Monday, 9 April 2018

Continuing the #socialcarefuture debate

This blogpost is an attempt to address some of the challenges and draw attention to some of the good ideas discussed in the #socialcarefuture debate initiated by Martin Routledge and In Control. 

Some have argued that we need to reframe our arguments about social care. In his contribution to the debate, for example, Neil Crowther said: “A quick look at recent communications around social care by a selection of public-facing organisations in the field suggests that they are contributing to the problematic way social care is framed”.  Two key characteristics of this “problematic way” he identified as “the demographic time bomb” of older people’s demands on health and social care services, and the accompanying language of a “crisis” in both the NHS and social care. Such language encourages fatalistic thinking he said, and does not help to convince the public that these are important issues.

Yet we desperately need to convince the public (and politicians) of the case for more funding for social care. Although we know that there are better ways to spend current social care budgets, as Richard Humphries says, “The oft-quoted mantra that ‘it’s not just about the money’ doesn’t mean that it is not at all about the money….Social care will never work properly without adequate and rising investment”. 

But what would convince the public and politicians?

Should we be using the term 'social care’ at all?
Alicia Wood wrote: “I rarely use the term social care in my work or home life. It somehow feels so broad it is a bit meaningless to me”.

As she also pointed out, there is very little awareness amongst the general public about what ‘social care’ is.  Current awareness is likely to be dominated by recent political controversies over the so-called ‘dementia tax’ and ‘bed-blocking’ in the NHS.  The associated language and individual stories create feelings of hopelessness about how awful things are, of fear of what faces us in old age, and at best a determination that, as individuals, we will do our utmost to avoid such situations. 

The plethora of services that go under the generic name of social care are about so much more than is currently conveyed in public debate. It includes the community organisation that provides a play scheme for disabled children during the school holidays, the PA employed by a disabled woman who works as a solicitor, the equipment supplied to a 90 year old which enables her to live safely in her own home - the range of things which come under the umbrella of ‘social care’ is enormous.

This can mean that when debate focusses on key issues there is often the accusation that one group or another has been left out - for example, recent debate about funding social care has been criticised for focussing on older people to the point of ignoring the large numbers of disabled people of working age; at the same time, disabled people’s own demands for independent living have often been accused of leaving out the concerns and circumstances of people with learning disabilities and people with long-term health conditions. 

In these circumstances, different groups worry that their own particular circumstances and requirements are unacknowledged. Disabled people with physical impairments may argue for support services which enable them to take advantage of education, training and employment opportunities, justifying spending on such services on the grounds that this is an investment enabling them to gain and retain paid employment.  Such arguments may feel threatening and undermining however, to people experiencing chronic illness who feel that, particularly in this current era of ‘welfare reform’, illness as a barrier to paid employment is not sufficiently recognised. 

Or to take another example - recent debate often focusses on the current problems in the provision of residential care.  However, there is little recognition that, from the point of view of the person needing support, precisely what the ‘problem’ is can differ significantly.  For young disabled people with high levels of physical support needs the current problem is the threat of being unwillingly moved into residential or nursing care because of the lack of funding for support in their own home.  Yet for an older person nearing the end of their life, the problem may be a lack of good quality care in a nursing home, resulting in them remaining unnecessarily in hospital or in undignified, lonely and difficult circumstances in their own home. 

But the current language of the ‘social care’ debate not only poses problems for those reliant on such services, it is also problematic because it does not speak to people’s daily lives, their families and relationships.  As Sam Clark , Chief Executive of the Local Area Co-ordination Network, wrote “Social care is all about people, their relationships, and their well-being”.

Instead of engaging in political and public debate about ‘social care’, perhaps we should instead talk about the people, their lives and relationships for whom it caters. We should be asking, as Alex Fox does, how can we ensure that the money spent on ‘social care’ enables “people to choose and build long-term relationships as part of building family and community life”?

How should we be arguing for more resources?
If the wide variety of services which can make such a difference to people’s lives need more resources, what arguments can we marshall to justify increasing public expenditure?  They will need to be strong arguments indeed if we are to argue not just for an increase in funding but also that social care should be free at the point of use - as I argued in my own contribution to the #socialcarefuture debate.

