Ignore ‘project fear’ – personal health budgets are a welcome development

Several years ago I visited Baroness Jane Campbell in hospital to help draft a speech that was to be delivered on her behalf by Baroness Tanni Grey Thompson on the occasion of the launch of the Joint Committee on Human Rights inquiry report on the right to independent living.  Baroness Campbell was a member of the JCHR at the time and had spearheaded the inquiry which centred on how well UK law and policy was advancing disabled people’s right to be the authors of their own lives.

In the same ward at the time was a young man with the same condition as Jane: ‘Spinal Muscular Atrophe.’  He had had an emergency trascheotomy.  We sat and listened to his story and included it in the speech.

Prior to being admitted to hospital the young man had used direct payments from his local council to fashion a full and active life.  He had is own place to live, ran his own business and had a steady girlfriend.   But now his ‘needs’ no longer fell into the box marked ‘social care.’  His trascheotomy meant he required continuing ‘healthcare.’   However, unlike social care, direct payments were not (at the time) permitted in relation to healthcare.  He would no longer be able to direct his own support, or choose who supported him.  This would be down to the Primary Care Trust (PCT).  The PCT’s preference was for the young man to live in nursing care.  The young man’s preference was to go home and resume his life, which he was ready to do after one month of being admitted to hospital.  The resolution took six months, during which time he ‘lived’ in a high care unit, with no contact with the outside world, listening to people struggling to breathe, and quite often listening to people die.   He lost his business and his girlfriend.  The avoidable cost to the taxpayer of his elongated stay was £250,000.    The avoidable cost to him was incalculable.

That one story exemplifies why I support personal health budgets.  Where our lives pivot on continuing healthcare it must do more than just keep us alive.  It must be designed to support us to live our lives to the full.

It is also why yet again I have to call out Peter Beresford for his ongoing and utterly slippery ‘project fear’ regarding personal budgets (PB’s) and personal health budgets (PHB’s).

Peter’s main line of argument is that, as pursued by this Conservative Government PB’s and PHB’s must only exist to implement spending cuts and privatisation and hence must be rejected.  At the same time he claims to support direct payments, introduced by John Major’s Conservative Government in 1996.   However,  when this morning a person put to him that local authority direct payments were too problematic to be used for older people ‘lacking capacity’ and had ‘no place in the NHS’, rather than challenge their argument he replied ‘PBs directly undermine the universalist principles of the NHS which is why this govt likes them’.  Another person tweeted to ask whether the ‘PB question (is) separate to the Bill to set upper limits NHS treatment free at point of use ?’ to which Peter replied ‘good point sounds like policy pushing in same direction’.  The only problem being that no such Bill (or policy) exists.

In truth, personal health budgets neither herald rationing, or the involvement on non-public entities in the arena of health.

‘Universal’ healthcare does not nor has it ever meant ‘unlimited’ healthcare.  The NHS has finite resources which are already targeted.  The NHS does not charge those who benefit from its services, which is what distinguishes it from social care, but that does not mean it operates a ‘blank cheque’ policy.  In this sense, what personal health budgets offer is a degree of transparency hitherto denied about what is spent on our care and how the money is spent.  It is in all of our interests to prevent the sort of huge waste outlined in the case above and personal health budgets can help achieve that.

As for ‘privatisation’, the NHS already spends £billions procuring products and services from businesses and voluntary sector organisations, including drugs, medical equipment, food, wheelchairs, digital hearing aids, aids and equipment, nursing care, research and so on.   It frequently does so via block commissioning, having little regard to the individual needs and preferences of patients.

What PHB’s can restore- to a relatively small number of people who require continuing health care because of the complex nature of their impairments and ongoing interaction with the health system – is control over day to day life.  In keeping with the UN Convention on the Rights of Persons with Disabilities this includes control over where and with who to live, over who provides support and how they provide it, over the kinds of products one has in one’s home and so on.   In doing so PHB’s invite people to be partners, rather than simply objects, in relation to their own health and wellbeing.

In short, as with personal budgets, personal health budgets aim to expand opportunities for independent living.   I’m unclear why Peter doesn’t support them, but then he does have a book to promote……

 

 

 

 

 

 

 

 

Personal budgets can and do work. Why are some not prepared to let them?

