Personalisationsome emerging challenges  Dr Simon Duffy ■ The Centre for Welfare Reform ■  University of Lincoln, Hull ■ 2...
There are two sides toeverything. If you grab theblade, the best thing will doyou harm; the mostharmful will defend you if...
At its bestpersonalisation is aladder you can climb andleave behindAt its worstpersonalisation is a trap,a confusion and a...
Key points1.Long story - Independent Living2.Some recent achievements3.Emerging problems4.Personalisation and the cuts5.Un...
The welfare state is a goodthingit’s just designed wrong
Photos from“Christmas in Purgatory”
We are not standing on theshoulders of giants......we’ve just stopped digging a hole
Good language...‘inclusion’‘normalisation’‘individualised’‘community’‘empowerment’Poor reality
In the UK we made the mistake ofthinking that the institution was thebuilding...we didn’t leave the institutionbehind, we ...
People were not free...     ...people were not really included.
The Spectrum of Services£200,000£150,000£100,000 £50,000     £0           Specialist Placements   24 Individual Support   ...
Numbers using services400320240160 80  0      Specialist Placements   24 Individual Support      Group Homes             S...
Expenditure£15,000,000£11,250,000 £7,500,000 £3,750,000        £0              Specialist Placements   24 Individual Suppo...
The balance8%     92%            Segregated Services            Community Services
The system doesn’t make senseIt spendspeople’s moneyfor them onstuff theywouldn’t buyfor themselves
1972    first Centre for Independent Living1980s   first Direct Payments1992    Supported Living1996    Direct Payments Ac...
Government doesn’t lead - it follows- and when government takes overwe often lose the plotChange was not inspired bygovern...
Personalised Transition
Jonathan’s storyFor the 3 years before 150 days in hospital -responding to problems with breathing.In the 3 years after le...
A couple of weeks ago in Sheffield, I met awonderful woman called Katrina. Shes got threedisabled sons. The oldest is Jona...
The real innovators aredisabled people & their familiesJohn O’Brien
Professional Gift Model       Citizenship Model Individual has deficits       Individual has giftsDoesn’t fit in community...
Professional Gift Model       Citizenship Model Individual has deficits       Individual has giftsDoesn’t fit in community...
Some recent achievements1.Most funding is individualised2.Reduced institutional provision3.Some extra flexibility4.More pe...
Some real problems1.Hidden services, hidden budgets2.Increasing bureaucracy & control3.Poor engagement with community4.Gro...
Whose money is it?for services, or for people
IB - meant to be clear entitlement...
the madness of the RAS...
SDS Processes               Support Planning                     RAS              Care Management Protection/Safeguarding ...
rescripting social work...ending care management...
madness of support planning
Who is the best planner? Indi vi dual Fami l y/Fri ends         17%                                 23% Provid er Broker S...
Who is the best organiser? Indi vi dual                     9%                           16% Fami l y/Fri ends Provid er B...
simple ways to do less
Growing inflexibilities...1. public money fallacy2. just for services or PAs3. just what’s in the ‘support plan’4. what’s ...
inefficiency is the price of inflexibility     from push to pull economics
Personalised support is efficient andeffectivebut it has largely been rejected bysystems that prefers standardisation
Economic realities
• 58% of all cuts target disabled people  and people in poverty• 36% of all cuts target disabled people• 24% of all cuts t...
• Unfair - target those who are most  disadvantaged• Unfair - make an unequal society  even more unequal• Unfair - target ...
1.Human rights - not services2.Clear entitlements - not confusion3.Early support - not crisis4.Equal access - not institut...
1. Human rights• Service systems should just be a  means to achieve fundamental rights• UN Convention on Rights of Disable...
2. Clear entitlements• Control becomes real as resources are  truly ‘owned’ by disabled people• Courts use ‘natural justic...
3. Early support• FACS eligibility creates crises and  family breakdowns• Crisis support is expensive and  institutional• ...
4. Equal access• Money needs to move from institutional  services into the hands of disabled  people• People need access t...
5. Choice and control• People make the best decisions• Current restrictions are burdensome  and confusing• Individual or b...
6. Fair incomes• The poorest 10% of households have an  income of £6,500• Of which 47% is paid in taxes - highest  rate of...
7. Fair taxes• Charging is special tax levied only on  disabled people punishes people on low  incomes and benefits (up to...
8. Financial reform• Economy is distorted by economic  measures of value and the need for  ‘growth’• Government controls 4...
Key points1.Independent Living not personalisation2.Progress is real but momentum is slipping3.System change has been supe...
Questions1.What form will new campaigns take  when so many are dependent on  the centre?2.What does local leadership reall...
For more information go towww.centreforwelfarereform.org      These slides are © Simon Duffy 2012 ■ Publisher is The      ...
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
Personalisation - Emerging Challenges
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Personalisation - Emerging Challenges

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Talk for the University of Lincoln in Hull on personalisation - some of its achievements and the emerging challenges.

