This talk by Simon Duffy was given to an alliance of organisations seeking to advance the rights of people with learning disabilities in Finland. In this talk Simon gives a brief overview of the progress of people with learning disabilities to full citizenship and recent set backs. The talk ends by considering what kinds of responses are necessary to restore us to a more positive approach.

1. Inclusion in England
a short history of progress and challenges
?

2. • England was one of the first countries to close its
large institutions - although the process took
40 years - with the last institution closing in 2010.
• The England's model of deinstitutionalisation was a
typical 'early model' with most 'community'
provision (a) groups homes + (b) day centres.
However groups homes are relatively small.
• Families remain under-supported and reliant on
crisis to generate entitlement to support.
• Special schools dominate education process -
although there is some support for inclusion.
Employment rates are extremely low.

3. Family or friends
Group homes
Prison (not on books of LA)
Social landlord
Registered care home (in area)
Registered care home (out of area)
Private tenant
ATUs (mostly out of area)
Adult placement
Owner occupier
Registered nursing home
Hospital
Sheltered housing
Sofa surfer
Other
B&B
Emergency hostel
Prison (on books of LA)
Probational
Mobile home
Rough sleeper
Refuge
35,340 people live outside their community (20%)
77,470 live in an institutional services or residential care (49%)
23,845 have what most people would call their own home (15%)
Sources:
NB This data covers 158,000 people with learning disabilities who have come to
the attention of LAs as outlined in Public Health England (2014) People with
Learning Disabilities 2013. Data on people in out of area placement is from Na-
tional Mental Health Development Unit (2011) In Sight and in Mind - A toolkit to
reduce the use of out of area mental health services. London, National Mental
Health Development Unit. Plus prison data.

4. Supported Accommodation
Living with a partner
Living on your own
Living with other relatives
Living with parents
Where people with learning disabilities live in England

5. Living with 4 or less
Living with between 10 and 5
Living with more than 10
Group home sizes for people with learning disabilities

6. 0 50 100 150 200 250 300 350
Residential respite
Domicilary care
Outreach
Family placement
Day centre
Individual day support
Residential care
Nursing home
Residential colleges
Specialist day services
Group homes
24 hour support
Institutional units
Numbers per service
Typical service use in Lancashire - early 2000s

7. £0 £50000 £100000 £150000 £200000
Residential respite
Domicilary care
Outreach
Family placement
Day centre
Individual day support
Residential care
Nursing home
Residential colleges
Specialist day services
Group homes
24 Hour support
Institutional units
Prices for different services
Price of services in Lancashire - early 2000s

8. £0mn. £2mn. £4mn. £6mn. £8mn. £10mn. £12mn.
Residential respite
Domicilary care
Outreach
Family placement
Day centre
Individual day support
Residential care
Nursing home
Residential colleges
Specialist day services
Group homes
24 hour support
Institutional units
Expenditure on services
Expenditure pattern in Lancashire - early 2000s

10. 0%
10%
20%
30%
40%
50%
60%
70%
80%
73%
of working
age people
have a job
Only 7%
of people with
learning disabilities
have a job
Why do so few people have real jobs?

12. Community-institutional care is
the norm. Citizenship and
inclusion is happening, but still
relatively unusual for people with
complex disabilities (15%?).

14. • Self-directed support or personal budgets is now a
much more common response for people with
learning disabilities and their families.
• However few services are really working with
families flexibly and supportively. It’s mostly a Do-It-
Yourself approach which loads all responsibility on
to the family.
• Care home services have been excluded from self-
directed support (for some reason).

15. How did we get here?

16. • Early 1970s - Peak institutional population and era of public
scandals revealing institutional abuse with growing family
advocacy and campaigning to change policy. Deinstitutionalisation
begins - led by professionals and inspired by normalisation.
• Late 1980s onwards - Second wave of de-institutionalisation -
supported employment, inclusive education, supported living, self-
directed support, person-centred planning, self-advocacy and
focus on inclusion.
• 2001 - 2010 - The New Labour “Valuing People” era - broad
political support for earlier trends, additional ‘development’ funding
An era of consultancy, training and cosy compliance by NGOs -
sleepy good intentions.
• 2010 onwards - New abuses and austerity - people with learning
disability targeted for cuts. Responsibility for system change
avoided by extreme right-wing Government - rise of the scrounger
and skiver rhetoric.

17. Abuse…

18. • In the last 3 months 25.9% of inpatients had harmed themselves
• 21.0% of inpatients had suffered an accident in the last 3
months
• 22.2% of people had suffered physical assault in the last 3
months
• Physical restraint had been used 34.2% of people in the last 3
months 11.4% had suffered seclusion in the last 3 months
• 56.6% of people had been the subject of at least one incident
involving self harm, an accident, physical assault against them,
hands-on restraint or seclusion during the last three months
• Antipsychotic medication used regularly or at least once in the
last 28 days for 68.3% of the people in the units
Data from a recent UK Government report on institutional
services for people with intellectual disabilities

19. 0
100
200
300
400
500
600
700
800
> 10 yrs5-10 yrs2-5 yrs1-2 yrs6-12 mths3-6 mths0-3 mths
Length of stay for people with learning disabilities in inpatient ‘facilities’
Note that this describes length of stay in a particular institution - people are often moved from place to place
and so many people will have been away from home for many years longer than these figues suggest.
[Source: Learning Disability Census, 2013. n=3250]

20. [Source: Learning Disability Census, 2013. n=3250]
0
300
600
900
1200
1500
£364,000£312,000£260,000£208,000£156,000£104,000£78,000
We spend over £0.5 billion on 3,250 people with learning disabilities in inpatient ‘facilities’
The average cost of one of these institutional and typically abusive places is over £172,000 per year.

21. …and austerity

22. Benefits & tax credits
Local gov (England)
Schools
University & business
Policing, justice etc.
Scotland
Energy, envir. culture
Defence
Transport
Wales
N. Ireland
Tax & benefits admin
Where the cuts are targeted

26. 1.8 million people
receive
adult social care. 1.3 million people
recieve
adult social care
500,000 people cut from adult social care
because of cuts by central government
on local government.
...and further cuts are coming.
2009 2013
Cuts to adult social care
in England
[Source: ADASS (2014) Budget Survey 2014. ADASS] http://bit.ly/wrong-list

27. Why has this
happened?

28. • Charities and NGOs are too scared to challenge UK
Government - partially this is because of increased
financial dependence and real threats.
• An era of subsidies for debt have left majority of UK
population scared of threat to job and mortgage - so
many are desperate to be led to safety by any
strategy and happy to support scapegoating.
• UK law only provides weak and conditional rights
and the idea of citizenship and inclusion has little
hold on the UK system. There’s been too much focus
on ‘policy’ change - too little on real change.

29. What can we do
about it?

30. • Organise better - (cf. Every Australian Counts) -
disability campaigns need to be more universal,
united and ambitious.
• Do better - Organisations are capable of much more.
They need to break free from the hold of the
commissioner & provider split that has blocked
innovation.
• Think better - This is about basic rights and the kind
of society we want to live in. Citizens have rights and
those rights should be protected by constitutional
checks and balances.

31. Find out more:
www.cforwr.org