1. Personal Budgets and their Impact on Users and Workers
Dr Shereen Hussein
Principal Research Fellow (Chair)
King’s College London, UK
Melbourne, Australia, August 2017

2. Acknowledgment This presentation is based on two studies:
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Acknowledgment
This presentation is based on two studies:
Risk Safeguarding and Personal Budgets (RSPB) study funded by the the National Institute for Health Research, School for Social Care Research
The Longitudinal Care Work Study (LoCS) funded by the Department of Health, Policy Research Programme
I am grateful to other team members, especially to Dr Martin Stevens (PI of the RSPB project)
The views expressed are my own and do not necessarily represent those of the funders

3. Background
The convergence of most welfare models towards mixed economy of care
Marketisation and the changing role of the state
Direction of travel towards personalisation
Evolving from a person-centred approach and tailored services but diverging differently
Relevance to current developments in Australia
Especially the National Disability Insurance Scheme and similar trends of marketisation
The balance between choice and safeguarding
The changing structure of the care market and viability of services

4. Personalisation Been developing since the 1980s
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Personalisation
Been developing since the 1980s
Distinct from ‘person-centred’ approaches to care
Twin drivers
Promoting flexible services
Reducing the role of the state
Paralleled with marketisation of care
Outsourcing, commissioning of services
Commodification of care
No discussion of safeguarding and potential risks

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Cash-for-Care
Cash-for-care is one of the mechanisms for personalisation
Allocated budgets
Provided directly in cash to the user, ‘client’, ‘direct payment’
Managed by the state: ‘managed personal budgets’
Provided through a voucher scheme, e.g. the Netherlands
Arrange services by the local authority within the allocated budgets

6. Personalisation and safeguarding
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Personalisation and safeguarding
Opinions divided:
Some argue it enhances users’ safety
Through increased empowerment, choice and control
Some evidence of increased risks among certain groups
Particularly in relation to higher exposure to financial and physical abuse
Statement of principles – Empowerment a key aim of safeguarding – DH 2011, 2013
The English Care Act 2014, ‘duty of care’ to all service users not only those funded by the state
The effective integration of safeguarding and personalisation contains the seeds for a transformation of care, not just the prevention of abuse and neglect. (Warin,2010 cited by Carr, 2010)

7. Why there could be concerns?
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Why there could be concerns?
Recruiting and firing workers
Non-regulated workforce, responsibility for checking qualifications and background
Lack of intervention powers
The environment of work
Users’ own home
Lack of supervision
Easy prey?
Loss of collective ‘voice’

8. Personal budgets and safeguarding
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Personal budgets and safeguarding
What are the evidence?

9. RSPB study: Research Questions
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RSPB study: Research Questions
Is there any evidence that abuse (including neglect) is more or less likely (or has a different form) amongst PB holders than non-PB holders?
What is the extent of awareness and understanding amongst safeguarding practitioners and care coordinators (or similar) in local authorities?
What is the extent, availability and quality of support offered to PB (in particular DP) users or their proxy budget holders?
What do practitioners, budget holders and their carers consider ‘best practice’ in minimising risks of abuse?

10. RSPB: Methods Analysis of Safeguarding Adults Annual Reports
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RSPB: Methods
Analysis of Safeguarding Adults Annual Reports
Secondary analysis of national and local data
Abuse of Vulnerable Adults (AVA) returns (aggregate data)
Referrals, Assessments and Packages of Care (RAP) and the Adult Social Care Combined Activity Returns (aggregate data)
Local data (individual records)
Interviews with
Budget holders and proxy budget holders (n=12)
Safeguarding coordinators and team members (n=11)
Elected members and senior managers (n=5)

11. RSPB Key Findings: Levels of referrals
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RSPB Key Findings: Levels of referrals
Analysis of aggregate national data indicates no evidence of strong relationship between the uptake of personal budgets on the local authority level and the volume of referrals or repeated referrals.
There are tentative suggestions of higher levels of referrals and repeated referrals in significantly rural areas
On the individual level, the analysis suggests some relationship between receipt of personal budgets (PB), particularly direct payment (DP), on the likelihood of an alert to be reported on AVA returns.

