33.Memorandum from People First (MIB 778)
Dear members of the Draft Mental Incapacity
Bill Scrutiny Committee.
Here are People First's views on the draft Mental
People First is a national umbrella organisation
for over 100 self-advocacy groups of people with learning difficulties.
People First members think the Government's
ideas in the draft Mental Incapacity Bill will mean that people
with learning difficulties will be bossed about and controlled
even more than we are already. (There is a list of things People
First members have said about control in their lives at the end
of this letter)
We think this law is more about people making
choices for us, than about our rights to make choices for ourselves.
The Government says that it wants a new mental
incapacity law to make sure people are allowed to make their own
choices, but we think the main reason for bringing out the new
law is because of pressure from parents, and carers, organisations
and from service providers, so that carers and paid staff will
be legally covered if they make choices for someone with learning
The Mental Incapacity Bill could result in people
without learning difficulties over-controlling people with learning
The decisions should be made by us it is important
that we don't go back to the old days where disabled people were
not allowed to live independently.
People First do not like this Bill because it
will take away our independence and break our human rights it
will also go against the Government white paper, Valuing People.
People will be able to read between the lines
and pick bits out of the new law to boss us about.
The Government's proposal to give a "general
authority" to anybody to make decisions for someone who they
think is unable to make their own decisions is especially worrying.
This will mean that anybody will be able to legally interfere
with a person with learning difficulties' life as long as they
think what they are doing is the best thing for the person with
We think it is very dangerous to give a right
to people to make choices for another person on the basis that
they "believe" the person is incapable of making their
How are people going to make a decision on who
can and cannot make decisions? Where do you draw the line? Someone
may say yes I can make my own decisions and another may say no
I cannot make my own decisions.
Lots of People First members have relatives
or paid carers who always assume that we cannot make choices for
ourselves just because we have learning difficulties.
Relatives and paid carers often think that we
are not able to do things that we can do, or could do, given the
right support. They often overprotect us and will not let us do
anything that they think is at all risky.
There is no guarantee that everyone will just
help people the way they are supposed to, because some people
only see us as children, not what we can do and how we can do
things for ourselves, they will only say no you cannot do that
because they only like to be seen to have the power over us, which
Also, people have the right to make "bad"
decisions. This Bill would mean workers and carers having too
much power, this is wrong.
People without learning difficulties often do
not let us make choices for ourselves, because they cannot be
bothered to spend the time and effort to help us make a choice
for ourselves. People need time to make decisions. The draft Mental
Incapacity Bill says nothing about how the Government will make
sure that we are given enough time to make choices for ourselves.
The Mental Incapacity Bill says lots about how
you should help someone make their own choices. It also says lots
about how to make a decision for someone which is in their best
interests, but this is no good because there is no way of checking
that somebody has really tried to help someone make a decision
for themselves, or that a decision has really been made in someone's
The draft Bill says nothing about how the government
will make sure that people are really supported to make choices
Our relatives and paid carers and other people
often say we cannot make a choice ourselves because they don't
like the choice we want to make for ourselves.
Don't you think it's wrong for any person to
make a decision, like for example a next door neighbour does not
like people with learning difficulties, so the neighbour says
that she or he doesn't think that she or he can live independently
and make their own choice if they want to go shopping or pay their
Relatives and paid carers often stop us from
making our own choice because they want us to make a choice which
is best for them, rather than what we want. Many People First
members have had people like relatives, carers and social workers
who have made decisions for them which have been best for the
relative, carer or social worker, not for them.
The draft Bill says nothing about how the Government
will make sure that choices are being made for people with learning
difficulties that are best for them rather than best for their
relatives or carers. The Government is putting too much faith
in our carers, relatives and other people without learning difficulties
to make decisions for us that are really in our best interests.
There are often conflicts of interest between
us and our relatives and care workers, the draft Mental Incapacity
Bill does not take proper account of this.
An example of this is where a person with learning
difficulties wants to move out of their parents' home into their
own flat. The parents say that their daughter or son is unable
to make this decision, but their real reason for not allowing
their son or access to their son's or daughter's social security
benefits, or lose the extra pension they will get if their son
or daughter is still living with them when they reach retirement
Another example is where a person says that
they want to get direct payments to organise their own care, instead
of living in a residential home or going to a day centre. The
staff in services like this may say that someone is not able to
make this choice, but the real reason they are saying that someone
is incapable of making this choice, is because the staff working
in the service are worried about losing funding attached to the
person and therefore, the possibility of losing their jobs.