Peter Beresford has been a consistent and vocal critic of personal budgets, as elaborated in the Care Act 2014.  This week he wrote a further familiar piece under the headline ‘Personal Budgets don’t work. So why are we ignoring the evidence’, a headline betraying his theory that there exists a conspiracy of silence among ‘the supporters of In Control’ (who he considers to be the architects of personal budgets) regarding faults in design or implementation.  To drive this point home Peter launched a volley of tweets accusing these ‘supporters’ of attacking any criticism. For example:

 16h16 hours agoLondon, England
In Control’s supporters criticise anyone who challenges their failed model of PBs which undermined disabled pple’s’

 

Moreover, Peter appears to regard anyone disagreeing with his analysis not only as an supporter of In Control but as offering unconditional support for the government:

depressing how many supporters this govt’s IL policy seems to have however disastrous it is’

Two disabled people who responded to his article to set out why they believed personal budgets had improved their lives were met with the (since deleted) tweet:

‘check out who supports this govt’s disastrous personal budget policy http://www.theguardian.com/social-care-network/2016/may/05/personal-budgets-health-care-nao-report#comments … do they support its welfare reform too?’

Nice….

A great many people value the idea of personal budgets yet express disappointment and concern about how they have been implemented, not least the corrosive effects of spending cuts, the undermining impact of welfare reform, the red-tape and bureaucracy needlessly imposed by some councils and the lack of investment in local support infrastructure such as disabled people’s user led organisations.    What they do not question though is the basic principle of finding ways to extend choice and control over support, and over life, to more disabled people.

For many, including me, their support for personal budgets can be traced back to the Number 10 Strategy Unit report ‘Promoting the Life Chances of Disabled People’ (2005), much of which was written by Dr Jenny Morris.  As Jenny reminds us in her excellent blog ‘Personal Budgets and self determination:’

‘(a key message) was that some people, or the family members supporting them, wanted more control over resources but were daunted by the responsibility of taking a direct payment and organising their own support.’

Jenny goes onto note how Life Chances proposed:

“a simplified resource allocation system, including ‘one stop’ assessment and information”, which “addresses all aspects of needs for support and/or equipment or adaptations”

–  Individuals being able to “take some or all of their budget as a cash payment and/or to have control over the budget (with support if necessary) without actually receiving the cash”

–  “self-assessment, with advice/information or advocacy support where required”

–   Each local authority area having a user-led organisation, modelled on existing Centres for Independent Living, which would provide support to disabled people to enable them to use individual budgets and direct payments.'”

 

That, I feel, remains many people’s ambition, which is why their many criticisms do not add up to an absolute rejection of personal budgets, which in policy intent at least, reflect a number of these goals or at least represent a further step towards them. It is also why outright attacks on the very idea of personal budgets and those invested in making them work, such as those made by Peter Beresford and his ‘supporters’ are met with the kind of response which Peter has encountered.

Direct payments represented a major breakthrough for the realisation of disabled people’s right to independent living and Peter correctly pinpoints factors that determined their success, such as effective and sufficiently resourced local centres for independent living (factors which appear equally determinative of the success of personal budgets in extending choice and control, however a person elects to have them expressed).  It would be good to see many more people supported to take up the opportunities they present.  But the evidence that lay behind the Life Chances report found that they were not a panacea and that pursuing only the policy of direct payments, as Peter appears to advocate* would deny opportunities for choice and control to many.  Individual/personal budgets were never intended to supplant direct payments, but to build upon them by extending their benefits to people who for one reason or another did not want to assume such responsibilities.   The acid test – whether for direct payments or other methods including individual service funds, or council managed support – is therefore whether as a consequence of the Care Act people feel able to exert greater control over their support and over their own lives, irrespective of the approach that they choose.

Far from indulging in a conspiracy of silence, organisations that have come together under the umbrella of the Independent Living Strategy Group have with the financial and technical support of In Control been monitoring implementation of choice and control under the Care Act 2014.   The first survey was carried out in 2015 and the findings published in October 2015 which can be read here.  I challenge anyone having read this report to suggest that In Control and its ‘supporters’ are engaged in a conspiracy of silence regarding the shortcomings of current implementation.

The 2016 survey has just been launched and I encourage as many people as possible to complete it.  The findings will be presented directly to Ministers in July and published in the autumn.

What distinguishes this approach from that of Peter and his allies is a desire to see the Care Act 2014 deliver on its promise by holding national and local government’s feet to the fire over implementation, rather than rejecting the policy it contains only one year after it came into force.  We want to pinpoint inconsistencies between what the law and statutory guidance requires and the experiences of people using or seeking care and support in order to improve implementation and to bring to the attention of national and local politicians the difficulties that are being encountered in the ground so that they might be addressed.  Where necessary we will explore opportunities for strategic litigation.  But we will also highlight good things where we find them, such as the decision by Hammersmith and Fulham Council to scrap charging for care services.

We also hope to  find opportunities to pick up where initiatives such as the Right to Control left off – reconnecting with the proposal in Life Chances to see integrated personal budgets – focusing on people’s whole lives, not dictated by service silos.  The forthcoming Employment, Disability and Health White Paper is one such potential opportunity, as are personal health budgets.

