Monday, 29 May 2017

A 'Dementia tax" or a right to independent living?

I wasn’t going to blog about the Tory manifesto mess on social care which has been aptly dubbed the “Dementia tax” - it’s not good for my blood pressure - but there are some important things being missed in the public debate. So here goes….

1. It is an accident of history that social care is not funded in the way that the NHS is.  The NHS is funded on John Rawls' principle of the ‘veil of ignorance’ - in other words no-one knows whether they are going to be struck down by serious illness and it is therefore in all our interests that we each pay a bit to ensure that health care is there if and when we need it. That’s the basis of social insurance.  

When the NHS was set up, social care was not a political issue in the same way that access to health care was.  We didn’t have large numbers of people living into frail old age requiring help because of physical impairment and/or dementia,,or large numbers with learning disabilities or mental ill health.  The smaller numbers with these experiences were looked after in long-stay hospital wards or by families.  Thus social care did not become identified as an issue of social justice in the way that health care did.

2.  Fast forward to today and the increased likelihood of living into very old age, with the costs that accompany the need for personal care, means that the injustice of having to bear all or most of the costs of that care, becomes more apparent. Politicians and pundits alike have, for many years, decried as unjust the fact that if someone goes into residential care the value of their house can be taken as part of their assets and used to contribute towards their care. And the Tory manifesto commitment that this practice would now be applied to people receiving care in their own homes just adds insult to what was already seen as a profoundly unjust situation.  It is unjust because it is a matter of luck as to who needs a substantial amount of care as they get older: using inheritance tax, to fund such care would be more equitable because that is a tax based entirely on wealth and not on whether you have bad or good luck in your experience of old age. 

3. Following the outcry Theresa May has offered the ‘clarification’ that there will be a consultation on the proposal and that there will also be a proposal to cap the costs - a commitment to cap costs at £72,000 had already been made in the last election but quickly reneged on. 

4. Both the original manifesto commitment and the ‘clarification’ envisage a role for private insurance, with Conservative politicians generally keen on trying to create a market for such insurance - something which has so far failed to materialise because the reality of the balance of risks and costs undermines the profitability of such insurance. 

5. The current debate on how to fund social care has nowhere to go because there is an irresolvable conflict between the widespread feeling that forcing people to sell their homes is unjust, and the Tory reluctance to raise taxes.  The only proposal which would satisfy the Rawls veil of ignorance principle is that put forward by Andy Burnham, the last Labour health secretary, in 2010 that a national social care service should be developed, which is not means-tested and is funded by a hypothecated 10% tax levied on inheritance.

But that proposal was sunk when the Daily Mail labelled it a ‘death tax’. 

6.  Also missing from the debate is the recognition that the provision of social care is not just an issue concerning older people but is also an issue concerning disabled children and people of working age.  The labelling of the issue as ‘elderly care’ makes invisible the injustice facing younger people resulting from the Tory manifesto commitment.  

7. The proposals in the Tory manifesto - and the wider public debate -  do not address the failure of ‘the market’ to deliver good quality, sufficient home care or residential care.  As I pointed out in my previous blogpost on social care, residential and home care providers are struggling to make a profit, unless their finance capital owners can make a profit out of the value of land and buildings. There is an ever widening gap between what local authorities can afford to pay and what the actual costs of running a service are.  Many providers are pulling out of local authority contracts or leaving the market altogether.  Those that remain are at risk of delivering poor quality services which makes abuse more likely (as distressingly highlighted by the BBC video posted in my previous blogpost).  Many providers can only remain in business because they charge ‘self-funders’ (people who pay for their own care) over the odds, but this 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.

8. The final point is that in all of this we have lost touch with the aspirations that people of all ages have: whatever the nature and severity of an impairment or illness, we all want to make choices and exercise control in our daily lives; we are all entitled, because of our common humanity, to a life free of abuse and deprivation, and, if we need assistance, for that assistance to be delivered in a way which maintains our dignity and respect. 

