A Fair Societysupported 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
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
Closing institutions was not enough... ...reinvented inside communities
People were stuck in ‘model worlds’......power was with systems and services
Struggle has been to assert rights......and make those rights meaningful.
Some progress• Higher expectations for people• Closure of the biggest institutions• Some shift in power and control• Increase in professional humility
4 Warning signs• Targeting of economic pressure• Confusion about institutions• On-going eugenics• Policy failures harm disabled people
Cuts focus on those with little clout... ...target benefits & social care
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
The philosopher Jean Bethke Elshtain writes:“So overwhelming is our animus against the less-than-perfect that nearly 90% of pregnancies thattest positive for Down syndrome are aborted in theUnited States today, all under the rubric of choice.In the name of expanding choice and eliminatingsuffering we are narrowing our definition ofhumanity and, along the way, our responsibility tocreate welcoming environments for all children.” [The rate of abortion for unborn children with Down’s syndrome in the UK is 92%]
Policy failures...1.Weak framework of rights2.Weak system of entitlements3.Crisis-led service system4.Disempowering systems5.Segregation from ordinary life6.Poverty and poor incentives to work7.Charging that taxes disabled people
So, with support of ASL, we began... Now working on new UK manifesto ...the Campaign for a Fair Society
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.
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’
3. Early support• Family support is counted against you• Families are encouraged to break down• Families are disrespected• Crisis support is expensive and institutional
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’?
5. Against segregation• People need access to all the ordinary opportunities available to citizens...• housing• education• work• leisure
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
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
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