The document discusses the evolution and philosophy of self-directed support, emphasizing the importance of citizenship and individual control over services. It highlights experiences from different regions in the UK, showcasing both successes and challenges in implementing self-directed support models. Key themes include the necessity for community involvement, flexibility in funding, and the ongoing need for reform in systems that hinder personal empowerment.

1. Human Rights & Citizenship
the meaning of self-directed support
Dr Simon Duffy ￭ The Centre for Welfare Reform
￭ 17th October 2012 ￭ Adelaide, South Australia ￭

2. The fight for real entitlements
Victories and defeats in
England

3. Simon Duffy - personal experiences
1. London (1990-94) - IF plus 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) -
support for innovators and sharing the learning

4. Things to remember
1. Its life, not services
2. Individual funding is just a tool
3. Systems can sneak back control
4. Together we can do it

6. We still have much still to learn

7. After the big
institutions
were closed
People were
not free
People were
not included

9. Citizenship is the right goal

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.

13. Its my money

16. 20 year-old subversive, viral strategy
Change driven from outside, within and below

17. 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.

18. 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

19. Things to think about
How can we keep improving our own model of
self-directed support?
What is worth pushing for?
How can we set the best possible standard for the
implementation of NDIS?
How can we partner with people with disabilities
and families take a greater leadership role?

20. Co-production - partnership based on
a new system of power?

30. Schools can lead the way...

31. Jonathan’s story
For the 3 years before 150 days in hospital -
responding to problems with breathing.
In the 3 years after leaving hospital he has spent
only 2 nights in hospital - for elective dental
treatments.
Personalised learning - on the job - 2 City & Guilds
Qualifications.
Saving NHS, LA & Education
•Over £100,000 in hospital stays
•Over £300,000 in residential care costs
•Over £100,000 of funding contributed by the LSC

32. What I am most proud of

33. Many ways of being in control

34. You can use Individual Service Funds to have your
budget managed for you

35. Women’s organisations...
understand
personalisation

36. Local Area
Coordination
Creating solutions
in community

37. Self-directed support - its my life

38. Phase One Report
2006

39. Phase Two Report
2008

40. 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%

41. Its life, not services, people want

42. Efficiency comes from shifting power

43. right to be a citizen - full
1. Independent living
access to ordinary life
we have the right to
2. Entitlement
enough help for citizenship
we have the right to be in
3. Self-determination
control of our own lives
the rules & systems will be
4. Openness
clear and fair
we are free to use our
5. Flexibility
money as we see fit
we will share what we are
6. Learning
learning
we will each make a
7. Contribution
contribution

44. rethinking advocacy

45. You can’t procure the best stuff

46. It can’t always be government money

47. Invest in people and community

48. Peer support is the support
that is most highly valued

49. Real wealth is the means

50. Good support connects

51. Risk grows with institutionalisation

52. Eligibility thresholds cause crises

53. Time should make a difference

54. assessments made in light of all facts
{

55. Questions people asked re NDIS
What support will there be for young people?
How do Auslan users stay informed?
How will we solve the problem of adversarial
culture?
Who is setting what is reasonable?
What about inclusion of people in the process?
How will funding levels be set?
Will it take too long?
How will we tackle wider cultural problems?
What will happen after Federal election?

56. What a good NDIS means to us
• People with disabilities designing • People with disabilities must be in
and running system control of the design of services -
• Feels light, friendly, happy don’t limit us to what we’ve seen
• I can be empowered and - let us dream - then come back
optimistic to reality
• Help me get access arts, culture, • Greater focus on relationships
community and the creative • Avoid increase in specialist
community disability services
• Supports innovation, creativity - • Lets build networks
it gives us power - if something is • don’t reinvent the wheel - lets
not available we can build what build on what we’ve got - SMF -
we need make it easy to connect
• Lets us be connected to • We need to communicate better -
community and in work its more about time to listen to us
• Empowered to feel included • Universal building standards for
• Gives opportunities to get our the 21st century
voice out there • Power, control - people hear -
• The money suits out lives - not nobody to speak on my behalf
just the systems • Don’t let this be another
• Its about the right kind of disappointing grand initiative!
personal relationship -

57. 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 ￭