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Ordinary hope and misplaced pillars of hope in the lives of Learning Disabled people in England and Scotland

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Presented by Hannah Macpherson at RGS-IBG Annual International Conference 2019 in London, August 2019.

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Ordinary hope and misplaced pillars of hope in the lives of Learning Disabled people in England and Scotland

  1. 1. Ordinary hope and misplaced pillars of hope in the lives of Learning Disabled people in England and Scotland Hannah Macpherson, with Andrew Power, Melanie Nind, Ed Hall, Alex Kaley, and Andy Coverdale #SelfBuildSocialCare
  2. 2. The ‘hopeful’ policy context • Since 2008, personalisation (personal budgets and self- directed support) have become central to government social care policy, this has led to much reform in the sector. • At the same time, there has been a long-term reduction in social care budgets, closure of facilities and a tightening of eligibility criteria affecting access to provision and the sustainability of new initiatives. • Understanding how individuals and groups can be facilitated to ‘self-build’ their own networks of support and learn to live in the community within this context is a key challenge for commissioners, organisations and families. • Personalisation - the right policy at the wrong time? (see Pearson and Ridley, 2017)
  3. 3. • “……in the current climate of economic austerity, available funding to support people with learning disabilities is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with learning disability and their informal carers. Individuals… have lost social support and are experiencing increased social isolation.” (Aikaterini et al 2018, 1) Austerity and the lives of people with learning disabilities. A thematic synthesis of the Literature, Disability and Society, November 2018
  4. 4. How are people with learning disabilities in the UK building a life in the current policy and economic climate? This 2 year research project explores how learning disabled people are ‘building a life’ in 4 locations in England and Scotland. With a total of: • 40 individuals representing 28 non-residential support organisations • 8 local authority representatives (including 3 commissioners) • and 46 adults with learning disabilities interviewed
  5. 5. Advisory group members in England and Scotland co created ideas on collaborative table cloths for the project logo
  6. 6. Self build social care ‘stories’ We asked individuals and support organizations how they were building a life or enabling others to build a life. Stories we were told varied from; The most positive Since the advent of personalization/ closure of a day centre, I have been able to move on from day services, find occasional work, and piece together an appropriate package of care and support with a variety of local activities. I feel valued and supported. To the least positive My adult child has been abandoned by the state/ the system/ a service/ the council. They cannot provide for their support needs (often behaviour which challenges). Care workers choose easier jobs so I cannot find a suitable personal assistant. I do an 80 mile each way trip to a service once a week that will take them. I don’t want them in a residential facility but I cannot go on like this.
  7. 7. Some people struggled to identify their own hopes and seemed to expect little ‘Annie: Fridays, Saturdays and Sundays ‘I just chill out’ Q: What do you do at the weekend, is there anything you do regularly? or do you go to the shops? A: Not really, no. Q: Do you get out of the house much? A: Not really, no. Q: Any sports, go swimming or--,? A: Well I need to start going swimming actually……..But the trouble is, there’s not enough people for me to go swimming with, I need more people that can actually go swimming with me, ‘cause recently the people who did take me swimming which was … Robin and Evie they obviously can’t so I need someone who can actually take me swimming.
  8. 8. Some people struggled to identify their own hopes and seemed to expect little Q: So Robin and Evie can’t take you swimming anymore? A: No. Q: And why is that do you think? A: ‘Cause, one, Evie has got an injury, and two, Robin is actually busy at the other houses, so it’s quite difficult….and I need someone that can actually take me swimming, ‘cause that might--, ‘cause swimming is actually good exercise for me, it loosens my muscles. Q: So when did you last go swimming? A: Oh god, I was going to say a long time ago…. I can’t remember now…….Which is a shame, ‘cause I quite like swimming……But I need to actually start that up, I need to start that back up again, swimming. Q: Oh I’m really sorry that that’s not happening for you at the moment because that sounds really important, especially sort of— in the chair obviously, and Saturday and Sundays apart from that what would you hope to do? A: [Sighs and pauses] Go out more. Later in the interview she identifies an aspiration…but has internalised a possible limitation A: I’ll tell you what I want to do, I want to start to look for a job role [laughs], any job, any job that is actually suitable for me, like I mean doing some voluntary work in a café, or oh, yeah, but that’s a problem, I don’t know whether they’ve got any wheelchair access [laughs], see that’s a--, that’s a really big issue, whether they’ve got any wheelchair access.
  9. 9. A: I think the biggest risk in all of this is that people become invisible. Q: Yeah. A: And with… the transition from having residential homes to small individual flats, with domiciliary care going in and out, people are becoming more isolated….less networked….. the service is becoming sort of private, very variable in their quality and their ethics. These sort of little privately-run outfits, some of them are brilliant, some of them are deeply unethical in my opinion…. people just need to be networked, we need to know about people not have them sitting in a little flat having their services taken away. Because you don’t know what’s going on, you don’t know what’s happening….. Q: Do you feel that those who need your services the most are being referred to you? Or do you think there are people…? A: No, I think we’re missing--…….., I worry about people with learning disabilities who don’t have families or don’t have outspoken families. When I spoke to a carer a couple of weeks ago she knew of a lad he’d had an assessment, a needs assessment and it was just the social worker with him, there was nobody else, and he basically agreed to everything as people quite often do, to make the professional smile and happy and pleased with them. And that’s his services cut, massively. And I said to this carer where was the advocate, they should have had an advocate in the room…. [But] well there’s lots of people who--, that happens to and they don’t have advocates, even though they’re entitled to them. I think if the social worker needs to cut their budget, needs to cut their spendings, sorry, then what’s the incentive for say a really hard-pushed social worker to call an advocate to oppose them and to speak up for that person. (Charlotte, Manager, Advocacy Organization in the South of England)
  10. 10. Hope isn’t always a good thing ‘Hope’ in the lives of people with learning disabilities isn’t always a good thing. Hope needs to be realisable hope founded on real (not imaginary care, support or employment). Real not imaginary communities. Personalisation and self directed care needs to be supported by investment in advocacy, otherwise people who are most vulnerable risk isolation and worse.
  11. 11. Well founded hope for some If you have Good advocacy, supportive family, range of available opportunities locally, good networks, well networked family or friends…and you do not have behaviour which challenges.
  12. 12. Misplaced pillars of hope for others Poor income, weak family support, complex needs, behaviour that challenges, located in a region with poor provision/offer.
  13. 13. Cruel Optimism, Misplaced hopes? Berlant (2011) develops a related conception of ‘cruel optimism’. “…optimism is cruel when the object/scene that ignites a sense of possibility actually makes it impossible to attain the expansive transformation for which a person or a people risks striving” (P2)
  14. 14. h.macpherson@soton.ac.uk Hannah Macpherson, with Andrew Power, Melanie Nind, Ed Hall, Alex Kaley, and Andy Coverdale #SelfBuildSocialCare

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