This document discusses the campaign for personalization and individual budgets for disabled people. It notes that personalization is just a new term for rights and supports that disabled advocates have long fought for, like supported employment and individual budgets. However, there are still open questions about defining needs, sufficient levels of support, and individual control over budgets. The cuts to disability benefits and social care demonstrate the weakness of disabled people's rights. A long-term strategy is needed to build rights like accessible housing, adequate income, and civic participation for disabled people.

1. What we are
campaigning for
Dr Simon Duffy, Glasgow, April 2011

2. A note on Personalisation
• Not invented by government
• Only a new name for what we’ve all been
fighting for years
• The term ‘Personalisation’ was invented by
Charles Leadbeater for skeptical politicians in
London
• In danger of becoming the ‘Emperors New

3. ‘Personalisation’ is another name for the long-term
effort to restore citizenship to the many who lose it
through prejudice and institutional responses
‘The technologies of personalisation’ include:
supported employment, supported living, self-
advocacy, citizen advocacy, individual budgets,
person-centred planning, direct payments, self help,
centres for independent living and many more...

5. A note on Individual
Budgets
1996 at Inclusion Glasgow - we invented the idea of
an individual budget:
• To give people an up-front ‘entitlement’
• To let people use it flexibly to meet their own
needs
In 2003 we set up In Control to test these ideas at

6. A note on Resource Allocation
Systems
• The idea was the the RAS would be an
entitlement for citizenship
• But this was one bridge too far for Whitehall

7. Lots of big questions still unanswered
• What is an eligible need? - madness of FACS: even
being a victim of abuse does not trigger an
entitlement
• What is sufficient? - incontinence pads instead of
personal care - what about citizenship?
• What about a right to control? - people’s plans are
being stripped of anything imaginative or creative
If you don’t define what you mean by a need and if
there is no objective system for allocating resources
then Individual Budgets and Resource Allocation
Systems will just lead to the further abuse of people’s
rights.

8. Democracy - Citizenship - Rights - Inclusion
Human flourishing (Aristotle)
The ambiguity of happiness
Hedonic utility (Bentham)
Meritocracy - Consumers - Power - Eugenics

9. The changing face of eugenics
“...in the name of 'Enlightenment' we are
eliminating whole categories of persons. For
example: 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.”
Christmas in Purgatory Jean Bethke Elshtain
Lennox Castle Hospital

10. Power lies with the meritocrats

11. Politicians focus on winning
power by pandering to the swing
voters and median earners

12. The recent round of unfair cuts
demonstrate the weakness of the
rights of disabled people.

13. This is a pincer attack on the rights of disabled
people. If we just focus on the 1.5 million people
with the most significant disabilities - they will lose:
• £4.6 billion in social care support
• £4 billion in disability living allowance
• Termination of ILF
• Cuts to Supporting People
• Many further cuts in housing support and other
benefits
So, more than £8 billion of the total £27 billion
(>>25%) which government is saving from
departmental budgets is being born by less than 3%

14. Current system undermines local
democracy, centralises power and makes
for fragile rights
From Women at the Centre (forthcoming) by Simon Duffy & Clare Hyde

15. Protected Cut
Pensions Disability benefits
Healthcare Social Care
Education Social Housing
£350 billion out of £500 £40 billion
Universal, mainstream, for Special, marginal, for ‘the
poor & unfortunate’ and
‘ordinary people like us’ ‘scroungers’
Delivered by nationalised Delivered by complex and
diffuse systems with low
systems with high visibility visibility

16. The cuts are just a symptom - there
are long-standing problems to
address
• Weak entitlements - eligibility thresholds high and
rising, housing rights weak, legal rights weak
• Super-taxation for disabled people - means-
testing, charging
• Poverty traps - benefit systems that punish
families, savers, earners and disabled people
• Weakened families - support focused on
crises,family control undermined, families
disrespected
• Imprisonment for many - up to 20,000 people
with learning difficulties in prison
• Pre-birth and at-birth eugenics - 92% abortion

17. Build on the pillars as rights...
Is this a right? How are we doing?
Fully accessible environment ?
Accessible transport ?
Aids & equipment ?
Accessible housing ? segregation
Personal assistance ????? care homes
Inclusive education ????? special schools
Adequate income ????? poverty
Employment ????? unemployment
Accessible information ?
Advocacy ?
Peer support ?
Accessible health care ?
Communication ?
Civic participation ?

18. And how could rights be delivered?
• The NHS - strongest funding base and universal
guarantee - but highly invested in meritocratic-
control
• Tax-benefit system - simple and efficient - but
need an assessment arm
• Local government - democratic, local - but always
under attack
• A New government system (cf. ILF) - possible role
for revamped ILF?
• A New community system (cf. CILs) - possible
radical alternative e.g. use CILs
Or some combination?

19. Perhaps we could
1. Integrate tax and benefits - remove stigma and
complexity
2. Take means-testing out of benefits - we’ve
already paid our taxes... we don’t need extra taxes
on vulnerable people
3. Define minimum level of eligibility for all -
transparently define a level sufficient for
citizenship
4. Constitutional rights to support and control -
clear law that can be tested and protected
5. Fix a robust organisational framework - escape
the era of ‘organisational fixes’

20. Are we united in our understanding and in
ourOlder people - everybody will
• strategy?
experience these issues - but too
late?
• People with learning difficulties
- do they count?
• Children and families - are
families really part of our
thinking?
• Mental health - are the issues
really different?
• Disabled people - who do we
mean?
• Professionals and other allies -

21. At the heart of our values
Everyone is equal, no matter their differences or
disabilities. A fair society sees each of its members as a
full citizen - a unique person with a life of their own. A
fair society is organised to support everyone to live a
full life, with meaning and respect.

22. Seven key principles...
1. Family - we give families the support they need to
look after each other.
2. Citizenship - we are all of equal value and all have
unique and positive contributions to make.
3. Community - we root support and services in local
communities.
4. Connection - we all get chances to make friends
and build relationships.
5. Capacity - we help each other to be the best that we
can be.
6. Equality - we all share the same basic rights and
entitlements.

23. Challenges
• Are we all in this together?
• Are we clear about what we
want?
• Can we organise a collective
voice?
• Can we engage the public and