Empowering Through Personal Assistance: Possibilities and Challenges in Welfare Politics

1. Personal assistance as part of changing welfare politics – possibilities and challenges Karen Christensen National conference on disability studies Helsinki, 9 – 10 June 2016

2. Discussion based on: • Comparative study – personal assistance in Norway and the UK, carried out 2005/2006 • Comparative study N/UK – migrant care workers in social care, particularly personal assistance, carried out in 2012/2013 • Research from a Nordic network, including e.g. Ole Petter Askheim, Ingrid Guldvik, Jan Andersen, Agneta Hugemark, Hans Bengtsson and Inge S. Bonfils

3. An example from a Norwegian nursing home Activation policy push in all long-term care: -Old man: Can I get a slice of bread? -Staff: No, go and get it yourself! [He then went to his room, not eating more.] (From a debate book by Runar Bakken (2014): The fear of old age) The personal assistance scheme avoids this

4. Long-term care history - NorwayOne for older people, one for disabled people

5. Long-term care history - Norwayolder people - disabled people cont.

6. Outline from this pointPossibilities and challenges • History of PA in the Scandinavian countries • Between a rights discourse and market discourse • The Norwegian case • From the user’s perspective • Empowerment (different kinds) and barriers • From the care worker’s perspective • Career versus risks • Relationships – disabled people and their PAs • Symmetric versus asymmetric relationships • Conclusion

7. Personal assistance in S, N, DK Askheim, Bengtsson & Bjelke 2014

8. PA – between different discourses Rights discourse Independent living Social movements focusing on rights for all citizens Social model Selfdetermination – influencing own life Consumer discourse New Public Management Choices (market) I individual responsibility Individual freedom and rights Consumer friendly provision of services

9. The direction in S, N and DK Sweden: clearest fusion of market and rights model -individual rights, direct payments organized, free choice of employer - now conflict: reregulation by the state (due to high costs) versus users’ no-regulation Norway: towards market and rights model -the target groups is extended (user don’t need to be manager her/himself) -more private companies included -individual right for some Denmark: towards market-based model -from paternalism to a market based model (including now companies and cooperatives); the activity requirement is weakened – no rights discourse

10. The Norwegian case – how does BPA fit into the general social care sector development? From the 1990s: Social care sector – NPM impact • changing the role of welfare service users: • From passive receivers to active citizens – the idea of independence and more user-involvement • In general: personalisation policies • Leaving traditional institutions – home based services or home-like institutions • Introducing purchaser-provider model (to implement free choice of provider; municipal contracts with for-profit providers, also later for BPA, standardizing the assessment process)

11. A right to BPA – since 1 Jan. 2015 A right to BPA (Health and Social Care Act § 3-2) for some: -below 67 -not including services requiring two workers at the same time -not including night services -the user should have long-term (two years) and comprehensive needs for assistance (minimum 32 hours/week) -those needing minimum 25 hours per week could have a right to BPA too; condition: that the municipality can document that BPA is of lower cost than other non-user-controlled services Challenges: -Individual right – weakening the collective fight? -Will the assessment of the right move closer traditional services (when assessed in standardized purchaser units) -Will the assessment be even more a negotiation? -Will there be more control of how BPA is used by disabled people? … the unknown

12. User’s perspective – the positive ‘difference’ From ULOBA’s web site (http://www.uloba.no): «With BPA you can control your every day life on your own» Disabled woman (N): …I still have night staff and home nursing services, but the difference is that I now have one person in the middle, who can do almost everything ... it is so wonderful in a way. Then you don’t need to think, ok she is a home nurse, she is only here to take me up from bed, this is the biggest difference … Also, I started feeling more normal than I did before, because now I can say to my friends that I just take with me an assistant, and then we can go to a café. (Christensen, 2009)

13. But what is empowerment? • Resistance – fighting against authorities, social model understanding, professionals part of an repressive system – taking over oneself • Consumer choice – the right to influence own services – NPM ideas, choice of assistants, choice of providers • Co-production – new top-down approach – using the resources available, equal partners in developing the services • Governmentality – disciplination of users (Bonfils & Askheim 2014) Historical line? From resistance against the system to incorporation into the values of the dominant co-partner/the welfare state?

14. Care worker’s perspective • Still a historical root in female care in families • Low status (care) work • Feministic perspectives involved here Structural phenomenon maintaining this: Flexibility for the disabled person: - a full time job shared by three workers – part time work - confidentiality also hinders full time jobs Training in the job by the disabled person: - to avoid health-oriented workers, the workers are often unqualified (for this work) - high turnover – many move on – no professional career

15. New (alternative) user-care worker relationships • BPA scheme is an alternative – untraditional • The user supposed to have more power • Requirement of the disabled person to be a manager • They can be employer themselves too • The user chooses her/his care workers – can avoid those not fitting into what is desirable • This all effects the type of relationship – but depending on context (e.g. employee rights on a labour market)

16. Relationship typologies Master-servant-relationship Working-relationship – PA often in live-in work A-sym-metric Companion-ship Friendship UK UK Professional relationship Friendship and working-relationship Sym-metric N Friendship Emotional Intimate Christensen 2012; Christensen & Guldvik 2014

17. Conclusion • BPA has brought into the social care sector an important change – questioning professionalism and institutions standardizing people’s lives when needing help • Social movement based fight – from below • Creating an alternative to traditional care • But there are a range of challenges: • The risk of being used as the welfare state’s co-producers • The risk of developing too emotional relationships • The risk of hindering professional careers • More general: the risk of individualizing the future fight for independent lives