Friday, 27 November 2015

'We' and 'People like you": collective responsibility and the common good

I didn’t watch last night’s BBC Question Time (it’s a programme that’s bad for my blood pressure) but Twitter is awash this morning (27th November) with an exchange between an audience member and Matthew Hancock, a Conservative Minister.  

Having described the impact of cuts on her son (who has learning disabilities), she received the following response from Matthew Hancock:

Hold on, if we don't have a country that can live within its means then we can't fund those sorts of public services that people like you rely on.

There’s a revealing use of the words ‘we’ and ‘you’ in this response.  The phrases ‘we can’t fund’ and ‘people like you’ separate the population into two distinct groups - those who pay for and those who use public services. 

The point about public services is that they are (should be) services universally available to those that need them, made possible through the principle of collective responsibility and a progressive taxation system.  Matthew Hancock and his family may have no need at present for the type of services that the audience member was describing, but if that need should arise then the service would be (should be) available to him.

But the phrase ‘if we don’t have a country that can live within its means’ signifies a position adopted by those who have decision-making powers - justified by meaningless rhetoric and which has no room for the notion of the common good. Those who relegate public services for groups like people with learning disabilities to a low political priority do not see themselves as potential beneficiaries of a service, collectively funded, for those who need it.  If they think about it at all, they are likely to assume that they will be able to pay for the support they or their family might need - the idea of a common good is of no relevance to them (unless it’s an NHS emergency service of course, because that’s a service that is not, currently, provided by the private sector).

A separation of ‘we’ from ‘you’ inevitably follows. Those who need specific types of support are separated out from the mainstream by the language used about them, with Ministers (falsely) claiming to be ‘protecting’ the ‘most vulnerable’.  The ‘you’ who are not part of ‘we’.  

Five years ago, the word ‘austerity’ was used to justify a need to cut back on public expenditure because of the fall out from the banking crisis. The common good was sacrificed to the ‘need’ to bail out the banks.  Five years followed of undermining the social security system, the education, health and social care systems on which the majority of us rely at some point in our lives.  We are now in a new phase of an all-out assault on collective responsibility for the common good - now a political aim in its own right. This is illustrated, as I pointed out in a previous blogpost (here), by the decision to reduce the sickness benefit payable to disabled and ill people.  This is part of a long-term aim to replace collectively funded sickness benefit with privately funded insurance.  

Social care has never been properly funded through a progressive taxation system. Previous governments hoped, in vain, that ‘the market’ would develop insurance products to cover the cost of long-term care.  At the same time, the delivery of services have been increasingly privatised over the last 30 years and public funding to pay for these services has fallen further and further behind increasing demand.   Private providers are rapidly reaching the stage where they can only make a profit out of the most well-off self-funders and the insurance industry shows no signs of developing a financially sustainable product which would provide an alternative to public funding - not even to cover the reduced responsibility that individuals would have if ever this government introduces the proposed lifetime cap on care costs.  

The privatisation of sickness benefit is likely to lead to a similar situation as that in social care where there is increasingly unequal and inadequate provision to meet needs which no-one can predict but which can have a disastrous impact on people’s lives.  

This situation will only change if we as a society are prepared to step in to meet such needs on the grounds that it is in all our interests to do so.  But this current government, and the interests it represents, cannot see this because they, as Matthew Hancock so graphically illustrated, separate the ‘we’ of themselves from ‘people like you’, namely ‘us’. 

Friday, 30 October 2015

Independent living and disabled people: Rhetoric and reality

As in most areas of current British policy, there is a yawning gap between government rhetoric and the actual impact of policies on disabled people’s lives.  The government’s website provides a link to the United Nations Convention on the Rights of Persons with Disabilities but there is mounting evidence that its policies are taking us further and further away from the realisation of these rights. The most recent summary of this evidence is provided by Inclusion London’s excellent account published recently, which I would urge everyone to read. 

The gap between rhetoric and reality is perhaps most apparent in respect of Article 19.  All governments which have signed up to the Convention (as the British government has) commits them to: 

recognise the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall 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.

Our government is very keen to point out that disabled people in this country are better able to access this right to independent living than in many other parts of the world.  This is undoubtedly true but what it fails to acknowledge is that this progress was made as a result of government policies during the 20 years up to 2010.  Since then, our access to independent living, has been steadily undermined - and it is of no comfort to tell us that we are better off than if we were living in, say, Romania or Zimbabwe. 

Current rhetoric makes much of the Care Act 2014 and the roll out of personal budgets.  Personal budgets have their origins in the success of direct payments - cash payments in lieu of social care services which enabled disabled people to have choice and control over how their support needs were met.  It was recognised that not everyone wanted to take on the tasks and responsibilities of purchasing their own support so personal budgets were intended to give people control over the resources to which they were deemed to be entitled.  Their purpose was to deliver the same degree of choice and control as direct payments, but with social services authorities taking responsibility for managing the money. 

I’ve written before about the importance of recognising this original vision of personal budgets and how they were driven by the wish to deliver self-determination, the bed-rock of independent living. 

