What we arecampaigning forDr Simon Duffy, Glasgow, April 2011
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
‘Personalisation’ is another name for the long-termeffort to restore citizenship to the many who lose itthrough 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...
A note on Individual Budgets1996 at Inclusion Glasgow - we invented the idea ofan individual budget:• To give people an up-front ‘entitlement’• To let people use it ﬂexibly to meet their own needsIn 2003 we set up In Control to test these ideas at
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
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 creativeIf you don’t deﬁne what you mean by a need and ifthere is no objective system for allocating resourcesthen Individual Budgets and Resource AllocationSystems will just lead to the further abuse of people’srights.
Democracy - Citizenship - Rights - Inclusion Human flourishing (Aristotle) The ambiguity of happiness Hedonic utility (Bentham)Meritocracy - Consumers - Power - Eugenics
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
Politicians focus on winningpower by pandering to the swingvoters and median earners
The recent round of unfair cutsdemonstrate the weakness of the rights of disabled people.
This is a pincer attack on the rights of disabledpeople. If we just focus on the 1.5 million peoplewith 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 beneﬁtsSo, more than £8 billion of the total £27 billion(>>25%) which government is saving fromdepartmental budgets is being born by less than 3%
Current system undermines localdemocracy, centralises power and makesfor fragile rights From Women at the Centre (forthcoming) by Simon Duffy & Clare Hyde
Protected Cut Pensions Disability beneﬁts Healthcare Social Care Education Social Housing £350 billion out of £500 £40 billionUniversal, mainstream, for Special, marginal, for ‘the poor & unfortunate’ and ‘ordinary people like us’ ‘scroungers’ Delivered by nationalised Delivered by complex and diffuse systems with lowsystems with high visibility visibility
The cuts are just a symptom - thereare long-standing problems toaddress• 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
Build on the pillars as rights... Is this a right? How are we doing?Fully accessible environment ?Accessible transport ?Aids & equipment ?Accessible housing ? segregationPersonal assistance ????? care homesInclusive education ????? special schoolsAdequate income ????? povertyEmployment ????? unemploymentAccessible information ?Advocacy ?Peer support ?Accessible health care ?Communication ?Civic participation ?
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 CILsOr some combination?
Perhaps we could1. Integrate tax and beneﬁts - remove stigma and complexity2. Take means-testing out of beneﬁts - we’ve already paid our taxes... we don’t need extra taxes on vulnerable people3. Deﬁne minimum level of eligibility for all - transparently deﬁne a level sufficient for citizenship4. Constitutional rights to support and control - clear law that can be tested and protected5. Fix a robust organisational framework - escape the era of ‘organisational ﬁxes’
Are we united in our understanding and inourOlder 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 -
At the heart of our valuesEveryone is equal, no matter their differences ordisabilities. A fair society sees each of its members as afull citizen - a unique person with a life of their own. Afair society is organised to support everyone to live afull life, with meaning and respect.
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.
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