The right to "live in the community with choices equal to others": Human rights and People with learning disabilities and/or autism

I belong to a group called Keep Our Human Rights in Suffolk. Our aims are: to promote greater awareness of the relevance of human rights to people in Suffolk in their everyday lives; and to champion a better quality of debate about and celebration of human rights locally.  For the last year, we have been submitting Freedom of Information requests to the Suffolk Clinical Commissioning Groups (who purchase healthcare on behalf of us all) about people with learning disabilities and/or autism who have been placed in specialist in-patient facilities. 

This blogpost explains why we’re doing this, what we’ve learnt and what the relevance of all this is to human rights.

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The origins of the legal framework of human rights are to be found in the acceptance that it is wrong for the state to act in a way which denies dignity and freedom to individuals on the basis of their membership of a specific group.  

Over many years, there has been much evidence that the state, in the form of health and social care services (and on behalf of us all), has acted in ways which deny dignity and freedom to people with learning disabilities and/or autism.  From the scandals of long-stay hospitals in the post-Second World War era through to their modern versions - such as Winterbourne View - time and again appalling treatment has been revealed, while services and government have vowed to ‘learn the lessons’ to avoid such things happening again.

The publicity about Winterbourne View prompted the government to promise in 2012, that by 1st June 2014, people with learning disabilities and/or autism who were in such institutional settings would instead receive “personalised care and support in appropriate community settings”.  In 2015 they admitted that this promise had not been fulfilled and another three year programme was announced, the Transforming Care Programme, to “enable people to live more independent lives in the community, with support, and closer to home”.

During the same period, it has been recognised that there is institutional discrimination in the way the NHS treats people with learning disabilities - discrimination revealed by investigations into unnecessary deaths which resulted from a failure “to provide the most basic nursing care such as nutrition, hydration and pain relief, and .. denying people dignity and respect”. 

One terrible example of the consequences of failing to meet people’s needs was to be found in the experiences of Connor Sparrowhawk and his family.  Connor was an 18 year old who, in March 2013, was admitted on a short-term basis to an Assessment and Treatment Unit because the services were not provided to enable his family to support him safely at home. He drowned in the bath at the Unit in July 2013 - a death which an inquest found was entirely preventable.  Southern Health NHS Trust admitted that it had breached his and his family’s human rights under Article 2 of the European Convention on Human Rights, the right to life.

This was followed by a review which sought to establish how many unexpected deaths there were in the Trust’s services between 2011 and 2015 and how many were investigated.  The review found that if you had a learning disability or were over 65yrs old and using mental health services, there was very little chance your death would be looked into. 

The #JusticeforLB campaign - a campaign to get justice for Connor and his family - prompted the #7daysofaction campaign by other families whose loved ones are in Assessment and Treatment, or other in-patient, Units.  These are young people who should benefit from the current Transforming Care Programme which requires health and social care commissioners to develop local Transforming Care Plans to develop the community services necessary to move people out of existing in-patient units and prevent future admissions. 

Keep Our Human Rights in Suffolk (KOHRS) have been trying to find out, for a year now, how many people with learning disabilities and/or autism from Suffolk are in specialist in-patient facilities and what plans there are to enable them to access their human right to a private and family life, to dignity, and to independent living. 

We have received contradictory and confusing responses to our Freedom of Information requests, and - despite email exchanges and a meeting with health commissioners - we are still not clear how many people are in specialist in-patient units, or what investment in services will be made to enable them to return to their local communities.  Suffolk’s Transforming Care Plan (TCP) was placed on their website but important information was missing and none of the hyperlinks to supporting documents worked.  This Plan has now been removed from the website. 

One particular concern we have is that we also received information from NHS England about the number of Suffolk residents in placements that had been commissioned centrally rather than by local health and/or social services.  These people did not seem to figure in the initial TCP and, when we asked Suffolk commissioners about them, their response was “We cannot account for differences in figures”. Although we have sent them the information that NHS England provided to us, the local commissioners - both health and social care - have refused to discuss this any further.

We also have concerns about the services of the main local service provider in Suffolk, the Norfolk and Suffolk NHS Foundation Trust.  This Trust has been the subject of a vigorous local campaign about the cutbacks in, and inadequacies of, its services and the scale of ‘unexpected deaths’.  The recent inspection by the Care Quality Commission identified concerns about services for people with learning disabilities and/or autism, in particular the safety of services, the level of restraint and the involvement of patients and their families in decisions about their care.

