Ordinary hope and misplaced pillars of hope in the lives of Learning Disabled people in England and Scotland
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. The âhopefulâ policy context
âą 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.
âą 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.
âą Understanding how individuals and groups can be
facilitated to âself-buildâ their own networks of support and
learn to live in the community within this context is a key
challenge for commissioners, organisations and families.
âą Personalisation - the right policy at the wrong time? (see
Pearson and Ridley, 2017)
3. âą ââŠâŠin 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.â
(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. 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
âbuilding a lifeâ in 4 locations in England and Scotland. With a total of:
âą 40 individuals representing 28 non-residential support organisations
âą 8 local authority representatives (including 3 commissioners)
âą and 46 adults with learning disabilities interviewed
5. Advisory group members in England and Scotland co
created ideas on collaborative table cloths for the
project logo
6.
7. Self build social care âstoriesâ
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 donât want them in a residential facility
but I cannot go on like this.
8. Some people struggled to identify their
own hopes and seemed to expect little
âAnnie: Fridays, Saturdays and Sundays âI just chill outâ
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 actuallyâŠâŠ..But the trouble is, thereâs not
enough people for me to go swimming with, I need more people that can actually go
swimming with me, âcause recently the people who did take me swimming which was âŠ
Robin and Evie they obviously canât so I need someone who can actually take me
swimming.
10. 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 isolatedâŠ.less networkedâŠ.. 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 opinionâŠ. 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 donât know
whatâs going on, you donât know whatâs happeningâŠ..
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 weâre missing--âŠâŠ.., I worry about people with learning disabilities who donât have families or
donât have outspoken families. When I spoke to a carer a couple of weeks ago she knew of a lad heâd 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 thatâs his services cut, massively. And I said to this carer where was the advocate, they should
have had an advocate in the roomâŠ. [But] well thereâs lots of people who--, that happens to and they donât have
advocates, even though theyâre entitled to them. I think if the social worker needs to cut their budget, needs to
cut their spendings, sorry, then whatâs 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)
11. Hope isnât always a good thing
âHopeâ in the lives of people with learning disabilities isnât 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.
12. Well founded hope for some
If you have
Good advocacy, supportive family, range of available opportunities
locally, good networks, well networked family or friendsâŠand you do
not have behaviour which challenges.
13. Misplaced pillars of hope for others
Poor income, weak family support, complex needs, behaviour that
challenges, located in a region with poor provision/offer.
14. Cruel Optimism, Misplaced hopes?
Berlant (2011) develops a related conception of âcruel optimismâ.
ââŠoptimism 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 strivingâ (P2)
I am on of the research fellows on this research project looking at how people with learning disabilities are building a life, a project entitled âself build social careâ because of the current policy context of personalization and self directed support.
It is a 2 year interdisciplinary project â a collaboration between Universities of Southampton and Dundee and partner user-le, learning disabled, advocacy organisations, ( who remain anonymous for the purposes of this research)
https://selfbuildsocialcare.files.wordpress.com/2018/06/self_build_social_care_final.pdf
Whilst personalisation drew on the principle of promoting the independence and autonomy of disabled people, direct payments policy in the UK has in part been rolled out in light of potential cost savings to social care budgets. Pearson and Ridley rightly ask â is personalization the right policy at the wrong time?
Whilst personalisation contains the potential for empowered lives, The policy and financial context within which we are tasked with researching people with learning disabilities lives, is bleak. Austerity is biting. As this recent review of research claims
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We interviewd members and managers of Support organisations that included
Day services (incl. day centre in transition to social enterprise*)
Friendship âmeet upâ groups*
Voluntary work and training initiatives (e.g. Voluntary work credit scheme)
Theatre Group
âPop upâ book shop*
(Self)Advocacy organisations*
Neighbourhood networks*
Gardening/Horticulture/Farm initiatives*
Our project was supported by inclusive advisory groups in England and scotland, which have been meeting bi monthly/.
Reseaech methods with leraning disabled participants included
Focus Groups, photo voice, weekly timetables, support circles and timelines were used with learning disabled adults to help consider how people were âbuilding a lifeâ, explore learning in this context and hopes and aspirations for the future.
At the sites in south east england I personally researched â a transitioned day centre and a life skills and employment support course
a key thing I needed to communicate as a researcher, was that I wasnât there to change anything for the individual (either for better or worse)âŠI was both a figure of concern â ( is this person going to take something away?) and a figure of Hope â perhaps this person can help me do this thing I have been wanting to do?!
So for the sake of this paper I have written these as fictional accounts that I know are true. I now need to go into the data and pull out examples and ideally categorise all of these stories on a spectrum.?
Within them are all sorts of stories of misplaced and ordinary hope (to be just like everyone else, to get a job etc..)
That is not to say that personalization and the hopeful policy context is all a bad thingâŠ.
We reviewed what was availble in each of the study areas, In broad terms we found that there was a patchwork of opportunities for people with learning disabilities and the increasing shift to personalization has meant that they have to capitalize themselves on what was available in their area. In some cases this was not well suited to their particular needs or age group but they were choosing to do something where possible rather than be stuck at home.
Anecdotally I would say middle class parents, friends or supporters use their social, economic and cultural capitall to maximise allocation of resources.
This reinforces social and economic inequalities. And from a scan of the literature but please correct me there seems to be an underexaminied class component to studies of the recent impact of personalization and self directed support on learning disabled peopleâs experiences
Some areas were much better resourced than others â often free, or low cost provision of activities or work opportunities was reliant on a handful motivated individuals.. Se critiques of Camerons âBig Societyâ vision and the imagined communities of caring supportive volunteersit rests on and the post code lottery it generatesâŠ
What does good self build social care look like?
in built sustainability
secure funding
well networked individuals
sense of permenance/ ongoing ness (build competence and attracts realistic hopes)
peer support ( going out together into the community with other people with learning disabilities)
practitioners and care workers and org leaders operating with a set of moral principles? ( an ethos?) with empathy or identification ?
transformative â challenging local authorities.
from necessity good things emerge ( but how much learning and advocacy need to be factored in>) the right amountâŠ.
Commissioners aware of itâs boundaries and limitations ( not a panacea)
Brokers?
Continuity, sense of progression, built in learning opportunities
Everyone has a sense of this being something that has longevity
Facilitation
Recognition of regional diversity, diversity of aspiration
Consciousness raising, aware of peers anda ware of organization and its role.
Realizes individual and collective aspirations
Also legitimates peripheral participation.
(needs an info graphic? FROM Working Class, poor income, weak family support, complex needs, behaviour that challenges, located in region with poor provision/offer,
You are much less likely to benefit from personalisationâŠ