12. RSPB Key Findings: Source of referrals and relationship to abuser
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RSPB Key Findings: Source of referrals and relationship to abuser
no significant associations between level of uptake of PB and distributions of referrals from domiciliary care staff, referrals made by users’ family members or self- referrals
Local authorities located in areas with low income- deprivation scale (more wealthy) and low unemployment scale, have slightly wider distributions of self-referrals
Local data analysis indicate a positive significant association between receiving self-directed support and the likelihood of alleged abuser to be domiciliary care staff

13. RSPB Key Findings: Nature of Alleged Abuse
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RSPB Key Findings: Nature of Alleged Abuse
The most common form of alleged abuse in England is physical abuse followed by financial abuse
On the aggregate level we found no significant relationships between the percentage of users’ on personal budgets and
Individual referral records’ analysis shows
Significantly higher likelihood of allegations of financial abuse among users on self-directed support but not users receiving direct payments
The model also indicates an increased likelihood of financial abuse among users with physical disabilities regardless of whether they receive personal budgets or not.

14. RSPB: Main themes from the interviews
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RSPB: Main themes from the interviews
Poverty, rather than PB or DP, can be a driver for abuse
Could be facilitated by the existence of DP
‘I think, there were lots of cases to be honest, where people are doing things to people, bad things, that ordinarily they may not do if they weren’t quite so desperate themselves’. 02 Social Worker JW05
Limited ability for professional (social workers) monitoring
Choice and control of users may reduce risk
Risks associated with the user employing PA
It could be anybody. The risk is who are they employing? What experience do these people have? 01 Team Manager KS03

15. RSPB: Professionals’ Views on Minimising Risk
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RSPB: Professionals’ Views on Minimising Risk
Varying control over Direct Payment
e.g. offering part of the Personal Budget as a Direct Payment
DPs as a response to risky situations
Monitoring and review – financial monitoring
Building in safeguards – normal practice
if we are satisfied that we believe the person can manage the direct payment or a relative can manage it for them and that relative appears to be suitable, then we will allow the direct payment to go ahead. And that’s just part of general practice Senior manager MS02

16. RSPB: Users’ Experience
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RSPB: Users’ Experience
Semi-structured interviews with 12 people receiving PB with recent safeguarding investigation
Three main themes:
Levels of information and awareness
Very few were clear on the process of funding
None reported receiving any information related to potential risk
Not all were aware that they have been subjects of referrals
Safeguarding concerns and processes
Come had multiple (concurrent) concerns
Most concerns associated with care staff and PAs
Choice and control
Only 3 were given choice about the funding arrangement
Some, but not all, were actively involved in deciding on the care package
Eight participants reported multiple incidents of abuse occurring over the same time period. For example, one participant reported concurrently experiencing an inappropriate (sexually motivated) advance from a care worker, poor quality care and bullying from other support staff, while another concurrently experienced neglect, financial abuse, intimidation and violence.
Most of those who received a managed PB had no recollection of being offered any other funding option. This may reflect the sample and possible problems with recalling conversations around options.

17. The Longitudinal Care Work Study
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The Longitudinal Care Work Study
Personalisation in practice

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Data and Methods: LoCS
Draws on qualitative interviews collected from 300 employers, frontline care workers and service users
229 with care home and home care managers (n=112) and staff (n=117)
89 with service users
Repeated over time (average 2 years between interviews at the same work place)
Some interviews were with the same participants
Part of a larger study that included a large repeated survey of care staff
Thematic qualitative analysis using an initially developed coding frame by the team

19. LoCS: Aims of the Analysis
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LoCS: Aims of the Analysis
How do care home and home care managers’ understandings of personalisation reflect the balance between person-centredness and the move to a more commercial or ‘personalised’ approach?
How do both concepts, personalisation and person- centred care, impact on the businesses providing social care, within increasingly tight financial constraints?

