People FIRST |
29th August 2003
"a voice for peopLe with Learning difficulties"
House of Commons
London SWIA OAA
Dear members of the Draft Mental Incapacity Bill
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
We think this law is more about people making choices
for us, than about our rights to make choices for ourselves.
People First (Self Advocacy), 3rd Floor,
299 Kentish Thwn Road, London NW5 2TJ
Tel: 020 7485 6660 Fax: 020 7485 6664
People Inst is rim isv
people with learning difficulties 4:ampiiigning for equal rights.
We give ioformatiioi, training
and udvice to other people.
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
2 person with learning difficulties life as long
as they think what they are doing is the best thing for the person
with learning difficulties.
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 own
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 is
3 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 can not 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.
4 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 parent's home into their
own flat. The parents say that their daughter or son is unable
to make this decision, but
5 their real reason, for
not allowing their son or
access to their sons or daughters 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
6 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 know'.
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
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 difficulties
I Nico Mac Given: Campaigns Officer On behalf of
National People First
8 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 9 O'clock, get up at 7 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 too.'
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.
9 1 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 too, otherwise I will be sent back to the long stay
My fiance and I have been told that she can only
stay at my group home on one day each weekend because of insurance
The group home where my partner lives will not allow
couples to sleep in the same room if they are not engaged or married.
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.
l 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 be moving.
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 me.
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 meand 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 6 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
My daycentre staff will not let me go to my local
People First office and try to stop me going to conferences and
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 too 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 for myself
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.