Recognising the tensions and contradictions surrounding the ‘Crisis within Social Care’ from a Human Rights perspective

Bob Williamns-Findlay from Left Unity’s Disabled Members’ caucus

Bob Williams-Findlay writes:[1] There is broad agreement that a crisis within what is known as Social Care exists but there are vast differences of opinion in terms of its causes and what is required to bring the crisis to an end. The Covid-19 pandemic and the government’s inaction to protect those at most risk brought home to the wider public the fragility of existing provision. In response, and recognising the need to seize the moment, an array of proposals have emerged that seek to in some manner address the crisis. 

Considering many of positions put forward, I identified similarities and differences between them, along with pronounced tensions and contradictions. We are not all on the same page nor are we seeking identical solutions. There are many reasons why this is the case however in the time I have, I can only flag up some of the issues that exist and offer thoughts on how to navigate these difficult waters. I am conscious of the old saying: united we stand, divided we fall, but if we are unable to square the circle, what can we do?

Why Care? Revealing the tensions

The first tension is the notion of ‘Social Care’ itself; is there a shared understanding of what it is? What does ‘social’ cover as opposed to health or personal ‘care’? Then there is that word: ‘Care’ and the webinar heard from Bryony Shannon who addressed how care and other words reinforce stereotyping of older and disabled people. In her blogs she has stated:

Much of what makes me go hmmm about the term ‘care’ is encapsulated in the Department of Health and Social Care’s latest campaign to recruit more people to work in adult social care.

The campaign is called ‘Care for others. Make a difference’.

Let’s break that down.

‘Care for’ suggests ‘do to’. Look after. Protect. There’s no sense of any kind of reciprocity, or relationship, or choice. Care is a paternalistic one-way street. It’s provided and received.

‘Care for others’ perpetuates the ‘us and them’ narrative. The carers, and the anonymous, homogenous ‘cared for’. The helpless who must be helped. ‘Service users’. ‘Residents’. “Inmates’. The separate, different others. Not even acknowledged as people by our Secretary of State for Health and Social Care, just “the most vulnerable in our society”. “Our most vulnerable”. [2]

A little later she writes:

But the narrative of care is about them. Others. ‘The vulnerable’ who need to be cared for, in another setting. In another sector. A bureaucratic system, where decisions are made for and about ‘service users’, not by or with people.

The focus on care invariably concentrates on ‘personal care’: managing and maintaining nutrition, personal hygiene, toileting needs – and too often this becomes the focus of care plans. The life and limb care to ensure survival.

It also perpetuates the medical model – focusing on what’s wrong, grouping and labelling people by diagnosis and condition, prescribing solutions and looking after people in institutions. A narrative that convinces many that the answer to the ‘care crisis’ lies in further integration with health.

There is still a stereotyped perception that ‘Social Care’ is simply about ‘looking after older people’ which means other groups in need of ‘social support’ are either ignored or subjected to inappropriate services. Much of what Bryony wrote in her blog fits with my own stance. The word ‘Care’ is often associated with ‘protecting someone or something and providing the things that that person or thing needs’. [3] There is nothing inherently wrong with that, however in both her webinar presentation and her book, “NO LIMITS – THE DISABLED PEOPLE’S MOVEMENT”, Judy Hunt backs up the points made by Bryony with reference to disabled people’s emancipatory struggle for social support. Judy wrote about the 1970s where:

Many people hoped the [Chronically Sick and Disabled Persons] Act would mark the removal of barriers and the start of progress towards a more integrated society. They were disappointed. For while there were some gains in terms of promoting community services …. It also furthered more segregated institutional provision …. there was an expansion of “special” segregated services to provide education, employment, transport, housing, and day centre facilities.

Crucially, however, Judy goes on to say:

Disabled people now found that, in setting up the services, professionals assumed rather than enquired about what help people wanted, determined rather than consulted about what services would be provided, and they, as disabled people, were expected to be passive in their acceptance of what was on offer. [4]

This in part helps to reveal how the narrative of care came about and its implications for today’s society, but in truth we need to look back to the Poor Laws where through the historical division of those deemed ‘fit for work’ and those cast as ‘Other’, society created, ‘them’ a process that set people apart.

