Historical overview of the development of self-directed support, its value and the challenges ahead.

1. Self-Directed Support
Dr Simon Duffy ￭ The Centre for Welfare Reform
￭ 17th June 2013 ￭ Centre de la Gabrielle
An Introduction to an International
Innovation

2. 1. The background to self-directed support
2. The idea of citizenship
3. How self-directed support works
4. Evidence and examples
5. Problems and opportunities

3. Our dark history

4. At the end of the nineteenth and
the for most of the twentieth
century it was common for people
to think that people with
intellectual disabilities were
different - they were not citizens.

5. The powerful eugenic movement
which spread across Europe,
America and the British Empire led
eventually to the murder of over
250,000 people with disabilities in
Nazi Germany.

6. The process of de-humanisation had
seven steps:

8. The factors that weakened people’s
grasp on their shared humanity:
1. Mass morality
2. Rootlessness
3. State power

13. The factors that allowed people to
destroy the victims:
1. Rightlessness
2. Poverty
3. Segregation

14. After World War II the focus has changed.
Human rights, the demand for independence
and the welfare state have helped change
society.
But there is still a long way to go.

15. Big institutions have slowly closed across
Europe. But often they have been replaced
with other kinds of institutions.

16. There is not just one kind of institution
we bring the institution with us

17. This shows spending in one part of England
after the institutions were closed:

21. Often English de-instutitionalisation
was institutions without the park

22. Discovering citizenship

23. If you have been doing things
wrong for a long time it is important
to think carefully and to be
confident that you know what to do
now.

25. What is wrong with institutions
1.Devalued lives - self-expression and personal development
threaten institutional thinking
2.No freedom or control - it is very hard to be heard when you
have no authority
3.Impoverishment - economic power is nullified
4.Sheltered, but homeless - a home is more than a roof - vital to
control privacy and security
5.‘Care’ not support - ‘care’ already assumes the passivity and
lower value of the person ‘in care’.
6.Disconnected- it is other citizens who report abuse and it is
structures of power within institutions that make that harder
7.Loveless - the shift to focusing on abuse not crime is a symptom
of institutional thinking

26. 1.Direction - Its risky if my life lacks meaning and value
2.Freedom - Its risky if I cannot direct my life, communicate or
be listened to.
3.Money - Its risky if I lack money or if I cannot control my own
money.
4.Home - Its risky if I cannot control who I live with, my home
and my privacy.
5.Help - Its risky if I’ve no one to help me and if I cannot control
who helps me.
6.Life - Its risky if I am not a valued member of my community.
7.Love - Its risky to have no friends or family.
Why citizenship is better

27. Citizenship is the right goal

28. Being a citizen is better than being
‘normal’
it brings us together as equals
but also as unique free individuals
Equal and different

31. Citizenship is
also very
practical. We
can use the idea
of citizenship to
think about how
to help
someone.

32. Citizenship is
possible for
everyone
it just might
take some
extra thought

33. Patrick’s Story

34. Tailor everything to the
individual...

36. Reforming the system

37. The system gave people gifts
not rights, not citizenship

38. The old system - services first

39. The new system - people first

40. These ideas are being developed
and tested throughout the world.

42. Quality always goes up
Costs can go up, down or stay the
same
Demand increases
Citizenship can increase alot

45. It is not about increasing choice
It is not about markets and
consumerism
It is about life, community and
citizenship

47. Progress and innovation

48. This kind of system change is very
complex
It changes everything

50. It is important that people get the
right support to help make
decisions

54. Different people might control the
budget

57. Its important money can be spent
flexibly

60. The change in England came from
communities first
Innovation is possible in most
existing systems

62. Early successes included
Shifting towards entitlements - not gifts
Getting people truly flexible budgets
Focusing on outcomes - not services
Avoiding the trap of ‘brokerage’
Process of collective innovation

63. It is important to let innovations
develop properly
Rushing innovations will lead to
false change

65. Government spent £0.5 billion on
implementation:
•more processes - not less
•more specialist IT - in an open source world
•more ‘consultants’
•more middle-management
•over-complication rather than simplification
•burdening people and professionals
•attention going upwards

66. Problems and challenges

67. Today individualised funding is the
norm in Denmark, Norway and
Sweden. England and Scotland will
have moved everyone over to self-
directed support in the next 5 years.
Australia is developing a new
national system. Many US and
Canadian states and New Zealand
use SDS in some form.

68. But there are fears.

69. Will budgets be protected in tough
times?

70. The UK Response to ‘Austerity’

71. Will budgets be allowed to be
flexible?

73. Will money be allowed to go into
communities or just kept for
services?

75. Can this be extended to health or
education?

77. Self-directed support is still changing
and developing - it is not yet
underpinned by proper rights to
support or rights to control support.
But its an important innovation that
respects people’s citizenship.