MENTAL INCAPACITY BILL
Mental Incapacity Bill
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 makes it law for such support to be provided so
that the person without perceived capacity can be involved in
the decision making process.
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
"My carer is trying to stop me getting my own
house, if it wasn't for help from my advocate I would not be moving.
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
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 Article 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
have stopped me from washing up." (ECHR article 8 violation)
"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
"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 (Article 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 Rights Act.
"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 particularly 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 decisions.
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 can not
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 1st, 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
House of Commons
August 29th 2003
Re: Draft Mental Incapacity Bill (Cm 5859) July
2003 Submission of Evidence
My Name is Simon Cramp, and I am a person with a
mild Learning Disability. I am a trustee of two major charities
- Royal Mencap Society, and a Housing Association called New Dimensions
Group which through its operating companies provides housing to
people with Learning Disabilities. I am also a Freelance Consultant
working in the field of Advocacy and promoting people's rights.
I am also involved in a lot of the work set out in Valuing
People (Cm 5086, March 2001).
I will now set out from your terms of reference what
I like about the Bill and where it can be improved.
The issues the Bill tackles have, of course, been
discussed for a very long time. However, I believe the
consultation process has fallen short of the ideal
because a lot of people who could be affected by the Bill know
nothing about it. Groups like Mencap and People First have done
something to publicize the Draft Bill; but while I am a very involved
part of these groups and I was aware that a Draft Bill was on
its way, if I had been a member of say Joe Public I would have
not possibly have picked this up. Learning Disability and other
disabilities are still not news worthy or on the top of people's
agenda. That is a pity when the Bill touches so closely on
Are the objectives of the Draft Bill clear and
appropriate? Yes, but I believe it was
a good move on the Government's part to set up a Joint Committee;
and hopefully the Government will find it useful in its future
What I like in the Bill, and where it can be improved:
I believe the Government has drafted the
Bill with good will, and tried to give it as much flexibility
as possible. However, we hope for further listening to people
with learning disabilities both in refining the Bill and in drawing
up the Codes of Practice.
The Bill and the Codes between them need to make
- The priority is people being allowed to make
their own decisions.
- There is encouragement of listening to people
who don't use words but can communicate by other means.
- People who need help in making or stating their
decisions have the support of independent advocacy and circles
- Supporters for people are those who know them
well and are chosen by them - supporters they are comfortable
- Disabled people and others with decision-making
problems are allowed time to make decisions with support, rather
than being rushed into someone else's decisions.
- Where urgent decisions have to be made - for
example there is a life-threatening condition to deal with - there
is still hard listening to the person himself or herself and to
those who know them well, including the doctor in medical cases.
The Code could usefully take as an example of an
important decision that is not urgent the decisions needed around
a holiday for a severely disabled person. Another more significant
example would be where someone lives (in cases where the person
can not simply decide that for themselves).
I welcome the safeguards in the Bill to protect vulnerable
people from abuse of their affairs, but I think there need to
be rights of appeal against assumptions being made that they are
not able to make decisions, and against decisions made by others
that seem to be abusive. The Bill as it stands does not encourage
independent advocacy by individuals or by circles of support -
in vetting decisions about competence, in vetting decision making
by alternative decision makers, and in supporting appeals.
We have lost in this draft the obligation of Social
Services Departments to protect vulnerable people where their
interests are being threatened.
I hope these points will be useful to the Committee
and to the Bill.
My Address is
Mr Simon Cramp
20 Middleton Drive