Tuesday, 28 February 2017

When the use of the word 'we' signals a denial of human rights: what the debate on social care is really about.

Today, the BBC is reporting that over the last three years more than 20,000 complaints of abuse by home care workers were made, mainly of people over the age of 60, resulting in only 700 prosecutions and 15 convictions.

Last  week the Radio 4 programme ‘You and Yours’ invited listeners to call in to answer the question “Should we take more responsibility for our elderly relatives?…do we ALL have a duty to care for our elderly parents? Are you doing it already? Or do you feel guilty because you can’t?”

This followed Care Minister, David Mowat’s insistence that tackling the current funding crisis in social care will require people to be “as responsible for their parents as they are for their children”.

Some commentators have pointed out that this echoes the views of the Conservative government of the 1980s, whose 1981 White Paper Growing Older stated unequivocally that “Care in the community must increasingly mean care by the community”.

Certainly, governments have for many many years been concerned that individuals and families should primarily look to each other for support rather than to the state.  The development of social care throughout the second half of the twentieth century was imbued with this priority: when the large mental institutions started to be closed down in the 1960s and 1970s, the emphasis was on how to encourage families to care for those who would previously have been in-patients (1); when, during the same period, the role of social worker was expanded and professionalised, the Minister responsible stated “The primary objective of the Personal Social Services we can best describe as strengthening the capacity of the family to care for its members”(2). And when the Conservative government came into office in 1979, its social policies were underpinned by Prime Minister Margaret Thatcher’s view that “…if you give people the idea that [caring for older and disabled people] can be done by the state….then you will begin to deprive human beings of one of the essential ingredients of humanity - personal moral responsibility” (3).  

However, although the numbers in long-stay mental hospitals slowly reduced, the numbers of older people entering residential or nursing care continued to increase. Indeed, there was a hundred-fold increase in the amount of state funding of residential and nursing home care between 1979 and 1989 while expenditure on home care increased by less than three times.

The overall increase was partly due to demographic reasons but the more dramatic increase in the expenditure on residential care was also because funding for residential care was through the entitlement-based social security system - a budget which was not cash limited - whereas that for home care was through discretionary local authority provision and cash-limited budgets. The Conservative government responded to this ‘perverse incentive’ for people to choose residential care by passing the community care reforms of the 1990s (the NHS and Community Care Act 1990) which created not only a radical change in how residential and home care were funded, but also in how they were provided.  Local authorities were responsible for deciding what level and type of care someone qualified for, and a new system of commissioning was introduced which encouraged local authorities to get out of providing either residential or home-based support and instead to purchase it from private providers.  At the same time, the reforms failed to address the problems created by the often artificial division of health and social care needs, problems which were identified during the 1970s but which successive governments failed, and continue to fail, to adequately address.

Fast forward to today - following year on year cut-backs to local authority budgets since 2010 - and we now have both health and social care in a state of crisis, comprehensively summed up by the House of Commons Health Select Committee

  •  Local authority adult social care budgets fell by 31% from 2010-11 to 2015-16 (£4.6bn), resulting in 400,000 fewer disabled and older people receiving support. At the same time, significant numbers of people who do get support have seen reductions in the amount of support provided.
  • The ‘market’ in social care, created by the 1990s reforms, is failing: both residential and home care providers struggle to make a profit (unless their finance capital owners can make a profit out of the value of land and buildings). The so-called ‘national minimum wage’ is exacerbating the situation as the gap between what local authorities are prepared to pay per placement and what the actual costs are is increasing.  This increases the hidden subsidy required from ‘self-funders’ (people who pay for their own care) to keep services running and in turn makes it harder for self-funders to pay for the support they require, thus reducing demand, impacting negatively on both the profitability of providers and the demand on the NHS as people end up in hospital because they aren’t getting the support they need.
  • at the same time the NHS is finding it harder to cope with the increased demand (resulting from both demographic factors and the consequences of reductions in social care support) because of factors such as a steady reduction in hospital beds over the years, a shortage of staff in certain roles and parts of the country (exacerbated by a pay freeze and leading to a dependency on expensive agency staff), and the reduction in the tariffs paid for treatment.  
  • All of these factors have also contributed towards deficits in hospital budgets.  In response the only solutions offered to hospital trusts have been short-term ones - the raiding of capital budgets in order to fund revenue costs; selling off of assets; a tendency to use money which should fund improvements to instead plug the gaps in current budgets (for example, the Better Care Fund) - all of which, according to the Health Select Committee, “mask the true scale of the consequences of the underlying financial problems facing the NHS”.   And that’s without even mentioning the red herrings of Jeremy Hunt picking a fight with junior doctors over his meaningless promise of a ‘seven day NHS’ and the blaming of the public for ‘unnecessary’ visits to A&E.