We have found that it is hard to make sense of the information available to members of the public, including that which we’ve obtained through Freedom of Information requests.  Yet, if there is one common message that runs through the unsatisfactory history of how our fellow citizens with learning disabilities have been treated, it is that a lack of public scrutiny makes possible the abuse of human rights.  We all need to understand what public services are doing on our behalf.

Maybe Suffolk’s Transforming Care Plan will deliver the ‘ordinary life’ for people with learning disabilities and/or autism that has been too often denied.  Maybe there isn’t anyone who has ‘disappeared’ into the system - as seems to be indicated by the discrepancy between the NHS England and the Suffolk figures. Maybe - despite the crisis in social care funding - local services will be developed and funded that deliver true choice and control to people with learning disabilities. Maybe specialist services will no longer be associated with inappropriate medication or restraint.  Maybe in future services will be responsive to people with learning disabilities’ health care needs so that they will not die, on average, 13 years sooner than the average for men, and 20 years earlier for women.

Our concerns stem from the fact that the evidence is not in the public domain to assure us of any of this.  Our concerns also stem from the fact that human rights should be at the core of how the needs of people with learning disabilities are responded to - but we see no evidence of this.  When the necessary investment and changes to services are not made, basic human rights, such as the right to a family life, are likely to be withheld. Every day that those responsible do not act is another day in the degradation of people’s lives. Making information scarce, and a low commitment to sharing it, is itself a barrier to ensuring their human rights are protected and promoted.

The underlying principle of human rights is that they are universal - by definition they apply to us all by virtue of our common humanity. A failure to acknowledge and uphold an individual's or a group of people’s human rights is a denial of their humanity. As the Supreme Court confirmed in 2014  “Human rights have a universal character….” and this applies to everyone, “regardless of their disabilities”.

Not only are people with learning disabilities and/or autism accorded the same human rights as other human beings but the United Nations Convention on the Rights of Persons with Disabilities confers specific rights to “live in the community, with choices equal to others”. Moreover States that ratify this Convention (as the British government has) are required “to take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

1. Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
2. Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
3. Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.”

KOHRS believes that all those responsible for developing local Transforming Care Plans should have these rights at the forefront of everything they do.  We will continue to try and find out whether that is the case in Suffolk and we hope that others will similarly raise these issues in other localities.

The Work, Health and Disability Green Paper: Magical thinking or evidence-based policy?

“To own the discourse is to win the argument”

The Green Paper on Work, Health and Disability  was published online late afternoon of Monday 31st October.  The DWP had been briefing since the Saturday before, that a major reform was proposed to the Work Capability Assessment and that all the evidence was that work is good for people’s health.

Newspapers and television news highlighted the proposals but no-one actually saw the document until news media had been running the DWP storyline for almost 48 hours  The BBC initially intended to film some interviews at a London disabled people’s organisation on Monday afternoon but cancelled it as by then the story was no longer news.

The consultation on the Green Paper is running until 17th February, long enough for individuals and organisations to get to grips with what is really being proposed. 

I’ve focussed in this blogpost on three important contentions made in the Green Paper, on which some of its proposals are based.  I’ve tried to get behind the spin which accompanied its launch to see what exactly is being proposed.

Contention No 1:  There is a causal relationship between work and health, such that if someone moves from unemployment into work their health will improve.

The Green Paper opens with the statement that “The evidence that appropriate work can bring health and wellbeing benefits is widely recognised”. The reference for this is the major review of evidence, published by the DWP in 2006.

On the face of it, this is a fairly uncontentious statement.  The word ‘appropriate’ recognises that not all work has a positive impact and the phrase ‘can bring’ indicates that this is not a claim of a unilinear causal relationship.  Indeed, early on in the Green Paper the complexities of the relationship are acknowledged: 

…….whilst work is good for health in most circumstances, the type of work matters. Many factors such as autonomy, an appropriate workload and supportive management are important for promoting health at work.

This reflects the conclusions of the 2006 review.  The Green Paper could also have drawn on more recent longitudinal research from Australia which found that low paid, insecure jobs, characterised by a lack of control, were associated with poorer health than that found amongst those people who remained out of work. 

Getting a high quality job after being unemployed improved mental health by an average of 3 points, but getting a poor quality job was more detrimental to mental health than remaining unemployed, showing up as a loss of 5.6 points.

This is an important finding, particularly bearing in mind the conclusion of the DWP’s 2006 literature review that: “After leaving benefits, many claimants go into poorly paid or low quality jobs, and insecure, unstable or unsustained employment. Many go on to further periods of unemployment or sickness, and further spell(s) on the same or other social security benefits”.