We need a radical change in policy on social care which needs to recognise and address three issues:

  • the attempt to deliver social care through a so-called ‘free market’, promoted by all governments since the NHS and Community Care Act 1990, has failed
  • the need for social care is the same as the need for healthcare - no-one knows whether/when they will be unlucky enough to experience a need for either health or social care.  Social care, like health care, should therefore be funded by progressive taxation, giving access to all regardless of income.
  • the underlying principles, and the practice, of the provision of social care must follow the principles of independent living, as developed by the disabled people’s movement. To summarise Article 19 of the Convention on the Rights of Persons with Disabilities, this means that, according to the Convention (signed up to by the UK government) we all have the right to live in the community with choices equal to others; we all have the right not to be obliged to live in a particular living arrangement; and we all have the right to personal assistance to support our daily lives.  

Monday, 17 April 2017

Personal Independence Payment: why has the government decided there are “too many disabled people”?

The British government has recently acted to prevent people with mental health difficulties qualifying for the higher rate mobility component of Personal Independent Payment (a benefit intended to help towards the additional costs faced by disabled people).  

The basic facts are:
  • when introducing Personal Independence Payment in 2013 (which replaces Disability Living Allowance) the government claimed to be giving ‘parity’ to mental health and physical conditions in developing the eligibility criteria
  • recently a Tribunal Judge took the government at its word in terms of treating mental health and physical conditions equally and ruled that criteria 1f - “Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid" - could also apply for mental health reasons.  This would qualify people with mental health conditions for the higher mobility rate of PIP
  • in response, the government introduced an amendment so that criteria 1f now reads: “For reasons other than psychological distress….”. 

There has been much criticism of the government’s action, but it’s important to also set this particular controversy in a wider context. 

As Alan Roulstone identified, we are seeing a time of increasing concern expressed by government that ‘too many’ people have been classified as entitled to support because of illness, impairment or disability. This trend started in the 1990s but has intensified since 2010.  It is no accident that the current controversy focusses on whether people experiencing mental ill health are ‘really disabled’.  According to the Adult Psychiatric Morbidity Survey the incidence of mental health problems has increased since 2007 and this poses a problem for any government attempting to reduce the amount of money spent on disability benefits. 

When Mobility Allowance - the forerunner to Disability Living Allowance - was first introduced, entitlement was established by a medical professional certifying that a person’s mobility was impaired.  Disability Living Allowance, introduced in 1992, not only extended the benefit to recognise additional daily living costs but also used a form to be completed by the applicant which, although medical evidence could be required, recognised an element of self-assessment.

In contrast, Personal Independence Payment, which replaced DLA in 2013, relies on the notion of a ‘more objective’ assessment process which involves an initial form to be completed by the applicant, a face to face assessment carried out by one of two companies contracted by the government, and a Department for Work and Pensions (DWP) decision maker. Entitlement is determined by scoring against a range of both ‘moving around’ and ‘daily living’ descriptors.  While medical evidence can be required it is secondary to the scoring system. As with the Work Capability Assessment, the focus is (supposedly) on function rather than on diagnosis.

The replacement of DLA with PIP was motivated by the political goal of reducing public expenditure.   Although there has long been a tendency to divide disabled people into the ‘deserving’ and ‘undeserving’ in governments’ attempts to minimise collective responsibility, this became much more explicit and associated with changes in social security policies since 2010.  Public debate on disability benefits during the last seven years has been dominated by the question of who is ‘really disabled’ - politicians are focussing not only on what collectively funded support should be made available to disabled people but also on who is to be recognised as disabled.

Disability Living Allowance was a popular benefit with no stigma attached to receiving it.  Increasing numbers of people claimed it - partly because more disabled children were surviving, partly because of increasing take-up by people with learning disabilities and people with mental health difficulties (encouraged by government and disability organisations in the late 1990s and early 2000s). An ageing population also meant that growth in expenditure was inevitable as, although an initial claim could not be made after the age of 65, it could continue to be received as people grew into old age. 

