Sunday, 3 September 2017

Disabled people and the next Labour Party Manifesto

There could be a general election in the United Kingdom in the next year - or this government may stagger on for longer.  But whenever it comes, if Labour win, the new government will face a major challenge to start to undue all the harm that Coalition and Conservative governments have caused to disabled people since 2010.

The Manifesto on which Labour fought the general election this summer contained many commitments welcomed by disabled people and our organisations.  But it was written in haste and there is now the opportunity to ensure that the next manifesto commits Labour to addressing what the United Nations only last week called a “human catastrophe”. This was the conclusion of the UN Committee on the Rights of Persons with Disabilities when it completed its first review of the UK’s compliance with the UN Convention on the Rights of Persons with Disabilities (CRPD). 

Their two major concerns were that previous progress on independent living has been rolled back, resulting in “too much institutionalisation”; and that Deaf and disabled people’s standard of living has been reduced by changes in the benefits system and by continuing unequal access to employment opportunities.  The Committee had received damning evidence from the UK Independent Mechanism and also from a coalition of Deaf and disabled people and was not impressed by the UK government’s response.

Labour has a major opportunity to commit a future Labour government to returning the UK to being a world leader in promoting the human and civil rights of disabled people.  The UN’s report illustrates that this opportunity can’t come too soon. 

The 2017 Manifesto made clear that “Labour supports a social model of disability. People may have a condition or an impairment but they are disabled by society. We need to remove the barriers in society that restrict opportunities and choices for people with disabilities.”

This is a welcome starting point for any government seeking to address the “human catastrophe” we now face.  But the policies set out in the Manifesto didn’t go far enough. Labour need to be more ambitious in its aspirations for disabled people - and such ambitions would affect a number of different policy areas. 

So here are my thoughts for what needs to be discussed when the next Manifesto is developed - I’m sure others can think of more.

The starting point must be, not just a commitment to recognise and tackle disabling barriers, but also to deliver Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD): the right “live in the community, with choices equal to others”.

Labour needs to commit to both the legislation and the provision of services to bring this about.  This means:

1. Enshrining Article 19 in British legislation: that is, giving people the right “to live in the community, with choices equal to others”.  This, for example, would prevent local authorities and Clinical Commissioning Groups from forcing people into institutional care against their will (which is what can happen when they limit the funding available to enable someone to live in their own home to the cost of nursing or residential care).  It would also give people with learning disabilities and/or autism who are incarcerated in long-stay, mostly privately run, institutional provision the right to insist that the large sums of money spent on their care is instead used to enable them to live in the community.  It would place a duty on central and local government to ensure that community services are available which enable a real choice - for people of all ages - between living in your own home and residential or nursing care.

2. Developing not a ‘national care service’ but a national independent living service. In other words, to quote a previous Labour government commitment which was never realised, to deliver:

a single community based support system which focuses on all aspects of what people [of all ages] need to maximise their health and wellbeing and to participate in family and community life. The right of the individual disabled person to determine the kinds of services and support that they need will be at the heart of this reformed system.

3.  Recognising that social care is not just about older people and residential or nursing care.  Forty-eight percent of the total amount of money spent on social care is spent on people aged between 18 and 64 - but you would have thought from recent political and public debate that most people using social care were in their 80s and 90s and that the only issue was whether there were enough places in nursing homes. 

4. At the same time, Labour should recognise that older people also have a right to choice and control over their lives and must be included within the delivery of Article 19 rights.  The current debate on social care is in danger of becoming entirely about the supply and funding of residential and nursing homes.  My aspiration for independent living has not diminished just because I am now past working age. Article 19 rights will be as relevant to me when I am 80 as they were when I was younger. 

5. Recognising that, like health care, access to social care should not be dependent on ability to pay. The current system is unjust because it is a matter of luck as to who needs a substantial amount of care when they reach the end of their lives, a matter of luck who has a child born with significant physical impairments or learning disabilities, a matter of luck who has an accident in adulthood that means they need support to continue their life as before. As I said in a previous blogpost, 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 healthcare is funded by a progressive taxation system to ensure that health care is there if and when we need it.  That’s also the basis on which social care should be funded. 

