples
where the bill may allow others to make decisions on behalf of
people without perceived capacity where conflict of interests
will arise WITHOUT FAIL.
John and Lesley were living in separate group
homes. Both of them were married and wanted to live together as
a couple in their own home with support of Direct Payments. The
staff in the group homes were against the idea and made this clear
at John's care planning review meeting.
The conflict of interest arises where the staff
are only being paid whilst residents live in the home. It is not
in the staffs' interests if residents want to live on their own.
Another example will be where persons without
perceived capacity are living at home.
"I did not have control over my money at
all. When I asked for money I only got £5. If I spent it
she got mad."
This is another example where there will be
conflict of interest. In this case, parents may rely on the financial
income from their daughter or son with learning difficulties and
therefore be unwilling to give money to him or her.
We have concerns that the Mental Incappacity
Bill will violate the fundamental rights of people without perceived
capacity. Under Article 6, the claimant must have a right to an
effective remedy where his/her European Convention Of Human Rights
(ECHR) have been violated. The proposed Bill GIVES NO EFFECTIVE
Remedy if a person without perceived capacity believes his/her
fundamental rights (ECHR) have been violated. In this case Articles
6, 8, 10, 14 (the right to a fair trail, right to privacy and
family life, freedom of association and assembly and not to be
discriminated against on the grounds of disability.
Such cases where people without perceived capacity
rights will be violated:
This Bill will affect the rights of people without
perceived capacity, in this case disabled people labelled with
"I don't like people (staff) interfering
with my choices. I would like to go where I want when I want .
. . Staff have stopped me from washing up." (ECHR article
"I am not allowed to take my own medicine;
the staff say I can't manage it, even though I coped with it well
in both group homes I have lived in." (ECHR article 8.)
"Julie and I planned to get married, the
staff at Julie's group home stopped us from seeing each other
and have sent Julie's engagement ring back to me." (ECHR
article 8 violation.)
"My daycentre staff will not let me go to
my local People First office and try to stop me going to conferences
and other events," (ECHR article 10 violation).
If the Mental Incapacity Bill becomes law Disabled
People with learning difficulties like these would have no RIGHT
to appeal where a declaration that their rights have been violated.
Furthermore, the person with learning difficulties will not be
able to seek an injunction against the decision makers.
It is very clear that the Human Rights Act covers
the actions and decision-making processes of statutory bodies.
This also includes service provision. Such landmark cases include
X, Y and Z where it was ruled that the manual handling procedures
of carers/personal assistants services must respect disabled care
receipt ants with learning difficulties fundamental human rights
(Articles 3 and 8). The Human Rights Act is limited to STATUTORY
Bodies decisions which may include their directly contracted services.
The Human Rights Act is likely to fail when non statutory bodies
or persons employed by them make decisions on behalf of persons
without perceived capacity. Many people with learning difficulties
are stopped from making and implementing their own decisions by
their parents and carers who would not be covered by the Human
"I do a lot of volunteer work for People
First which means I travel all over the country. I have to keep
my trips around the country secret from my Mum, I am sure she
will try to stop me if she finds out."
"I am stopped from going out by my Mum,
I would like a place of my own because sometimes I am treated
like a child, and I wish I could do things myself."
When such decisions are made on behalf of persons
with learning difficulties there will be no redress even under
the Human Rights Act. Such redress will need to be incorporated
in any proposed Bill.
The Government says there is sufficient checks
and balances to ensure that only the right people can make decisions
on behalf of someone without perceived capacity. From our understanding
a person can make decisions on behalf of another if she or he
"reasonably" believes that a person lacks capacity to
make a particular decision. The problem with this is that it allows
anyone to consider another can't make decisions based on the stereotypical
assumptions about what people with learning difficulties can do
as People First say.
"People without learning difficulties often
only think about what they think we can't do, rather than what
we can do, or could learn to do."
The Government says that some decisions should
be made by the courts. Here, the Bill have not specified which
decisions should or should not be made by the courts. As a consequence
it will be left up to the "integrity" of the decision
maker to invite the courts to make a ruling. We would assume that
most decision makers wouldn't refer the matter to the courts.
As with now, the courts are involved with financial and healthcare
matters for people without perceived capacity where one would
expect legal safeguards to be in place. However, it is unclear
whether such legal safeguards will remain.
Where a person is unable to make a decision
for whatever reason legal safeguards must be in place to ensure
ALL decisions are made in the best interests of the person with
perceived incapacity. Anyone making decisions must be registered.
Independent advocates must also be involved.
We think having a lasting power of attorney
is a good idea where people who are unable to make decisions can
choose people who they can trust to make decisions for them. This
could be extended to selecting particular persons to make specific
To conclude we would like to see a Bill titled
"Supported Decision Making" where the focus will be
on how people can be supported to make their decisions. Where
decisions cannot be made by a person a tough legal framework is
in place to ensure conflict of interests of decision makers is
kept to a minimum.
Changing Perspectives providing training and
consultancy on disability rights issues. Simone Aspis (director)
and disability rights activist was the former People First Parliamentary
and Campaigns Worker. Additionally, Simone has been very active
in campaigns to safeguards the rights of disabled people who are
perceived to be without capacity.
Alongside People First, we would be interested
in submitting oral evidence. It is important that the committee
hears the voices from many disabled people with learning difficulties.
The Committee needs to find a balance of hearing non disabled
people's organisations that claim to represent people with learning
difficulties and self-advocacy groups run by disabled people with