As a society we have generally ignored the consequences for individuals of a failure to properly fund support - with the occasional hand-wringing over a scandal such as Winterbourne View or the BBC’s reports today of abuse and neglect by home care workers.  Instead, the mainstream policy debates are dominated by the ‘need’ to cut back public expenditure or the costs of paying for care to individuals and their families - rather than the quality of services and the experiences of individuals. 

Prior to the current crisis, the focus was on how to prevent people having to sell their homes in order to fund care in old age.  As Tony Blair told the Labour Party Conference in 1997, in his first year as Prime Minister: ‘I don’t want a country where the only way pensioners can get long-term care is by selling their home’.  Yet during 13 years of government, Labour failed to put a new funding system in place. In the run-up to the 2010 general election Health Secretary Andy Burnham proposed a non-means tested ‘national care service’ funded by increased inheritance tax, an idea quickly shot down by the right wing press as a ‘death tax’ and helping to bring about Labour’s defeat. The Coalition government then adopted the Dilnot Commission’s proposal of capping the amount that anyone would pay over their lifetime, but although this was intended to be implemented in April 2016 it has been delayed until 2020 because the level of state funding required is incompatible with the current Tory government’s ‘austerity’ approach to public expenditure. 

Andrew Dilnot’s proposals were a compromise - based on the idea that people should be expected to pay just so much and no more, so that most would not have to give up all their capital (in the form of their home) in order to pay for support but could expect to pass at least some onto their children.  But this policy was aimed at addressing the material interests of one section of voters, the home-owning middle class (or rather their property-inheriting children).  It didn’t address the more urgent issues of how to deliver support which enhances the quality of people’s lives, which if tackled would be more likely to benefit all older and disabled people.

Having failed to address the failings of the market in social care and after seven years of cut-backs to local authority budgets and a failure of NHS funding to keep up with demand, it is the financial crisis (with many social care providers getting out of the market because they cannot make a profit) which - unsurprisingly - continues to dominate the political debate about social care. Nowhere in the current debate have I heard any reference to disabled people and older people having choice and control over how their support is provided. Nowhere in the current debate have I heard any sense of disabled and older people having a right to self-determination as citizens.  The government’s response to today’s BBC report - that it had “given councils up to £7.6bn of funding” for social care - is typical of the failure to focus on disabled and older people’s actual experiences and instead to limit the debate to levels and sources of funding.

In this public discourse, the pronoun ‘we’ does not include older and disabled people: “Should we take more responsibility for our elderly relatives?…do we ALL have a duty to care for our elderly parents? Are you doing it already? Or do you feel guilty because you can’t?”.  In the political debate, older and disabled people are ‘the vulnerable’, and the juxtaposition between the ‘we’ and ‘the vulnerable’ assumes a loss of agency, a denial of the right to self-determination.  Disabled and older people are ‘a burden on society’, which must be debated in terms of what level of resources ‘we’ can afford.  The only alternative is to for ‘families’ to be seen as asking for too much from the collective purse, to be reneging on their moral responsibility to ‘look after their own’.  