In trying to move the debate beyond the language of a crisis of an ‘ageing population’, as well as to recognise the wider group of people for whom social care caters, it is often argued that expenditure on (younger) disabled people’s support needs should be treated as an investment.  This raises the question of what it is that we are investing in?  What return do we expect as a society?

It is generally the case that talking about investment implies a return of something which has economic value.  Thus a programme like Access to Work is said to be a ‘good investment’ because it enables people to earn an income and pay tax and national insurance, instead of relying on benefits - a move commonly characterised as from ‘dependence’ to ‘independence’.  

Quite apart from the fact that the ‘employment’ argument leaves out the largest group of people who need support - older people - it also plays into a particular frame around who is ‘deserving’ of support.  Do we have to be economically productive in order to be deserving of support?  What does it say about the values of our society if people’s worth is tied to their ability to engage in paid employment?

If we argue that an increase in resources for social care will enable more people to be economically productive, it plays into the argument made by people like Times columnist Matthew Parris, who refers to older and disabled people as “an unproductive overhang”.  He wrote that “Some day soon we’ll all accept that useless lives should be ended” and that “any ageing society will in time question how much those wanting help should demand of those who must pay for it” (the Times article from which this second quote is taken is behind a paywall but is available here.  I wrote an earlier blogpost about his arguments).

Should we not be talking about the type of society - rather than the ‘type’ of individuals - that we might want to invest in? 

  • Wouldn’t we like to invest in the kind of society where what we currently call ‘social care’ services are dominated by what Sam Sly describes as “acts of humanity [which make] a difference to people’s lives”.
  • Wouldn’t we like to invest in the kind of society where parents of disabled children can come together to draw support from each other, at a local Children’s Centre which at the same time provides a point of access to a variety of specialist services and professionals? 
  • Wouldn’t we like to invest in the kind of society where a person in the advanced stages of dementia is cared for in a small residential home, where the high standards of care provided mean that no-one has to be medicated into semi-consciousness and where the environment is so comforting and comfortable that families and friends find it a pleasure to visit?

Wouldn’t we like to celebrate the basic human instinct of kindness by investing our collective resources in making these and many other similar experiences possible?

And at the same time, we could celebrate such investments as wise, ultimately self-interested, decisions for none of us know whether we will be the beneficiaries at some point in our lives.  No-one knows whether they or their family will experience the need for social care support - though the likelihood is that by the last stages of our lives we all will. It is in all our interests, therefore, to invest in the things which will enhance the lives of the ‘least advantaged’, as John Rawls put it when he argued for the ‘veil of ignorance’ principle to guide political decisions. 

Or to put it another way - we should be applying the Golden Rule in all our decisions about how to raise and spend our collective resources: Do as you would be done by.

Visions for the future
Which leads me to my response to Martin Routledge’s challenge issued on Twitter: “If u entered a cave, rubbed a lamp & the Green Paper genie offered u 1 wish 4 the forthcoming paper - what would it be?”.  I’m not going to answer this in terms of the type of language or commitments that are usually in a green or white paper. And I’m not going to limit myself to one wish (sorry Martin).  Instead, I’ll start by drawing you a picture of what an imaginary three households in my village might look like if the Green Paper delivered real change.

In Honeysuckle Cottage lives Mrs Lucy White.  Aged 92, she has been living on her own since her husband died over 20 years ago.  She has a daughter, son-in-law and grandchildren living nearby in new affordable housing (which really was affordable rather than the 80% of ‘market value’ which is the current definition of ‘affordable housing’).  As her daughter’s house was built to Lifetime Homes Standards Lucy was able to stay with her when she recently came out of hospital following a fall, while adaptations to her own home were done by the local Care and Repair organisation, enabling her to return home.  She has help provided by an organisation in the village - a co-operative which is run by and for the community - funded by her personal budget.  

Down the road live Mr and Mrs Green.  They used to provide short breaks to parents of disabled children by having children to stay for weekends but when Mr Green was made redundant from his job they decided to become involved in Shared Lives.  A young man, Oliver, now lives with them.  Oliver had spent three years in an Assessment and Treatment Unit, many miles from his family who live in the nearby town. In order to support Oliver, Mr and Mrs Green received extensive training and continued support from a local organisation specialising in supporting people with learning disabilities and/or autism who also have significant communication needs.

