This talk was given to the 2011 ASL & Campaign for a Fair Society Conference. It argues that personalisation and supported living are just way stations on the way to greater citizenship.

1. A Fair Society
supported living and personalisation
Dr Simon Duffy ￭ The Centre for Welfare Reform ￭
for the Association for Supported Living & the
Campaign for a Fair Society ￭ 24th November 2011

2. My message
• some progress on the journey towards
greater citizenship
• personalisation and supported living were
important way stations - but not
destinations
• significant dangers lie ahead
• time to get stronger & to get organised

3. Closing institutions was not enough...
...reinvented inside communities

4. People were stuck in ‘model worlds’...
...power was with systems and services

5. Struggle has been to assert rights...
...and make those rights meaningful.

6. Some progress
• Higher expectations for people
• Closure of the biggest institutions
• Some shift in power and control
• Increase in professional humility

7. 4 Warning signs
• Targeting of economic pressure
• Confusion about institutions
• On-going eugenics
• Policy failures harm disabled people

8. Cuts focus on those with little clout...
...target benefits & social care

9. Ignorance about institutional risk...
10 Hidden Voices:
Hidden Voices: Older People’s Experience of Abuse
Older People’s Experience of Abuse
An analysis of calls to the Action on Elder Abuse helpline.
Written by Action on Elder Abuse and published by Help the Aged
7.5
Help the Aged Action on Elder Abuse
5
Action on Elder Abuse Data (2004)
2.5
Home
Sheltered Housing
Hospital
0 Care Home
Relative Risk
average care home has >24 beds

10. The philosopher Jean Bethke Elshtain writes:
“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.”
[The rate of abortion for unborn children with
Down’s syndrome in the UK is 92%]

11. Policy failures...
1.Weak framework of rights
2.Weak system of entitlements
3.Crisis-led service system
4.Disempowering systems
5.Segregation from ordinary life
6.Poverty and poor incentives to work
7.Charging that taxes disabled people

12. So, with support of ASL, we began...
Now working on
new UK manifesto
...the Campaign for a Fair Society

13. 1. Human rights
• UN Convention on Rights of Disabled
People as law in all parts of the UK
• Rights that can be backed by the courts,
includes
• ...equal right with other citizens to
choose their place of residence and
where and with whom they live.
• ...services including personal assistance
necessary to support living as part of the
wider community.

14. 2. Objective entitlement
• Cost of health and social care is >£130
billion
• Private social care is £3.5 billion (2.7%)
• LA charging and top-ups is £2.3 billion
(1.8%)
• Health & social care divide makes no
sense in an era of personalisation
• Courts use ‘natural justice’

15. 3. Early support
• Family support is counted against you
• Families are encouraged to break down
• Families are disrespected
• Crisis support is expensive and
institutional

16. 4. Right to control
• People make the best decisions
• Current restrictions are burdensome
and confusing
• Individual or personal budgets are being
corrupted
• Why is an entitlement ‘public money’?

17. 5. Against segregation
• People need access to all the ordinary
opportunities available to citizens...
• housing
• education
• work
• leisure

18. 6. Income security
• The poorest 10% of households have an
income of £6,500
• Of which 47% is paid in taxes - highest
rate of any decile
• The poor often face marginal tax rates
of 100%
• Only sensible solution is universal
minimum income and fair taxes

19. 7. Against charging
• Charging is special tax that is levied
only on disabled people
• It punishes people on very low incomes
and benefits
• It encourages people to be poor
• It is expensive to organise
• It raises very little money

20. remember our roots

21. build new alliances

22. So, remember
• the goal is citizenship, not services
• we’ve achieved much and can do more
• the challenges may look different
• change begins in a vision for change
sign up:
www.campaignforafairsociety.org

23. For more information go to
www.centreforwelfarereform.org
These slides are © Simon Duffy 2011 ￭ Publisher is The
Centre for Welfare Reform ￭ Slides can be distributed subject
to conditions set out at www.centreforwelfarereform.org ￭