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‘Hopeful adaptation’ in social care:
how adults with learning disabilities are seeking to ‘self-
build’ new spaces of care...
Introduction: A transforming landscape of care
(1996 -) Personalisation emerged as a key international
disability policy g...
Introduction: A transforming
landscape of care
2008 onwards
• Personalisation, prevention and co-production at heart of UK...
Existing research
Existing research
Academic literature – more critical:
• Impacts of cuts > demonization of disabled people (Cross, 2013)
•...
What does it mean to ‘self-build’?
‘Self-build’
• When individuals, with the help of their allies, co-construct their own ...
Participatory research – SPIRIT platform
https://spiritdisabilityplatform.wordpress.com
The idea for this project came fro...
Southampton Advisory Group and Research team co-creating the project logo
Co-creative methods for
capturing people’s lives
Learning to ‘self-build’ – Sarah’s story
A: Mum thinks I’m not ready to move out.
Q: Okay. And how do you feel about that?...
Learning to self-build
A. My Mum is letting me stay on my own when they are going on holiday.
Q: So that’ll be a first for...
Learning to ‘self-build’
FS1: ‘Cause I was scared to get the bus on my own, and mum took me on the bus, that’s
me, I done ...
Learning to self-build
So those people you meet over [in advocacy group], they know where to
go if they think things aren’...
Self-building is…
• Learning new life skills
• Mastering the art of travel
• Managing risk
• Finding out information
• Mak...
Supporting self-
building
Community organisations
(micro-enterprises)
Creating bespoke support
initiatives seeking to
faci...
Getting out group (rural town)
Supporting self-building within
context of austerity
I have every empathy that Social Services are stretched, you know, th...
Supporting self-building within context of austerity
Part of this contract was to do-- there were some expectations in ter...
Conclusion: What would Foucault make of it all?
• In an era of ‘attenuating care’ (Power & Bartlett, 2018) > importance of...
Epilogue
• We are interested in finding out more…
• Is ‘self-build social care’ an appropriate way of thinking about how p...
https://selfbuildsocialcare.wordpress.com/
Andrew Power
a.power@soton.ac.uk
@power_geog
Some references
• Bowlby S, Mckie L, Gregory S, Macpherson I (2010) Interdependency and Care over the
Lifecourse, Routledg...
‘Hopeful adaptation’ in social care: how adults with learning disabilities are seeking to ‘self-build’ new spaces of care ...
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‘Hopeful adaptation’ in social care: how adults with learning disabilities are seeking to ‘self-build’ new spaces of care and support

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Presented by Andrew Power at the NNDR (Nordic Network on Disability Research) Conference in May 2019.

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‘Hopeful adaptation’ in social care: how adults with learning disabilities are seeking to ‘self-build’ new spaces of care and support

