This talk was given to some of those leading the design of Australia's NDIS and setting out international and English experience of achievements and pitfalls.

1. Travelling Hopefully
lessons from England for NDIS
Dr Simon Duffy ￭ The Centre for Welfare Reform
￭ 15th October 2012 ￭ Adelaide, South Australia ￭

2. Striving for decent entitlements
Lessons from the English
experience of self-directed
support

3. Welfare State is a good thing -
just designed wrong.
Centre has 70+ Fellows who
work internationally to develop
social innovations.
We believe in the fundamental
equality of all human beings and
the value of human diversity.

4. Part One
The ups and downs of the English experience

5. Design is a funny word. Some people think
design means how it looks. But of course, if you
dig deeper, it's really how it works. The design of
the Mac wasn't what it looked like, although that
was part of it. Primarily, it was how it worked.
To design something really well, you have to get
it. You have to really get what it's all about. It
takes a passionate commitment to really
thoroughly understand something, chew it up,
not just quickly swallow it. Most people don't take
the time to do that.
Steve Jobs

6. What problem are we trying to solve?

8. Community ‘care’ better than an institution, but
• Not by much
• Institutional services
• Basic human rights
lacking
• Isolated from community
• Citizenship undermined
by system
We do this to diverse, interesting & gifted people
who only want to contribute, live and love.

9. We still have much still to learn

10. Professional Gift Model
• Help is received as a gift for which
I must be grateful - difficult to
change or challenge
• Help defined by someone else and
delivered as a fixed service.
• Help is inherently incompetent it
takes control away from me
• Blame moving up and down
systems of hierarchical control
• Community cut off from
awareness of its own proper role.

11. Citizenship Model of Support
• Individual in control
• Life led in community
• Clear entitlement to
funding
• Support agreed with
professionals
Challenge: a new paradigm - but one that has to
be developed from within the old system itself.

12. Life, not services - this means
• Human rights
• Independent living
• Citizenship
• Social model
• Dignity
• Social inclusion
• Valued social roles
• A good life
Keys to citizenship model developed as a
framework for good service design

13. Simon Duffy - my journey
1. London (1990-94) - IF plus service brokerage
2. Glasgow (1996-99) - ISFs and successful and
radical programme of deinstitutionalisation
3. North Lanarkshire (1999-2002) - Self-directed
support for families, reforming social work role
4. In Control (2003-2009) - SDS used to reform all
of social care, rapid uptake, many lessons
5. The Centre for Welfare Reform (from 2009) -
supporting social innovators locally and internationally

14. 20 year-old subversive, viral strategy
Change driven from outside, within and below

15. What I’m proud of - in the best places...
• Citizens and families are • People drive the design
trusted more. and delivery of their
support.
• Citizens and families are
stronger and more in • No new support systems
control. of ‘brokers’ - instead
better use of community
• People’s lives are much
and professionals.
better.
• People use services less, • It costs much less than
community more & have the old system.
more friends.
• Money is citizen’s and
can be used flexibly.

16. Mistakes and failures
• Pseudo-scientific • System tries to ‘make’
assessment tools (RAS people be creative
Versions 3, 4 & 5)
• ‘Person-centred
• Failure to build-in ‘time planning’ industry
limits’
• On-going means-testing
• Support plan treated as income & social capital
a contract
• No clear legal right to
• Not enough focus on entitlement for support
peer support
• System was not easy
enough for professionals
and people

17. Reform entitlement to rationing
1948 - NHS free healthcare c. gov provides
1948 - SSD means-tested residential care l. gov provides
1980 - B&L free residential care - RIP 1992 services claim
1988 - ILF v1 funding for IL - RIP 1993 professionals design
1992 - CC LA commissioned care packages l. gov commissions
1992 - DLA disability income supplement - RIP citizens claim
1993 - ILF v2 Ibid - IFF local funding in place - RIP l. gov claims
1996 - DPs opt out of social care with <75% l. gov funds
2000 - SP extra support funding l. gov claims
2003 - IC... a personal budget for social care l. gov funds

20. Place N Change
6 Sites Phase I Report 60 -18%
17 Sites Phase II Report 128 -9%
13 Sites IBSEN Report 203 -6%
Northants 17 -18.7%
City of London 10 -30%
Worcestershire 73 -17%

22. Innovation 1:
Up-front Budgeting

23. Innovation 2: Universal Tapered Control

24. Innovation 3: Self-Directed Support

25. Innovation 4: Personalisation

26. Innovation 5: Community Brokerage

27. Innovation 6: Re-scripting Social Work

28. In reality - progress is mostly modest
• Old habits die hard - old • New money ‘for
culture still in place. implementation’ was
wasted and has made
• When central
people lazy.
government drives
change it kills • Government cuts now
innovation. target people with
disabilities and social
• Targets have led to
care.
cheating - lots of people
now with bogus
budgets.
In many places it feels like ‘zombie personalisation’ - people
are going through the motions but have forgotten why they
are making the changes.

