Learning Disability Alliance Launch | 2015 | www.learningdisabilityalliance.

org

Government must do better

Shocking results of mass survey published
Over recent weeks people with learning disabilities, their
families, friends and their allies were surveyed by LDA
England. About 2,000 people completed the survey 50%
disabled people and 27% families. The results reveal the
deep level of shock and outrage felt by many. The survey
asked people to score the Government in 12 areas: rights,
advocacy, family life, community, income, education,
work, home, support, health, safety & justice.

2
10

In every area the Government was seen to have failed.

Putting all the scores together means that people gave
the Government a mark of 2 out of 10. People also shared
stories and views, typical responses included: This
Government does not care. and The Government dont
have a clue about the lives of those they are changing.
More detailed information will be available in
the following weeks as the data is
published. Find out more:
bit.ly/LDA-results

#LDVote

PARLIAMENTARY LAUNCH PAPER

A dismal performance
Government marked in 12 key areas:

1
10
2
10
3
10

The Governments worst scores were in the areas of

Income & Taxes and of Work. 83% said income was
worse, 69% saying its a lot worse. One said: I have
had benefits cut to a point where we are running up
massive debts. another: If you try and do voluntary
work they think youre fit and take you off benefits.
The Government also did very badly on Rights,
Advocacy, Family, Education, Home, Support and
Justice. 80% said Family Life was worse under this
Government. One said: Most support services are no
longer there. another just said: Try living like us.
Slightly better, but still dismal, was the Governments
marks in the areas of Community Life, Health and
Safety. For example 52% said Community Life was
now a lot worse. One said I took my godson to the
local supermarket and was screamed at because he
has Down syndrome; they called this 3 year old and
me scrounging b***ds and punched me in the face
and tipped my godsons pushchair over and started
kicking him.

PARLIAMENTARY LAUNCH PAPER

Unite for our rights

We must embrace our
community. For many of
diversity, our differences,
our not-yet-disabled sisters
our talent and work
and brothers have come
together until we can
to realise that their destiny
dream the dreams of
is tied up with our destiny.
all. It may now be a
And slowly, but surely, they
nightmare, but we too
are coming to realise that
can dream. To dream is a
their freedom is bound to
Gary Bourlet gave this speech at
right for all humans and
our freedom.
H&SAs 2014 Conference.
the first step on the road
to justice. Without our dreams we have
We cannot travel this road alone.
no hope, and we all have hope. Our
rights, our dignity, our existence can
And as we travel we shall make this
all be threatened, but the flame of our
pledge, a promise to travel together on
hope cannot be extinguished.
a journey with our leaders at the fore. A
The hope of a world in which all humans
are seen as people first, people, with
fundamental rights: to eat, to drink, to
live, to love, to be free, to dream. We can
dream of a day when all children grow
together, learn together, play together
regardless of ability. We can dream of a
day when those children become adults,
accepting adults who see the world as
equal, a world of ability not disability.
We can dream of a world where people
have the right to have their basic needs
met, in whatever form they arise.
This marvellous new power which is rising
in our disabled community must not lead
us to dismiss all those outside of our

journey led by those of us with disabilities,

a journey supported by those paid to
provide the framework upon which we
build our lives.
For freedom, when it comes, is about our
choices: the choices of disabled people,
the lives of disabled people, the voices
of disabled people. Our choices. Our
lives. Our voices. Made with our families,
our carers, our supporters. But always,
always, always, at heart, our choices,
our lives, our voices - not those who may
want to speak for us.
Gary Bourlet works
with Kaliya Franklin at
People First England.

PARLIAMENTARY LAUNCH PAPER

The price people pay

""Social care services in crisis
""Poverty getting deeper
""Help for families cut

""Institutional abuse continues

""Unemployment high and rising
""Advocacy and legal aid cut

""Hate crime and stigma increase

""Exclusion for children & families
""Local community services cut

Many people with learning disabilities and families are experiencing the results of these wrongs:

Died in the bath after an

epileptic seizure in an ATU
despite advice of family.
Was a preventable death.

Sent away from family to an

ATU against family wishes.
Family and advocates told to
back off from fighting.

Died in a care home having

moved from an ATU where he
experienced abuse and poor
care. No-one listened

Sent away from family to

a secure unit against their
wishes instead of getting
specialist help near home.

Seriously neglected by the

organisations supposed to care
for him. The family are ground
down by the fight for justice.

Taken from his family and

placed in an ATU and planning
to move further away against
the wishes of his family.

Young man with Aspergers

has to go out of county to
college to be able to get the
right support.

Lost 2.5 stone in weight

because school insisted on
changing routine against
wishes of family.