All of this affects ‘self-funders’ too, people who pay for their own support, who make up almost half of people in residential or nursing care and 20% of those living at home with support (4). Indeed, the case of physical abuse which headlined today's BBC report involved home carers who were paid by the abused woman and her family (although the contract was arranged by the local authority). When older people figure in public debate it is as ‘pensioners’, ‘dementia sufferers’, ‘the elderly’  and the context is usually problematic - ‘bed blocking’, ‘vulnerability’, ‘increased demand on the NHS’.  Abuse and a lack of respect are just two extremes of the same continuum of negative and harmful attitudes: when the abusing home care worker shouted that 86 year old Dora Melton was “not doing what you’re told like a good girl”, she echoed the way David Mowat spoke of older people as ‘children’ who families should ‘take responsibility for’.   [Warning: the video on the BBC website is extremely distressing]

We are all citizens, we are all human beings - as citizens we have a right to the opportunity to participate in society ‘on an equal basis with others’; as human beings we have rights to life, to freedom from degrading and inhumane treatment; to freedom of expression, to a private and family life.  But in order to be accorded these rights we need both barriers to be removed and the necessary support to be provided. What disabled and older people want - and what we all need - is recognition of collective responsibility for individual rights.  

When I was making these points as a disabled person in my 30s, 40s, and 50s, I would frequently say that these rights should be recognised for disabled people of whatever age (with older people in mind) .  Now that I am an older person myself I recognise that we are not only up against persistent disablism but that negative, patronising attitudes towards older people are in many ways a bigger obstacle.  

As a society ‘we’ have decided that there is a limit to which ‘we’ are prepared to take collective responsibility for protecting and promoting disabled and older people’s human rights. The consequences for individuals of pervasive and institutionalised prejudice are dire, as today’s BBC report illustrates. Increasingly, the support available from social care services is a ‘safety net’ service - in many areas, an ‘intensive care package’ means getting three visits a day (15-30 minutes) each, with no help to do housework or shopping, or to have a bath, to meet friends, participate in family life, or to ever go out of the house.  

A loss of choice and control over your life, and even where you live, has become for many people an inevitable consequence of impairment, long term illness or frailty in old age. It is not that ‘care at home’ is unequivocally ‘good’ while residential care is always to be avoided. Rather, the issue at stake is whether individuals have choice and control over how the support they need to go about their daily lives is provided. Some older people who would prefer to move into residential or nursing care are instead forced to remain at home with minimal support, often in unsuitable housing inadequately heated - because it costs less to keep them at home than to move into residential care.  And in contrast, younger disabled people with the highest level of support needs are stuck in, or pressured to move into, residential or nursing care because their local authority or Clinical Commissioning Group are unwilling to pay the higher costs of supporting them at home and/or suitable housing is not available - a situation which was common in the first 70 years of the last century and may well become common again.

And only last week, one woman announced she was ‘choosing’ to go to an assisted suicide clinic in Switzerland because she could no longer bear to live without the social care support she needed but which had been suddenly and dramatically reduced. 

Our failure as a society to address people’s support needs in a way which empowers them to live ‘ordinary lives’ is only sustainable because of a culture of ‘othering’.  If those debating and deciding - whether it is journalists, pundits or politicians - meant ‘disabled and older people’ when they use the pronoun ‘we’ then ‘we’ would be having a completely different debate because our priorities would be different. Our priorities would be how do we create a society where the most important thing is to support and care for each other in a way which recognises, protects and promotes our common humanity - whether we are someone who currently needs support, or someone who needs it in the future (as almost everyone will).

(1) Michael Bayley, 1975. Mental Handicap and Community Care.

(2) Richard Crossman, quoted by Conference of Socialist Economists (CSE) State Group, 1979. Struggles over the State: cuts and restructuring in contemporary Britain. 
(3) Margaret Thatcher, speech to 1978 Tory Party Conference. 
(4) C.Miller, A. Bunnin and V.Rayner, 2013. Older people who self fund their own care OPM.