Unfortunately, the tone of the rest of the paper and its proposals assume a straightforward unilinear relationship between being in paid employment and good health, as illustrated by what the DWP calls an ‘infographic’ on page 4 of the Green Paper.  This shows two circular relationships, good health and work on the one hand and worklessness and poor health on the other. 

The Green Paper would have been more accurate if it had concluded that, while paid employment can increase your standard of living, social interaction and self-esteem, it can also be bad for your health and can create or worsen illness or impairment. Whether work is good for your health will depend on your state of health and the nature of the job. As, according to the DWP’s own evidence, people leaving benefits often go into poor quality jobs, they are less likely than the average person to find that paid employment has a good impact on their health. 

Contention Number Two:  Withdrawal or reduction of income (or the threat of withdrawal) will increase entry into employment.

The payment of out of work benefits has always been conditional but since 2010 the conditions have increased and withdrawal or reduction of payment can now last from four weeks to three years.The assumption is that this threat of, or the actual experience of, withholding income will make it more likely that a person will take steps that increase entry into employment.

The recent decision to reduce, by almost £30pw, the money paid to people who have been assessed as being unfit to work but able to take on work related activity (the ESA Work related activity group) is based on the same assumption: the DWP claimed it will “remove the financial incentives that would otherwise discourage claimants from taking steps back to work”.

In an earlier blogpost I examined the evidence that DWP relied on to make this claim.  It’s worth reiterating that there is no evidence of a causal relationship between a reduction in benefit levels and an increase in employment amongst disabled and sick people.

There is, in fact, a more convincing case to be made that reducing or withdrawing income will make people less able to gain employment. An evaluation of the impact of benefit reduction found that the more benefit was removed the less likely they were to move into employment.  A study which carried out four ‘natural’ experiments in the US and in India concluded that poverty undermined people’s ability to think clearly, carry out tasks and to make good decisions (a conclusion which is perhaps obvious to anyone who has experienced the pressures that come with even short-term financial difficulties):

The poor must manage sporadic income, juggle expenses, and make difficult tradeoffs. Even when not actually making a financial decision, these preoccupations can be present and distracting. The human cognitive system has limited capacity. Preoccupations with pressing budgetary concerns leave fewer cognitive resources available to guide choice and action.

The widely disseminated conclusion from this study was that, because people living in poverty expend more of their mental capacity on managing with a low income, government programmes aimed at helping them should not impose what some called a ‘cognitive tax’ - such as complicated forms, frequent monitoring systems, onerous requirements to prove eligibility.  As the Behavioural Insights Team argue:

The worries involved in making ends meet every day already deplete [cognitive] bandwidth so government services aiming to tackle disadvantage – such as savings schemes, employment advice and parenting programmes – should be required to pass a cognitive load test to ensure these services do not make it harder for people on low incomes to make good decisions for themselves.

The Behavioural Insights Team is an organisation originally set up by the government (the ‘Nudge Unit’) and still partly owned by them. This study was carried out in partnership with the Cabinet Office.  We would normally expect their conclusions to be treated seriously but that does not appear to be the case in this instance.

Contention Number Three: ‘Employment support’ will reduce the numbers of people on long-term out of work benefits

The Green Paper indicates an intention to reduce the numbers of people in the ESA Support Group. These are people who have been assessed as having limited capability for employment and also limited capability for work-related activity - meaning that they are exempt from complying with requirements to take ‘steps back to work’.  Concern that there are ‘too many’ people claiming this type of benefit dates back to the 1990s when Invalidity Benefit was replaced by Incapacity Benefit.   A series of changes since then in the method and process of assessment have not had the desired effect of reducing numbers qualifying for long term sickness and disability benefit.

The Green Paper proposes yet another change in the assessment regime and an extension of ‘employment support’ to people who have been assessed as not able to either work or to engage in work-related activity.  Instead of one assessment (the Work Capability Assessment) there would be two: the WCA would assess financial entitlement and then everyone on ESA, whether in the Support Group or not, would be subject to a “separate process” which would decide whether “someone should engage with Jobcentre Plus or specialist programmes”.

People would be required to have continuing contact with a ‘Work Coach’ who: 

could have full discretion to tailor any employment support to each individual claimant. This approach would be truly responsive, allowing the work coach to adjust requirements and goals dependent on changes in a person’s condition or circumstances.