Teppo Kroger writes:

Due to their aversion to care, disability scholars have developed alternative concepts. Tom Shakespeare (2000) talks about help, referring primarily to reciprocal relationships among peer groups where help is provided on a mutual basis. Vic Finkelstein (1998) and several other disability activists use the term support when speaking about the needs of disabled people. Assistance is another concept, used widely in current disability studies, particularly in connection to the work of personal assistants. [5]

I have taken this quotation from an article entitled, Care Research and Disability Studies: Nothing in Common? Due to the length of time I had to present, I was unable to explore the academic, theoretical and policy orientated differences that surround various notions of ‘care’. In the abstract to the article, Teppo Kroger explains that:

Disability researchers have voiced the criticism that the concept of care, together with research based on it, consists of the view that disabled people are dependent non-autonomous second-class citizens. The perspectives of disability studies and care research certainly are different from each other. Disability studies analyse the oppression and exclusion of disabled people and emphases that disabled people need human rights and control over their own lives. Care research focuses rather on care relationships, informal and formal care, care-giving work and ‘an ethics of care’. Nevertheless, it is suggested here that the two perspectives are not mutually exclusive and that the two groups could learn from each other’s approaches. For example, the relationship between disabled people and their personal assistants has much the same characteristics as the care relationship and requires a balancing of the needs and interests of the two parties. On the other hand, access to adequate care could be perceived as a basic civil and human rights. [6]

The idea that ‘the two perspectives are not mutually exclusive and that the two groups could learn from each other’s approaches’ is in my opinion worth exploring because I believe there are complex power issues that have not been adequately addressed within existing models of ‘supporter-supported’ relationships. I will return to this shortly, but before I do, I want to emphasise further the key problematic area disabled people see with the dominant ideology and practice around ‘care’. Teppo Kroger refers to Jenny Morris who stated:

Care – in the second half of the twentieth century – has become to mean not caring about someone but caring for in the sense of taking responsibility for. People who are said to need caring for are assumed to be unable to exert choice and control. One cannot, therefore, have care and empowerment, for it is the ideology and the practice of caring which has led to the perception of disabled people as powerless. [7]

Teppo Kroger then argues:

Jenny Morris and many other disability researchers have rejected the concept of care, claiming that the notion carries an understanding of disabled (and older) people as passive and dependent recipients and that this kind of perspective makes it impossible to really comprehend and promote empowerment and an independent life. Disability studies, based on the social model of disability, have to a large extent abandoned the concepts of care, caring, family care-giving, informal care and formal care. [8]

I believe these concepts have been challenged by both researchers and activists, however, addressing how and why they have, needs contextualising because without doing so, the majority of society would fail to comprehend what lies behind the challenges. The subjection to powerlessness, the creation of invisibility and the fostering of dependency are all factors at play. Perhaps this point can be best illustrated by the present situation where, due to Covid-19, the majority of people who are recipients of Adult Social Care have found themselves subjected to ‘the most vulnerable’ (sic) label. Bryony in one of her blogs wrote:

The vulnerable label tends to be used interchangeably with other objectifying labels like ‘the elderly’, ‘the disabled’, ‘the homeless’. It’s stuck on individuals (he was very vulnerable, she’s highly vulnerable), applied to groups (vulnerable people, vulnerable children, vulnerable adults) and combined with other labels (vulnerable service user, vulnerable customer, vulnerable case). Often there’s no context – no indication of what it is that the individual or group of people are vulnerable to. And increasingly it’s not obvious that we’re referring to people at all. [9]

It is vital to acknowledge different perspectives among service users; hence, I quote:

…the words ‘care’ and ‘carer’ are regarded by the disabled people’s movement as paternalistic and dependency creating when used with reference to disabled people. Social ‘support’ is currently considered the more appropriate phrase for disability related services. Adult disabled people require …. ‘support workers’ or ‘personal assistants’. [10]

Many of the ideological and material factors that created and maintained disabled people’s social exclusion and marginal status were subjected to scrutiny by the early Disabled People’s Movement and were the foundation stones for their emancipation struggles. The core aim in those days was to fight to be free from institutionalised living, segregation, and disempowerment.