This increase in expenditure posed a problem for the government elected in 2010 intent on reducing public expenditure.  The replacement of DLA with PIP was intended to reduce projected expenditure by 20%.  The new form of assessment introduced for PIP aimed to achieve this by reducing recognition of impairment, illness or disability.  Esther McVey, then Minister for Disabled People, told Parliament in December 2012 how the government expected that almost 60% of people to be moved from DLA onto PIP would either receive a reduced benefit on reassessment or would receive no benefit at all: “By October 2015 we estimate we will have reassessed 560,000 claimants. Of these 160,000 will get a reduced award and 170,000 will get no award”.

George Osborne, when Chancellor of the Exchequer, then tried to reduce  further the numbers qualifying by restricting the eligibility of people who rely on aids and adaptations to go about their daily life, and thereby to make a projected saving of £1.3bn. A public outcry, including opposition from many Conservative MPs, resulted in this proposal being withdrawn. [See my previous blogpost on this, which attempted to correct some of the many misleading statements made by politicians and journalists at the time]

While we have been living through the state’s attempts to reduce the numbers of people generally recognised as ‘disabled’, the current controversy about PIP - which will be debated in Parliament on April 19th -  sees a particular onslaught on the realities of the lives of people who experience mental ill health. This was starkly illustrated by the head of the Prime Minister’s Policy Unit, interviewed on the BBC on 26th February.  George Freeman articulated the way in which people with mental ill health are considered by some politicians to not ‘really disabled’. Explaining why the government was acting to reverse the Tribunal’s ruling (referred to above), he said: ”These tweaks are actually about rolling back some bizarre decisions by tribunals that now mean benefits are being given to people who are taking pills at home, who suffer from anxiety…..We want to make sure we get the money to the really disabled people who need it”. [my emphasis]

No doubt George Freeman had in mind that the ‘really disabled’ people are those whose impairment and consequent additional costs are visible. This is to betray a lack of knowledge about disability and in particular of the way that mental ill health can be as incapacitating as physical impairment, if not more so, as pointed out by Baroness Jane Campbell in a recent House of Lords debate on the PIP amendment:

People in my position, with a highly visible, severe impairment, tend to find it easier to demonstrate and receive support the we need to get from A to B, than those experiencing mental health challenges…… But let us be in no doubt: the impact of panic attacks and anxiety   - not to mention schizophrenia, dementia and autism - on being able to “plan and follow a journey” are equally, if not more fraught with profound obstacles, as the effects of visual or physical impairments. As Jenna Guillaume put it: 
‘Suddenly, for no reason at all, as I step out of my front door, the prickles in my chest get sharper and my head gets foggier. My heart pounds faster as it tries to defend itself from impending danger. My breathing becomes shallow as I desperately try to get air into my body and brain... I try to grasp onto something, anything, to keep me tethered and whole’.
The term ‘anxiety’ may sound manageable, but unexpectedly and unpredictably collapsing in agony in public places can overwhelmingly restrict people’s mobility. 
Speaking to a young woman with ADHD and Tourette's syndrome last week, I heard about her recent train journey, where she suffered a severe anxiety attack. The train had to be stopped and the emergency services called. This expensive scenario could have been avoided if her PIP had not been reduced from the high to standard rate award a couple months ago, allowing her to continue paying for a travel companion or use taxi's.
People whose support needs and additional costs stem from conditions which are not immediately visible and do not conform to the traditional view of disability are easy targets in the current climate. The House of Commons Library calculated that  “reversing the effect of the mobility activity 1 judgment could affect 336,500 claimants (with 282,500 no longer entitled to any mobility component). The latter changes could affect people with a wide range of conditions including learning disability, autism, schizophrenia, anxiety conditions, social phobias and early dementia”.  

The government’s attempt to reverse the Tribunal’s ruling is not only undemocratic (as Labour’s Shadow Work and Pensions Spokesperson, Debbie Abrahams, pointed out) but it is also discriminatory - and ironically goes against what the government originally said was one of the justifications for the new form of assessment when PIP replaced DLA.  Maria Miller the then Minister for Disabled People said,  “PIP is designed to assess barriers individuals face, not make a judgment based on their impairment type”.  Yet, as MP Stephen Timms pointed out during the emergency debate on the new regulations: 
The changes in the regulations are different from the original intention. They introduce an explicit judgment based on impairment type; the original intention was to have no such distinction. The regulations introduce a distinction that was not in the benefit’s original intention. They say that someone is in if they struggle to plan and follow a journey, but if their problem is because of psychological distress, they are out. It is an explicit judgment, it is explicitly contingent, and it carves out a large group of people with mental health problems.