The idea that the current implementation of the Care Act is delivering self-determination is significantly undermined by the reality - and we should remember that April 2015 (when the Act was formally implemented) was not Year Zero.  The legislation was only a culmination of what local authorities were supposed to have been doing since the various attempts to 'transform' and 'personalise' social care since the 2007 Putting People First strategy. 

So what is the reality?

The most recent snapshot is given by a survey, initiated by the Independent Living Strategy Group, of people’s experiences of social care over the last year.  This found that almost half (45%) of respondents said that their quality of life had reduced and almost a third (30%) said that they had experienced a reduction of choice and control over the past year. This follows the government’s own evidence that - while there was a slight improvement in disabled people’s experience of choice and control between 2008 (the first year this data was gathered) and 2011 - from 2011 onwards progress was halted.  In 2008, one in five did not ‘frequently’ have choice and control.  By 2013 this had increased to one in three. (And the longitudinal survey which gathered this data has been discontinued)

But why would we expect anything different?  Funding for social care support has been declining since 2010, while demand has been increasing. This has resulted in: a reduction in the numbers receiving social care support; reductions in the amount of support people get; and a financial crisis amongst care providers as a result local authorities’ commissioning practices.

I can guarantee that the government will trumpet the increase in the numbers of people receiving what they call ‘self-directed support’. But this is just another example of the gap between rhetoric and reality. What this means is that more people in receipt of social care now receive personal budgets (about two thirds of total recipients). But the reality is that, far from delivering self-determination many local authorities are implementing personal budgets in ways which do not deliver choice and control.  Budgets are set at levels which do not allow for more than basic personal care and restrictions are placed on how money can be used. Instead of auditing whether budgets achieve outcomes, they are measured by requiring the purchase of specific units of time and type of service.  And very onerous and time-consuming record-keeping is often required which undermines flexibility and self-determination.  
In addition, independent living is getting more difficult to access for people who would have had their support needs met by the Independent Living Fund before it closed to new applicants in 2010. And those in receipt of ILF funding until its abolition this year are fearful of the consequences of transferring to local authority funding.
The Association of Directors of Social Services and the Local Government Association told the government that “the value of the personal budget ….will generally be at a lower level than the initial ILF/LA [Independent Living Fund/Local Authority] budget”. The Coalition government accepted that this will be the case when it published an Equality Analysis on closure of the Independent Living Fund. 
As local authorities carry out reassessments of people transferring from the ILF there is emerging evidence that significant numbers will receive lower levels of support.  A Freedom of Information request to one local authority has revealed that of the 60 who have been assessed, 53 have had their packages reduced.  Of these, 16 have seen cuts of more than 50 per cent; seven of between 41 and 50 per cent; and 11 of between 21 and 40 per cent. 
Disabled people in receipt of Independent Living Fund grants have voiced their fears that they may be forced into residential care.  That this may well not be an unfounded fear is confirmed by the National Association of Financial Assessment Officers (the people who carry out the means-test to determine whether disabled and older people should be charged for their care) who told the government “some councils may determine that residential care would be a less expensive option than a high cost home care package”. And there is recent evidence that Clinical Commissioning Groups, responsible for funding people whose care needs are deemed to require nursing care, are limiting the amount of support at home to the cost of a nursing home placement.  It is already the case that 1 in 5 young people with spinal cord injury are discharged from hospital to nursing homes for older people, partly because of lack of available housing, but it will only become harder for them to return home if funding from both local authorities and CCGs is squeezed further. 
People with learning disabilities are particularly disadvantaged by the closure of the Independent Living Fund. People with ‘severe learning disabilities’ make up the largest single group (33%) whose support needs were funded by the ILF and the government has recognised they are likely to experience a reduction in their support package when transferred to local authority funding. 
The Independent Living Strategy Group is an informal group of organisations and individuals who are seriously worried that independent living opportunities are rapidly diminishing. The Coalition government, although it signed up to the 2008 Independent Living Strategy, disbanded the Independent Living Scrutiny Group chaired by Jane Campbell, and failed to examine progress at the end of the 5 year Strategy.  In 2014, the ILS Group attempted to do this instead - albeit hampered by the discontinuation of, and failure to measure, the necessary data. 

We have now embarked on a monitoring of disabled people’s experiences of the Care Act, including a monitoring of what happens to people who transfer from the Independent Living Fund.  The recent survey is just the first stage.  Subsequent stages will try to measure the current government’s rhetoric against the reality of people’s actual experiences of receiving support. We fear that the gap - already wide - will just increase and that, far from making progress on delivering Article 19 rights to independent living, disabled people’s opportunities will in fact diminish. 

Wednesday, 30 September 2015

Please don't talk about the "most vulnerable".

Since 2010,  most political debates about disabled people have used the term “vulnerable” - or more often “most vulnerable” - to argue for or against current government policies on social security and social care. 

David Cameron and Iain Duncan Smith are particularly keen on this term.  As Cameron said in June this year:
Whatever the pressures, we will stand by my promises to protect the most vulnerable – including the most disabled who cannot work because that’s the sign of the compassionate country I believe in.
But it isn’t just Conservative politicians who have described disabled people in terms of their ‘vulnerability’.  Labour politicians have done it as well.  To take just one example, most Labour MPs speaking in a debate initiated by Labour’s Rachel Reeves in 2013 referred to ‘the vulnerable’ or ‘most vulnerable’ to argue the case against reforms to housing benefit.

