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Personalisation - Emerging Challenges
The document discusses the complexities and challenges of personalisation within the welfare state, highlighting both its potential benefits and pitfalls. It critiques the current system for failing to truly empower individuals, particularly those with disabilities, while also addressing the impact of recent funding cuts on these communities. Key themes include the need for genuine independent living, community engagement, and structural reform to ensure fair access and support.
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Personalisation - Emerging Challenges
- 1. Personalisation some emerging challenges Dr Simon Duffy ￭ The Centre for Welfare Reform ￭ University of Lincoln, Hull ￭ 20th April 2012
- 2. There are twosides to everything. If you grab the blade, the best thing will do you harm; the most harmful will defend you if you seize it by the hilt. Baltasar Gracian
- 3. At its best personalisationis a ladder you can climb and leave behind At its worst personalisation is a trap, a confusion and a distraction.
- 4. Key points 1.Long story- Independent Living 2.Some recent achievements 3.Emerging problems 4.Personalisation and the cuts 5.Understanding the next challenge
- 5. The welfare stateis a good thing it’s just designed wrong
- 6. Photos from “Christmas inPurgatory”
- 7. We are notstanding on the shoulders of giants... ...we’ve just stopped digging a hole
- 9.
- 10. In the UKwe made the mistake of thinking that the institution was the building ...we didn’t leave the institution behind, we took it with us
- 11. People were notfree... ...people were not really included.
- 12. The Spectrum ofServices £200,000 £150,000 £100,000 £50,000 £0 Specialist Placements 24 Individual Support Group Homes Specialist Day Services Residential Colleges Nursing Homes Residential Homes Individual Day Supports Day Services Adult Placements Outreach Supports Domicilary Care Residential Respite
- 13. Numbers using services 400 320 240 160 80 0 Specialist Placements 24 Individual Support Group Homes Specialist Day Services Residential Colleges Nursing Homes Residential Homes Individual Day Supports Day Services Adult Placements Outreach Supports Domicilary Care Residential Respite
- 14. Expenditure £15,000,000 £11,250,000 £7,500,000 £3,750,000 £0 Specialist Placements 24 Individual Support Group Homes Specialist Day Services Residential Colleges Nursing Homes Residential Homes Individual Day Supports Day Services Adult Placements Outreach Supports Domicilary Care Residential Respite
- 15. The balance 8% 92% Segregated Services Community Services
- 16. The system doesn’tmake sense It spends people’s money for them on stuff they wouldn’t buy for themselves
- 17. 1972 first Centre for Independent Living 1980s first Direct Payments 1992 Supported Living 1996 Direct Payments Act 2003 In Control 2007 Putting People First
- 18. Government doesn’t lead- it follows - and when government takes over we often lose the plot Change was not inspired by government - it was inspired by powerful ideas.
- 20.
- 21. Jonathan’s story For the3 years before 150 days in hospital - responding to problems with breathing. In the 3 years after leaving hospital he has spent only 2 nights in hospital - for elective dental treatments. Personalised learning - on the job - 2 City & Guilds Qualifications. Saving NHS, LA & Education •Over £100,000 in hospital stays •Over £300,000 in residential care costs •Over £100,000 of funding contributed by the LSC
- 22. A couple ofweeks ago in Sheffield, I met a wonderful woman called Katrina. She's got three disabled sons. The oldest is Jonathan, a charming, warm hearted young man of 19. He can't walk or talk clearly, or feed himself alone. He's had a breathing tube in his neck since he was a toddler.... Now he's doing work with a local charity, attending a music group, has his own personal assistant... Finally as a young man, engaged in life in a way he and his mother never thought possible. Katrina told me with the biggest smile I've ever seen, she said: We've gone from having nothing to having everything. I wish every child's needs would be taken this seriously. Nick Clegg, 17 September 2008.
- 23. The real innovatorsare disabled people & their families John O’Brien
- 26. Professional Gift Model Citizenship Model Individual has deficits Individual has gifts Doesn’t fit in community Community needs them Needs professional help May need help to get in Professionals are experts Individual is expert Professionals take control Individual stays in control INSTITUTION COMMUNITY
- 27. Professional Gift Model Citizenship Model Individual has deficits Individual has gifts Doesn’t fit in community Community needs them Needs professional help May need help to get in Professionals are experts Individual is expert Professionals take control Individual stays in control INSTITUTION COMMUNITY
- 28. Some recent achievements 1.Mostfunding is individualised 2.Reduced institutional provision 3.Some extra flexibility 4.More people in control 5.Some extra humility
- 29. Some real problems 1.Hiddenservices, hidden budgets 2.Increasing bureaucracy & control 3.Poor engagement with community 4.Growing inflexibility 5.Poor use of service providers
- 30. Whose money isit? for services, or for people
- 31. IB - meantto be clear entitlement...
