1. The Long Journey
Dr Simon Duffy ￭ The Centre for Welfare Reform
￭ 9th May 2013 ￭ NASDDDS Conference, Oklahoma City
An International Perspective on Supporting Families and
Individuals with Developmental Disabilities

2. Thoughts I want to share
The shadow of the institution is very long
Taking citizenship seriously changes everything
There is a bigger picture emerging
It is time to think more deeply

3. The world is a big place...
...and all we see are little pieces

4. The long shadow of the institution

5. Challenges of de-institutionalisation
Do we understand the real problem?
Do we need to take the long road?
Why not go straight to citizenship?

6. We are all very familiar with the
institution as the defining evil
which we want to overcome
...but do we really understand
the true nature of this evil?

7. De-institutionalisation in England
really gained momentum in the
1980s

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

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

12. In Scotland de-institutionalisation
was delayed until the 1990s

13. But this did mean ambitions were
often higher:
real homes
real jobs
real lives
real relationships
Scotland leap-frogged England

15. Tailor everything to the
individual...

16. Today Finland is struggling with this
de-institutionalisation is in danger of
becoming re-institutionalisation
Yet there are also exciting
innovations and possibilities

18. Taking citizenship seriously

19. Questions about citizenship
Can the idea of citizenship help us find our way?
Can we shift real power and control to people?
Who helps make citizenship real?

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

21. Citizenship is
also very
practical

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

23. In Scotland we began to develop
the idea of self-directed support
but the appetite was limited in the
late 1990s

24. England was struggling to meet the
aspirations of families and people
with intellectual disabilities. This
provoked a new interest in self-
directed support.

25. we did ‘professional gifts’
not citizenship

26. 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

27. Self-directed
support
developed
quickly by
focusing on
spaces for
innovation
within the
old system

33. In England early success has been
somewhat over-taken by mindless
implementation of ‘the model’
rather than on-going innovation.

34. 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

36. Australia is now redesigning its
whole system around individualised
funding and the promise of extra
funding

37. Different State systems are to be replaced with
one Federally controlled system, self-
management is a possibility, but:
•care manager controlled
•fear of entitlements
•rationing through process
•high risk of inflexibility
•perverse incentives for all

38. Citizenship itself cannot be just a gift
from smart well-intentioned
professional
we make
power
together

39. Darker shadows emerging

40. Emerging questions
Are we entering a new and darker era?
Can we see the new form that older evils take?
Are we ready to defend each other?

49. ...in the name of 'Enlightenment' we are eliminating whole
categories of persons. For example: So overwhelming is our
animus against the less-than-perfect that nearly 90% of
pregnancies that test positive for Down syndrome are aborted in
the United States today, all under the rubric of 'choice'. In the
name of expanding choice and eliminating 'suffering' we are
narrowing our definition of humanity and, along the way, our
responsibility to create welcoming environments for all children.
Jean Bethke Elshtain from The Abolition of Man in C S Lewis as
Philosopher
[figure for UK is 92%]

50. We see many different groups pulled into the
same kind of hell...

51. Hopeful paths and deeper roots

52. Hopeful possibilities
New ways of finding common cause
New ways of giving voice to old values
New ways of solving old problems

55. Our real wealth is in our
own hands

56. It’s time for constitutional
thinking

57. Could we take citizenship seriously?
• Human rights at heart of
system
• Minimum universal securities
as rights
• Fair and integrated tax-benefit
system
• Individual freedom for all
• Families and communities
respected

59. Thank you USA
for the inspiration to begin
for the challenge to try and go further
for your willingness to reflect more deeply
for your companionship in travelling hopefully

60. 1.Visit our library or subscribe to The Centre for
Welfare Reform:
www.centreforwelfarereform.org
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@simonjduffy
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