In the complete reversal of its position when PIP was introduced, the government has made clear not only its motivation behind current policy on disability benefits but also a prejudice against people experiencing mental health difficulties.   Penny Mordaunt, the current Minister for Disabled People, told the Social Security Advisory Committee in February this year that: 

people who cannot follow a journey because of a visual or cognitive impairment are likely to need more support (in their lives generally) than someone who experiences psychological distress, for example as a result of a social phobia or anxiety, when they undertake a journey’. Letter from the Minister for Disabled People, Health and Work to SSAC. 24 February 2017

Not only is this making diagnosis the basis for eligibility - which the government expressly said PIP was not intended to do - but Penny Mordaunt also expressed a singular lack of understanding about ‘psychological distress’ when she claimed in a letter to Jane Campbell that such experiences “can be overcome by reassurance”. 

The government is so intent on reducing public expenditure that - having failed so far in its attempts to sufficiently reduce the total amount spent on funding disabled people’s additional costs - it now appears to be using unscrutinised changes to the assessment process to reduce eligibility. Evidence has emerged that higher percentages of people lost their entitlement to PIP or had it reduced when they were reassessed in 2016 than in 2014 or 2015, and the Department for Work and Pensions and their contractors have been accused of changing their procedures and practices to bring this about.  There is also evidence of a recent spike in the numbers of people scoring no points at all in their assessment for PIP. 

Last year (2016) saw an increase in caseloads amongst advice agencies (Citizens Advice told the Work and Pensions Select Committee they had seen an increase of a third) and increasing reports of ‘inaccuracies’ in the assessment reports written by Atos and Capita, the two companies responsible for carrying out PIP assessments (one advice agency told the Select Committee that the only part of the process which worked well was the appeals process). 

Underpinning all of this is the intention of reducing the numbers of people recognised as needing support in order to reduce the amount of money that has to be raised via taxes. While the debate is about who is ‘really disabled’ or ‘deserving’ - with the word ‘vulnerable’ being used to mean the ‘deserving and really disabled’ - it is fuelled by a particular political approach to the kind of economy and society that most of today’s politicians subscribe to.  This is not only an issue for disabled people therefore but it is about the very nature of our society and what we all want for our futures.  

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.

Thursday, 29 December 2016

The right to "live in the community with choices equal to others": Human rights and People with learning disabilities and/or autism

I belong to a group called Keep Our Human Rights in Suffolk. Our aims are: to promote greater awareness of the relevance of human rights to people in Suffolk in their everyday lives; and to champion a better quality of debate about and celebration of human rights locally.  For the last year, we have been submitting Freedom of Information requests to the Suffolk Clinical Commissioning Groups (who purchase healthcare on behalf of us all) about people with learning disabilities and/or autism who have been placed in specialist in-patient facilities. 

This blogpost explains why we’re doing this, what we’ve learnt and what the relevance of all this is to human rights.
The origins of the legal framework of human rights are to be found in the acceptance that it is wrong for the state to act in a way which denies dignity and freedom to individuals on the basis of their membership of a specific group.  

Over many years, there has been much evidence that the state, in the form of health and social care services (and on behalf of us all), has acted in ways which deny dignity and freedom to people with learning disabilities and/or autism.  From the scandals of long-stay hospitals in the post-Second World War era through to their modern versions - such as Winterbourne View - time and again appalling treatment has been revealed, while services and government have vowed to ‘learn the lessons’ to avoid such things happening again.

The publicity about Winterbourne View prompted the government to promise in 2012, that by 1st June 2014, people with learning disabilities and/or autism who were in such institutional settings would instead receive “personalised care and support in appropriate community settings”.  In 2015 they admitted that this promise had not been fulfilled and another three year programme was announced, the Transforming Care Programme, to “enable people to live more independent lives in the community, with support, and closer to home”.