20. LoCS: Findings Four themes emerged from the analysis:
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LoCS: Findings
Four themes emerged from the analysis:
Awareness of personalisation and understanding its potential impact
Adapting services
Contracting
Impact on business viability

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LoCS: Awareness of personalisation and understanding its potential impact
Almost half of all participants interviewed at T1 ( ) were unaware of the personalisation agenda at all
About half of the care home managers and frontline care home staff (who had heard of personalisation) interviewed at T1 and T2 ( ) equated personalisation with person-centred approaches
Personal budgets were not applicable to care homes at that time
Some questioned the suitability of personalisation to some users’ groups especially older people
About two thirds of the home care managers and staff who understood personalisation, interviewed at T1 and T2 identified personalisation with personal budgets or direct payments
Focus on how the funding is paid rather than tailoring care itself

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We’ve just been recently to a conference last week and a lot of the providers are unsure of how it’s going to work. I really endorse that there is a place for it. I’m not sure with our client group or our current client group [older people] that they will—A, they don’t understand it and B, they don’t want the change.” (Home Care Manager T1)
‘when you actually get to this stage in life, sometimes there aren’t many options’ (Care Home Manager T1).
“They are actually, not managing at home, but have been managing at home for far longer than they should have done, because of this personalisation which is the driving force.” (Care Home Manager T1)
a small number of care home managers suggested that prior to moving to a care home, many older people were unlikely to want to manage their own care arrangements as they were becoming very frail
Others reflected that the older people they encountered were struggling to live at home, especially under the new type of budgetary arrangement, as their needs were too complex
It means they are getting the money and they are able to choose their care and who gives their care.
Home Care Staff 187 T2 2014

23. LoCS Findings: Adapting Services
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LoCS Findings: Adapting Services
Care homes:
Muddling person-centred approaches with personalisation
Concerns over possible decommissioning of some care homes, especially for people with learning disabilities
Especially at T2
Some considered changing the services to align to new policy (e.g. supported living service)
Complexities in working with care agencies etc.

24. LoCS Findings: Adapting Services
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LoCS Findings: Adapting Services
Non-residential services:
Few fundamental adaptations were required
Some identified the ability for workers to be flexible in relation to care tasks – permitting more autonomy and discretion for workers
Some concerns over the viability of certain services if users would purchase on individual bases because of absence of infrastructure
E.g. music or physio-therapy

25. LoCS Findings: Contracting
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LoCS Findings: Contracting
LA moving away from ‘block contracting’
No guarantee of number of hours or beds
Uncertainty – would enough users choose their services?
Choice led to increased demand in some cases
“What we’ve found now is because the block contracts have ended, a lot of clients can choose where they go, so they’re asking to come to us because they weren’t happy where they were, which is good.” (Home Care Manager T2)

26. LoCS Findings: Business Viability
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LoCS Findings: Business Viability
DP and individual purchasing might have resulted in cuts to the hourly rates for services
Questions around the ‘real’ ability of service users to ‘shop around’
Whether people with various disabilities or frail older people
Impact of competitive and uncertain commissioning on the nature of interaction between services and service users
Some questioned whether ‘personalisation’ is just an attempt to save money
Associated austerity measures
Choice could be reduced by the reliance on the market
The move to a more competitive and uncertain commissioning process meant that providers had to engage in direct marketing to attract customers, which was a new development for some. This could be made more difficult by the continuing role of the local authority, in managing referrals, which restricted the impact of marketing and potentially threatened the future of the business, as described by this care home manager:

27. Discussion Future Social Service Institute & RMIT
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Discussion

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Discussion Points
Relevance to current developments in Australia with the introduction of NDIS
Potential interventions to reduce risks while maintaining choice and control
Service users and their informal carers as partners and co- producers
The role of professional staff, regulators and training bodies
Planning and adaptation care services
The role of technology within these equations
Potential and challenges

29. Future Social Service Institute & RMIT
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References
Ismail, M., Hussein, S., Stevens, M. Woolham, J, Manthorpe, J., Baxter, K., Samsi, K. and Aspinal, F. (2017) Do personal budgets increase the risk of abuse? Evidence from English national data. Journal of Social Policy. 46, 2, 291–311.
Stevens, M., Moriarty, J., Manthorpe, J., Harris, J., Hussein, S. and Cornes, M. (Forthcoming) Performing personalisation in Adult Social Care – the impact on care providers. Social Policy and Administration
Stevens, M., Woolham, J., Manthorpe, J., Aspinal, F., Hussein, S., Baxter, K., Samsi, K., Ismail, M. (2016) ‘Implementing safeguarding and personalisation in social work: findings from practice’, Journal of Social Work. doi: / , 28th May 2016.

30. Shereen.hussein@kcl.ac.uk @DrShereeHussein 00 44 2078481669
Future Social Service Institute & RMIT
@DrShereeHussein 31/08/17
@DrShereeHussein