Despite many problems, personal budgets can and do work.  Let’s not reject them as Peter Beresford so prematurely advocates but focus instead on addressing the problems in order to realise their potential.

 

*I have asked Peter if he believes that models other than direct payments could work but have not received a reply, so apologise in advance if this misrepresents his position.

 

 

 

 

 

 

 

 

On employment support, only genuine experts need apply

It surely follows that an organisation bidding for public contracts to provide employment support to disabled people on the basis of its expertise in doing so should have an exemplary record of employing disabled people?  This would provide evidence of their belief in disabled people’s potential, their own organisation’s commitment to the goal of halving the disability employment gap and be a powerful signal both to the disabled people they support and the employers they strive to engage.   Moreover there is growing evidence of the powerful role peer support can play in successfully supporting disaled people into sustainable employment (see the forthcoming report from Disability Rights UK and the Work Foundation).

Yet as far as I am aware there is no requirement for organisations bidding to run such services to demonstrate any of the above.  Moreover, I have struggled to find information on the numbers of disabled people employed by some of the main specialist employment support providers or the role of peer support in their methodology (the subject, I hope, of a future bit of research).

We are advised that the Work Programme and Work Choice are no more where disabled people are concerned, but we await the Disability, Health and Work White Paper to discover what if anything might replace them.  This strikes me as an opportunity to secure criteria in future tender specifications to run employment programmes that give preferred contractor status to organisations with a demonstrable record of employing disabled people, especially in front line roles.

 

 

 

 

What did the person want?

In 1995, the French Counseil d’Etat ruled that ‘dwarf throwing’ (lander de nain) was incompatible with ‘ordere public’ because the persons involved compromise human dignity by allowing themselves to be used as ‘mere things.’[1] The people of restricted growth in question had contested that it was both the manner via which they made their living and furthermore that they chose to do so freely.   The case, alongside others, raises deep philosophical questions regarding the meaning and nature of human dignity and in particular the balance to be struck between individual autonomy and wider conceptions of the public good.

Fast forward to 2016 and ‘that photo’ of a man with a learning disability using a wheelchair piled high with shopping bags while his support worker talks on the phone and smokes a cigarette. Like many others I reacted with revulsion at what appeared an image of outright callous disrespect for human dignity at best, calculated abuse at worst.

But then someone gave me cause to question what I had seen, and it is that account that Mencap now appear to have concluded, following ‘an independent review’ and that of the safeguarding authorities, to be correct. Namely, the individual asked for the bags – his shopping bags – to be placed on his wheelchair table, while the support worker made the phone call.   Mencap has censured the support worker for making the call and for smoking while ‘on duty’ and we might wonder whether, had she not done so, the bags would have needed to be placed there at all. But safeguarding authorities and an independent investigator for Mencap have concluded that the image does not depict what many of us concluded it to because, in essence, the man was exercising autonomy and the support worker was respecting it.

As with the French case above, responses to the image and the actual events surrounding it (insofar as we have a reliable account) centre on the trade off between ‘objective’ and ‘subjective’ conceptions of human dignity. That is to say, between what a person deems acceptable for themself in accordance with their own will and preferences and what we deem acceptable for the person and society more generally.  But they also raise questions about our belief in the capacity of people with a learning disability to exercise autonomy sufficient to have a reliable sense of subjective dignity.

In our initial reaction to the image, how many of us stopped to consider that the man may have asked to have his shopping bags placed on his wheelchair tray? Why didn’t we? Was it because in the picture he looked swamped and uncomfortable and hence couldn’t possibly have asked to be placed in such a situation? Or was it because irrespective of his will and preferences we believe that the support worker shouldn’t have allowed such situation to occur (which we have concluded, from the photo, only took place because of her decision to stop for a cigarette and a phone call, despite the fact that we know nothing of what happened immediately before or after, or on other occasions, as far as I know).  Might it also be because the dominant framing of disability widely and learning disability more specifically has been for some time now that of victimization and abuse that we are led to interpret such images in this way?  That even if he did ask for the bags to be placed there that we do not accept that he would not have done so freely but as a result of fear or pressure?

In many ways we might take heart from widespread reaction to the photograph. Isn’t it positive that an objective conception of dignity exists sufficient for people to be alarmed by an image such as this one and to demand action? Certainly in many cases of disability hate crime there have been reports of passive bystanders who could have intervened but who chose not to or who became complicit by, for example, watching and laughing as a gang caused a man with learning difficulties to drown at Lakeside Shopping Centre.   We might also be acting from an instinctive sense that there exists a power imbalance – that as a result of both the person’s impairment and their dependence on the support worker and others the person is limited in their power to exercise free will. This might arguably have helped inform our interpretation of the image.  Conversely the image reinforced that interpretation: here was a person with a learning disability being ‘done to.’   It also seems to be why many still continue to feel that harm was done and that justice has not been served in Mencap’s response: isn’t the man’s reported perspective a little too convenient and how can we trust it, coming as it does from Mencap itself?