The etymological origins of the word ‘vulnerable’ are to be found in the Latin word for wound.  Thesaurus offers alternatives such as: defenceless; open to attack; frail; exposed; unprotected; impressionable.  Cameron’s use of the word in his speech to the 2012 Conservative Party conference confirmed these meanings when he argued that:
Conservative methods are not just good for the strong and the successful but the best way to help the poor, and the weak, and the vulnerable.
Up until a few years ago, disabled people had been on a long journey away from this curtailment of our lives and ambitions,  a journey away from being defined as objects of pity and charitable endeavour to ‘look after’ and ‘protect’ us.  

Allan Sutherland, a disability activist writing in 1981, said;
We are not weak; we are not powerless; we are not alone.  Control of our future is ours for the taking.   
Such a vision - and the struggle for our human and civil rights which followed - is incompatible with the notion of ‘vulnerability’ as applied in current policy debates. 

Unfortunately, as the full implications of the ‘welfare reform’ agenda became apparent following the 2010 election, some disability activists and organisations started to also use 'vulnerability’ in their attempts to point out the injustice of the policies. 

By using the terms ‘vulnerable’ and ‘most vulnerable’, we are voluntarily taking ourselves back to those days when to be disabled was to be shut out, shut away from society, the object of pity, not part of mainstream society.  The words are as far removed from defining disability as a civil rights issue as it is possible to be.  

Not only that, if we use the term ‘vulnerable’ to make our case for a good quality life, we collude with the centuries-old categorisation of the ‘deserving’ and ‘undeserving’. 

These categorisations have little to do with people’s actual material circumstances but are based instead on supposed personality and psychological characteristics. 

This goes back to the days of the Poor Law, when Poor Law Guardians - custodians of the funds raised from ratepayers - attempted to distinguish ‘sham cripples’ . Like then, distrust and blame are still the most common values underpinning welfare reform,  People with impairments or illness which have no significant physical outward signs fare particularly badly within such a value system. Distrust and blame make it hard to get recognition for the functional limitations which accompany mental health difficulties such as social anxiety, post-traumatic stress disorder, or clinical depression.  Distrust and blame lead to a refusal to acknowledge the realities of people whose impairments or illness fluctuate. Distrust and blame even lead to people with terminal conditions being declared ‘fit to work’.

These days, instead of ‘sham cripple’ we have ‘shirkers’ and ‘scroungers’ and it is the word ‘vulnerable’ - or rather the term ‘most vulnerable’ - which is used in order to distinguish the ‘deserving’ and ‘undeserving’.  If you are categorised as ‘most vulnerable’ your impairment or illness is accepted as ‘real’ and, most importantly, not your own fault.  

The key thing about being vulnerable is that you lack agency, you depend on others to protect you.  In a world where politicians talk approvingly of ‘aspirations’ and ‘hard working families’, disabled and sick people are placed in a double bind.  The legitimacy of need for support is dependent on being ‘most vulnerable’ and, in order to get the support you need, you therefore have to place yourself in a situation where you are beyond aspiration and autonomy. 

As Caroline Richardson, writing for the Spartacus Network, says: 
In the current political climate, being 'vulnerable' casts you as worthy but also demeans you, portraying you as passive, helpless and in need of benevolence. This appears to contradict the promotion of aspiration, and paints a very confusing picture. To function within this framework necessitates proving your own vulnerability to secure ever smaller crumbs of welfare, simultaneously almost writing yourself off from any dream or aspiration. This artificially created juxtaposition is profoundly demoralising. 
As many people have pointed out, it is government policies that make disabled people vulnerable - vulnerable to being poor, to insecure and inappropriate housing, to mounting debt, to being imprisoned within our own homes because of lack of support. What is more, as Neil Crowther argues, the language of vulnerability actually makes disabled people less safe.  Moreover: 
It promotes the idea that society’s primary responsibility should be to act as custodians, not to respect and promote disabled people’s freedoms.
So my plea to disability activists and our political allies alike is - please never ever use the words ‘vulnerable’ or ‘most vulnerable’ when making the case for our equal access to a good quality life.  By all means, point out that current government policy and some wider social attitudes make us vulnerable to poverty, homelessness,  unemployment, abuse and discrimination.  By all means, point out that cuts to social care make us vulnerable to being consigned to residential care or imprisoned within our own homes with minimal support.  By all means, point out that welfare reform is leaving households without enough food to eat, at risk of eviction, and frightened.

But such vulnerability is created by political choices and prejudice. We should be campaigning to remove the policies and practices which create vulnerability, not using the term as a qualification for support. If disabled people are made vulnerable this is a human and civil rights issue.  It took us many years to reframe our position in society away from that of a matter of protection and exclusion.  Please don’t collude in imposing that history back onto us.

Thursday, 13 August 2015

The end game of welfare reform

Three more extracts from material I found difficult to throw out while sorting out my study (for previous examples see here, and here):

“Frankly, it beggars belief that so many more people have suddenly become invalids, especially at a time when the health of the population has improved. I make no apologies for looking at this area of expenditure.”