Also in the village lives Laura Brown, a 40 year old mother of three, who has a chronic illness which prevents her from doing much outside her home.  She works part time and remotely, arranging speakers and booking venues for an organisation which puts on various arts festivals all over the country.  She has a personal assistant who supports her in her parenting role, paid for from her personal budget. The personal assistant lives in a village five miles away and does not have a car and there is no public transport.  However, she travels to Laura’s house using a community transport service, which is run by three Parish Councils in the area.

There are three policies which would help make these scenarios possible.

Firstly, the establishment of an Independent Living Fund which would build on the experience of the previous ILF but have some key differences.  It would be open to people of all ages (not just working age adults as the ILF was).  It would use nationally consistent criteria to deliver locally co-produced responses to individual needs. Social care practitioners would work out of community hubs (as described by Jenny Pitts) to develop Support Plans with individuals and their families and friends, sometimes using Circles of Support.  

Secondly, local authorities’ approach to commissioning will need to change radically, as described by Bob Hudson, so that social value dominates the decision-making process. Most importantly, commissioning would need to be done in partnership with people who will use such services, for example, the training and support provided to Mr and Mrs Green as Shared Lives providers would be commissioned by a Panel which included those with lived experience of learning disabilities and/or autism.  These commissioning bodies would set aside budgets each year for innovations in responses to a range of needs and circumstances, for evaluations, and for the continuation of responses which yield good results. 

And thirdly, it would mean the development and implementation of a national housing and community policy which included within it commitments to:
  • build and adapt homes which are to Lifetime Homes Standards
  • significantly expand the supply of low rent accommodation with security of tenure
  • ensure the infrastructure necessary to create and maintain supportive and inclusive communities.

Change must come from local communities and be implemented in partnership with them.
National policies must be generated by local initiatives and government’s role should be to help this to happen and to also provide enabling frameworks for co-produced implementation. Unless such frameworks are put in place, we will just continue the past history of good ideas being generated within local communities only to be corrupted by the disempowering cultures which too often pervade large-scale implementation. We need, as Sian Lockwood wrote, “a very different relationship with public bodies - one where the community has responsibility for determining local priorities and shaping the solutions that will address those priorities”.

This applies to the whole infrastructure which makes good quality lives possible, for example in the field of housing, Jeremy Porteus has pointed out that “Innovative and collaborative organisations or groups of friends have in recent years pioneered a range of new citizen-led housing models”.  He lists a number of initiatives which “are vehicles for giving people greater choice and voicing the opportunity to manage their own care and support”.  The key to the future success of all such initiatives - whether in health, housing or social care - is that they come from groups and communities themselves and that they are made possible by national policy frameworks which are enabling and promote inclusion.

Vidya Alekson argues that we must “build a bedrock of community capacity on which the formal system relies”. I would argue that it is this community capacity which will generate not only the informal support that creates inclusion but also the innovations in publicly funded services which are also necessary.   Unfortunately, as Ewan King says innovations in social care often seem stuck in a “pilot phase”. If I have learnt one thing from my involvement in disability politics and social policy, it is that while good ideas are generated by people who live the experience, once they get taken on by national and local bureaucracies, the original intentions often - far far too often - get lost in the morass of rules and regulations, in professional and service priorities, their principles corrupted by cultures which are by their very nature resistant to change. 

There is a distinct danger that politicians will look for yet another ‘new idea’ to address current difficulties in the funding and provision of social care.  But as Julie Stansfield writes we know, not only what are the things which enhance people’s lives but also what makes economic sense. We certainly don’t need ‘new ideas’ imposed from above, whether from politicians or from professionals.  While we do need national policies to bring about worthwhile investment in what we now call social care, such policies have to be more like enabling frameworks for the innovations which must come from people with lived experiences. And when innovations are shown to be worth investing in - because they improve people’s lives - they must be grown on in partnership with people with lived experience.  That means establishing genuine partnerships.  It means going far beyond token ‘representation’ on boards, panels, advisory groups.  It means sharing decisions and responsibilities.  

It means a radical change in not only how we develop policies, and in how we commission and deliver services, but also in what we mean by ‘services’.  As many people have said “I want a life not a service” - and that’s what ‘social care’ should be for everyone, from the disabled 8 year old who wants to play with their friends to the 80 year old coming out of hospital following a fall.

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