During the same period, it has been recognised that there is institutional discrimination in the way the NHS treats people with learning disabilities - discrimination revealed by investigations into unnecessary deaths which resulted from a failure “to provide the most basic nursing care such as nutrition, hydration and pain relief, and .. denying people dignity and respect”. 

One terrible example of the consequences of failing to meet people’s needs was to be found in the experiences of Connor Sparrowhawk and his family.  Connor was an 18 year old who, in March 2013, was admitted on a short-term basis to an Assessment and Treatment Unit because the services were not provided to enable his family to support him safely at home. He drowned in the bath at the Unit in July 2013 - a death which an inquest found was entirely preventable.  Southern Health NHS Trust admitted that it had breached his and his family’s human rights under Article 2 of the European Convention on Human Rights, the right to life.

This was followed by a review which sought to establish how many unexpected deaths there were in the Trust’s services between 2011 and 2015 and how many were investigated.  The review found that if you had a learning disability or were over 65yrs old and using mental health services, there was very little chance your death would be looked into. 

The #JusticeforLB campaign - a campaign to get justice for Connor and his family - prompted the #7daysofaction campaign by other families whose loved ones are in Assessment and Treatment, or other in-patient, Units.  These are young people who should benefit from the current Transforming Care Programme which requires health and social care commissioners to develop local Transforming Care Plans to develop the community services necessary to move people out of existing in-patient units and prevent future admissions. 

Keep Our Human Rights in Suffolk (KOHRS) have been trying to find out, for a year now, how many people with learning disabilities and/or autism from Suffolk are in specialist in-patient facilities and what plans there are to enable them to access their human right to a private and family life, to dignity, and to independent living. 

We have received contradictory and confusing responses to our Freedom of Information requests, and - despite email exchanges and a meeting with health commissioners - we are still not clear how many people are in specialist in-patient units, or what investment in services will be made to enable them to return to their local communities.  Suffolk’s Transforming Care Plan (TCP) was placed on their website but important information was missing and none of the hyperlinks to supporting documents worked.  This Plan has now been removed from the website. 

One particular concern we have is that we also received information from NHS England about the number of Suffolk residents in placements that had been commissioned centrally rather than by local health and/or social services.  These people did not seem to figure in the initial TCP and, when we asked Suffolk commissioners about them, their response was “We cannot account for differences in figures”. Although we have sent them the information that NHS England provided to us, the local commissioners - both health and social care - have refused to discuss this any further.

We also have concerns about the services of the main local service provider in Suffolk, the Norfolk and Suffolk NHS Foundation Trust.  This Trust has been the subject of a vigorous local campaign about the cutbacks in, and inadequacies of, its services and the scale of ‘unexpected deaths’.  The recent inspection by the Care Quality Commission identified concerns about services for people with learning disabilities and/or autism, in particular the safety of services, the level of restraint and the involvement of patients and their families in decisions about their care.

We have found that it is hard to make sense of the information available to members of the public, including that which we’ve obtained through Freedom of Information requests.  Yet, if there is one common message that runs through the unsatisfactory history of how our fellow citizens with learning disabilities have been treated, it is that a lack of public scrutiny makes possible the abuse of human rights.  We all need to understand what public services are doing on our behalf.

Maybe Suffolk’s Transforming Care Plan will deliver the ‘ordinary life’ for people with learning disabilities and/or autism that has been too often denied.  Maybe there isn’t anyone who has ‘disappeared’ into the system - as seems to be indicated by the discrepancy between the NHS England and the Suffolk figures. Maybe - despite the crisis in social care funding - local services will be developed and funded that deliver true choice and control to people with learning disabilities. Maybe specialist services will no longer be associated with inappropriate medication or restraint.  Maybe in future services will be responsive to people with learning disabilities’ health care needs so that they will not die, on average, 13 years sooner than the average for men, and 20 years earlier for women.

Our concerns stem from the fact that the evidence is not in the public domain to assure us of any of this.  Our concerns also stem from the fact that human rights should be at the core of how the needs of people with learning disabilities are responded to - but we see no evidence of this.  When the necessary investment and changes to services are not made, basic human rights, such as the right to a family life, are likely to be withheld. Every day that those responsible do not act is another day in the degradation of people’s lives. Making information scarce, and a low commitment to sharing it, is itself a barrier to ensuring their human rights are protected and promoted.