Alternatively our reaction might in reality be another case of what was once described to me as ‘malevolent benevolence.’ While we would like to believe it came from a place of kindness and concern, what lay beneath is our prejudicial view that people with a learning disability lack the capacity to exercise choice and control, especially where we might take issue with a persons choices as here. Here, objective conceptions of dignity continue to trump subjective ones: the desire to protect people with a learning disability from themselves and others trumps our commitment to respect people’s will and preferences.

Isn’t it precisely such denial of voice and choice in the name of protection that has placed and which continues to place so many people with a learning disability at risk? It underpins institutionalization and restrictive social work practice in areas such as personal relationships or the opportunity for people to be parents.   It is the basis for so-called ‘diagnostic overshadowing’ by medical professionals which is responsible for avoidable ill-health and mortality.   It helps explain the institutional failure of the criminal justice system to respond to disability related harassment and hate crime.

Via Twitter a colleague said to me of Mencap’s decision: ‘I’m just worried about the signal this sends to society at large’. But I think that unless there is evidence or indication of harm (and this image did of course appear to indicate harm), that we should be equally worried about sending a signal that a person’s will and preferences should be ignored and a support worker punished for respecting them.   By prioritizing objective conceptions of dignity over subjective ones, don’t we just perpetuate the myth of ‘protection’ and the denial of choice and control? Don’t we encourage people not to listen and help prevent people with a learning disability from being heard?

While I understand that they have a duty of care both to the man concerned and to a member of staff, I think that Mencap’s statement explaining the decision has left too many questions unanswered. I expect Mencap want to put the whole incident to bed now. But a brave organization will see it as an opportunity to open up a debate with the public about the attitudes, behaviours and practices that this event raises for them as an organization that is dominant in the life of people with a learning disability, for those commissioning, delivering and inspecting services, for people with a learning disability and their families and for society at large.

And the rest of us, however professed our commitment to the human rights of people with a learning disability, will always remember to ask: what did the person want?

[1]Conseil d’Etat (1995) req nos 136-727 (Commune Du Morsang-Sur-Orge and 143-578 Ville D’Aix-en-Province

The choice ahead on protecting and promoting investment in disabled people’s lives

For those affected by cuts to benefits, the effect is far less money to live on and to pay for the things that allow one to live a life.   It doesn’t really matter where the money came from or why.

It is perfectly understandable that those opposing cuts to disability related benefits draw few distinctions in their advocacy between cuts to out of work disability benefits, cost of living benefits, support for housing costs and payments in lieu of services such as the Independent Living Fund when calling for a ‘cumulative impact assessment.’ Austerity is a political choice from which these various cuts derive.  It has closed in on a great many disabled people’s lives from all sides.  It has often not felt as though government draws any distinctions either.  As a result, many battles have become one almighty war.

In recent weeks we have though witnessed a deeply contrasted debate over the future of Employment and Support Allowance on the one hand and Personal Independence Payment on the other. MP’s fully supportive of the former now express deep concerns about the latter.  Is this just politics, or does it run deeper?

Both ESA (and its predecessor Incapacity Benefit) and Personal Independence Payment (and its predecessor Disability Living Allowance) are rooted in the principle of social security: ensuring that everyone has an income sufficient to enjoy an adequate standard of living.   Both are paid for via general taxation and exist as a form of social insurance.

However, that’s where their similarities depart.  IB/ESA is paid to people not currently in paid employment who are assessed either as unable to work or as unable to work now but who may be in future.  It is built on a recognition of the disability related ‘income penalty’ experienced by people who face significant impairment or health related barriers in earning an adequate income through paid work.   DLA/PIP is paid to people whether or not they are in paid employment, is not means tested and is built on the recognition of the disability -related ‘extra cost of living penalty’ encountered by some people with an impairment or health condition.

Both are critical to addressing poverty and its consequences, yet where IB/ESA recognises the cost of not being able to participate, DLA/PIP is designed to address the costs incurred by disabled people of striving to participate on an equal basis with others.

As I say at the beginning of this post, this distinction means little once we come down to how much is in people’s pockets.   £30 less a week for people in the Work Related Activity Group is £30 less a week with which to spend on participation. Despite assurances apparently given to or by Tory MPs, PIP will not make up the difference for a whole host of reasons.  People who the government deems not currently able to achieve a living income through paid employment will be poorer and less able to participate because of the cut to WRAG.