  1. 1. ‘Hopeful adaptation’ in social care: how adults with learning disabilities are seeking to ‘self- build’ new spaces of care and support Andrew Power With Melanie Nind, Ed Hall, Alex Kaley, Hannah Macpherson and Andy Coverdale NNDR, 10 May 2019 #SelfBuildSocialCare @Power_Geog
  2. 2. Introduction: A transforming landscape of care (1996 -) Personalisation emerged as a key international disability policy goal, particularly following UN Convention on the Rights of Persons with Disabilities (CRPD 2007) • Led by disabled people > to promote choice and control. • Evident in US, UK, Sweden, Canada and France. Social Care (1980s – early 2000s) Closure of care institutions & growth of community care (group homes, day centres, domiciliary care)
  3. 3. Introduction: A transforming landscape of care 2008 onwards • Personalisation, prevention and co-production at heart of UK social care policy. • Choice and control + empowerment > some people with learning disabilities taking up new community-based opportunities. • For others uncertainty and insecurity: Long-term and extensive cuts to local authority social care and support provision > closure of formal services and buildings.
  4. 4. Existing research
  5. 5. Existing research Academic literature – more critical: • Impacts of cuts > demonization of disabled people (Cross, 2013) • Is personalisation the right policy at the wrong time? (Pearson and Ridley, 2017; Power, 2014) • Gleeson and Kearns (2001): an ‘imagined moral geography’ of communities who are supposed to be able to care • Geographical studies have shown that the reality is often different, and indeed can be hostile to those deemed ‘out of place’ (see Hall and McGarol 2012; Needham 2014) • For some people, austerity has weakened their already small networks – akin to living in a ‘care desert’ (Power & Bowlby, 2018)
  6. 6. What does it mean to ‘self-build’? ‘Self-build’ • When individuals, with the help of their allies, co-construct their own local support networks, activities and identities, from local resources, in a meaningful way. • Perhaps this could be understood as a form of ‘hopeful adaptation’ (Power et al. 2019)? Hopeful adaptation refers to the practice of adapting to adversity, with some promise of it becoming transformative. • ‘Self’ is a relational concept, acknowledging inter-dependence (Bowlby et al., 2010) • Some people are self-building by necessity, in adverse contexts with a lack of state services. social care
  7. 7. Participatory research – SPIRIT platform https://spiritdisabilityplatform.wordpress.com The idea for this project came from SPIRIT (Southampton Platform for Inclusive Research and Ideas Together) Qualitative Study: 4 case-study areas (2 in Scotland; 2 in England)
  8. 8. Southampton Advisory Group and Research team co-creating the project logo
  9. 9. Co-creative methods for capturing people’s lives
  10. 10. Learning to ‘self-build’ – Sarah’s story A: Mum thinks I’m not ready to move out. Q: Okay. And how do you feel about that? A: I told Mum last week I want to move out. She told me it would be too much for me. I need to …look after myself first. Because I don’t know how to clean the bathroom, and Mum told me I had to learn how to do it. Q: So there are some things around the house that you need to learn first before you can move out of home. A: Because I told my mum I want my own space. They’re [mum & stepdad] there with me all the time. Because I’ll do the washing but I need to learn how to iron my clothes. (Sarah)
  11. 11. Learning to self-build A. My Mum is letting me stay on my own when they are going on holiday. Q: So that’ll be a first for you then, to be at home while they go on holiday. But your mum feels that that’s something that you’d be able to do now? A: I’ve got my granny if I want to phone, …and I’ve got my boyfriend, he can come and see me. […] Q: So… you feel you’ll be able to look after yourself, cook for yourself? A: Probably microwave food. I can’t use the oven because I forget to turn it off. Q: Okay, so you can’t use the oven. Is that something your mum’s--, A: I can’t use the hob either in case I burn the house down. (Sarah)
  12. 12. Learning to ‘self-build’ FS1: ‘Cause I was scared to get the bus on my own, and mum took me on the bus, that’s me, I done it on my own now. Q1: So you feel like, so that’s helped you to travel more independently then? FS1: Because my speech is not good, that’s why I was scared to get the bus for the first time, and mum took me, and then I just got the bus by myself. Q1: And then you were fine, yeah. FS1: So I can get the bus by myself to have a day to meet my boyfriend, now my mum trusts me. (Sarah)
  13. 13. Learning to self-build So those people you meet over [in advocacy group], they know where to go if they think things aren’t as they should be. So they can come to us, they can self-refer to us, “Mary, could you help me please? I think I need a new assessment because I want to change my day services.” “I don’t think my direct payments are going right.” Whatever it is, they know where they can go. (Advocate)
  14. 14. Self-building is… • Learning new life skills • Mastering the art of travel • Managing risk • Finding out information • Making friends • Speaking up (asking for help and helping others) • Learning to make decisions • Keeping busy (voluntary and/or paid work, self-advocacy)
  15. 15. Supporting self- building Community organisations (micro-enterprises) Creating bespoke support initiatives seeking to facilitate lives in the community Operating in challenging context of austerity.
  16. 16. Getting out group (rural town)
  17. 17. Supporting self-building within context of austerity I have every empathy that Social Services are stretched, you know, they’ve got no money either, they’re fighting crises, so they can’t put in to preventative work. So, I think that in the meantime, if we set that as a challenge we’ve got to keep going, we fundraise, people are very generous, erm, you know and we rely on a lot of the goodwill of volunteers to support our work so we can stretch what we do further and that’s really important… So it’s about using all our resources the best way we can to ensure our sustainability. (Manager, support initiative, rural area)
  18. 18. Supporting self-building within context of austerity Part of this contract was to do-- there were some expectations in terms of community work. Unfortunately-- and there was a hope that we could find volunteers to be able to do that work. I don’t know why, the volunteering environment has really dried up. It takes a lot of work to manage a volunteer… we don’t have the capacity to do that. (Advocate, support initiative, urban area)
  19. 19. Conclusion: What would Foucault make of it all? • In an era of ‘attenuating care’ (Power & Bartlett, 2018) > importance of new forms, spaces and relations of care and support. • ‘Self-build social care’ – connections, relationships, networks – other people with and without learning disabilities > also about deeper sense of socially-valued role and identity – your place in society. • Signs of hopeful adaptation are varied: at broader level, local initiatives to support community participation are evolving, but others are folding. • Similarly, personal examples of ‘hope’ are evident in some people’s lives, others are more resigned and fed up. (Self-)Advocacy is key to making this difference.
  20. 20. Epilogue • We are interested in finding out more… • Is ‘self-build social care’ an appropriate way of thinking about how people navigate this landscape of support? • What kinds of initiatives are emerging that could be deemed to be supporting individuals to ‘self-build’? And can they help individuals to learn to live inter- dependently and to belong? • Should support initiatives be celebrated in era of austerity? • What role can/should the state play?
  21. 21. https://selfbuildsocialcare.wordpress.com/ Andrew Power a.power@soton.ac.uk @power_geog
  22. 22. Some references • Bowlby S, Mckie L, Gregory S, Macpherson I (2010) Interdependency and Care over the Lifecourse, Routledge. • M Cross Demonised, impoverished and now forced into isolation: the fate of disabled people under austerity - Disability & Society, 2013 - Taylor & Francis • C Pearson, J Ridley Is Personalization the Right Plan at the Wrong Time? Re‐thinking Cash‐for‐Care in an Age of Austerity - Social Policy & Administration, 2017 • Power A, Personalisation and Austerity in the Crosshairs: Government Perspectives on the remaking of Adult Social Care – Journal of Social Policy, 2014, 43 4. • Power, A., & Bartlett, R. (2018). Ageing with a learning disability: Care and support in the context of austerity. Social Science & Medicine, 1-7. • Power, A., Lord, J., & DeFranco, A. (2013). Active Citizenship and Disability: Implementing the Personalisation of Support. (Cambridge Disability Law and Policy Series). Cambridge, GB: Cambridge University Press.

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