6. Recognising that the privatisation of social care which followed the NHS and Community Care Act of 1990 has been a disaster.  This is not to say that the only or even the better alternative is to bring back local authority care services.  Instead, Labour should commit to developing new ways of delivering support services, such as user-led services and co-operatives - not old style charities run by the great and the good with the values of ‘doing unto people’ but non-profit organisations which are truly accountable to those to whom they provide a service.  This would also mean developing new ways of commissioning services, bringing service user representatives into the heart of the process and also ensuring commissioning was fully compliant with the Social Value Act.  

7. Article 19 rights cannot be realised unless disabled and older people have an opportunity to access housing which is affordable and suitable to meet their needs.  Labour needs to commit to updating and strengthening Lifetime Homes Standards, and ensuring that these standards are met in all new developments.  The 2017 Manifesto commitment to a new housing ministry which “will be tasked with improving the number, standards and affordability of homes” is welcome but the needs of all types of households must be at the centre of what it does.  Labour must also ensure that policies in other areas do not have a negative impact on older and disabled people’s access to housing - in particular, the current government’s changes to the way supported housing is funded must be reversed as they are seriously undermining the financial viability of extra care housing for older people and other forms of supported housing. The under-funded Disabled Facilities Grant system needs a new lease of life: if support to make their existing homes suitable for older and disabled people was available, this would prevent many hospital admissions and moves into residential care. Labour should therefore commit to an expanded programme for enabling disabled and older people to adapt their homes to meet their needs.

8. The commitment to abolish the Work Capability Assessment is welcome.  But it must not be replaced with yet another type of assessment based on assumptions which are far removed from the reality of people’s lives. The welfare reform agenda which commenced under the last Labour government is a mess - and the full roll-out of Universal Credit will only make things worse for disabled people. So the commitment in the 2017 Manifesto to “reform and redesign” Universal Credit - and the associated specific commitments - is a good start but the next Manifesto should also be much clearer about the principles on which any reform is based. Here are some ideas, with particular reference to disabled people:

  • an ambition of social security in the literal sense - one that delivers the CRPD Article 28 right to an adequate standard of living - should be at the heart of the reform
  • a social security system which maintains an additional needs payment for disabled people (although at the same time replacing the current PIP assessment), based on the impact of both impairment/illness and disabling barriers, and which is not subject to a means-test
  • assessments which - unlike the current WCA and PIP assessments - are based on disabled people’s own experiences of, and their expertise on, the impact of both their impairment and/or ill health, and disabling barriers
  • a social security system which does not penalise people with fluctuating conditions
  • a social security system which recognises that some people with significant long-term conditions are unlikely to engage in formal paid employment, and which enables them to contribute to and participate in society in other ways.

9. The current government aims to halve the disability employment gap - an aim which is unrealisable because policies aimed specifically at increasing disabled people’s employment opportunities are not given sufficient weighting as a distinct policy area.  Labour should make this a significant area of policy development, co-producing policies with disabled people and their organisations.  The 2017 Manifesto committed Labour to commission a report into expanding the Access to Work Programme, but we don’t need a report on this programme - we already know that the funding of equipment, support and other adjustments has proved a valuable way of enabling people to take up and remain in employment. What we need is an expanded Access to Work programme as part of a comprehensive Disability Employment Strategy to deliver the support and adjustments needed - for people with all types of impairment and/or experiences of ill health. This should be entirely separate from the social security system - in order to avoid the focus becoming more about merely ‘getting people off benefits’, a mistake which this and previous governments have made.  Such a Strategy should have a major focus on how to make workplaces and working practices ‘fit’ for disabled people and should also learn from the experiences of disabled people’s organisations such as Breakthrough UK about how to support people into sustainable employment.

10.  And finally, the Labour Party could do worse than revisit the last Labour government’s Independent Living Strategy - a five year strategy which covered many of the points above, and more.  I’m biased because I was its Executive Director but the overall aims remain crucial for any government which seeks to deliver for all its people:
  • disabled people who need support to go about their daily lives will have greater choice and control over how support is provided.
  • disabled people will have greater access to housing, transport, health, employment, education and leisure opportunities and to participation in family and community life.
  There are many policy areas where a Labour government could make a real difference to disabled people’s lives - strengthening anti-discrimination legislation being but one that I haven’t specifically mentioned.  The above ideas are just a few which others will undoubtedly want to add to, or criticise and amend.  The most important point is that, if a government manages to make Article 19 - the right to independent living - a reality for disabled people (of all ages and impairments) then it will have made major progress in creating a society “for the many and not the few”.

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.