“The impending changes to the State ill-health benefits system will create unique sales opportunities across the entire disability market and we will be launching a concerted effort to harness the potential in these.”

“Some party, some government, will have to replace the welfare state by a less destructive alternative. The Fortune Account is the shape of its replacement.”

Now read on to find out where these quotes come from….
Over the next few months the Welfare Bill will wend its way through Parliament.  The reduction of benefit paid to people in the Employment and Support Allowance Work Related Activity Group (who have been found unfit for work but who may be able to return to employment at some point in the future) is just the latest in a long line of efforts by government to reduce the numbers on long-term out-of-work sickness payments.

In the early 1990s, pundits and politicians bemoaned the increase in the numbers of people claiming Invalidity Benefit (the forerunner of today’s Employment and Support Allowance), claiming that this had to be due to dubious claims.  Prime Minister John Major stated in 1993: “Frankly, it beggars belief that so many more people have suddenly become invalids, especially at a time when the health of the population has improved. I make no apologies for looking at this area of expenditure.” 

It was argued that the bill for Invalidity Benefit had increased because some people were placed on the benefit who were actually capable of working, and that there had been a growing ‘dependency culture’ because the level of the benefit acted as a disincentive to find work.  There was much emphasis in public debate on how many people on Invalidity Benefit were really the ‘hidden unemployed’ rather than too sick or disabled to work.

Invalidity Benefit was therefore replaced by Incapacity Benefit and an ‘All Work Test’ introduced.  In Parliamentary debates, emphasis was placed the need for more ‘objective’ assessments of fitness to work.  However, the new assessment did not in fact reduce the numbers claiming long-term sickness benefits, so the All Work Test was replaced with first, the Personal Capacity Test in 2000 and then the Work Capability Assessment in 2008 (when Incapacity Benefit was replaced by Employment and Support Allowance). 

None of these changes have led to a reduction in the numbers of people receiving long-term sickness benefits. 

Conservative, Labour and Coalition governments have consistently ignored evidence that the most important factors preventing people with long-term health problems from getting and keeping employment are: employers’ attitudes and practices; difficult and inappropriate working environments and conditions; personal and family difficulties, which encompass not only the debilitating impact of ill health but also factors which often accompany it such as debt, housing problems, caring responsibilities and so on.

For example, in 1993, the Policy Studies Institute -  commissioned by the Conservative government to carry out research on the reasons for the increase in numbers on long-term sickness benefits - concluded:
The explanation for the increasing cost of IVB lies in the economy as a whole, and in the hiring and firing practices of employers, rather than in a change in the behaviour of individual claimants or their doctors. The increase has not been caused by excessive ease of entry to the system, but by difficulty of exit. What is perceived as a problem for the government (increased costs) may actually be a problem for the claimants (inability to find appropriate work). 
 (Richard Berthoud, 1993. Invalidity benefit Where will the savings come from?, Policy Studies Institute Research Briefing, pp5-6.)

In terms of the chances of keeping your job if you become ill or disabled, again there is research which indicates that it is the ‘hiring and firing practices of employers’ rather than the ‘behaviour of individual claimants or their doctors’ which are more important. Longitudinal analysis published in 2003, this time commissioned by the Labour government, found that people who became sick or disabled while in employment were more likely to lose their jobs if they lacked employment protection, lived in an area with high unemployment, were older or had mental health problems.

However, there is a wider agenda at work in the drivers of welfare reform, namely the desire to promote the delivery of income protection provision via profit-making companies operating in free markets. Few of the narratives of opposition to the attacks on welfare reform focus on this ideological commitment to ‘the market’ but insurance companies and right-wing think tanks have been attempting to influence governments in this direction for over 20 years. 

One document which articulates this quite clearly is a report published by the Adam Smith Institute in 1995. Titled The Fortune Account, this sets out proposals to replace ‘state welfare’ with an insurance system “operated by financial institutions within the private sector”.

Wholesale privatisation of out of work sickness benefits found very little political support at the time but this did not stop insurance companies influencing changes to the welfare state which they perceived to be in their interests. One insurance company in particular had a direct input into both the 1990s Conservative reforms and those of New Labour.  Unum - a large US based insurance company - helped to develop both the Tory government’s All Work Test and its successors introduced by Labour.  As the All Work Test was rolled out, Unum was quite explicit that it hoped to gain customers as a result, with the Chairman writing: 

The impending changes to the State ill-health benefits system will create unique sales opportunities across the entire disability market and we will be launching a concerted effort to harness the potential in these.

And in 1995 the company placed an advert for its own income protection insurance:

April 13, unlucky for some. Because tomorrow the new rules on state incapacity benefit announced in the 1993 autumn budget come into effect. Which means that if you fall ill and have to rely on state incapacity benefit, you could be in serious trouble.

[These quotes come from the Paul Foot Private Eye article reproduced here]

UnumProvident, as it became following a merger, had a major influence on the Work Capability Assessment (as Jonathon Rutherford explains in his 2007 Soundings article, 'New Labour, the Market State and the End of Welfare).  The company introduced the Labour government to changes it had made to its own methods of assessment following increasing claims as a result of mental ill health and long-term conditions such as ME. Based on the bio-psychosocial model of ill health and disability, the WCA assumes that behavioural attitudes are key to ‘recovery’ and getting back to work, and that conditions and sanctions attached to receipt of benefit will bring about the necessary behavioural change. 