However, realities aside, the political legitimacy of these two benefits rests upon the distinction above.  PIP is regarded as an ‘active’ benefit, whereas ESA is seen as inactive ‘welfare’.  Take away PIP and people become inactive. We saw a similar argument over Osborne’s previous plans to cut Working Tax Credits: because they were seen to punish ‘strivers.’   This might help explain why the same MP’s that voted for a cut in the WRAG could less than fortnight later be so opposed to the prospect of further cuts to PIP.    Of course one could mount an argument that the cut on WRAG also punishes strivers, but we seem unable to get past the orthodoxy that ‘extra’ out of work benefits act as a work disincentive.

This situation presents campaigners with a dilemma: is it best to seek to restore the good name of ‘social security’ in the round, or to accept, harness and build on these distinctions?

On balance – and mindful of trends in public attitudes, the fiscal pressures that will be felt by governments of all political persuasions over the coming decades, coupled with the need to get back on track progress towards equality and independent living – I think the more fruitful long term strategy is the latter approach.

On the one hand we have to ensure that people who cannot work for reasons related to an impairment or health condition are socially protected. Defending the principle of adequate social insurance against work limiting illness, injury or impairment must remain high on the agenda. But at the same time I believe it is in the interests of disability rights to position as ‘active’ as much public investment in financial and practical support for disabled people as possible.

The lesson of the past few weeks is arguably that by drawing out the distinctive histories, purposes and functions of the various systems of disability-focused financial and practical support we stand a chance of fracturing and diminishing public and political support for cuts and making a fresh case for investment in disabled people’s lives.

 

 

 

 

 

 

 

 

Disinvesting in Personal Independence Payment will punish strivers

Changes to Personal Independence Payment that will see 400,000 people receive significantly less financial support to overcome barriers to freedom and opportunity are expected to be announced in George Osborne’s hole in the public finances-plugging budget today.

At the same time under the rubric of investing in growth and opportunity, Osborne will announce plans for high speed rail across the Pennines, Crossrail from North to South London and for every school to become an academy.

The former is justified as getting ‘welfare spending under control’.  The latter are cast as investment in the future.  It reveals a great deal about Osborne’s attitudes that disabled people’s contribution to the future is not regarded as a worthwhile investment.

But here’s a thing: I think this could horribly backfire for him if campaigners and their allies play this well.   While the government may in the end have pushed through reforms to ESA, it faced a huge battle.  And a key reason for that was that it had a great deal in common with Osborne’s previous plan to scrap Working Tax Credit: it would punish ‘strivers’ for doing ‘the right thing’.

Personal Independence Payment and its predecessor Disability Living Allowance exists to help people overcome barriers so that they can participate in and contribute to society.  In this sense one can align it to areas of government investment such as childcare for example, or working tax credits.   It is investment with return.  What Osborne is proposing therefore amounts not to a ‘spending cut’ but as massive disinvestment in the freedom and opportunities of disabled people and their families and in the contribution they would otherwise be supported to make to Britain.

Ministers argue that they are focusing resources on the ‘most severely disabled.’  This argument might hold water in relation to out of work benefits.  But Personal Independence Payment forms part of the opportunity infrastructure that will prove necessary to halve the disability employment gap, like Access to Work support or Disabled Students Allowance.  Removing this support from those deemed ‘less disabled’ will recreate barriers to employment for individuals and to the government in achieving its professed goal that PIP had previously helped overcome.  In short, the reform will actually make more people ‘more disabled.’

The consequence will be huge costs and opportunity costs for future generations: because people won’t be able to go to work, will become unwell and draw more heavily on the NHS, and because they will have less money to spend in the economy.   Which of course makes no sense at all.

As the crowd at the Paralympics so rightly proclaimed of Osborne:

‘Boooooooooooo’

 

What if?

Let’s imagine a disabled person and their support worker go on a bit of a shopping spree.  They have a great time finding clothes and trying things on and by the end of the afternoon have quite a haul.  But the disabled person is aware that the support worker is anxious about the wellbeing of her ageing mother, who has been ill, and suggests that she take a break to call home.   It’s raining.  They find some shelter but the ground is wet so the disabled person suggests to the support worker that she place his shopping bags on his wheelchair table while she makes the call and has a quick fag.  Across the road an iPhone camera records the image.  It is uploaded to Facebook and….. boom.

None of us actually know what the image that circulated via social media and found its way into the mainstream press really showed.   It may show an act of abuse.  It may not.  But most of us, me included, have taken the characterisation of the picture at face value.  In doing so we have assumed that the person using the wheelchair is a victim, without agency and we have assumed that the support worker is exploiting their power to abuse them.  What does this say of our own attitudes and prejudices about the rights of people with learning disabilities?