We think it is very bad that people who are
bossing us about to suit themselves will be able to say "we
thought it was the best thing for them", to defend their
actions if they are challenged. It is to easy to just say "I
thought they were unable to make the choice and I did what I thought
was best for them"; there is no way of disproving this.
Another very big problem with the Mental Incapacity
Bill is there is no way for people with learning difficulties
to challenge decisions that have been made for them.
People First asked Rosie Winterton MP, (who
was the Minister responsible for the Mental Incapacity Bill before
Lord Filkin), how somebody will be able to complain if they are
being stopped from making choices which they think they should
be allowed to make. The Minister's answer was "we just don't
People First thinks that it is really bad to
give a right to people without learning difficulties to make choices
for us, without giving us a way to complain if we disagree with
choices being made for us.
The draft Bill says nothing about easy ways
for people to complain if they disagree with choices that are
being made for them, or if they disagree that they are incapable
of making their own decision(s).
It will be very, very hard for people to complain
to the Court of Protection, especially if they have no independent
support, like an advocate, to do this.
It will be very hard for people who have communication
difficulties to complain and these people are even more likely
to be labelled as incapable of making their own decision(s). If
workers, carers etc, don't communicate in ways the person needs,
they are likely to say the person can't decide for themselves.
People who have labels like "profound learning
difficulties" are the people who are most likely to be labelled
as not able to make their own decision(s), but it is these people
who are usually most isolated and have no one to support them
if they want to challenge decisions that are being made for them.
The draft Bill does not give people who are
having choices made for them a right to an independent advocate.
If the government were really serious about making sure people
who find it hard to make choices were in control of their lives,
they would be making a law giving us a right to independent advocacy.
If the draft Mental Incapacity Bill becomes
law it will be a very big step backwards for people with learning
Here are some things People First members have
said about paid carers and relatives controlling their lives.
These stories show that giving more power to our relatives and
paid carers to make decisions for us is a very bad idea which
would lead to our lives being controlled even more.
"We have no access to our money, we are
treated like children and patronised by staff."
"I have to go to bed at nine o'clock, get
up at seven o'clock and have a bath straight away, just because
the staff say so, not because I want to."
"I was not allowed to make a cup of tea
myself at my family placement. People First helped me make a complaint.
Now I can make a cup of tea when I want to."
"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."
"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."
"I was told for years by my residential
home staff that I was being stupid to think I could live more
independently. Now I live in my own flat and have got married."
"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 other group homes I have lived in."
"I was told I must tidy up my room when
the staff tell me to, otherwise I will be sent back to the long
"My fiancé and I have been told that
she can only stay at my group home on one day each weekend because
of insurance requirements."
"The group home where my partner lives will
not allow couples to sleep in the same room if they are not engaged
"I have a problem with my parents and he
always shouts at me, he always drinks too much at home and I get
upset. I would get a flat of my own but my parents say I can't
get my own flat."
"I don't like people interfering with my
choices, I would like to do what I want when I want. I don't want
to be ignored because I can't hear very well. Staff have stopped
me from washing up. I wish I had more choices than watching the
television at home. I would like to live on my own with a carer."
"My carer is trying to stop me getting my
own house; if it wasn't for help from my advocate I would not
"I want to look after my own money."
"I don't like being told what to do. I don't
like being told when to change my trousers or to go to bed."
"I want to work but staff in my home stop
"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. I wish I could do things myself."
"Staff at the adult training centre treated
us like children; they tried to stop me and my girlfriend seeing
each other before she became my wife. We are married now."
"I couldn't do what I wanted to do when
I lived at home. I had to be in bed by 10 o'clock. I had to be
up by six o'clock to be at the centre. I didn't have control of
my money at all. When I asked for money I only got £5. If
I spent it she got mad."
"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."
"My Mum and Dad shouted at me and my father
even said he would murder me."
"I live with my father, we are both deaf,
he drinks too much, he bosses me about and he has hit me."
"My Mum stopped me from seeing my girlfriend,
I was so upset, I really loved her but my parents kept stopping
us. When she told me I could not see my girlfriend again I went
mad and went to my bedroom and slammed the door, I wanted to ring
my girlfriend but my Mum wouldn't let me, I know my girlfriend
phoned and asked to speak to me, but my Mum told her no."
"My community nurse tried to stop me going
out to see my Mum, she made up a story to back her decision but
it was false, she lied, she was sacked for it."
"Before I went to People First I wouldn't
speak up for myself, now I can speak up and I control my life.
Now I am getting my own flat, I will be able to make more decisions
"My Mum said I can't have a boyfriend."
"I have to go to the daycentre because my
Mum says otherwise I will lose my place."