The motivation for ‘welfare reform’ in 1993 was to reduce public expenditure and decrease the size and role of the state.  And this has remained the desire of Labour, Coalition and Tory governments. 

In 1995 Adam Smith report which advocated Fortune Accounts pointed out that

Any new system has to be one which is within the domain of the politically feasible. It has to be one which governments would think acceptable to their electorates.

Over the last 20 years, the ‘scrounger’ rhetoric applied to people who are too ill to work, or who cannot get work because they are directly/indirectly discriminated against by employers, has been steadily increasing. After years of ramping up hostility towards people on long-term sickness benefits, the recent announcement of reducing payments to people in the Work Related Activity Group of ESA was swiftly followed by Downing Street briefing that the government was supportive of the idea of “making workers pay into flexible saving accounts to fund their own sick pay or unemployment benefits”.  It would seem that the Conservative Party believes it may now have reached a point where it can move to end the provision of income protection funded by taxation and available to all (which will undoubtedly please the insurance companies who have been major donors to Cameron since he took over as leader of the Conservatives in 2005).

The 1995 Adam Smith report stated: 
Some party, some government, will have to replace the welfare state by a less destructive alternative. The Fortune Account is the shape of its replacement.
Those who have been trying for years to influence governments to replace collective provision with private insurance may now feel they are moving into the endgame. 

Wednesday, 15 July 2015

Reclaiming Our Futures

Yesterday, 14th July 2015, I spoke at the Reclaiming Our Futures Alliance conference in Sheffield.  The number of people there, and the level of debate and contributions, were a tribute to the growing strength of the disability movement.  Here’s the text for the speech I gave at the beginning of the day (what I actually said was a bit shorter than written here).

I’m not going to spend time recapping how awful things are and the impact of recent and forthcoming policies on disabled people.  Instead I want to identify some positives, sketch out a few priorities for the disability movement, and at the same time try and identify areas where we might make progress.

So what are the good things we can identify in the political situation that faces us?

Firstly, there is growing and energetic grass roots movement of disabled people which in many ways is bigger and has more potential than the earlier years of the disability movement.  Social media is a key factor in this - a tool which we didn’t have in the 1980s and 1990s.  This makes communication faster and more far-reaching than we could have dreamt of in those earlier days.  It also means that our movement is more inclusive: people who find it difficult to attend meetings or marches, or to be involved in other forms of formal organising, have made some of the most important contributions to recent activism.  The Spartacus Network's reports and Catherine Hale’s research on ‘back to work’ programmes and people in the Work Related Activity Group are good examples. And it means that experiences which are by their nature socially isolating are making their voices heard in the public sphere.

Secondly, the impact of government policy on disabled people is much more of a mainstream political issue than it ever was.  This is partly because of the disproportionate effect of austerity policies on disabled people but it is also because disability activists have been so prominent in the public debate. The fact that DPAC’s banner was at the front of the Anti-austerity March on June 20th illustrates that disabled people are at the head of the fight against the current government, rather than being on the periphery which is where we have usually been.

Thirdly, social care policy is moving up the political agenda - primarily because of the mounting crisis caused by local government cuts already made and the far worse ones which are about to come.  Local authorities (even the Tory ones) are potentially on a collision course with central government, particularly because there are increasing signs of a collapse in the market of private care providers (who can no longer make the kind of profits their shareholders require because of the cuts in local authority social care budgets).  Disabled people have won important fights before by making alliances with local government.  There is potential for doing this again.

And fourthly, the real world is at odds with the political rhetoric - one key example being the failure to reduce the numbers of people receiving out of work disability and sickness benefits. Over the last 30 years or so governments have brought in new assessment systems, accompanied by a range of threats and promises about stopping people ‘languishing on benefits’ but each time they have failed to significantly reduce the numbers - although in the process of trying they have ruined many people’s lives. All the evidence is that it is the behaviour of employers and what is happening in the wider economy which increases employment rates amongst disabled people - only when employers adapt working conditions, and support people to keep their jobs when they have periods of illness, will we increase employment opportunities. The gap between rhetoric and reality is also created, firstly by an ageing population - people in their 50s are more likely to be unable to work because of ill health - and secondly because the way our economy is run is increasingly bad for people’s health. 

In terms of our priorities and where we might make progress, I think the most important thing is first to be clear on what our principles are and to hold fast to these. 

In particular, we must not get drawn into using language which is diametrically opposed to disability rights and independent living. For example, we have to resist the term ‘vulnerable’.  It’s too easy to use this word in making the case against the devastating impact of cuts in benefits and services.  But this kind of language undermines us. It’s part of an agenda which is about separating out the ‘vulnerable’ from the ‘shirkers’, the deserving from the undeserving.  Let’s be clear, this rhetoric is a direct consequence of the government’s aim (which was also the aim of the last Labour government) of reducing the amount of money spent on both out of work disability benefits and additional costs benefits like DLA. 