Now, if it transpires that this was not in fact an act of abuse then an apology is certainly owed both to the accused member of staff and to the persons using the wheelchair.  And at one level Mencap deserve an apology, because the photo does not in fact show a member of their staff abusing a person with a learning disability.  On the other hand, Mencap issued a statement saying ‘We are appalled by what is happening in the picture’ which suggested that they believed it to be abusive practice.  Their subsequent response can be therefore be taken to be to an illustration of how they respond to an image of a member of staff abusing a ‘beneficiary’ of their services.  On that basis I stand by my reflections and the questions posed at the end of the post, to which I might add one more:

If there is a possibility that this image does not depict abuse by a member of Mencap’s staff, why did the organisation issue a statement that reenforces the idea that it does?

Mencap – a case of ‘them and us’?

A truly appalling image of contempt and abuse by a member of Mencap’s staff towards a person they were employed to support found its way online and into the press yesterday. It shows a ‘support worker’ talking on the phone and smoking a cigarette while beside her under a mountain of shopping bags is the person she is supposedly supporting.

A one-off? Just a bad apple? This is certainly what Mencap’s crisis communications seems keen to stress:

Mencap response to image on social media

‘We are appalled by what is happening in the picture. After seeing it we immediately took action, and have suspended the support worker in question and reported the issue to the relevant local authority safeguarding team. We take the wellbeing of the people we support extremely seriously, and we expect and train our staff to deliver high quality care and support services.  What we see here would fall well below that standard. Our priority now, as always, is ensuring that we offer the highest quality of care to our beneficiaries so they live the lives they choose.”

I know good people at Mencap. I expect lots of their staff will feel deeply ashamed by the image.  I’m sure that thousands of people have had their lives changed for the better with the organisation’s support. Its origins lay in campaigns which, in their day, bore the hallmarks of campaigns such as Justice for LB today: parents fighting for a better life for their children.

But if a picture paints a thousand words then the choice of words in this press statement paints a deeply worrying picture.

It suggests a culture in which the rights of people with learning disabilities are not paramount and hence one in which such behaviours are more likely to find expression. That is to say, it suggests a deep organisational problem, not simply a one-off.

The headline ‘Mencap response to image on social media’ contains such evident distancing and nowhere in the statement is there any explanation as to what it is referring to. Mencap need to own that image and wear it as a badge of dishonour – one which says to its own staff and anyone else concerned ‘we will not be this.’ Instead it has sought to reduce it to ‘an image’ and disassociate itself from it.   The fact that the statement is attributed to the Regional Director of Services, not the Chief Executive also suggests a worrying attempt to downplay its seriousness.

The use of the term ‘beneficiaries’ should raise loud alarm bells.   It smacks of a bygone era in which disabled people were reduced to regarding themselves and being considered fortunate objects of charity. It speaks of services ‘done to’ or ‘for’ people, not of working alongside people to realize their human rights.  It is precisely such attitudes that predict cultures of abuse, because they allow power differences to prevail.   The fact that the statement does not include an apology to the person concerned is also perhaps telling in this respect.

Of course, the language of ‘wellbeing’ is in the Care Act, but used here it again fails to convey the idea of people as anything other than service recipients, not human beings with rights to be treated with dignity and respect.   Moreover ‘taking wellbeing seriously’ is also not the same as saying ‘our only legitimate role is to protect and promote wellbeing and if we fail, we have failed absolutely’.

And a particular stinger is the description of the behavior in the image as falling ‘well below that standard.’   Not as utterly violating Mencap’s values and principles, but as falling quite a long way below an expected standard.

It is a poor response by any measure, but taken together it also suggests a deeply ingrained psychology of ‘them and us’ at Mencap.

Of course we should look beyond the language of one press statement in arriving at such a conclusion. By way of example, I would point to the research Mencap published earlier this year which argued that employers lack the confidence to employ people with learning disabilities. As Chris Hatton then dutifully identified from Mencap’s annual report, less than 1% of its own 8000 plus staff have a learning disability.   Even in its external advocacy, people with a learning disability are ‘over there’ while Mencap doesn’t practice what it preaches to others.

So what of Mencap’s capacity to ‘be the change it seeks in the world’? I think that Mencap is still to some extent trapped by its origins as an organization led by and for parents of people with learning disabilities. For every Mark Neary or Sara Ryan that place the rights of their adult children in the foreground, there are several Rosa Monckton’s favouring a ‘custodian model’ of often segregating ‘care’.  For all the talk of personalization, for many people with a learning disability agency and autonomy are denied through lack of resources, oppressive practice or the attitudes of guardians.  While the long stay hospitals may be gone, small-scale institutional provision persists like chickweed.    Mencap are at the mercy of NHS and local authority commissioners (though they could of course refuse to run certain services or to accept contracts which drive standards below that which they consider acceptable).  Given such pressures, is Mencap capable of even becoming a genuinely rights-respecting organisation?

