Dr Simon Duffy gave this talk to stakeholder in self-directed support from across Wisconsin. He explored some of the challenges that seem to be emerging internationally and some of the strategies that seem to be having the most powerful impact.

1. The future of self-direction
Dr Simon Duffy of Centre for Welfare Reform and Citizen Network
Goodman Community Center, 149 Waubesa St,
Madison, WI 53704 (12.00 - 5.00)

2. 1. Where does SDS fit in history of people with disabilities?
2. What do we learn from international experience of SDS?
3. What are the most exciting developments in SDS?
4. Citizen Network…

3. • We have seen 50 years of
relative progress in disability
rights and inclusion.
• But this followed at least
150 years of regression and
many of the dark forces that
harmed us then can do so
again.
• The core values that
underpin inclusion and
equal citizenship for all are
not well established.

5. Worries
• Growing inequality,
insecurity, stigma and
scapegoating (e.g. UN
reports on UK.)
• New technologies to
support eugenics (e.g.
Iceland and Down
Syndrome)
• Isolationism and growing
international fears (e.g.
Asel, Brexit etc.)
• As more groups start to
‘lose’ they can start to
see their common goals
of shared interest
• There is a growing
emphasis on the
meaning of life, work and
awareness of the
limitations of materialism.
• Global and local
communication has
never been easier.
Hopes

6. Normal is not good enough…

9. Centre for Welfare Reform established in 2009 to try and advance collective learning

10. • Self-direction is a
global movement
with real progress
being made around
the world.
• However resistance
and regression also
seems to be part of
the picture.
• Citizen Network -
building on this
European work - is
trying to establish a
larger global
conversation.

11. Shared problems
• Inflexibility - often initial opportunities for creativity are eroded by
increasing regulation, scrutiny and conditionality.
• Consumerism - systems often reinforce neoliberal picture as a life
of shopping rather a life of community and citizenship.
• Inadequacy - long-standing questions of adequacy and security of
funding remain largely unexamined.
• Means-testing - many systems (but not all) build in means-testing
and assured poverty-making rules.
• Individualism - many systems struggle to see citizens as family
members, community members or peers.

12. • India - Micro-banking and community facilitation
• Australia - Every Australian Counts, Now & Next
• Finland - Not for Sale, PKN
• Scotland - Self-directed support Act
• England - Local area coordination, peer support, personalised
transition
• And many, many more…
Lots of interesting solutions

15. 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.

17. 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.

21. We don’t need to
give our power
away

24. More information at www.cforwr.org
Follow @CforWR @simonjduffy @citizen_network
Like fb.me/centreforwelfarereform
e Contact simon@centreforwelfarereform.org
Join www.citizen-network.org