29. Innovations develop to a curve
English innovation institutionalised here
ignoring this pattern damages the innovation

30. Mistake 1: Assessment tools

31. instead...
Create simple frameworks, that can work within local
resource constraints. This enables quick and empowering
decision-making plus very good cost control.

32. Mistake 2: On-going entitlements

33. Mistake 3: Assessment
{

34. Mistake 4: Planning
• A plan is not a contract • At best a plan is proxy
- making people do evidence for the
their plan is competence of the
inconsistent with budget-manager
human rights
• Use and throw away
• We learn by doing -
plans are a poor tool to
promote creativity

35. Part Two
Key variables in international practice

36. Internationally systems of individual funding vary
in how they tackle a set of critical questions.
1. Entitlement - what quality of entitlement will be created?
2. Assessment - how do we determine a fair allocation that
reflects need? (or, what do we mean by need?)
3. Means-testing - do we give people with the same disability
less if they have more than the average level of other assets
(money, family, community, creativity)?
4. Vouchers or cash - what degree of trust and flexibility do
we have in our citizens?
5. Capacity & safeguarding - who is in control? how do we
keep people safe?
6. Support - how do we help people get the best value from
their budgets?
Interestingly most places never actively explore and test these
questions. Instead cultural assumptions tend to have a powerful
impact on the unconscious design of local systems.

37. International ‘movement’ (?) over 50 years old
Challenge - to give • USA and Canada -
Patchy, voucherised and
people control in a way bureaucratic
which is:
• Scandinavia - universal,
1. Sustainable highly professionalised
2. Flexible • Southern Europe -
3. Universal restricted to older people
4. Community-focused • Holland - flexible, but
5. Empowering then bust
• Germany - ordered and
To give people control, unfair
without then secretly
sneaking it back again. • UK (direct payments) -
privatised and unfair

38. For Israel the only unprecedented feature of the
trial was that, for the first time (since the year
70, when Jerusalem was destroyed by the
Romans), Jews were able to sit in judgement on
crimes committed against their own people, that
for the first time they did not need to appeal to
others for protection and justice, or fall back upon
the compromised phraseology of the rights of
man - rights which, as no one knew better than
they, were claimed only by people who were too
weak to defend their “rights of Englishmen” and
to enforce their own laws.
Hannah Arendt, Eichmann in Jerusalem

39. Good system of entitlements is:
1. Democratic - backed by the A right is not effectual by
people, defined in law. itself, but only in relation
2. Legal - tested and refined by to the obligation to which
the courts. it corresponds, the
3. Clear - everybody knows the effective exercise of a
right exists. right springing not from
4. Responsible - its clear who the individual who
has the corresponding duties. possesses it, but from
5. Effective - it provides what is other men who consider
necessary. themselves as being
6. Reasonable - it is practical under a certain obligation
and affordable. to him.
7. Consistent - in harmony with
other rights Simone Weil
Only the powerful get gifts to which they have no right. When
government gives to the powerless an entitlement will exist. But
the gift will be so designed that it doesn’t feel like an
entitlement.

40. Human rights of people with disabilities
a) Respect for inherent dignity, individual autonomy including
the freedom to make one’s own choices, and independence
of persons;
b) Non-discrimination;
c) Full and effective participation and inclusion in society;
d) Respect for difference and acceptance of persons with
disabilities as part of human diversity and humanity;
e) Equality of opportunity;
f) Accessibility;
g) Equality between men and women;
h) Respect for the evolving capacities of children with
disabilities and respect for the right of children with
disabilities to preserve their identities.
General principles governing UN Convention on the Rights of Persons with Disabilities

41. How do we define what’s necessary?
• The standard should be for
a life of citizenship - a
good life.
• But individual funding is
just one element of what
we use for a good life.
• It cannot be specified too
precisely because its value
depends on use.
• It’s only possible to make
a general judgement:
‘necessary for someone Giving money doesn’t give a
like you’. good life. Good lives are made
- not given.

42. The dangers of eligibility thresholds

44. Means-testing love & community
• If you give people with
family less because they
have family you are
means-testing love.
• Means-testing promotes
erosion of social capital
and generates crises and
increases per capita
cost.
• As a social justice
strategy it levels down -
rather than building a
universal foundation for
everyone.

45. When does government money stop being
government money?
Money can’t always belong
to the government. At some
point it must belong to
people.
The citizen knows
best, cares most and
is most affected by
spending money well
and carefully.

