Personal Independence Payments: 'Statistical norms' and the fight to come.

In her recent Guardian article, detailing the high levels of complaints about, and problems with, the assessment system for Personal Independence Payments, Frances Ryan says, "None of this exists in a vacuum".  She's referring to the other attacks on disabled people's benefits and services which  have been waged by governments over the last seven years, but there's also a wider, very worrying context that we need to be aware of. 

There are two factors which are creating a great incentive for the government to continue its efforts to reduce expenditure on Personal Independence Payments.  The first is that, although expenditure on incapacity benefits (Employment and Support Allowance) is now a smaller share of national income since 1990 (partly because the value of such benefits has fallen), expenditure on Personal Independence Payments has grown as a share of national income and is projected to keep growing.

The second is that, as the Institute for Fiscal Studies reports, the government's aim of reducing public expenditure - the drastic cuts to public services and to working age benefits which have happened since 2010 - have only brought public expenditure back down to what it was before the financial crash of 2007/8:  “Seven years of cuts have served merely to return public spending to its pre-crisis level as a share of national income”. This is bad news for a government ideologically committed to reducing public expenditure and, combined, with the first point, should alert us to the possibility of yet another assault on disability benefits. 

In these days when disabled people’s civil and human rights are under such attack in the UK that the United Nations has said that a ‘human catastrophe’ is unfolding in our country, it is crucial to remember that one aspect of our social security system is truly progressive - or at least it was in its origins.  The currently misnamed Personal Independence Payment was originally called a Disability Living Allowance, and when it was introduced in 1992 it was transformative in that it recognised that people with impairments or long term health conditions have additional costs in terms of their mobility and daily living requirements.  DLA provided a contribution towards these costs and what’s more it was not means-tested.  It was, like child benefit, a recognition that society should take collective responsibility for the costs that some of its members incurred because this would benefit our society as a whole.  (The origins of such a progressive approach in fact go back to 1972 when Mobility Allowance was first introduced.  This had the same principles but only covered mobility impairments.) 

Unfortunately following the 2008 financial crisis, DLA was a key target for the ‘austerity’ measures pursued by Tory-led Coalition government. The abolition of DLA and its replacement by PIP was clearly motivated by the intention of reducing expenditure - the then Minister for Disabled People told Parliament that she expected that almost 60% of people who were reassessed would either get a reduced benefit or no benefit at all.The aim was to significantly reduce projected expenditure (the amount that would have been spent on DLA without its replacement by PIP) and the government assumed that by May 2018, 607,000 fewer people would be eligible for PIP in comparison with the number who would have been eligible for DLA (see Tables 7 and 8). 

Many people may have forgotten that initially the government proposed to remove the mobility component of DLA/PIP from people in residential care (the care component is already effectively removed for many by being included in the means-test).  They climbed down from that proposal but, since the full implementation of PIP, when it became clear that it would be difficult to achieve the intended reductions, the government have continued to try and reduce eligibility.  First, they tried - unsuccessfully - to reduce eligibility for people who use ‘aids and adaptations’ and then, following a judge’s ruling which recognised eligibility for the enhanced mobility component of PIP for people with mental ill health, the government introduced a retrospective regulation which removed this eligibility. 

In 2016, the Office for Budget Responsibility sounded a warning that the government’s intended reductions were not materialising. The original forecasted reduction in eligibility was based on DWP’s analysis of 900 recipients of DLA who were reassessed for PIP.  However, the evidence of actual reassessments was that more people are successfully claiming than the sample suggested and, moreover, more are being awarded increased payments.  This isn’t surprising - as anyone might have told the DWP if you reassess people who were on so-called ‘lifetime awards’, most will not only continue to qualify but many who were on lower rates of DLA will now qualify for higher rates of PIP because their needs will have increased as they grow older. 

Expenditure on PIP/DLA is also increasing because an ageing population means there is a built-in increase in the numbers receiving the benefit (which continues to be paid, though cannot be claimed, after the age of 65) and because increasing numbers of children with significant impairments are surviving into adulthood.

The OBR concluded that the government was only likely to save 5% of projected expenditure instead of the 20% it aimed to achieve.  This follows a familiar pattern in that the Coalition government and this current Conservative government have consistently underestimated the numbers of people eligible for DLA/PIP and therefore the amount spent on this disability benefit.  The OBR warned the government that “The history of optimism bias in estimates of the impact of welfare reform is a real cause for concern”. Worryingly for the government this warning was sounded even though, at the time, the OBR assumed that a further cut in eligibility - which would have reduced the numbers qualifying by a further 290,000 - would take place.  In fact the government was forced to drop this proposed rule change thus reducing the intended savings on PIP expenditure even further. 

In the light of all this, and in the light of the recent publicity given to the numbers of complaints and appeals about PIP assessment, the question needs to be asked whether, having failed to cut back on projected expenditure in the way intended, the government has introduced ‘targets’ or ‘norms’ for assessors which is resulting in some unjust decisions about eligibility.  Appeals of decisions are increasing as are success rates. Some people with terminal cancer are being wrongly refused PIP, and there is increasing evidence of ‘discrepancies’ in assessors’ reports.

