Can personalisation be a reality for frail older people? John Woolham

1. Can personalisation be a reality for frail older people? John Woolham

2. Can personalisation be a reality for frail older people? Structure • Definition of terms • Context of personalisation and personal budgets • What evidence do we have about the impact of personal budgets on the lives of older people • Conclusions and challenges

3. Can personalisation be a reality for frail older people? Definition of terms Personalisation: nuanced definitions? ‘Personalisation means thinking about care and support services in an entirely different way. This means starting with the person as an individual with strengths, preferences and aspirations and putting them at the centre of the process of identifying their needs and making choices about how and when they are supported to live their lives’. Carr (2011) p. 3. ‘Individuals not institutions take control of their care. Personal budgets, preferably as direct payments are provided to all eligible people. Information about care and support is available for all local people, regardless of whether or not they fund their own care’ DH Vision for Social Care Nov. 2011 p. 8.

4. Can personalisation be a reality for frail older people? Definition of terms • Personalisation: an elusive policy aspiration over last quarter of a century • Disability rights in USA • Case /Care Management • Social model of disability • Valuing people • Personhood & Kitwood’s work • Core social work values • If personalisation is the ends, SDS, DP,PB, & IB are the means.

5. Can personalisation be a reality for frail older people? Context • Personal budgets & SDS another means of achieving: • personalisation • empowerment & control • Citizenship • choice • Also claimed it will save a lot of money • Evidence base growing but key policy decisions e.g. Transformation Grant (2008) were made without the benefit of much evidence • Not just social care: now being introduced within the NHS for long term conditions.

6. Can personalisation be a reality for frail older people? Advocates of personal budgets • Demos/Leadbeater • Critique of public services as disempowering and inefficient • Personal budgets a way of empowering and enfranchising people - • Choice and consumer control • Saving the public purse • In Control: Waters, Duffy, Poll. • A coherent programme for change in social services through SDS and PB – emerged from successful use of personal budgets for adults with learning disabilities • Highly influential amongst policy makers and in local government

7. Can personalisation be a reality for frail older people?Critics and dissenters • Clarke (2006, 2008) • choice not always a good thing • Proper role of public services isn’t necessarily about delivering choice • Ferguson (2007) • transfer of responsibility/risk from state to individual • Beresford (2009) • proper funding is a precondition for success. • Barnes (2011) • ‘‘Careandprotection’ is the booby prize if people can’t exercise ‘choiceandcontrol’’.

8. Can personalisation be a reality for frail older people? Early evidence • Local authority case studies e.g. • http://www.in-control.org.uk/resources/research-and-evaluation/your-support,-your-way-richmond.aspx • http://www.incontrol.org.uk/media/3196/this%20time%20its%20personal%20northamptonshire.pdf • http://www.in-control.org.uk/media/3190/steering%20my%20own%20course%20report.pdf • In Control evaluations (x3) • First two studies arguably more influential than deserved • Evangelists for SDS and personal budgets? • Model based on successful work with younger adults with learning disabilities • Small numbers, no specific focus of impact on older people.

9. Can personalisation be a reality for frail older people? Later evidence • IBSEN (2008) • the best study to date • Suggested negative impact of IB on older people • Speculated that this was because managing a budget caused stress

10. Can personalisation be a reality for frail older people? Later evidence • DH: Making personal budgets work for older people • Picked up on qualitative evidence from IBSEN that older people didn’t want the additional burden of managing a personal budget • 2008 guidance – upbeat reflections on what older people interviewed in IBSEN said they wanted • Case study and anecdotal material from staff (not older people!) about ‘best practice’ – e.g. Changing staff attitudes, developing flexible and individual solutions, providing more choice over services and support and how money is managed. • 2010 guidance – success criteria for personal budgets for older people – evidence coming from local authorities seen to be ‘pathfinders’ • Newbronner et.al. Keeping personal budgets personal (SCIE 2011) • Qualitative study of best practice in implementing personal budgets – based on views of older people and people with mental health problems. Reported on suggestions older people were ‘steered away’ from getting their budget as a Direct Payment.

11. Can personalisation be a reality for frail older people? Evidence from own research • Design • methods • objectives (satisfaction, impact & outcomes)

12. Can personalisation be a reality for frail older people? Evidence from own research: key findings • Budget holders overall were more likely than traditional service users to report improvements in • Their personal health, • feelings of personal safety inside and outside their home, • the level of control they had over their support, • the extent to which they felt they were treated with dignity, • their social life (they were more likely to say it had improved), • overall levels of satisfaction with services and support • But for older people, the story was not so positive....

13. Can personalisation be a reality for frail older people? Evidence from own research: key findings • Budget holders received more money than traditional service package users (44% more overall). • Differences were much greater for some care groups: (111% for older people).