But I also fear that organisations such as Mencap come to internalise society’s perception of their essential ‘goodness’ (characterised by fun runs & coffee mornings etc) based on prejudicial paternalistic attitudes towards the groups that they exist to serve.  As a consequence they risk losing the institutional capacity for genuine self-reflection, regulation and for meaningful change. And like any large institution, in time self preservation risks overwhelming all other concerns.

So I’ll finish on some genuine questions for Mencap arising from what we saw yesterday:

  1. What policies and practices does Mencap have in place to respect the will and preferences of people with learning disabilities who draw on its services?
  2. How many people buy Mencap’s services using a personal budget or direct payment versus receiving services commissioned by the NHS or local authorities?
  3. How many people using Mencap’s support services have access to a self advocate?
  4. Can people who use services hire and fire staff and what say do they have in the running of services?
  5. Can people who live in Mencap supported living come and go as they please, have whatever visitors they choose, decide what to eat and when to get up and go to bed?
  6. What involvement do people with learning disabilities who use Mencap services have in internal monitoring, evaluation and improvement?
  7. What targets and strategies does Mencap have to increase the number of paid staff with a learning disabilities?
  8. How many complaints of abuse or poor treatment has Mencap received in the past 5 years? How many have been upheld? How many were referred to safeguarding teams or to the police?
  9. Is Mencap confident that the image in the press is of isolated behaviour, not behaviour which may be prevalent or at risk of being prevalent in some of its services?  What steps is it taking to determine this?

The need to change the public narrative on human rights has never been greater

So, as Tim Shipman suggested at the time, the ‘sovereignty rabbit’ that David Cameron planned to pull out of the hat to win over Boris Johnson to the ‘stay’ side of the EU debate was ‘dead on arrival’. Appearing on Andrew Marr yesterday morning Johnson said that the workable (have your cake and eat it) plan he was prepared to sign up to was killed dead by government lawyers. Number 10 is still suggesting that proposals to restore or safeguard UK sovereignty will be published before the referendum, with Oliver Letwin in the driving seat, but they have lost their primary political utility: buying Boris.

So what does all this mean for the ‘British Bill of Rights’? In late 2015 Justice Secretary Michael Gove advised Parliamentarians that publication of the proposals were delayed because the Prime Ministers had asked that they include proposals concerning the supremacy of the Supreme Court over the European Court of Justice i.e. the Boris clause.   Do the two continue to be intertwined? And if so, can we expect the British Bill of Rights proposals alongside those for UK sovereignty before the referendum?

I think we can be almost 99.9% certain that the answer is ‘absolutely no way’. Michael Gove would be in charge of any such consultation, along with his fellow avid ‘outer’ Justice Minister Dominic Raab MP. While Cabinet Ministers have been permitted to declare their personal position and to campaign for it, Number 10 is going to great lengths to weaken Ministers opposed to official government policy, for example by blocking their access to official papers and intelligence on EU matters. Number 10 is not going to give Gove and Raab – two highly effective political operators and communicators – an official platform from which to launch damaging attacks on ‘Europe’ (even if it’s a different Europe to the one in contention).   Proposals for a British Bill of Rights will not then – in my estimation – appear before 23 June.

So what future for a British Bill of Rights? If the UK votes to leave the EU, Cameron will presumably resign, there will be a leadership election and possibly a General Election (assuming Parliament can change the Fixed Term Parliament Act 2011).  It would therefore become a question of the next Conservative Party manifesto and the outcome of that election.  If Britain votes to stay, I think it’s possible Cameron will step down early, followed by a leadership election and possibly an early General Election, with the same conditions applying.  I certainly cannot imagine Cameron – having secured both the Union and the UK’s place in Europe – wanting to open up new battle-lines with both in pursuit of repealing the Human Rights Act. Then again, it is said that repeal is a deeply personal matter for Cameron so he may wish for it to be part of his legacy.

Ultimately though I feel the greater political utility to the Conservative Party lies in threatening to repeal the Human Rights Act than in actually striving to deliver on that threat. As with Cameron’s sovereignty proposals, the reality will naturally deliver short of the rhetoric. Moreover, the threat is deeply damaging in its own right, creating a chill effect that damages rights protection without ever having to change the law itself (and not only in the UK but globally).