It’s a term which is part and parcel of the current government’s aim of a ‘small state’ because it implies that there is this small group of people who are so ill or disabled that they require ‘special’ treatment but everyone else must sink or swim according to their own efforts. 

Our resistance to current policies should instead be based on arguments about social justice, about equality, about disabled people aspiring to the same human and civil rights as anyone else.  Resistance should not be based on separating out people with the most significant impairments or long-term health conditions and making them into a ‘special case’, to be ‘protected’ by a very basic safety net. 

Our resistance should be based on recognition that currently we have the kind of economy which creates low paid, insecure jobs that are bad for people’s health. An economy which creates working conditions that demand a level of fitness and resilience that many, many people do not have.  These are mainstream issues in that they are issues which affect a much much wider group of people than those who are identified as ‘disabled’. 

Our priority should be to make alliances with those more generally affected by our dysfunctional, unhealthy economy.  We should therefore be broadening out disability as an issue rather than making a special case of our so-called ‘vulnerability’.

Really good work has been done by disability activists and others to expose not only the flaws in the Work Capability Assessment but also the inability of private sector organisations to deliver what they promise when they tender for outsourced services.  And no doubt there will continue to be such opportunities.  But it’s really important that this campaigning puts disability equality principles at its heart.  This means showing how the behaviour of employers, and the kinds of low paid, insecure jobs on which our economy relies, create impossible barriers to employment for many people.  It means focussing on how the WCA is not even fit for its intended purpose, that sanctions are not only unfair but ineffective, and that so-called employment support programmes are not actually supporting people into employment.  

And it means focusing on the failure of current government policy to recognise illness as a barrier to work.  This last issue in particular has great potential in building broad alliances and exposing not just the callousness of government policy but also its impracticality.  This is a key policy area where we can also demonstrate that policies that work in the real world have to be developed in partnership with people whose lives are affected by them.

The Chancellor’s decision to remove those placed in the Work Related Activity Group from long-term benefit rates and only pay the same rate as Job Seekers Allowances opens up a real campaigning opportunity.  This change will not come in until April 2017, and only for new claimants.  This gives us time to expose the huge gap between rhetoric and reality - people in the WRA group are disabled, are ill, and are assessed as not currently capable of work.  There is considerable lack of understanding about this. Moreover, the Work Programme has proved unable to help more than a small percentage into work - which is not surprising given that it has been developed with no involvement from those with real expertise in what good employment support looks like - disabled people themselves. 

This relates to an opportunity which is not just of concern to disabled people but to the majority of the population: how to design and deliver services that are responsive to the wishes of individuals, that are accountable to their users (rather than to shareholders - as in the private sector - or to a professional group whose culture is one of ‘we know what’s best for you’ - as is far too often the case in the public and voluntary sector).  

The post-second world war welfare state may have been radical and empowering for its time but its bureaucratic and professionalised way of delivering services and support too often actually disempowered people.  Which is why we had to develop direct payments as a way of delivering self-determination for people who need support to go about their daily lives.  

Where policy and its implementation is not driven by those who use services you get situations where, for example, employment support services have very poor rates of actually helping people into sustained employment; where people with autism and/or learning disabilities are institutionalised for years in expensive services many miles from their family and friends; where disabled and older people are ‘warehoused’ at home or in residential settings.

As we know, social care is facing a crisis.  Crucially, this is affecting a much larger group of people than has been affected by cuts to disability benefits. We need to make alliances with older people and also family carers. There is scope in the context of the campaigning which needs to happen - and will happen - to push our concept of independent living. The original vision which drove the campaign for direct payments may have been subverted into a bureaucratic system of rationing ever-scarcer resources but that doesn’t mean we should abandon the aim of self-determination. It just means we have to be clearer than ever in our demand for control over the support we need to go about our daily lives.

The magnificent fight waged against the closure of the Independent Living Fund has brought into the public spotlight a question that needs to be continually asked of the government:  “Are you telling us that our society cannot afford to enable disabled people to have the kind of life, the kinds of opportunities, that non-disabled people take for granted?”.  One of our priorities should be to keep asking this question.  But we should also broaden it out because it is a question which applies to a much larger group than those who are commonly labelled as ‘disabled’, namely older people, including people with dementias.  The cut-backs in local authority budgets mean that increasing numbers of older people, who need support in their daily lives, are imprisoned within their own homes, receiving diminishing levels and quality of support, relying more and more on family, friends and neighbours for the most basic care. 

We need to build alliances with organisations representing older people and family carers.  And at the same time, seize the opportunity to influence their campaigns with our vision of independent living because this vision applies just as much to older people who need support in their daily lives as they do to the younger disabled people who developed them.  And as my generation, which came of age in the 1960s, enters old age I cannot imagine us being willing to put up with the ageism which is at the heart of many of the services on which we will come to rely.

The final point I want to make is that there is scope for both pissing inside the tent as well as outside of it.  Successful movements do both.  Trying to work with individuals and organisations who do not necessarily share our worldview is frustrating.  But it has to be done.  We made significant achievements in the past at both national and local government level, sometimes alongside voluntary sector organisations that we had profound disagreements with (even if we had to hold our noses).  We need to recognise that there are individuals working within these organisations (and at national and local government level) who we can truly count as our allies. We need to be able to support them: this means recognising the value of what might be called the “pragmatism of small step progress” while not losing touch with our fundamental critique.  