Disabled people’s emancipatory struggle for social support

Disabled people in the USA, then the UK and across the globe coined the term Independent living. It is seen by its advocates as being both a philosophy and a set of practices which offer a way of looking at society and disability. The word, ‘independent’ here does not refer to being ‘self-reliant’ or rehabilitated to ‘live independently’, but rather to making decisions regarding one’s own preferences and lifestyles. John Evans, a founder of Independent Living in the UK, explains that it is ‘… the ability to decide and choose what a person wants, where to live and how, what to do, and how to set about doing it. These goals and decisions about a person’s life and the freedom to participate fully in the community have been and will continue to be the essence of what Independent Living is. It is also the taking and establishment of self-control and self-determination in the total management of a person’s everyday life and affairs. It is about ensuring that all disabled people have the equality of opportunity in the chances and choices of life like everybody else.’ [Emphasis added – BWF] [11]

The picture John paints is a broad one, based upon Independent Living’s philosophy and principles, but it has been open to misinterpretation. It is a given that impairment reality means some groups of people are not in a position to exercise the total management of their everyday life, but this does not mean they have to be denied support in making decisions. Independent Living is a holistic approach which centres upon people’s own lifestyles. Within Independent Living, anyone facing social restrictions encountered by societal responses towards age, impairment, or chronic illness, are viewed as ‘disabled’ people. Independent Living remains largely unknown, underdeveloped, and often distorted. It has its critics; and there are grounds for concern because like other radical concepts coming from the Disabled People’s movement, it has been hi-jacked by Neoliberal and more rightward thinking policy makers and activists. New Labour saw Independent Living as ‘personalisation’ and shaped it to fit a marketized ‘social care’ agenda. Similarly, the radical framing of ‘direct payments’ or ‘personal budgets’ offered by disabled people were subjected to commodification and slotted eventually into the Austerity onslaught.

Here we have a massive contradiction that many disabled people readily acknowledge. Whilst these alternative concepts emanating from the our movement sought to transform ‘care’ by shifting the power and freeing people from the rigidity of the system which ‘objectified’ service users through ‘need assessments’, etc. it resulted in creating other negative dynamics which have proved detrimental due to the fact that living independently now required operating within the social care market place. Reclaiming Our Futures Alliance’s vision for a new service seeks to find a way of taking disabled people out from being trapped between a rock and a hard place – the old fashioned paternalistic social democratic welfare state methods of service delivery, on the one hand, and the neoliberal marketisation of service provision, on the other.

Jenny Morris and others have spoken about how concepts from the Disabled People’s Movement have been stripped of their radical meanings and been subjected to interpretations that protect, promote, or reinforce status quo ideas and practice. I have written about this in connection with the ‘Personalisation’ agenda. [12 ] There are also tensions and contradictions surrounding the thinking and practices behind both ‘Direct Payments’ and ‘Personal Budgets’ and these have divided opinion among disabled people and nondisabled people alike. [13]

Teppo Kroger informed us that:

Nick Watson et al. (2004) have commented that these alternative conceptualisations aim to transform care, based on an unequal relationship and including an emotional dimension, into a less personal, contractual relationship.

From the employer position relative to a personal assistant, the disabled person is said to acquire power over her/his own life and become ‘protected from the pejorative, symbolic and practical elements of caring relationships. [14]

Whilst this may have been the intention, the operational nature of these concepts in the era of Neoliberalism, has unleashed a series of unforeseen dynamics. Peter Beresford wrote:

Since 2007, the study found councils have significantly increased staffing levels to administer this, while the volume of support delivered has reduced. The loss of productivity is as much as 20%, costing in the region of £400m a year, which can be added to the £500m spent on introducing this system.