Fear of funding cuts and the

closure of the ILF. Dont reduce
my funding package as you
will reduce me having a life.

Told he must live in residential

care instead of being supported
to stay with family because it
is too expensive.

Professionals take legal action

against a family who dispute
the care being offered. The
family win in court.

Health professionals assumed

mother could not parent well
instead of diagnosing her sons
condition.

Accused of fabricating her

childs illness instead of giving
her the help she needed to look
after her child.

Sent away to a secure unit

instead of getting the support
he needs to stay with his
family.

People do not listen or show

enthusiasm for self advocacy.
Some self advocates have been
threatened and called liars.

I should not be criticised for

how I dress, I am a young
woman, not a child, I can make
my own choices.

Totally Wrong List: bit.ly/wrong-list

PARLIAMENTARY LAUNCH PAPER

Winterbourne
What can be done?

commissioners, providers and psychiatrists do

the right thing. CQC have told some ATUs they
must get better and have refused to register
others because they do not think they are
needed.
The National Audit Office did a review and said
the Government has failed to help people. NHS
England are now working harder to change this
and have made a promise that they will close
ATUs and have a proper plan within 6 months.
If they want to be successful they need
to do the following:

People with learning disabilities go into ATUs

because commissioners do not know how
to make sure there is good housing, support
and specialist help in their communities.
Providers of ATUs make a lot of money and
it is not in their best interest to help people
to live in their communities. Some of them
are incompetent providers and dont do what
they say they will do, assess and treat people.
Psychiatrists do not understand that people can
actually get better if they have the right housing
and support in their communities so they keep
them in ATUs and give too many drugs to treat
the problems instead. The only people that have
suffered because of this are the people with
learning disabilities and their families. Some
people have come out of ATUs but a lot of
people have also gone in.
The Government has tried to make this better
but has failed. This is because they did not
understand what was needed to change
things, they asked the wrong people to
help and no-one had any authority to make








Make sure they do good plans with

people in ATUs and families so they
know what they want.
Put money into housing so they can
get people out of ATUs.
Make sure that there is good local
support to help people manage their
behaviour so they stop people going in
to ATUs.
Work directly with the good providers
that already know how to support
people well.
Make sure that the money is flexible so
people and families can choose how to
spend it.
Dont waste money on consultants
and managers that dont know how to
do this properly but work with people,
families and organisations that have
experience of doing it the right way.

Alicia Wood is CEO of the

Housing & Support Alliance

Our Manifesto for a Good Society

The National Forum of People with Learning Disabilities and the National Valuing Families Forum set out our goal:

1. Human Rights

2. Advocacy

3. Family Life

4. Community

The right

Being

Being loved,

Being a

to be

listened to

and able to

citizen who

ourselves

for real

love others

is a real part
of life

5. Income

6. Education

7. Work

8. Home

Decent income,

High hopes,

Contribution,

A place of

the chance to

help to learn

value and a

our own,

save and earn

and grow

fair reward

with people
we love

9. Support

10. Health

11. Safety

12. Justice

Respect

Equal access

Independence

Fair treatment

and help

to the best

and freedom

and protection

to lead our

care and

from fear

by the Law

own life

advice

Thanks to Photosymbols for allowing

us to use their images.

PARLIAMENTARY LAUNCH PAPER

Cuts target disabled people

Why are people hit by so many different cuts?
Housing Cuts
Bedroom Tax
Cuts in Housing Benefit
Cut in MIR
Cut Council Tax Benefit
Increased rents

Care Cuts
Increased means-testing
Higher eligibility
Cuts in Adult Social Care
Cuts in Childrens Services
Closure of ILF
Cuts in Supporting People
Cuts to Personal Budgets

Income Cuts
VAT increased to 20%
Utitlity bills increased
Indexation rules changed
DLA replaced by PIP
Failing Work Programme
ATOS and WCA
IB being replaced by ESA

Since 2010 the Coalition Government

has quietly introduced a whole series of
policies that target disabled people for
cuts:







Cuts to benefits
Less support to find work
Cuts to housing
Cuts to care and support services
Increased taxes

People in poverty have been targeted

for cuts nearly 3 times as much as the
average person. People with the most
severe disabilities have been targeted
for cuts 6 times more than the average
person.
The Government try to deny these facts,
although three independent reports
have confirmed them. There continues
to be no media coverage of this issue,

despite the Prime Ministers pledge that

those with broader shoulders should
bear a greater load.
In our survey one person said: They
should be completely ashamed. The
way our most vulnerable and disabled
have been treated the past five years is
absolutely disgusting.
A recent analysis by the Institute of
Fiscal Studies showed that the poorest
10% of households, have lost 500 per
year, through tax increases and benefit
cut. This is a 9% reduction in peoples
income after tax.
The Learning Disability Alliance was
formed in order to defend peoples
basic rights and to draw attention to
this growing injustice - bringing together
disabled people, families and their allies.
Why do the heaviest cuts fall on
disabled people?