In the current political situation, where so much is against us, we do yet have a history of 30 years of disabled people’s struggle to build on.  And we have more and more people identifying with that struggle, and more effective ways of organising. The greatest opportunities are created by the ways in which it is now clear that our fight for social justice and a decent quality of life is also at the heart of a broader fight.  Remember less than 1 in 4 people voted for the manifesto that this government is currently implementing - and some of the things it is doing weren’t even in their manifesto anyway.  That is a significant democratic deficit. It opens up considerable opportunities for exposing the gap between rhetoric and reality, for voicing our vision of how to deliver human and civil rights for disabled people, and for building alliances with the increasing numbers of people affected by this government’s disastrous policies.

Friday, 19 June 2015

"This is starting to feel like a Monty Python sketch"

So here’s the second of my blogposts based on ‘stuff’ that I’ve found difficult to throw away while clearing out my study.  (The first one was about language and human rights).   What is also relevant to this blogpost is the lobby of Parliament planned for Wednesday 24th June 11a.m. in a last ditch attempt to persuade the government to change its mind about the closure of the Independent Living Fund (see for more details of this and the petition).
In 1991, I received funding from the Joseph Rowntree Foundation to carry out research which aimed to explore what independent living meant to disabled people.  The research concerned people with physical impairments under retirement age, who were either living in residential care, receiving social services in their own home, or employing their own support workers (1).

The general context was the NHS and Community Care Act 1990, which had the potential to enable more access to independent living but which also had its limitations.  The other important context was that the Independent Living Fund had been set up in 1988 and was already making a difference to the lives of a small but growing number of people. In addition a few pioneers of independent living received cash payments from their local authority to enable them to employ their own support workers (though technically local authorities were prohibited from doing this).

When clearing out my study last month I found the notebook I kept during the process of doing the research.  These included notes of my experiences of visiting residential homes to carry out interviews which I had set up by letter and telephone with people who lived in these settings.  The interaction with staff when I arrived at the homes was often rather disconcerting, as in this example: 

Two people are in the office; they both look at me as I come in but carry on talking to each other.  Not in a way of finishing off a conversation.  It becomes almost embarrassing the way they seem to be deliberately keeping me waiting.  Eventually, I butt in and ask if they could let KT know I’m here.  “Are you from an organisation or is it personal?” I explain that he’s expecting me.  “Yes you can see KT.  That will be alright”. 

I assume these two women are care workers as both are wearing uniforms though neither of them have name badges or, at any point, say who they are. 

After chatting a bit more, one of them goes off and then comes back to say “He’s on the toilet”.  Ten minutes later “He’s still on the toilet. He takes a long time”.  More time elapses.  “He says he doesn’t know who you are”.  I explain I’ve received a letter from him and have also talked to him on the phone to set up the meeting.  I then ask for ND (another person who has agreed to take part in the research).  She goes off and then comes back to tell me that NF is out.  I say, No it was ND I’ve arranged to see.

This is starting to feel like a Monty Python sketch, particularly as she’s walking around with a parrot on her shoulder - but it’s not dead. [I have no memory of this but it must have been true, I was writing these notes sitting in my car afterwards.]

Another care worker comes up to me and says “You’ve waited long enough.  I’ll go and find ND for you”.  I thank her and ask whether she could also check whether KT is expecting me. 

And so, finally, I get to see both of them.

During the 20 years or so that I carried out research I went into a lot of institutional settings to interview people who lived in them.  Sometimes I had good experiences but mostly they were of a very disconcerting nature.  Partly staff were thrown by the fact that, although I was presenting as a ‘professional’, I also looked like many of the people living there in that I’m a wheelchair user.  So I think they found it rather disconcerting as well.  I was ‘out of place’, not in the role that they were used to for people ‘like me’. 

I’ve kept the interview transcripts of the 50 people I interviewed in 1991, including those of the two men in this particular residential home.  One was in his early 20s and had moved there straight from a residential school:

I ask when I want help here, there’s a buzzer.  Half an hour later they come.  It’s very frustrating.  Sometimes they’re quicker, sometimes not.  I get nagged here - about nothing.  I don’t know what they want me to do.  It’s because I’m young.  They treat me like a child - some don’t but some do….I want to live in my own flat because here the staff tell you what to do.  They’re not supposed to but they do….. I want to have control over my life.

And the other man, who had been there for 18 years said: 

It’s got worse over the years, it’s more now what the staff want. I don’t have control over my life…..  I’ve been trying to leave for 8 years…at first I had a social worker who was no good but now I’ve got a better one and I’m going to get help, she’s sorting that out. 

Both these men were looking to the Independent Living Fund to enable them to leave residential care, in the hope that this would give them more choice and control over their daily lives - in the hope, indeed, that it would give them a future.  The momentary feeling of powerlessness I experienced in my interaction with the care staff that day was nothing compared to the lack of autonomy which pervaded their daily lives.

