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

Acknowledgment This presentation is based on two studies: Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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

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

Personalisation Been developing since the 1980s Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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

Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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

Personalisation and safeguarding Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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)

Why there could be concerns? Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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’

Personal budgets and safeguarding Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 Personal budgets and safeguarding What are the evidence?

RSPB study: Research Questions Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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?

RSPB: Methods Analysis of Safeguarding Adults Annual Reports Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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)

RSPB Key Findings: Levels of referrals Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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.

RSPB Key Findings: Source of referrals and relationship to abuser Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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

RSPB Key Findings: Nature of Alleged Abuse Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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.

RSPB: Main themes from the interviews Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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

RSPB: Professionals’ Views on Minimising Risk Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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. 01 Senior manager MS02

RSPB: Users’ Experience Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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.

The Longitudinal Care Work Study Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 The Longitudinal Care Work Study Personalisation in practice

Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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

LoCS: Aims of the Analysis Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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?

LoCS: Findings Four themes emerged from the analysis: Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 LoCS: Findings Four themes emerged from the analysis: Awareness of personalisation and understanding its potential impact Adapting services Contracting Impact on business viability

Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 LoCS: Awareness of personalisation and understanding its potential impact Almost half of all participants interviewed at T1 (2010-2012) 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 (2012-2014) 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

Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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 176 2009 T1) ‘when you actually get to this stage in life, sometimes there aren’t many options’ (Care Home Manager 3 2009 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 10 2009 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

LoCS Findings: Adapting Services Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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.

LoCS Findings: Adapting Services Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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

LoCS Findings: Contracting Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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 172 2011 T2)

LoCS Findings: Business Viability Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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:

Discussion Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 Discussion

Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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

Future Social Service Institute & RMIT @DrShereeHussein 31/08/17 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: 10.1177/1468017316652001, 28th May 2016.

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