The underlying principle of human rights is that they are universal - by definition they apply to us all by virtue of our common humanity. A failure to acknowledge and uphold an individual's or a group of people’s human rights is a denial of their humanity. As the Supreme Court confirmed in 2014  “Human rights have a universal character….” and this applies to everyone, “regardless of their disabilities”.

Not only are people with learning disabilities and/or autism accorded the same human rights as other human beings but the United Nations Convention on the Rights of Persons with Disabilities confers specific rights to “live in the community, with choices equal to others”. Moreover States that ratify this Convention (as the British government has) are required “to take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
  1. Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
  2. Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
  3. Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.”

KOHRS believes that all those responsible for developing local Transforming Care Plans should have these rights at the forefront of everything they do.  We will continue to try and find out whether that is the case in Suffolk and we hope that others will similarly raise these issues in other localities.

Tuesday, 8 November 2016

The Work, Health and Disability Green Paper: Magical thinking or evidence-based policy?

“To own the discourse is to win the argument”

The Green Paper on Work, Health and Disability  was published online late afternoon of Monday 31st October.  The DWP had been briefing since the Saturday before, that a major reform was proposed to the Work Capability Assessment and that all the evidence was that work is good for people’s health.

Newspapers and television news highlighted the proposals but no-one actually saw the document until news media had been running the DWP storyline for almost 48 hours  The BBC initially intended to film some interviews at a London disabled people’s organisation on Monday afternoon but cancelled it as by then the story was no longer news.

The consultation on the Green Paper is running until 17th February, long enough for individuals and organisations to get to grips with what is really being proposed. 

I’ve focussed in this blogpost on three important contentions made in the Green Paper, on which some of its proposals are based.  I’ve tried to get behind the spin which accompanied its launch to see what exactly is being proposed.

Contention No 1:  There is a causal relationship between work and health, such that if someone moves from unemployment into work their health will improve.

The Green Paper opens with the statement that “The evidence that appropriate work can bring health and wellbeing benefits is widely recognised”. The reference for this is the major review of evidence, published by the DWP in 2006.

On the face of it, this is a fairly uncontentious statement.  The word ‘appropriate’ recognises that not all work has a positive impact and the phrase ‘can bring’ indicates that this is not a claim of a unilinear causal relationship.  Indeed, early on in the Green Paper the complexities of the relationship are acknowledged: 

…….whilst work is good for health in most circumstances, the type of work matters. Many factors such as autonomy, an appropriate workload and supportive management are important for promoting health at work.

This reflects the conclusions of the 2006 review.  The Green Paper could also have drawn on more recent longitudinal research from Australia which found that low paid, insecure jobs, characterised by a lack of control, were associated with poorer health than that found amongst those people who remained out of work. 

Getting a high quality job after being unemployed improved mental health by an average of 3 points, but getting a poor quality job was more detrimental to mental health than remaining unemployed, showing up as a loss of 5.6 points.

This is an important finding, particularly bearing in mind the conclusion of the DWP’s 2006 literature review that: “After leaving benefits, many claimants go into poorly paid or low quality jobs, and insecure, unstable or unsustained employment. Many go on to further periods of unemployment or sickness, and further spell(s) on the same or other social security benefits”.

Unfortunately, the tone of the rest of the paper and its proposals assume a straightforward unilinear relationship between being in paid employment and good health, as illustrated by what the DWP calls an ‘infographic’ on page 4 of the Green Paper.  This shows two circular relationships, good health and work on the one hand and worklessness and poor health on the other. 

The Green Paper would have been more accurate if it had concluded that, while paid employment can increase your standard of living, social interaction and self-esteem, it can also be bad for your health and can create or worsen illness or impairment. Whether work is good for your health will depend on your state of health and the nature of the job. As, according to the DWP’s own evidence, people leaving benefits often go into poor quality jobs, they are less likely than the average person to find that paid employment has a good impact on their health. 