The Independent Living Fund had been set up in 1988 as a result of changes to the social security system brought in by the 1986 Social Security Act. This brought in a new Income Support system which abolished the additional payments for ‘domestic support’ that had been part of the Supplementary Benefit system. At the same time there was some recognition that the benefit system was not flexible enough to deal with the particular costs that some disabled people had, partly because costs varied according to individual requirements and partly because many people not in receipt of means tested benefits had just as much difficulty meeting these costs. 

The ILF was therefore set up as a charitable trust funded from the social security budget.  We have lost sight of how revolutionary the original ILF was.  It was open to people of all ages (older people made up 37% of recipients by the time the original Fund was closed down in 1993).  It was also open to people with a wide range of support needs, including those who needed just a small amount of help as well as those who had high support needs. Although there was a means test applicants did not have to be in receipt of benefits in order to qualify for a grant.

It also illustrated that it was possible to operate a system where national eligibility criteria triggered a right to a cash payment but the level of payment varied according to individual circumstances. Most importantly, it “demonstrated that large numbers of even the most severely disabled people want to manage their own personal assistance and are capable of doing so”. (2)

The radical nature of the original ILF was made possible because the government mistakenly thought that only a very small number of people would apply and the original budget was set at only £5million.  But by 1992 its annual budget had reached £97million and over 18,000 people were receiving ILF grants. 

For a brief few years therefore, our social security system enabled people, of all ages and any impairment who have additional support needs, to be funded to meet those needs in ways which gave them choice and control over their lives.  The explosion of demand illustrated what disabled people and their families aspired to and how lives could be transformed. 

However, when the original ILF was replaced by the 1993 Fund, eligibility was restricted to those aged 16-65, who received the higher rate of the care component of Disability Living Allowance, who were on Income Support, and who already received at least £200 worth of local authority-funded services per week. This meant access was denied to older people and to, for example people with mild learning difficulties who did not meet local authority eligibility criteria. It also created wide variations according to local authority practice in referring people to the ILF93 (ironically one of the reasons the current and last government gave for abolishing the ILF). In addition, an upper limit of £300 ILF grant was imposed.

In spite of these limitations, the ILF93 has enabled thousands of people to do the kinds of things, lead the kind of lives, most non-disabled people take for granted.

I stayed in touch with some of the people I interviewed in 1991/2, including the younger of the two men mentioned above.  When I lost touch with him, in 2000, he was still in the same residential home but about to be moved because the charity running the home was ‘decanting’ (as they called it) ‘residents’ (as they called them) into ‘independent living flats’ (as they called them) on another site so that they could sell for development the rather desirable piece of land on which the home stood. 

The radical nature of the original Independent Living Fund happened by accident, not by design.  Those who do design policies about how to support disabled people often have the best of intentions and are sometimes profoundly influenced by disabled people’s own ideas and aspirations.  This was the case with the history of direct payments, which were developed by a small number of individuals who demonstrated that giving them the money to enable them to arrange their own support not only enabled them to lead ‘ordinary lives’ but was also cost effective.  

However, once direct payments were adopted as national and local policy (from 1996 onwards), its implementation was put in the hands of people who are working within a culture that assumes the primacy of ‘professional judgement’, that distrusts people to determine how best to meet their own needs, and which - most importantly - is dominated by the need to ration ever scarcer resources. These factors have held back the potential of direct payments ever since their introduction but they have become even more dominant in recent years. 

The result is too often a denial of autonomy, of self-determination - perhaps the most fundamental of human rights. 

Twenty-five years ago, very few of the people I visited in residential homes, or those receiving home care social services, felt they had choice and control in their lives.  The powerlessness and isolation they experienced is what current ILF recipients fear when the ILF is closed down at the end of this month (June 2015).

People like Penny Pepper have described the difference that the ILF has made to their lives  

ILF, through the care workers it paid for to match my needs and lifestyle, was a revelation. I had the same three people helping me wash and dress; the choice to change my mind in what I wore, what I ate, in when I got up – and the freedom to go to the toilet when I needed. It’s impossible to overstate the effect of this liberation.

There is a woman in my village who is struggling to remain living in her own home.  She gets what is considered an ‘intensive care package’ from the local authority - which means she gets a half hour visit at 10a.m., an hour at 12.30 and another half hour at 7.30.  As one of the neighbours supporting her says, ‘she is going stir crazy stuck inside. Having spent her whole life working the fields she is finding herself quite suffocated at the moment”.

As I said in my previous blogpost, human rights, and their abuse, begin in the detail individuals’ lives.  They begin in the way we relate to each other, the language we use. But they are also manifest in the way our society responds to the needs of people who require support to go about their daily lives, who need assistance if they are to exercise the basic choices that most people take for granted.  The closure of the ILF and the refusal to adequately fund social care represent our society’s acceptance that many disabled and older people face isolation and a lack of choice and control over the basic activities of daily life. 

(1) Jenny Morris 1993. Community Care or Independent Living? Joseph Rowntree Foundation ;
Jenny Morris, 1993.  Independent Lives? Community care or independent living, Macmillan.
(2) Ann Kestenbaum 1996. Independent Living: a Review, Joseph Rowntree Foundation.