14. Can personalisation be a reality for frail older people? Evidence from own research: key findings The difference between ‘traditional’ and budget holder groups was slight amongst older people, and large amongst people aged under 65 years

15. Can personalisation be a reality for frail older people? Evidence from own research: key findings Bootstrapping was used to plot cost/benefit data on a quadrant graph. Data above the horizontal line = worse than average. Data to the right of the vertical line = more expensive than average. BAD GOOD

16. Can personalisation be a reality for frail older people? Evidence from own research: comparing costs & benefits for younger and older people: budget holders only ADL and GHQ scales were used to assess outcomes. Younger budget holders (on left) had better outcomes than older people (right) on both ADL and GHQ scales. Costs were also greater

17. Can personalisation be a reality for frail older people? Evidence from own research: comparing costs & benefits budget holders with ‘traditional’ package users: older people only: ADL and cost scores for older respondents 65+ comparing bootstrapped data for ‘traditional’ package users (left) and budget holders (right). GHQ and cost scores for older respondents (65+ only) comparing bootstrapped data for traditional package users (left) and budget holders (right). IBSEN found no benefit for older people. My study suggests limited benefit but greater cost.

18. Can personalisation be a reality for frail older people? What do these findings tell us about the use of personal budgets for older people? • Budget holders were more likely to report improvements in health, feelings of personal safety, control over their support, being treated with dignity that their social life had improved, and less likely to be experiencing mental distress. But • Impact was differential – younger adults had better outcomes on the measures used. For older people differences between traditional service users and budget holders were much less marked.

19. Can personalisation be a reality for frail older people? What do these findings tell us about the use of personal budgets for older people? • Costs were much greater for budget holders: • If budget holder costs were equivalent to ‘traditional’ packages, would this lead to poorer outcomes for budget holders? • If costs of ‘traditional’ packages were increased commensurately with budget holder costs, would this lead to better outcomes for ‘traditional’ package users?

20. Can personalisation be a reality for frail older people? Summing up • Current evidence is mixed. • Larger quantitative studies suggest older people fare less well as budget holders but aren’t clear why. • Smaller qualitative studies have focused on what needs to be done to make budgets work for older people but findings are less reliable. • More spending power didn’t make much difference to outcome in my study • Stress and levels of responsibility can probably be reduced with support (Newbronner et.al) • Additional support will cost money. Local authorities are cutting personal budgets because of the government’s austerity strategy

21. Can personalisation be a reality for frail older people? The Community Care/Unison survey 2011 • 83% said cuts to adult care budgets in their areas would impede the operation of personal budgets. • 48% thought that personal budgets were not of sufficient value to help users meet their needs. • 33% said resources had been the greatest barrier in making progress with implementing personalisation. • 44% said people were generally buying the same kinds of support under personal budgets as under traditionally commissioned packages of care. ADASS has also reported that only 1/3 get a budget as a direct payment – for others it’s managed on their behalf by the SSD. Where it’s managed it may not always be ‘transformative’.

22. Can personalisation be a reality for frail older people? Does the ‘model’ work for older people? • What it means to be a citizen – and rights, roles and responsibilities may be different at age 85 to 35: ‘There is a risk that people in later life are being squeezed into a ‘one-size-fits-all’ model of personalisation designed with and for younger people with physical and or learning disabilities’ ‘In discussion of personal budgets, much has been made of the way in which control over the resources available for their care enhances the ‘citizenship’ of disabled people. But for older people, achieving full citizenship is not the ‘aim’ in the same way that it may be for many younger disabled people. Most older people have already experienced citizenship in the form of an active role in family, work and community life: it is not an unrealised aspiration’. Orellana 2010.

23. Can personalisation be a reality for frail older people? Three challenges • Are there better ways of achieving personalised services for some people than offering personal budgets? • If everyone has to have a personal budget, how can it be spent in ways that lead to the personalisation of care and support: if it’s managed by someone else does this always mean it’s less personalised? • Are the costs of providing some groups with the level of support they are likely to need anywhere close to being realised?

24. Can personalisation be a reality for frail older people? Selected references Beresford, P., (2009) Whose Personalisation? Compass Think Piece No. 47. Carr, S. (2011) Personalisation: A Rough Guide (2011) SCIE., London. Carr, S. (2007) Choice, Control & Individual Budgets: Emerging themes (2007) SCIE., London Clarke, J., Smith, N., & Vidler,E., (2006) The Indeterminacy of Choice: Political, Policy and Organisational Implications Social Policy & Society 5.3. p 327-336 CUP. Clarke, J., Newman, J. & Westmarland, L., (2008) The Antagonisms of Choice: New Labour and the Reform of Public Services Social Policy & Society (7) p 245-253 CUP Glendinning C., et. al (2008) IBSEN Evaluation of the Individual Budgets Pilot Programme SPRU, University of York. Hatton, C., Waters, J. et al. (2008) A Report on In Control’s Second Phase Evaluation and Learning 2005-07 (2008) In Control Publications, London. Newbronner, E., et.al. (2011) Keeping personal budgets personal: learning from the experiences of older people, people with mental health problems and their carers Adult Services Report 40. SCIE, Orellana, K., (2010) Personalisation in practice: lessons from experience Making personal budgets, support Planning. Age UK, London. and brokerage work for people in later life Poll, C., Duffy, S., et al A report on In Control’s First Phase 2003-05 (2006) In Control Publications, London. Woolham, J., & Benton, C., (2012) The Costs and Benefits of Personal Budgets for Older People: Evidence from a Single Local Authority British Journal of Social Work Advance Access published July 20, 1–20 doi:10.1093/bjsw/bcs086.