1. Self directed support and personal budgets – panacea or problem? A paper delivered at the 12 th UK Joint Social Work Education Conference with the 4 th UK Social Work Research Conference Guy Daly & John Woolham

2. SDS & personal budgets: panacea or problem? Structure Background Theoretical explanations Findings from an empirical study –Methods –Results –Discussion Policy antecedents and wider questions Conclusions

3. Introduction – PBs, citizenship and public accountability PBs have become synonymous with personalisation PBs may not be the means to the end of personalisation for all service users PBs for some service users may enhance their market/civil rights but at the expense of the social rights of others PBs are part of reconstruction of citizens as citizen-consumers with market democracy to secure public accountability But still require public stewardship how public social care is provided for one citizen has implications for others who may be on the receiving end of a distorted quasi or unfettered ‘pure’ market

4. Background Health and social care policy continues to move increasingly towards greater service user choice and personalisation (DH, 2005, 2006, 2008a&b, 2009a&b) “We will extend the greater roll-out of personal budgets to give people and their carers more control and purchasing power.” (HMG, 2010) ‘choice and control’ are seen to be empowering (Duffy, 2003; Leadbeater, Bartlett & Gallagher, 2008) Critiqued (Beresford, 2009; Carr, 2009; Clarke et al 2006, 2007; Daly, 2009b) Research findings (IBSEN - Glendinning et. al, 2008; Daly & Roebuck, 2009)

5. THEORETICAL EXPLANATIONS - CITIZENSHIP, ACCOUNTABILITY AND SOCIAL CARE Citizenship T H Marshall: civil, political and social rights Diminution of social rights but paradoxical enhancement of civil/market rights for some? Public accountability Gyford: from representative democracy to market, delegate and participatory democracy Does the development of PBs support the move to market democracy?

6. SDS & personal budgets: panacea or problem? Findings/methods –Quasi-experimental design comparing budget holders and non-budget holders –Samples & responses –Method of data collection –Based on ‘In Control’ 7 principles – extent to which principles were being implemented in roll-out.

7. SDS & personal budgets: panacea or problem? Findings/results 1.The right to independent living (people with disabilities should get the help they need to enable them to overcome barriers to fulfilling their role as citizens). –SDS users did better –Large numbers didn’t fully get what they wanted/needed –Older people were less likely to get what they needed compared to others

8. SDS & personal budgets: panacea or problem? Findings/results 2.The right to a personal budget (the right to have direct control over funding for care and support) Over a fifth of budget holders had no say over how money was spent (capacity or assumptions) Older people less likely to feel they had the final say than others Younger adults with physical disabilities were more likely to say they had the final say than others

9. SDS & personal budgets: panacea or problem? Findings/results 3. The right to self determination (the ability to make choices and take decisions). In relation to basic tasks of everyday living – bathing, washing, eating: Budget holders less likely to say they had to compromise over ‘when’ Budget holders less likely to say they had no choice Substantial minority of budget holders could still not exercise choice Older people who were budget holders were more likely to feel choice was compromised or that they had none. 4. The right to accessibility (information about services, support, rules and regulations need to be clear and transparent) Budget holders were more likely to feel they’d had enough information Younger physically disabled budget holders were more likely to feel they’d had enough information – older people were least likely.

10. SDS & personal budgets: panacea or problem? Findings/results 5. The right to flexible funding (money made available should be spent as creatively and flexibly as the budget holder desires). Budget holders were more likely to feel they’d had enough help compared to traditional service users Older people and people with learning disabilities were least likely to feel they’d been given sufficient help.

11. SDS & personal budgets: panacea or problem? Findings/results 6. The principle of accountability (Budget holders should explain their decisions and what they have learned) Budget holders were more likely to feel their opinions had been sought Amongst budget holders, people with LD were more likely to feel their opinions had been sought but many/most of these would have been carers(!) Older people were less likely to feel they’d shared their views about care and support with anyone recently. 7. The principle of capacity (Budget holders’ contribution to planning and managing support should be optimised) Budget holders were more likely than traditional service users to feel in control of the things paid carers did for them, fewer older people felt in control compared to younger budget holders.

12. Deeper Questions are particular service users’ civil rights enhanced by SDS or PBs? are particular service users’ or care groups’ social rights diminished by PBs or SDS? are there greater opportunities for 'market democracy’ via the development of SDS and PBs?

13. Do SDS and PBs enhance civil / market rights? equivocal evidence that SDS or PBs enhance civil or market rights for particular care groups less the case for older service users, because.... social care markets may be less developed for older people? or older people less interested in PBs or SDS? so, need to de-couple relationship between personalisation and PBs for some service users / groups

14. SDS and PBs diminish social rights? if don’t decouple the relationship between personalisation and PBs, social rights to care may diminish for some service users / groups service users without SDS or PBs may end up with the rump of provision once the market-based care providers have ‘cherry picked’ the customers with PBs or SDS service users with PBs may also distort the nature of provision with the residual provision no longer being cost effective (e.g. day care if there is a reduced demand for it)

15. Market Democracy and SDS and PBs market democracy is seen to be a replacement for or enhancement of traditional representative democratic structures we have seen examples of greater control by service users who have SDS but more the case for particular care groups older users in receipt of SDS, for example, have not reported significant increases in levels of control SDS and PBs may enhance some service users’ opportunities for market democracy to a greater extent than for other care groups