Talk for the University of Lincoln in Hull on personalisation - some of its achievements and the 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 two sides 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
personalisation is 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 state is a good
thing
it’s just designed wrong

6. Photos from
“Christmas in Purgatory”

7. We are not standing on the
shoulders of giants...
...we’ve just stopped digging a hole

9. Good language...
‘inclusion’
‘normalisation’
‘individualised’
‘community’
‘empowerment’
Poor reality

10. In the UK we 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 not free...
...people were not really included.

12. The Spectrum of Services
£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’t make 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. Personalised Transition

21. Jonathan’s story
For the 3 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 of weeks 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 innovators are
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.Most funding is individualised
2.Reduced institutional provision
3.Some extra flexibility
4.More people in control
5.Some extra humility

29. Some real problems
1.Hidden services, hidden budgets
2.Increasing bureaucracy & control
3.Poor engagement with community
4.Growing inflexibility
5.Poor use of service providers

30. Whose money is it?
for services, or for people

31. IB - meant to be clear entitlement...

32. the madness of the 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...
ending care management...

35. madness of support planning

36. Who is the best 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 the best 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 to do less

39. Growing inflexibilities...
1. public money 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 the price of inflexibility
from push to pull economics

45. Personalised support is efficient and
effective
but it has largely been rejected by
systems that prefers standardisation

46. Economic realities

48. • 58% of all 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 and control
• 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 Living not 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 will new 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 information go 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 ￭