These allegations sound remarkably similar to those previously made about Work Capability Assessments. Assessments for Employment and Support Allowance did not initially deliver the intended reductions in people qualifying for out of work disability benefits and this was followed by increasing accounts of people being assessed as ‘fit for work’ who patently were not. Accusations were made that the company who at that time was carrying out Work Capability Assessments had been given ‘targets’ by the DWP.  These accusations were strongly denied by the government but Kaliya Franklin showed, if assessments are carried out in the context of ‘statistical norms’ about expected outcomes, these can become part of a management tool for ensuring quality and consistency of assessment practice.  And if ‘statistical norms’ are determined by government priorities to reduce the number of people assessed as eligible then, as Kaliya Franklin argued, this may well lead to the increasing levels of complaints and successful appeals. 

A recent account by an ex-PIP assessor on Radio 4’s You and Yours programme seems to indicate that there are indeed practices being applied which exert pressure on assessors to reduce the numbers eligible. 

It is to be hoped that the Work and Pensions Select Committee, currently carrying out an inquiry into both PIP and WCA, address the question of whether government priorities to reduce expenditure are directly impacting on assessment outcomes. But in the meantime, we need to be aware that attempts to decrease expenditure on PIP are likely to continue, particularly because, as mentioned above, expenditure on this benefit is increasing as a share of national income.  

In the years to come the government may well try to make more fundamental changes to PIP - such as imposing a means-test and/or linking it to unemployment. Interestingly, one of the questions that PIP assessors ask is: “when did you last work” despite PIP being an additional costs benefit and nothing to do with employment status.  Is being in work taken to be evidence of being able to function without restrictions and therefore not eligible for PIP or only eligible for a reduced award?  This might fit in with what David Freud (at that point ‘welfare reform’ Minister) said during one of the parliamentary debates when PIP was being introduced: ”Sickness and disability are best overcome by an appropriate combination of healthcare, rehabilitation, personal effort and social/work adjustments” - does this mean that if you make enough ‘personal effort’ and ‘work adjustments’ you will no longer experience ‘sickness and disability’? When the government tried unsuccessfully in 2016 to restrict eligibility, much of the public debate was dominated by the misconception that, to qualify for PIP, you had to be judged incapable of working.  This is a dangerous message to give in the current climate - and unfortunately continues to occur in current debates on PIP (as illustrated most recently by the presenter’s questions on You and Yours).

Reforms to disability benefits have been and are still being fuelled by a government priority of reducing public expenditure.  John Pring, from the Disability News Service, states that 2016/17 has seen increasing complaints, particularly of dishonest assessors’ reports. Stephen Kinnock MP is only one of several MPs who are seeing increasing numbers of disabled people in their constituency surgeries, recounting experiences of “how claimants are treated, how they are humiliated, belittled and denied basic human dignity”; and  Debbie Abrahams, Labour’s Shadow Work and Pensions Secretary told the Disability News Service that “Labour is committed to scrapping these harmful assessments and replacing them with a holistic, person-centred approach, under our plans to ensure that, like the NHS, the social security system is there for us all in our time of need.”

In the meantime, there needs to be an investigation as to whether government policy to reduce the numbers of people eligible for PIP is resulting in ‘statistical norms’ being applied leading to disabled people being denied an additional costs payment to which they are entitled.  And we all need to beware that - if the Institute for Fiscal Studies and the Office for Budget Responsibility are right - then we may well see yet another onslaught by the current government on the living standards of disabled people.  

Accepting injustice: the government's approach to Access to Work

Access to Work is a government programme which funds the extra costs that Deaf and disabled people sometimes have if they are to have the same opportunities to work as anyone else.  For example, it can pay for an alteration to a desk, for text to speech software, for a British Sign Language Interpreter, for supporting mental health needs.

It is the most successful government policy aimed at reducing the disability employment gap, which currently stands at 32%.  Additional funding has been allocated to the programme and it has recently focussed more on helping with more people with “hidden impairments like mental health conditions and learning disabilities”. In 2015, the government announced  “a real terms increase in spending on Access to Work… to help a further 25,000 disabled people each year”.  If the government is to achieve its goal of halving the disability employment gap, then Access to Work has a key role to play.

This sounds like a good news story - and we could do with a few of those these days.

But it isn’t. And the reason it isn't is the same reason that so much is wrong with public policy these days.  Decisions are being made about the Access to Work programme which are not informed by the day to day reality of being a disabled person who needs assistance, equipment or adjustments to enable them to get a job, and to stay in, and progress in paid employment.  And, far from more people being helped by Access to Work, the numbers being helped started to fall in 2010/11 and, despite a recent increase, still haven’t reached the total number who were being helped in 2009/10. (NB. This is a link to the recently revised method of recording data on Access to Work. The statistics given in other documents linked to in this blogpost should not therefore be relied upon as they over-estimated the numbers being helped.)