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  • Personalisation - Emerging Challenges

    1. 1. Personalisationsome emerging challenges Dr Simon Duffy ■ The Centre for Welfare Reform ■ University of Lincoln, Hull ■ 20th April 2012
    2. 2. There are two sides toeverything. If you grab theblade, the best thing will doyou harm; the mostharmful will defend you ifyou seize it by the hilt.Baltasar Gracian
    3. 3. At its bestpersonalisation is aladder you can climb andleave behindAt its worstpersonalisation is a trap,a confusion and adistraction.
    4. 4. Key points1.Long story - Independent Living2.Some recent achievements3.Emerging problems4.Personalisation and the cuts5.Understanding the next challenge
    5. 5. The welfare state is a goodthingit’s just designed wrong
    6. 6. Photos from“Christmas in Purgatory”
    7. 7. We are not standing on theshoulders of giants......we’ve just stopped digging a hole
    8. 8. Good language...‘inclusion’‘normalisation’‘individualised’‘community’‘empowerment’Poor reality
    9. 9. In the UK we made the mistake ofthinking that the institution was thebuilding...we didn’t leave the institutionbehind, we took it with us
    10. 10. People were not free... ...people were not really included.
    11. 11. 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
    12. 12. Numbers using services400320240160 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
    13. 13. 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
    14. 14. The balance8% 92% Segregated Services Community Services
    15. 15. The system doesn’t make senseIt spendspeople’s moneyfor them onstuff theywouldn’t buyfor themselves
    16. 16. 1972 first Centre for Independent Living1980s first Direct Payments1992 Supported Living1996 Direct Payments Act2003 In Control2007 Putting People First
    17. 17. Government doesn’t lead - it follows- and when government takes overwe often lose the plotChange was not inspired bygovernment - it was inspired bypowerful ideas.
    18. 18. Personalised Transition
    19. 19. Jonathan’s storyFor the 3 years before 150 days in hospital -responding to problems with breathing.In the 3 years after leaving hospital he has spentonly 2 nights in hospital - for elective dentaltreatments.Personalised learning - on the job - 2 City & GuildsQualifications.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
    20. 20. A couple of weeks ago in Sheffield, I met awonderful woman called Katrina. Shes got threedisabled sons. The oldest is Jonathan, a charming,warm hearted young man of 19. He cant walk ortalk clearly, or feed himself alone. Hes had abreathing tube in his neck since he was a toddler....Now hes doing work with a local charity, attending amusic group, has his own personal assistant...Finally as a young man, engaged in life in a way heand his mother never thought possible. Katrina toldme with the biggest smile Ive ever seen, she said:Weve gone from having nothing to havingeverything. I wish every childs needs would betaken this seriously.Nick Clegg, 17 September 2008.
    21. 21. The real innovators aredisabled people & their familiesJohn O’Brien
    22. 22. Professional Gift Model Citizenship Model Individual has deficits Individual has giftsDoesn’t fit in community Community needs themNeeds professional help May need help to get inProfessionals are experts Individual is expertProfessionals take control Individual stays in control INSTITUTION COMMUNITY
    23. 23. Professional Gift Model Citizenship Model Individual has deficits Individual has giftsDoesn’t fit in community Community needs themNeeds professional help May need help to get inProfessionals are experts Individual is expertProfessionals take control Individual stays in control INSTITUTION COMMUNITY
    24. 24. Some recent achievements1.Most funding is individualised2.Reduced institutional provision3.Some extra flexibility4.More people in control5.Some extra humility
    25. 25. Some real problems1.Hidden services, hidden budgets2.Increasing bureaucracy & control3.Poor engagement with community4.Growing inflexibility5.Poor use of service providers
    26. 26. Whose money is it?for services, or for people
    27. 27. IB - meant to be clear entitlement...
    28. 28. the madness of the RAS...
    29. 29. 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 LawSocial Care Law for Children and Adults
    30. 30. rescripting social work...ending care management...
    31. 31. madness of support planning
    32. 32. 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
    33. 33. 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%
    34. 34. simple ways to do less
    35. 35. Growing inflexibilities...1. public money fallacy2. just for services or PAs3. just what’s in the ‘support plan’4. what’s approved by panel5. not for health, home, school etc...6. separate accounts, audits etc.
    36. 36. inefficiency is the price of inflexibility from push to pull economics
    37. 37. Personalised support is efficient andeffectivebut it has largely been rejected bysystems that prefers standardisation
    38. 38. Economic realities
    39. 39. • 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
    40. 40. • 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
    41. 41. 1.Human rights - not services2.Clear entitlements - not confusion3.Early support - not crisis4.Equal access - not institutional care5.Choice and control - not dependence6.Fair incomes - not insecurity7.Fair taxes - not targeted8.Financial reform - sustainable
    42. 42. 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
    43. 43. 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...
    44. 44. 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
    45. 45. 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
    46. 46. 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’?
    47. 47. 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
    48. 48. 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%)
    49. 49. 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
    50. 50. Key points1.Independent Living not personalisation2.Progress is real but momentum is slipping3.System change has been superficial4.Current cuts target disabled people5.New challenges are becoming clearer
    51. 51. Questions1.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?
    52. 52. For more information go towww.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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