I spent the back half of last week in Lyon for a forum on the ‘disability sector’. It was an international conference. I was there to explain alien aspects of the British system, such as care packages, personalisation and welfare reform; others were there from Norway, Germany and Italy. I’ve had to learn some new vocabulary – for example, that people with disabilities are no longer personnes handicapées but personnes en situation de handicap, and learning disability is sometimes (but not always) rendered by handicap intellectuel, sometimes by les personnes ayant des difficultés d’apprentissage. Beyond that, there’s always the problem that professionals in France routinely talk in acronyms, such as the ESMS (établissements et services médico-sociaux) or the CPOM (contrat pluriannuel d’objectifs et de moyens) – I’ve only deciphered that one after coming home and looking it up, and I still don’t know what it really means. There were interpreters at hand, so I chickened out and spoke in English.
It’s more of a culture shock to understand some of the differences in provision. None of the agencies represented, in a conference with more than 300 managers attending, dealt with older people. France still makes heavy use of residential care for younger disabled people. There was also a moment of incomprehension when the German speaker asked about the representation of people with disabilities in monitoring groups and got an answer about institutional accountability instead. However, there’s a level of funding that many people in the UK would find enviable.
I listened to Damian Green’s first speech to the Conservative Party as the Work and Pensions Secretary in the hope of getting some clue about the direction of policy. Green stated that benefits were there to provide ‘work for those who can, help for those who could, care for those who can’t, care for those who can’t.’ That statement would have fitted comfortably with anything said by the Labour government 1997-2010, but it has always been misconceived; benefits are about far more. Likewise the claim that “doing a job is for most people the best way out of poverty”. Most poor people of working age are working.
The point that caught my attention was a little factoid: the claim that there are seven million people of working age with disabilities. As Secretary of State, he ought to know what the latest figures are, and I immediately checked to see if there was a new DWP survey. If there is, it’s not in the public domain yet. The figure comes from a statement made by the Disability Rights Commission in 2004, which used the Labour Force Survey to come to a figure of 6.8 million people. It’s very different from the main government figures, published in 2014 and based in the Family Resources Survey, which put the figure for 2011/12 at 5.7 million. Both figures mean that people of working age now substantially outnumber older people with disabilities – a reverse of the evidence for decades before.
Both these figures are however unreliable, for several reasons.
- The first and most obvious problem lies in the difference between them. They were produced for different purposes, from different surveys – the older figures were needed to identify disability discrimination, and some conditions might be subject to discrimination without necessarily implying any major limitation of capacity. The lower government figures are intended to refer to people who have significant difficulties with day to day activities, and they note that “these estimates do not reflect the total number of people covered by the DDA.” The discrepancy in numbers is very large, however, and not explicitly accounted for.
- It was observed in the mid-1990s that the figures are influenced by social and economic conditions around people – the counts have gone up during recessions, and do not seem to come down afterwards. The numbers of people who do not recognise danger have apparently doubled – might that that be because the public perception and social definition of danger has changed?
- Certain other categories have changed in ways that cannot be accounted for by changes in the status of the population. Incontinence, and communication difficulties appear to have increased by 50% between 2002 and 2012.
- It is not clear whether the answers to surveys can be taken at face value. Other work has shown that fully three-quarters of people with impairments either say they are not disabled, or that they are disabled sometimes. Both sets of figures are based in survey evidence asking people about their circumstances, and most people with disabilities cannot answer those questions with confidence.
I don’t know what the true figures are. I am concerned however that in policy terms, adopting an ever-broadening definition of disability has lost sight of the crucial role that benefits play in providing for sickness and incapacity, which are are not the same thing as disability and need to be identified and responded to in their own right.
There’s an intriguing disagreement reported in the Herald between disability organisations and CoSLA, which represents local authorities. CoSLA has been arguing for building up the role of local authorities in benefits administration. At present the Scottish Local Authorities administer Housing Benefit, Council Tax Reduction and the Scottish Welfare Fund; they are also effectively responsible for support in social care, including the fashionable (and misguided) trend to individual budgets. They stand to lose responsibility for a large slice of the work relating to Housing Benefit (relating to working-age benefits). That has raised questions about the viability of the operation and the prospects for people working in that field.
Others have expressed concerns about the possibility that disability benefits will be transferred to local authorities. Tressa Burke, of Glasgow Disability Alliance, is concerned about cuts – a reasonable fear, because the experience of local authority administration to date has been that social care is expected to work within fixed budgets, and benefits don’t work that way. Sally Witcher, a former director of CPAG who is now CEO for Inclusion Scotland, comments that there will be a ‘postcode lottery’ and points to the problem of people transferring across local authority boundaries. (As a carer myself, I’m more worried about the discontinuity of care: quite apart from the effect on personal relationships, putting together a fresh care package in Scotland can take months or even years.)
The main concern raised by CoSLA’s statements to date – such as the delivery plan for people with disabilities – is that they’re based on a narrow concept of disability, dominated by the model of ‘independent living’. I’ve sat before now through a long presentation arguing for disability benefits to be unified with social care, a prospect which appals. It implies the replacement of entitlements with assessment and bargaining within the constraints of fixed budgets; a system where assessments of need are geared to what’s available; and a subordination of all the other objectives of disability benefits – social protection, income smoothing, compensation, rehabilitation, empowerment and so on – to the priorities and demands of the social care budget.
There may be room for compromise. A CoSLA spokesman is reported as saying that “councils are not suggesting they should make decisions about who gets benefits or how much they get.” If that’s right, this could be taking as proposal for something very different, focusing on effective benefits administration, and there’s a good case to think about administration at local levels. One of the first priorities has to be to ensure that benefits are not swallowed up by an misplaced identification with social care.