But all need not be lost. If the government faces up to the failure of this strategy, it can set a new direction that will work. The RAS [resource allocation system], in all its forms, should be dropped, along with the consumerist philosophy that underpins the strategy. Most older and disabled people need to work with an infrastructure of advice, advocacy and administrative back-up to achieve the best approach to their support. The government must create the environment within which this can happen. While it is possible to pursue personalisation within existing resources, the government must accept that achieving the best outcomes requires people to have the level of resource that is right for them. [15]

In the same article, Julie Stansfield argued:

Personal budgets are just a mechanism; the principles of self-directed support are the critical thing. But this is also where the real problem lies. Our advice line is inundated with people telling us these principles don’t apply where they live. It is in these places we find the over-complex resource allocation systems; burdensome support planning approaches; rigid rules on spend; social workers not trusted to make judgments; people left without information, advice and advocacy. We share the concerns about too much process and bureaucracy, and we are afraid that the situation is getting worse. But these problems don’t result from the model of self-directed support itself, but from difficulties public services have in transferring power to their users. We need to make common cause and fight together for personal budgets that truly shift power to people. [16]

This why I fully support ROFA’s radical vision for a new National Independent Living Support Service. [17] Unfortunately, there are many forces who are genuinely concerned about the existing situation and what might lie ahead, but nevertheless seem unaware of or fail to recognised the trapped position disabled people find themselves in.

As previously pointed out, the pandemic and the government’s inaction brought greater awareness of the fragility of existing provision. We saw residents and staff treated like lambs to the slaughter; anger at the lack of safety equipment, pay and working conditions – all valid. What was less evident was consideration of the social and cultural environment that surrounds the proliferation of residential and nursing care settings, especially within the private sector. Surely, given what we have just witnessed, is there not a need to question whether or not these forms of institutionalized living are the solution to the numbers of people requiring supported living? How can people talk about ‘Care’ without addressing the elephant in the room; namely, deinstitutionalisation. The European Network for Independent Living views this as a fundamental human right:

Deinstitutionalisation is a political and a social process providing the shift from institutional care and other isolating and segregating settings to independent living. Essential to the process is the provision of affordable and accessible housing in the community, access to public services, personal assistance, and peer support. It is also about ensuring that children are able to grow up with their families and alongside neighbours and friends in the community, instead of being segregated in institutional care. Where people live is a human right, we need ensure meaningful options are available. [18]

What these tensions and contradictions illustrate is that there are no quick fit solutions or ‘one-size-fits-all’ off the peg policies available. When planning this talk, I was influenced by Rich Watts who wrote a SCIE [Social Care Institute for Excellence] opinion piece in 2015. He said:

Our concept of social care as a cohesive ‘system’ can compromise our ability to understand how complex it really is. I think that the need to change social care, to meet all future demands, requires us to think in a much more sophisticated way.

His starting point, however, will possibly raise eyebrows – we should question ….whether social care is even a ‘system’ at all. The formal definition of a system includes ideas like having a fixed structure with a range of defined parts. I also believe he is correct to assert that:

This way of thinking has its attractions, not least of all to politicians, because it suggests that if only the right levers can be pulled, then the right sorts of changes will happen. But to me, social care feels like it’s too mechanistic. [19] Watts then proceeds to suggests that perhaps a better way of thinking about this is to recognise the complexity of what we might call the ‘social care ecosystem’. What does this mean? Well, an ecosystem is a biological community of interacting organisms and their physical environment. To my way of thinking this is exactly how we should be conceptualising the landscape; however, wait a minute, is this not the basis for Independent Living?

If we were to embrace the idea of an ecosystem of community-based provision, then one of the essential tasks we have in the coming weeks, months and years ahead is to create spaces where the right mix of people, organisations, power, expertise, experience, styles, and cultures can be brought together. As SCIE would inform us, this is called, co-production.

