Dr Simon Duffy offers an overview of the global and historical development of Self-Directed Support (SDS). This talk was given at an in Control Scotland event in Glasgow in 2020 and builds on the work of the global SDS Network.

1. Self-Directed Support
If it's so good, why is it so hard?
SKILLS
Network on
Self-Directed Support

3. • Significant, but slow progress towards
respecting human rights of people with
disabilities.
• Equal citizenship is our true goal, but
we often lose sight of that goal.
• The real change starts with people, not
with systems.
• There are better systems that can help
people achieve citizenship.
• There are better legal arrangements,
but these do not make good things
happen.

4. It’s not all about the money,
that’s true. But no one is
building institutions for free.
Money - and who controls it
- is really important.

5. Self-Directed Support
• There has been a pattern of change that began in the 1960s: deinstitutionalisation,
independent living, disability rights… and self-directed support
• Self-directed support is the name (sometimes) given to the over-arching system
changes that began to expand choice, control and citizenship options to everyone.

7. • Leadership by people with disabilities
e.g Ed Roberts and TRiO (1965)
• New support structures, e.g. Center
for Independent Living (1972)
• Family Advocacy, e.g. Katy Beckett
Waiver (1982)
• System transformation, e.g. RWJ
Foundation (1999)
• UNCRPD (2006)

8. Article 1 of the UN Declaration of Human Rights states:
All human beings are born free and equal in dignity and rights. They are
endowed with reason and conscience and should act towards one another in a
spirit of brotherhood.
The first principle defined by the UN Convention on the Rights of Persons with
Disabilities (UNCRPD) is:
Respect for inherent dignity, individual autonomy including the freedom to make
one’s own choices, and independence of persons.

12. • Most money is spent on
segregated and institutional care.
• Advocates are divided and scope
of most SDS systems is limited
• SDS systems often become
increasingly inflexible
• Austerity and the attack on
disability rights

13. Q: Why is it so hard?
A: Systems resist change

15. Often periods of progress
are followed by reversal or
stagnation.

17. Change is complex
• Laws and policies that create a framework
of powers and permissions to enable
change
• Systems, funding and technologies that
makes the change a practical possibility
• Grassroots innovation, political pressure
and people willing to make the change
• Deeper thought about what really matters
and what values matter.

18. I. Values - Are we clear what we really trying
to achieve?
II. People - How do we build a stronger and
broader movement for self-direction?
III. Method - Do we know what current good
practice looks like and where further
innovation is needed?
IV. System - Can we identify the best legal
systems and policies that currently exist?
Challenge is complex

19. I. Understanding our goal

20. We are not always sure what
to call things and we often
confuse ‘technology’ with
our true goal.

23. Our goal is citizenship for all

26. John O’Brien
“We need to stand
on the ground of
citizenship.”

28. II. Growing the movement

34. Now and Next recasts
the relationship between
the professional and the
parent through
combining the spirit of
person-centred
planning, peer support
and enabling
professionals and
families to work together
as true equals -
respecting the ultimate
authority of the family.

35. III. Developing technology

40. Creating a universal system
The 7 Steps of SDS

41. 1. People would be told their personal budget as early as possible so that they knew
whether they were entitled to support and if so, how much.
2. People could make their own plans, with the people they wanted to.
3. People would finalise and agree their plan with the social worker who worked for the
local authority.
4. People could take this budget as cash or ask for it to be managed for them by the
local authority or by a third party.
5. People can use their budget flexibly and either organise their own support or pay
someone else to organise their support for them.
6. The objective is to enable the person to get on to live their own life as a full citizen,
actively involved in their community.
7. The review process should be human and should focus on whether the person is
safe, living well and able to follow their own goals.

42. Direct payments or personal
budgets are not enough. There
are multiple innovations possible
and many more required before
we can extend the scope of SDS
to everyone who will benefit.

44. Peer Support

45. Personalised support

47. Katrina’s son Jonathan has complex health
needs. He has a tracheostomy and needs to
take a breathing unit with him at all times. He
suffers from severe epilepsy, which requires
rectal medication for treatment. He has severe
curvature of the spine, is double-jointed and
has hypotonia. His health assessment
described him as having severe learning
disabilities, severe behavioural problems,
global development delays and no speech.
He also has bilateral deafness and eczema. In
the last 3 years before leaving school
Jonathan spent 150 days in hospital with
breathing problems. After leaving school
Jonathan had support that was recruited and
controlled by his mum, and funded by an
integrated personal budget. There were no
more stays in hospital; he had a job where he
was valued and earned several qualifications;
his life changed for the better.

49. IV. Changing the system

50. It’s not policy - it’s human rights

51. But the Law does no work
1. Support pioneers - Encourage practical change in the real world or identify existing
innovations and help people seem them as part of the new wave of change. Unless change
seems real most people will not be persuaded.
2. Build understanding - Share stories, research and accessible materials that make the new
ideas seem exciting and positive.
3. Keep innovating - Develop a pro-innovation approach to change, instead of fixating on one
model encourage people to share good examples and learn from each other. Welcome new
ideas and help people to see how different ideas can fit together.
4. Work from the inside - Build alliances with frontline workers and managers who want to
make changes and ensure that solutions also help solve problems within existing systems.
Create legitimacy for making these changes within the systems that need to change.
5. Go public - Develop a social movement for change which encourages people to see these
ideas as relevant to their lives. The Australian campaign Every Australian Counts is a good
example of creating an inclusive campaign for change with a positive message.