NGOs that would ordinarily embrace human rights (and which do in say Northern Ireland) won’t even utter the words for fear of being either singled out or infected by the toxicity of public and political discourse. It has been suggested that the judiciary, domestically and at the European Court of Human Rights has become more conservative in response to accusations of judicial activism.   Stories which scream ‘human rights abuse’ such as the unexplained deaths of people with learning disabilities in NHS hospitals are reported in the media without any reference to human rights at all, while in any story concerning the frustrated deportation of a foreign criminal the words ‘Human Rights Act’ will be up in lights.

The reality is that the threat to repeal the Human Rights Act is helping to erode our human rights protection by stealth. It is part of a wider trend that is weakening our power as citizens to hold government to account, either through the Courts, via Parliament, the media or through organisations of civil society that represent us or advocate on our behalf.

This is why, even if the threat of law reform has once again gone on the back burner, the need to assert our human rights and to go about transforming the public narrative has never been greater.

Abolishing the Work Related Activity Group makes no sense even by the government’s own illogic

When the proposals to reform Employment and Support Allowance were first touted by Ian Duncan Smith following the spending review he argued that:

‘ESA may have been designed with the right intentions, but at its heart lay a fundamental flaw.  It is a system that decides you are either capable of work or you are not. This needs to change – things are rarely that simplistic.’

In fact, the very category Duncan Smith’s Welfare and Work Bill has been trying to abolish – the Work Related Activity Group – was designed precisely to overcome such simplicity, removing the binary ‘can work/can’t work’ test by including a ‘may be able to work sometime in the future’ option.   The result of getting rid of the WRAG will be to reenforce a binary fitness to work test that Duncan Smith claims to want to solve – placing people in either a ‘can never work’ or ‘ready and able to work right now’ box.  Which is, one might argue, somewhat simplistic.

A particular obsession of DWP and assorted think tanks is the effect of benefit levels on ‘incentives’ to work.  By their own admission the evidence to support this assertion is weak at best and largely non existent, but it serves the case for cutting benefits where all else fails.   So let’s take the issue of incentives and disincentives seriously for a moment.  Writing in 1974, Vik Finkelstein, one of the most significant architects of modern disability rights argued that proposals for a ‘disability income’ would:

‘immediately create for us a vested financial interest in claiming what becomes our main asset “disability”. In addition, since the amount of (State) charity will be determined by the degrees of disability, physically impaired people will also have a vested interest in playing down our abilities. The best financial contribution we could make to our families would be to become, or pretend to become, more dependent……The State, of course, will automatically be in conflict with us for it will seek to limit its handouts, otherwise there would be no one at work. State Charity, therefore, creates a conflict of interests between the State and its social administrators on the one hand and physically’ impaired people on the other.’

Now, the planned reforms to ESA may be a milestone on a journey towards there being no disability related out of work benefit at all (David Freud has hinted that this is the government’s goal).  Whatever one thinks of that aim (see my view below) abolishing the WRAG appears a very odd way to get there because it provides a powerful incentive for people to emphasise the barriers and impairment/health related limitations they face – that is, it create a powerful incentive for people to seek to be placed in the ‘can never work’ group.  This incentive is not simply borne of an extra £30 a week, but of avoiding the punitive, inflexible and insensitive sanctions regimes that, combined with entirely ineffective ’employment support,’ do nothing to help people find sustainable employment.  Moreover, we are being asked to support these reforms without having seen the government’s proposals to halve the disability employment gap.   One might argue this is somewhat putting the cart before the horse.

As for the idea being ventured by think tanks such as Reform that disability related costs should be met via Personal Independence Payment, not out of work benefits, this is something that I have floated in the past.  But once one looks deeply at the idea it quickly falls apart.

Disabled people and people with long term health conditions are more likely to live in poverty (and hence require assistance) because they face both an ‘income penalty’ and a ‘cost of living penalty’.  The income penalty is a result of reduced opportunities to raise a living income through paid employment, either as a result of the effects of ill health or impairment or because of discrimination and disadvantage, or more commonly a combination.   The cost of living penalty results from the additional costs of having an impairment or health condition.   ESA and its forerunners recognise the income penalty and additional payments are made in lieu of this.  PIP and its forerunners recognise the cost of living penalty.

As a result, PIP as presently designed would not cover the income that people who presently fall into the WRAG receive in recognition of their income penalty, and trying to amend PIP so that it addressed both the income penalty and cost of living penalty would I would argue not only be too complex a task even for Ian Duncan Smith and David Freud, it would needlessly muddy waters.

As welcome a goal as halving the disability employment gap is, committing to do so cannot justify benefit reforms that should only ever be implemented on the back of real success.  The amendment secured by the House of Lords is a helpful delay and I hope MPs will see sense and support it.  Now for the Disability, Health and Work White Paper.