- 32. the madness ofthe RAS...
- 33. SDS Processes Support Planning RAS Care Management Protection/Safeguarding Responsibilities Annual Reviews Joint Assessment Processes Eligibility Criteria & Resource Panels Care Planning Monitoring Systems Comprehensive Assessments Mental Capacity Law Social Care Law for Children and Adults
- 34. rescripting social work... endingcare management...
- 35. madness of supportplanning
- 36. Who is thebest planner? Indi vi dual Fami l y/Fri ends 17% 23% Provid er Broker Soci al Worker 12% 13% 34% N = 801
- 37. Who is thebest organiser? Indi vi dual 9% 16% Fami l y/Fri ends Provid er Broker Soci al Worker 17% 31% N = 774 28%
- 38. simple ways todo less
- 39. Growing inflexibilities... 1. publicmoney fallacy 2. just for services or PAs 3. just what’s in the ‘support plan’ 4. what’s approved by panel 5. not for health, home, school etc... 6. separate accounts, audits etc.
- 41. inefficiency is theprice of inflexibility from push to pull economics
- 45. Personalised support isefficient and effective but it has largely been rejected by systems that prefers standardisation
- 46.
- 48. • 58% ofall cuts target disabled people and people in poverty • 36% of all cuts target disabled people • 24% of all cuts target the 1.9% of the population who need social care - those with the most severe impairments
- 50. • Unfair -target those who are most disadvantaged • Unfair - make an unequal society even more unequal • Unfair - target the groups that didn’t benefit from the economic bubble
- 53. 1.Human rights -not services 2.Clear entitlements - not confusion 3.Early support - not crisis 4.Equal access - not institutional care 5.Choice and control - not dependence 6.Fair incomes - not insecurity 7.Fair taxes - not targeted 8.Financial reform - sustainable
- 54. 1. Human rights •Service systems should just be a means to achieve fundamental 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 • A new constitutional foundation for the welfare system
- 55. 2. Clear entitlements •Control becomes real as resources are truly ‘owned’ by disabled people • Courts use ‘natural justice’ to define entitlements • What RAS does the government use? • These changes will apply beyond social care: health, education and other areas...
- 56. 3. Early support •FACS eligibility creates crises and family breakdowns • Crisis support is expensive and institutional • Having family support is counted against you • Families are disrespected and undermined
- 57. 4. Equal access •Money needs to move from institutional services into the hands of disabled people • People need access to all the ordinary opportunities available to citizens: housing, education, work, leisure
- 58. 5. Choice andcontrol • People make the best decisions • Current restrictions are burdensome and confusing • Individual or budgets are now being corrupted • Why is an entitlement ‘public money’?
- 59. 6. Fair incomes •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% • We live in the 3rd most unequal developed country
- 60. 7. Fair taxes •Charging is special tax levied only on disabled people punishes people on low incomes and benefits (up to 75%) • It is expensive (up to 40%) to organise and raises very little money (£2.3 billion) • Public health and social care is >£130 billion. Private social care is £3.5 billion (2.7%)
- 61. 8. Financial reform •Economy is distorted by economic measures of value and the need for ‘growth’ • Government controls 48% of GDP • Debt is 492% of our economic output • We need more discipline and flexibility
- 62. Key points 1.Independent Livingnot personalisation 2.Progress is real but momentum is slipping 3.System change has been superficial 4.Current cuts target disabled people 5.New challenges are becoming clearer
- 63. Questions 1.What form willnew campaigns take when so many are dependent on the centre? 2.What does local leadership really mean when local government is under attack? 3.How can communities retake the initiative?
- 64. For more informationgo to www.centreforwelfarereform.org These slides are © Simon Duffy 2012 ￭ Publisher is The Centre for Welfare Reform ￭ Slides can be distributed subject to conditions set out at www.centreforwelfarereform.org ￭
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