When the Coalition government came into office in 2010, it commissioned a review of employment support, which found that Access to Work was by far the most successful programme and was valued by both employers and disabled people.  Although the government accepted the general recommendation that Access to Work should be expanded, and did make some additional funding available, it also attempted to increase the numbers helped by spreading the funding more thinly.  It was only after Deaf and disabled people gave evidence to the Work and Pensions Committee that the government was forced to realise that their new rules were likely to lead to large numbers losing their jobs.  Some welcome changes were made to their initial proposals - though not before many Deaf and disabled people were put at risk of losing their jobs.  

However, the government’s focus is still on how to make the existing budget go further.  A guiding principle, set out in the DWP’s ‘equality analysis’  of recent Access to Work changes is to only meet “the customer’s minimum need”.  It is also clear from this document that introducing personal budgets for Access to Work resources is motivated by the drive to reduce ‘high value awards’ rather than a wish to deliver choice and control.

A survey of people’s experiences of A2W, which has just been published, found:

• poor customer service provided by the re-organised call centres, resulting in delays and errors 
• more frequent reassessments which could be onerous in terms of time and evidence required, getting in the way of people doing their paid employment
• increased restrictions on the use and portability of support, especially for people who were self-employed
• Deaf people faced particular difficulties, with call centres ill-equipped to deal with non-hearing customers as well as measures to drive down the cost of BSL support essential to do their jobs
• reductions in support, often without sufficient notice.

Many respondents to the survey - some of whom had over a period of years built successful careers supported by Access to Work -  reported “that they were now made to feel ‘like scroungers’”.

A cap being placed on the amount of support a person can receive is a particular threat to the working lives of Deaf people who use BSL Interpreters.  For many it will make full-time employment impossible. As Jenny Sealey, theatre director, told the BBC: “At the thought of having to cut my hours, I can feel me - Jenny - shrinking, becoming this small person, feeling quite terrified of what my future is. I can't believe this is going to happen, it makes me feel quite sick”.  Yet from April 2018, her funding for BSL Interpreters will be capped and she will no longer be able to work full-time (the BBC’s Victoria Derbyshire Show covered the problems with Access to Work in some detail). 

The DWP’s equality analysis of its changes to Access to Work recognises that placing a cap on the amount of support that will be funded means that some people may not be offered or may lose their jobs.  They admit that “Some of the cost of support may fall back on employers. There is a risk that this may discourage employers from employing disabled people, increasing the likelihood of unlawful discrimination and reducing equality of opportunity”.  This acceptance of reduced opportunities to work does not sit well with the government’s aim of halving the disability employment gap. It is also a shockingly deliberate increase in the injustice experienced by disabled people.

Access to Work funding is discretionary.  There is no right of appeal, no access to an independent complaints procedure. Whether you get it, how much you get and what type of assistance you get depends on the skill and experience of the Access to Work advisor, and/or whether they feel pressurised to reduce the numbers qualifying or the value of awards.  If you’re unlucky and get an advisor who doesn’t fully understand the particular barriers you face or the ways in which they can be overcome, you may not get what you need.  DWP emphasise that people cannot challenge the amount they have been allocated and can only ask for “one reconsideration” by another advisor. 

This lack of a right of appeal is particularly worrying in the light of Access to Work applicants’ experiences - recounted in the StopChanges2AtW report - which suggest “that ‘value for money’ guidance issued by DWP is being interpreted and applied in decision making by inadequately trained advisers with insufficient understanding of their clients’ needs, and in response to pressure to make savings”.

The government failed to act on the Sayce review’s recommendation that money from existing, and failing, employment support programmes should be re-allocated to Access to Work. Instead, only 20% of the funding previously allocated to the Work Programme and Work Choice has been made available for a new Health and Work programme and the government’s approach to Access to Work continues to be spreading existing resources more thinly.  There remains confusion about how much the ‘real terms’ increase referred to in the 2015 Spending Review will actually be.  That Review said an additional 25,000 people would receive Access to Work awards and the Health and Work Green Paper said that the programme would aim to support 60,000 people.  Currently, 25,020 people receive help from Access to Work - there’s a long long way to go. And current rules and the cost-cutting approach will do nothing to help bridge the disability employment gap.

As the report published by the StopChanges2AtW campaign argues, “When it works well, AtW is a personalized, flexible support scheme which increases choice and control for Deaf and Disabled people over their working lives and their participation in society”.  Unfortunately, a few people sitting in a room in Whitehall have decided that some people’s support needs are just too expensive.  And the current government seems to think it is acceptable to normalise inequality by denying people the support they need to put them on a level playing field with their non disabled peers. 

The only way the Access to Work programme will achieve its enormous potential is if its rules and implementation are co-designed with disabled people and their organisations. Listening to the StopChanges2AtW campaign and taking on board their recommendations would be a good start.

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 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”.

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.  

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.