46. Problems and advantages of vouchers
a) Vouchers don’t always come dressed as
vouchers (rules, receipts, accounts, menus,
plans, sign-offs etc.)
b) Vouchers represent a failure of trust in the
recipient - but they may be a good first step.
c) Vouchers are inefficient. They reduce value of $
by limiting choice and flexibility.
d) Vouchers values are set by the service prices.
e) Vouchers tend to stigmatise - they tell other
people you are not trustworthy.
f) Voucher systems are costly - cash is turned
into a voucher just to be turned back to cash.

47. Who is in control?

48. Avoiding the brokerage trap

49. Part Three
Questions for Down Under

50. Things that might be worth thinking about
1. Sustainability - How will you avoid overspend,
inflation and long-term erosion of family and
community capital?
2. Local control - How will you ensure the right
relationship between federal government,
states and local communities?
3. LAC - How will you build on an a uniquely
Australian innovation?
4. Innovation - How will you ensure on-going
learning and innovation at every level: (a)
citizens (b) communities (c) systems and (d)
government?

51. Australia seems to be trying to solve at least 5
problems -
1. To create clear right to support for people with
disabilities (legal framework)
2. To specify role(s) of state vs. commonwealth in
fulfilment of that right
3. To design a system that is consistent with
citizenship and human rights (especially,
freedom, choice, control, participation and
social inclusion)
4. To tackle the underspend on disability
(financial)
5. To ensure long-term sustainability (eligibility
and resource allocation)

52. Sustainable (not just affordable) entitlements
require a system that:
• Works to a budget - entitlement does not imply
blank cheques
• Sets norms and expectations - create a reasonable
framework for citizen planning and professional
practice.
• Is pro-citizen - flexible, allows citizen discretion to
use to maximum value, alongside their other ‘assets’
• Is pro-family - builds on and supports the most
important form of social support that exists
• Is pro-community - incentivises, rather than
supplanting, stronger communities
• Empirical and dynamic - driven by real experience of
citizens and communities, revisable over time

53. Threats to sustainability include
• From famine to flood - too much money too quickly
invites bad practice, inflated expectations and chaos
• Means-testing (in all its forms) - levels down and
reduces social and community capital
• Letting businesses drive demand - overspend is
guaranteed
• Letting government, services or professionals drive
demand - overspend is probable
• Making system hostage to the market - letting
service providers use price to dictate entitlement
• Rewarding community failure - shifting resources
away from communities that are more supportive

54. Reform entitlement to rationing £
1948 - NHS free healthcare c. gov provides ++
1948 - SSD means-tested residential care l. gov provides -
1980 - B&L free residential care - RIP 1992 services claim ++++
1988 - ILF v1 funding for IL - RIP 1993 professionals design ++
1992 - CC LA commissioned care packages l. gov commissions -
1992 - DLA disability income supplement - RIP citizens claim -
1993 - ILF v2 IFF local funding in place - RIP l. gov claims -/++
1996 - DPs opt out of social care with <75% l. gov funds --
2000 - SP extra support funding l. gov claims ++++
2003 - IC... a personal budget for social care l. gov funds --

55. Remember Jesus and the story of the talents -
Jesus didn’t give anyone a blank cheque. If you
write a blank cheque then you will...
a) Grossly overspend - if businesses, charities or
other governments can make claims against it
b) Modestly overspend - If professionals make
claims for other people against it
c) Probably be okay - If people make claims for
themselves
Alternatively, don’t write a blank cheque. Set a
budget, and split it fairly. Later review what you
learned and try to do even better at both setting
budgets and splitting them.

56. Local community investment
• The context for
individual funding is
community.
• Building welcoming
local communities
is part of the role of
local government.
• Better places make
money go further.
• Can you incentivise
helpful local
investment?

57. LAC: The Australian innovation
• Sophisticated
professional role,
developed by WA.
• Hard to replicate
without appropriate
values and
leadership.
• Usefully increases
community capacity
and reduces need.
• Can an innovation
simply be
adopted,scaled up
and bolted on?

58. Is it possible to use legislation to:
• Define rights - not just to money but also to
choice and control
• Define overall responsibility - i.e. to NDIA
• Define responsibility to provide necessary
budget to fund achievement of those rights
(i.e. capped by budgeting process or taken
from a hypothecated source)
• Define responsibility to work with States,
people with disabilities and local communities
to learn and develop best possible systems -
improving them over time.
Why not build a dynamically intelligent system?

59. For more information go to
www.centreforwelfarereform.org
These slides are © Simon Duffy 2012 ￭ Publisher is The
Centre for Welfare Reform ￭ Slides can be distributed subject
to conditions set out at www.centreforwelfarereform.org ￭