Contention Number Two:  Withdrawal or reduction of income (or the threat of withdrawal) will increase entry into employment.

The payment of out of work benefits has always been conditional but since 2010 the conditions have increased and withdrawal or reduction of payment can now last from four weeks to three years.The assumption is that this threat of, or the actual experience of, withholding income will make it more likely that a person will take steps that increase entry into employment.

The recent decision to reduce, by almost £30pw, the money paid to people who have been assessed as being unfit to work but able to take on work related activity (the ESA Work related activity group) is based on the same assumption: the DWP claimed it will “remove the financial incentives that would otherwise discourage claimants from taking steps back to work”.

In an earlier blogpost I examined the evidence that DWP relied on to make this claim.  It’s worth reiterating that there is no evidence of a causal relationship between a reduction in benefit levels and an increase in employment amongst disabled and sick people.

There is, in fact, a more convincing case to be made that reducing or withdrawing income will make people less able to gain employment. An evaluation of the impact of benefit reduction found that the more benefit was removed the less likely they were to move into employment.  A study which carried out four ‘natural’ experiments in the US and in India concluded that poverty undermined people’s ability to think clearly, carry out tasks and to make good decisions (a conclusion which is perhaps obvious to anyone who has experienced the pressures that come with even short-term financial difficulties):

The poor must manage sporadic income, juggle expenses, and make difficult tradeoffs. Even when not actually making a financial decision, these preoccupations can be present and distracting. The human cognitive system has limited capacity. Preoccupations with pressing budgetary concerns leave fewer cognitive resources available to guide choice and action.

The widely disseminated conclusion from this study was that, because people living in poverty expend more of their mental capacity on managing with a low income, government programmes aimed at helping them should not impose what some called a ‘cognitive tax’ - such as complicated forms, frequent monitoring systems, onerous requirements to prove eligibility.  As the Behavioural Insights Team argue:

The worries involved in making ends meet every day already deplete [cognitive] bandwidth so government services aiming to tackle disadvantage – such as savings schemes, employment advice and parenting programmes – should be required to pass a cognitive load test to ensure these services do not make it harder for people on low incomes to make good decisions for themselves.

The Behavioural Insights Team is an organisation originally set up by the government (the ‘Nudge Unit’) and still partly owned by them. This study was carried out in partnership with the Cabinet Office.  We would normally expect their conclusions to be treated seriously but that does not appear to be the case in this instance.

Contention Number Three: ‘Employment support’ will reduce the numbers of people on long-term out of work benefits

The Green Paper indicates an intention to reduce the numbers of people in the ESA Support Group. These are people who have been assessed as having limited capability for employment and also limited capability for work-related activity - meaning that they are exempt from complying with requirements to take ‘steps back to work’.  Concern that there are ‘too many’ people claiming this type of benefit dates back to the 1990s when Invalidity Benefit was replaced by Incapacity Benefit.   A series of changes since then in the method and process of assessment have not had the desired effect of reducing numbers qualifying for long term sickness and disability benefit.

The Green Paper proposes yet another change in the assessment regime and an extension of ‘employment support’ to people who have been assessed as not able to either work or to engage in work-related activity.  Instead of one assessment (the Work Capability Assessment) there would be two: the WCA would assess financial entitlement and then everyone on ESA, whether in the Support Group or not, would be subject to a “separate process” which would decide whether “someone should engage with Jobcentre Plus or specialist programmes”.

People would be required to have continuing contact with a ‘Work Coach’ who: 
could have full discretion to tailor any employment support to each individual claimant. This approach would be truly responsive, allowing the work coach to adjust requirements and goals dependent on changes in a person’s condition or circumstances.

While Damien Green previously announced that those in the Support Group would not have to undergo repeated WCA assessment, this new system could potentially require repeated and continuing ‘discretionary’ assessment by a work coach as to what a person should be required to do.

So let’s look at whether there is any evidence that the ‘support’ to be offered by this new system is likely to increase employment amongst disabled people or people with long-term health conditions.

The first thing to point out is that the assumption underpinning the Green Paper’s proposals is that people who are unfortunate enough to experience ill health and/or disability and unemployment are not capable of - or are not to be trusted to - make decisions in their own best interests.  Instead it is the role of a State employee or contractor to do this. 

