Simon Duffy gave this talk at the North East and Cumbria Advocacy Conference on 30th March 2017 in Newcastle. He explores why citizenship matters and what are the challenges we face in the years ahead.

1. Putting Fuel on the Fire
Advocacy in the North

2. 1. Who do we want to be?
2. What kind of world do we want?
3. Where should we start?

3. I Citizenship

4. • Why citizenship matters
• What does it mean to be a citizen
• Why advocacy needs citizenship

5. Institutions
are not with
with walls,
but ideas.

9. Citizens = Different + Equal

10. Dr Simon Duffy of the Centre for Welfare Reform on “Citizenship & Advocacy” -
combined slides from keynote and workshop for the National Advocacy Conference
13th October 2016 - Birmingham

11. This is the ‘stuff’ of citizenship by
which we protect our status as equals
1. Finding our sense of purpose
2. Having the freedom to pursue it
3. Having enough money to be free
4. Having a home where we belong
5. Getting help from other people
6. Making life in community
7. Finding, sharing and giving love

16. Discussion

17. II System Change

18. • How we got here
• The state of inclusion
• The system we need

24. 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.

25. 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

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

27. 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

28. £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

29. £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

31. 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?

36. …confused responsibility & liability

38. Discussion

39. III Resisting Institutions

40. • Where are we now
• What can we learn from freedom fighters
• What should we do about it

41. • 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.

43. In this first period of the pilot Beyond Limits worked with 6 individuals. 5 of the group were women and their ages
ranged from 28 to 56. Thee average length of time spent in institutions was 19 years, with 3 of the group having
spent more than half of their lives in institutions. People entered the institutions at a very young age, ranging from
14 to 20. Institutionalised placements last on average just less than 2 years. On average each person had been
in 10 different institutional settings, including:
• Residential schools (n=3)
• Acute hospitals (n=3)
• Residential colleges (n=1)
• Semi-secure hospitals (n=6)
• Specialist facilities (n=6)
• Residential homes (n=5)
All six had been victims of abuse, including:
• Neglect (n=2)
• Sexual abuse (n=6)
• Physical abuse (n=5)
• Financial abuse (n=1)
All of these young people had been known to children services, although families reported that family support
had been non-existent or unreliable. All 6 are on the mental health services’ Care Programme Approach. All 6
were sectioned under the Mental Health Act (1983) and 3 had been in trouble with the police or the courts at
some time.
Duffy S (2013) Returning Home: piloting personalised support. Sheffield, Centre for Welfare Reform.

44. • 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
Duffy S (2015) Getting There - lessons from Devon & Plymouth’s work to return people home to their communities
from institutional placements. Sheffield, Centre for Welfare Reform citing Public Health England (2013) Learning
Disability Census Report 2013. London, HSCIC.

45. 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]

46. [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.

47. What do the freedom
fighters teach us?
• Citizenship
• Creativity
• Community

49. The goal of personalised support is citizenship

50. Other research demonstrates the value of flexibility…

53. Inclusion Glasgow worked with
people with complex disabilities,
moving from institutions to
individually designed support
solutions in the community.
Research on the work of Inclusion
Glasgow demonstrated high levels
of efficiency, improvements in
people’s lives and lower costs over
time.

57. Choice Support converted a block
contract for 83 people into 83
personal budgets - managed by the
organisation - ie. Individual Service
Funds (ISFs).
This work was associated with
reduced costs and improved lives.
Like many service providers, Choice
Support were happy to accept short
termination periods on that contracts
- and the ability of people to end
those contracts - instead of risky
block contracts subject to tendering
and procurement.

61. What would citizens do?
• Respect each other as equals
• Welcome each other into community
• Organise to overturn injustice

62. • 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.

64. Discussion

65. www.cforwr.org
@citizen_network
@CforWR
@simonjduffy
fb.me/centreforwelfarereform
fb.me/citizennetwork
e simon@centreforwelfarereform.org
www.citizen-network.org