Notes

[1] This article is an elaboration of a presentation I delivered at a webinar held by Reclaim Social Care on the 20th August 2020. The central difference between the two revolves around this paper offering greater context and reference to relevant sources. The core argument has not been altered.

Reclaim Social Care

https://www.facebook.com/groups/ReclaimSocialCare

[2] Bryony Shannon

https://rewritingsocialcare.blog/2020/05/31/care/?fbclid=IwAR31MT73Ko-L9zRlEAjdqkjfeBJzh9jrY_DkSeXfpozW2PEB0g3Cyx-2xRU

Bryony’s references:

Adult social care recruitment care campaign launched to boost workforce, Department of Health and Social Care, 23 April 2020

Care home boss says hospitals are refusing to admit her inmates showing symptoms, Robert Preston, Twitter, 5 April 2020

Adult social care recruitment care campaign launched to boost workforce, Department of Health and Social Care, 23 April 2020

[3] Care – Definition

https://dictionary.cambridge.org/dictionary/english/care

[4] Hunt, J. (2020) NO LIMITS – THE DISABLED PEOPLE’S MOVEMENT, TBR Imprint p.74

[5] Kröger, T. (2009). Care research and disability studies: Nothing in common? Critical Social Policy – CRIT SOC POLICY. 29. 398-420. 10.1177/0261018309105177.

Kröger’s references

Shakespeare, T. (2000) Help. Venture Press: Birmingham

Finkelstein, V. (1998) ‘Re-thinking Care in a Society Providing Equal Opportunities for All’,

Discussion Paper prepared for the World Health Organisation. Milton Keynes: Open University.

Watson, N., McKie, L., Hughes, B., Hopkins, D. and Gregory, S. (2004) ‘(Inter)dependence, Needs and Care: The Potential for Disability and Feminist Theorists to Develop an Emancipatory Model’, Sociology 38(2): 331–50

[6] Kröger

[7] Morris, J. (1997) Care of Empowerment? A Disability Rights Perspective

Social Policy & Administration, Volume 31 (1) – Mar 1, 1997

[8] Kröger

[9] Bryony Shannon

https://rewritingsocialcare.blog/2020/07/24/vulnerable/

[10] Kröger

[11] Evans, J. (President of European Network of Independent Living) (2003)

Disabled People in Europe are Demanding the Right to Independent Living

Presentation at Paris Disability Expo

[12] Williams-Findlay, B. (2015) ‘Personalisation and self-determination:

the same difference?’, Critical and Radical Social Work, Volume 3 (1) p. 67 – 87, Policy Press

[13] Direct payments, personal budgets and individual budgets

https://www.communitycare.co.uk/2007/01/05/direct-payments-personal-budgets-and-individual-budgets/

Direct Payments: Are they working well for people with learning disabilities or dementia who lack mental capacity to consent?

https://www.nationalelfservice.net/social-care/personal-budgets-and-direct-payments/direct-payments-are-they-working-well-for-people-with-learning-disabilities-or-dementia-who-lack-mental-capacity-to-consent/

[14] Kröger

[15] Slasberg, C., Beresford, P., and Schofield, P. (2012) How self directed support is failing to deliver personal budgets and personalisation

http://ssrg.org.uk/wp-content/uploads/2012/01/Slasberg-et-al.pdf

[16] Beresford, P. and Stansfield, J. (2013) Are social care personal budgets working?

https://www.theguardian.com/society/2013/feb/12/are-social-care-personal-budgets-working

[17]

Independent Living for the Future

https://www.rofa.org.uk/independent-living-for-the-future/

[18] European Network for Independent Living – Definitions

https://enil.eu/independent-living/definitions/

[19] Watts, R. (2015) Why social care is like a Jackson Pollock painting

SCIE opinion

https://www.scie.org.uk/opinion/why-social-care-is-like-a-jackson-pollock-painting.asp?fbclid=IwAR1Cd1DIlGkDkzZoB6rRy13U9Sz9BMCcG1FOAdTzVnyEHCJlhZxzI0WRKlw