So the Paper proposes that “trained work coaches could have discretion to make case-by-case decisions about the type of employment support a person is able to engage with” (para 132).  

The second thing is that anyone entering this system gives up all right to privacy about personal information held on them by the “NHS, the adult social care system or through other benefit applications, such as from a Personal Independence Payment application” as the assessment for financial support (the current WCA) and the work coach would draw on these sources of information (para 135). 

A third point is that the employment support programmes have not in the past been very successful at helping people on long-term out of work sickness/disability benefits to find and retain paid employment.  Only 12.5% of ESA new claimants on the Work Programme get a job outcome within two years. The equivalent figure for people moving onto ESA from Incapacity Benefit is 4.7%.  Work Choice, the specialist programme aimed at disabled people has a higher rate of success but less than 1 in 5 of participants are on ESA with the majority being on Job Seekers Allowance, so the programme has not proved its effectiveness with people on ESA.

As the government has previously announced, the Work Programme and Work Choice are being discontinued and replaced with a new Work and Health Programme.  However, this will only have 20% of the funding previously invested in employment support.

The Green Paper also proposes that the:

earlier engagement between an individual and a work coach in Universal Credit will also serve as a gateway to a wider, integrated system of support offered by the Department for Work and Pensions and other agencies, such as the NHS and local authorities. (Para 84)

This “wider, integrated system of support’ is called Universal Support and is intended to “assist people with their financial and digital capacity throughout the life of their claim”.

Through Universal Support we are transforming the way Job centres work as part of their local communities to ensure they more effectively tackle the complex needs some people have and support them into sustainable employment. (Para 85)

Unfortunately, this transformation is not borne out by the DWP’s own evaluation of Universal Support in the trial areas.  The evaluation, published in July this year, concluded:
the results suggest that participation in USdl had no statistically significant impact on either digital or financial capability…..Overall, the estimated annualised cost of the eleven trials was just over £4 million. Staff costs made up £2.7 million of the total.
So £4million was spent with no resulting improvement in claimants’ ability to engage with the UC system or with managing their finances.
(Incidentally, the Green Paper also holds up the Troubled Families programme as ‘another example of an integrated approach’.  It’s surprising that they infer that this programme makes any difference as the evaluation published recently “was unable to find consistent evidence that the programme had any significant or systematic impact”)
It is unlikely therefore that there will be sufficient assistance available through the specialist employment support programme.  And Universal Support is unlikely to be of much assistance in terms of helping people to navigate the complexities of the system. So what will be offered to people in the Support Group as part of the ‘claimant commitment’?  The Green Paper does not spell this out explicitly but it would seem that the intention is that Work and Health coaches will decide what kind of health-related intervention someone needs.

How long before part of the ‘claimant commitment’ includes a requirement to participate in a ‘health intervention’ of some kind and sanctions are attached to non-compliance?

It isn’t really employment support that is on offer - rather we are on the road to a situation where people who are too ill or disabled to work are required to subject themselves to health interventions that an employee (or contractor) of the DWP decides is good for them.

In summary….

It’s important that responses to the Green Paper home in on what is actually being proposed, rather than merely respond to the questions posed by the DWP.  The proposed changes are merely the latest in a long line of attempts to reduce the numbers of people qualifying for long-term out of work sickness/disability benefits.  If the assumptions on which the proposals are based are not backed up by evidence then they will be unlikely to have any more impact on reducing the disability employment gap than their predecessors.

And finally….. 

Magical thinking refers to the false attribution of causal relationships. In the context of psychology it refers specifically to the belief that one’s thoughts by themselves can bring something about - or that thinking something is the same as doing it.

Not only does this Green Paper ascribe a fallacious unilinear causal relationship between work and health, but it replicates a common feature of government policy - the assumption that saying something will happen makes it happen.

This is the fourth time in my engagement with social policy that a government has complained about the number of people ‘languishing’ on long term out of work benefits.  The fourth time that proposals are made which will supposedly reduce these numbers.  Any bets on how soon we will see a fifth?