52. A particular danger is that
SDS is confused with market
liberalism. It helps to
understand why SDS really
works.

53. What the research suggests is that Self-Directed Support works because:
1. People can focus on things they really want to do
2. People can stop doing things they don’t value
3. People can select professional support they really value
4. People can use budget to enhance their community life
5. It is NOT about markets or competition

58. Flexibility becomes a central
test: Is a personal budget
really an entitlement - or is
the system really in control?

59. Mapping SDS
•We got data from 19 European countries: Austria, Belgium (Flanders),
Czech Republic, Denmark,
•plus USA, Canada, Australia and New Zealand
•plus the Progress on Personalised Support research
•Development of Global SDS Research Group
SKILLS

63. • Progress towards deinstitutionalisation remains challenging, and not just in
Eastern Europe, but the connection between self-directed support and
deinstitutionalisation is undeveloped
• It still seems that globally, most resources remain locked in institutions or
segregated community services
• Many countries have some system of disability benefits and the boundary
between disability benefits and personal budgets is not clear
• Clear data is generally hard to find and often terms do not map consistently
from one country or language to another.

64. • Many countries have systems of personal assistance, but these tend to
focus on disabled people of working age (e.g. Iceland) and groups who
need more support, children and the elderly can be excluded.
• Wider system change (self-directed support) is still at a more primitive stage
of development with different levels of take-up (e.g. Finland has just begun
implementation, Scotland began in 2013, Germany has model since 2001,
Catalonia has had a system running since 1991).
• Some countries have systems that can be used in principle, but they are not
made very accessible (e.g. Italy)
• Some countries have no clear system (e.g Ireland)

65. • Some countries allow intermediaries to help people manage budgets and
employ staff for people (e.g. Malta)
• Some countries use independent bodies to assess level of need (e.g.
Netherlands)
• Some countries do not allow people to employ personal assistants (e.g.
Romania)
• Many countries have systems with a high degree of local variation, both in
law and in implementation (e.g. States and counties in the USA, Provinces in
Canada)

66. • Some countries allow a high degree of flexibility in how resources are used in
theory, but in practice resources may be restricted to more conventional
services (e.g. England)
• There are different approaches to brokerage and planning, with some
countries supporting independent planning (e.g. Belgium (Flanders))
• In some countries the state manages the system of self-directed support (e.g.
Scotland), but in others the state sub-contracts the function to private or non-
profit organisations (e.g. Wisconsin’s Managed Care System or Australia’s
National Disability Insurance Agency).
• Lack of funding, low levels of funding, high eligibility and means-testing
remain critical issues in many places.

67. • People with physical disabilities may need much less help around decision-
making and may want to employ their own personal assistants. Hence Self-
Directed Support or independent living often focuses on employment of your
own staff team.
• People with intellectual disabilities may need more help with decision-
making and this has led to a greater focus on advocacy or brokerage
systems.
• Older people may be much less likely to employ staff and may be more
willing to purchase services from existing community organisations.
• People with mental health problems may be focused on solutions that
include counselling and peer support to provide support while making
decisions.

69. 1. Independent living - we have the right to be a citizen with full access to ordinary lives - I
have a right to live my life in a way that makes sense to me.
2. Entitlement - we are each entitled to enough support to achieve citizenship - I have a right
to enough support and also the right not to be over-supported.
3. Freedom - we should be in control of our own lives - I have a right to make decisions about
how I live my life and, if needed, I have a right to be supported by people who know me and
love me to make those decisions with me.
4. Openness - we should be clear about any rules or systems - I have a right to be told clearly
and simply how the system of entitlement works and how the rules affect me; including how
much money I am entitled to for my support.
5. Flexibility - we should be free to use our own entitlements as we see fit - I have a right to use
my money in any way that helps me to live my life; including the freedom to take risks, make
mistakes and learn from them.
6. Learning - we should share what we are learning to help everyone - I have a responsibility to
share with others what I have learnt, what works for me and what doesn’t work for me.
7. Contribution - we have a responsibility to contribute and to build stronger communities - I
have a right and a responsibility to use my skills, talents and knowledge to play a full part as
a citizen in my community.

70. D&G Ab Fife WD Bord NL Inv SA ER Ren Glas H
Independent
living 50% 70% 20% 50% 40% 40% 40% 60% 60% 50% 20% 20%
Entitlement 70% 50% 20% 30% 20% 30% 30% 20% 70% 30% 20% 10%
Freedom 80% 70% 35% 40% 40% 30% 30% 20% 50% 30% 10% 10%
Openness 60% 80% 10% 30% 20% 40% 30% 60% 90% 30% 0% 10%
Flexibility 20% 60% 10% 0% 10% 30% 30% 40% 60% 30% 0% 10%
Learning 80% 60% 60% 0% 40% 80% 30% 70% 65% 20% 0% 10%
Contribution 60% 70% 20% 0% 30% 70% 40% 80% 70% 0% 0% 10%

72. Big questions
• How do we get flexibility in a system where there will
still be resistance and professional control?
• Where should we begin to make meaningful change?
• What is the goal of SDS?
• How do we change attitudes, lobby and inspire?
• What kind of language should we use?

73. Questions for Culture
Change
• Where do we already know the money?
• How do we build on lived experience and existing relationships?
• How do we inspire people?
• How do we connect people?
• How do we use the past and tell old stories anew?
• How do we gather outcome and efficiency data?
• How do we create a strong community for change?

74. Additional resources
• www.centreforwelfarereform.org - citizen think tank
• www.citizen-network.org - global cooperative
• www.enil.eu - PA research
• https://cic.arts.ubc.ca - SDS Research Database
• www.selfdirectedsupport.eu - online learning on SDS
• www.selfdirectedsupport.org - Global SDS Network
• http://waindividualisedservices.org.au - personalised support