I was interviewed a couple of weeks ago by Ian Hamilton, for a programme covering issues on disability in the referendum, or the lack of them. It was broadcast as “The Investigation: One million vote”. As the programme went out on Radio Scotland yesterday morning at 5 am, I doubt you’ll have heard it, but it’s on iplayer for the week. Ian was asking whether the referendum would be swayed by the concerns of people with disabilities. I expressed doubts about that: as fully three-quarters of people with disabilities don’t identify themselves as being disabled, it’s hard to mobilise people around the issues. There is no ‘disability vote’. But disability should be seen as a central issue in social protection; many of us will be touched by disability, whether we become disabled ourselves or whether it will be someone we care for.
The morning newspapers offer two rather different perspectives on benefits. The headline on the front page of the Times tells me: “Benefits fuel workshy culture, says pensions czar“. Lord Hutton, a minister in the last Labour administration, issues a “stark warning”: “Successive governments ‘lost the plot’ over a ballooning benefits bill. We’re spending an absolute fortune every year on working age benefits …” Out of work benefits have been fairly static in real terms, and have actually fallen as a proportion of GDP. With apologies for repeating myself, in 1992/93 DWP benefits for people of working-age took up 4.3% of national income. In 2012/13 the equivalent figure was 3.5%, and the projections are all downward. The relative cost of ‘out of work’ benefits fell from 3.9% to 2.5%. (See the third table in this spreadsheet) What has increased in the interval are the Tax Credits, the complex system of payments covering families in work on low wages; they account for the extra costs shown in the first table in the spreadsheet.
Meanwhile, on the same day, there are complaints that people with the most common degenerative disorders are routinely being declared ‘fit for work’. The conditions specifically identified are cystic fibrosis, multiple sclerosis, Parkinson’s disease and rheumatoid arthritis. Caroline Hacker, of Parkinson’s UK, commented:
To set up a system which tells people who’ve had to give up work because of a debilitating progressive condition that they’ll recover is farcical and simply defies belief. These incomprehensible decisions go to show that many assessors, and those who rubber-stamp the decisions in government, don’t apply the most basic understanding of the medical conditions they are dealing with.
These are, of course, the self-same claimants of ‘out of work’ benefits, who are being described as ‘workshy’.
This is a little snippet from the ONS Opinions and Lifestyle survey, pulled out for ad hoc analysis by the DWP. From Tables 10 and 11 in the analysis, 62% of people identified as disabled said that they did not think of themselves as being disabled. Among the people with disabilities who said they were not disabled, more than half (55%) said it was because they could carry out their normal day-to-day activities, and 27% described themselves as fit and able to live a full life. Others put down their limitations to ill health or old age. Among those identified as ‘disabled’, 26% said they did think of themselves as being disabled, and 11% said ‘sometimes’.
One of the central problems with our benefit system is that it relies on claimants being able to recognise where the boundaries fall. People don’t necessarily identify their needs in the same way, and they can’t place themselves in the neat little boxes we ask them to plump for. Needs change, from month to month and sometimes from day to day. It’s not just a problem with disability or health. Ask people living on the edge about their work status, their income and the state of their relationships and they often can’t answer directly. Unfortunately, that is all too likely to be taken as an indication of evasion, obstruction or fraud.
All the trend at present is to ‘personalisation’ – making the system more individual and more responsive. That is absolutely the wrong way to go. It is intrusive and arrogant – no administration can respond consistently and fairly on this basis. We need to allow more latitude for changes in circumstance , covering longer time periods and broader categories. The benefits system has to look at needs in ways that are less detailed, less personal, and less presumptuous.
Another announcement about benefits policy is made by the Daily Telegraph, the third hostile proposal I’ve had occasion to post about in the last three days. This one comes from their Senior Political Correspondent, writing from Abu Dhabi (I’m not making this up). It is a proposal that drug addicts or alcoholics should have benefits suspended if they refuse treatment. “This would see alcoholics denied benefits unless they attended regular meetings at a support group such as Alcoholics Anonymous. Similarly, drug addicts would be denied payment if they refused to be treated.” Apparently, what is keeping addicts from giving up the drugs is that they have too much money.
The article continues: “The proposal, which is likely to be fought by campaigners, could be extended to people who claim benefits because they cannot work due to obesity or back pain.” What objections, one wonders, could campaigners have?
This is beginning to feel like a surreal game of Space Invaders; the aim is to stop the bombs landing, while correspondents from remote places drop their loads, faster and faster, until something finally gets through. If anyone is out there: the reason why people with disabilities need support from benefits is that it is difficult to manage with a serious illness and no income. A good reason why you should support them is that, in time to come, either you, or a member of your family, or someone you care about, will be ill or disabled, too. That might just be because of obesity, or mental illness, or back pain, or any of the hundreds of disorders that people suffer. There are good reasons, then, to defend the system; but in Space Invaders, the defenders always lose.
The stigmatisation of claimants with disabilities is not a new phenomenon – people with disabilities have always prompted a combination of apprehension, mistrust and vilification. Precisely because it is deep-rooted in society, it can be dangerous. Governments which are critical of vulnerable groups are liable to legitimise the process of social rejection and exclusion; in the worst cases, they can exacerbate the process. That is behind the concern expressed by certain charities in a recent Guardian report.
Social security benefits for people with disabilities are not provided for a single purpose. They are provided for many reasons – among them, need, low income, social protection, compensation, earnings replacement, social inclusion and rehabilitation. Part of the problem with “othering” disability – and indeed, part of the problem with treating disability as an issue in identity politics – is that so many different issues are folded up together. Anyone can become disabled; it can happen suddenly as well as gradually. A benefits system needs to protect people from the things that might happen to them, and a system which excludes disability fails in several of its primary purposes.