1,071

on
average

2,689

if youre on
a low income

4,605

if youve
also got
a disability

6,354

if you need
social care

Average annual cuts per person by 2015-16

PARLIAMENTARY LAUNCH PAPER

Exclusion from ordinary life

In every area things are going backwards
Why do so few people have real jobs?
80%
70%
60%
50%
40%
30%
20%
10%
0%

73%

of working
age people
have a job

Only 7%

of people with
learning disabilities
have a job

Jobs - The UK has one of the highest

employment levels in Europe, but disabled people, especially people with
learning disabilities are excluded from
work and their unemployment has grown.
The failed Work Programme and cuts to
social care have made things worse.
Advocacy - Advocacy for people with
learning disabiltiies has been slashed.
Between 2009-13 advocacy was cut by
15%. In 2011, in just one year, 23 selfadvocacy organisations closed. Cuts to
legal aid have also made it harder for
people to protect their basic rights.

Housing - High house prices may benefit the

wealthy, but they do not benefit people on
lower incomes. The Bedroom Tax and other
cuts have made independent living even harder
to achieve. Only 15% of people with learning
disabilities have a home of their own.

PARLIAMENTARY LAUNCH PAPER

10

Social care crisis

Basic support cut
Adult social care is in crisis and deeper cuts are coming

2009

2013
500,000 people cut from adult social care
because of cuts by central government
on local government.

1.8 million people

receive
adult social care.

1.3 million people

recieve
adult social care

care is the biggest thing local government

does.
In practice this is a false economy:




In only four years adult social care has

been cut by 30%. This is despite the fact
that every study has suggested social care
should in fact be growing.
The cuts are experienced in many
different ways:









Personal budgets are slashed

Charges - the disability tax - increased
Eligibility levels raised
Re-assessments used to cut costs
Lower salaries, worse terms &
conditions
Minimum staffing levels and hours
5 minute visits

The reason that cuts have fallen in social

care is that local government funding has
been slahed by about 30% and social




People miss out on the chance to

contribute to their community, find
work or help others.
People end up in crisis, hospital or in
expensive ATUs.
Without support some people may
even get in trouble and end up in
prison.
Families struggle, without support,
leading to heartache, breakdown or
even suicide.

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Who is PARLIAMENTARY
Learning Disability Alliance
LAUNCHEngland?
PAPER

National Forum
of People with
Learning Disabilities
National Valuing
Families
Forum

170+ organisational members

11

Democratic
representatives
of family advocates
150+

H&SA
mem

bers

1,300+ individual members

uniting for the rights of

upto 1 millon people with learning disabilities, plus their families, friends and professional allies

5 million people or 10% of the vote

Join us at: over
www.learningdisabilityalliance.org

PARLIAMENTARY LAUNCH PAPER

12

Join LDA England

Whats next?

Let people know how you

On 2nd April LDA England

feel - join LDA England.

will mark all the political

Its free to join. Individuals,

parties. We will publish

groups and organisations

the results and encourage

can all join:

people to use their vote:

www.bit.ly/joinLDA

www.bit.ly/LDA-judge

Bad policies

Survey results

LDA England has published

The full results of the

a full list of 50 bad policies

survey will be published

that harm the lives of people

in the coming weeks. For

with learning disabilties:

more information go here:

www.bit.ly/wrong-list

www.bit.ly/LDA-results

www.learningdisabilityalliance.org | #LDVote
Lots of people helped to make the Parliamentary Lauch of LDA England possible including: Claire Bates, Lauren Bushby, Simon Cramp,
Rhianon Gale, Henry Iles, Tim Keilty, Liz Kendall, Sarah Maguire, Vicki Raphael, Anna Wojnilko and Care Management Group, Certitude,
Choice Support, Dimensions, Foundation for People with Learning Disabilities, Imagineer, Jan-Net, Local Area Coordination Network, Lifeways,
New Prospects, North West Training & Development Team, Pathway Associates, Pavilion Publishing, Photosymbols, Real Life Options.
The LDA England Newspaper was editied by Dr Simon Duffy, Director of The Centre for Welfare Reform
www.centreforwelfarereform.org and voluntary coordinator of the Learning Disability Alliance England
with layout assitance from Henry Iles of www.henryiles.com.