While Damien Green previously announced that those in the Support Group would not have to undergo repeated WCA assessment, this new system could potentially require repeated and continuing ‘discretionary’ assessment by a work coach as to what a person should be required to do.

So let’s look at whether there is any evidence that the ‘support’ to be offered by this new system is likely to increase employment amongst disabled people or people with long-term health conditions.

The first thing to point out is that the assumption underpinning the Green Paper’s proposals is that people who are unfortunate enough to experience ill health and/or disability and unemployment are not capable of - or are not to be trusted to - make decisions in their own best interests.  Instead it is the role of a State employee or contractor to do this. 

So the Paper proposes that “trained work coaches could have discretion to make case-by-case decisions about the type of employment support a person is able to engage with” (para 132).  

The second thing is that anyone entering this system gives up all right to privacy about personal information held on them by the “NHS, the adult social care system or through other benefit applications, such as from a Personal Independence Payment application” as the assessment for financial support (the current WCA) and the work coach would draw on these sources of information (para 135). 

A third point is that the employment support programmes have not in the past been very successful at helping people on long-term out of work sickness/disability benefits to find and retain paid employment.  Only 12.5% of ESA new claimants on the Work Programme get a job outcome within two years. The equivalent figure for people moving onto ESA from Incapacity Benefit is 4.7%.  Work Choice, the specialist programme aimed at disabled people has a higher rate of success but less than 1 in 5 of participants are on ESA with the majority being on Job Seekers Allowance, so the programme has not proved its effectiveness with people on ESA.

As the government has previously announced, the Work Programme and Work Choice are being discontinued and replaced with a new Work and Health Programme.  However, this will only have 20% of the funding previously invested in employment support.

The Green Paper also proposes that the:

earlier engagement between an individual and a work coach in Universal Credit will also serve as a gateway to a wider, integrated system of support offered by the Department for Work and Pensions and other agencies, such as the NHS and local authorities. (Para 84)

This “wider, integrated system of support’ is called Universal Support and is intended to “assist people with their financial and digital capacity throughout the life of their claim”.

Through Universal Support we are transforming the way Job centres work as part of their local communities to ensure they more effectively tackle the complex needs some people have and support them into sustainable employment. (Para 85)

Unfortunately, this transformation is not borne out by the DWP’s own evaluation of Universal Support in the trial areas.  The evaluation, published in July this year, concluded:

the results suggest that participation in USdl had no statistically significant impact on either digital or financial capability…..Overall, the estimated annualised cost of the eleven trials was just over £4 million. Staff costs made up £2.7 million of the total.

So £4million was spent with no resulting improvement in claimants’ ability to engage with the UC system or with managing their finances.

(Incidentally, the Green Paper also holds up the Troubled Families programme as ‘another example of an integrated approach’.  It’s surprising that they infer that this programme makes any difference as the evaluation published recently “was unable to find consistent evidence that the programme had any significant or systematic impact”)

It is unlikely therefore that there will be sufficient assistance available through the specialist employment support programme.  And Universal Support is unlikely to be of much assistance in terms of helping people to navigate the complexities of the system. So what will be offered to people in the Support Group as part of the ‘claimant commitment’?  The Green Paper does not spell this out explicitly but it would seem that the intention is that Work and Health coaches will decide what kind of health-related intervention someone needs.

How long before part of the ‘claimant commitment’ includes a requirement to participate in a ‘health intervention’ of some kind and sanctions are attached to non-compliance?

It isn’t really employment support that is on offer - rather we are on the road to a situation where people who are too ill or disabled to work are required to subject themselves to health interventions that an employee (or contractor) of the DWP decides is good for them.

In summary….

It’s important that responses to the Green Paper home in on what is actually being proposed, rather than merely respond to the questions posed by the DWP.  The proposed changes are merely the latest in a long line of attempts to reduce the numbers of people qualifying for long-term out of work sickness/disability benefits.  If the assumptions on which the proposals are based are not backed up by evidence then they will be unlikely to have any more impact on reducing the disability employment gap than their predecessors.

And finally….. 

Magical thinking refers to the false attribution of causal relationships. In the context of psychology it refers specifically to the belief that one’s thoughts by themselves can bring something about - or that thinking something is the same as doing it.

Not only does this Green Paper ascribe a fallacious unilinear causal relationship between work and health, but it replicates a common feature of government policy - the assumption that saying something will happen makes it happen.

This is the fourth time in my engagement with social policy that a government has complained about the number of people ‘languishing’ on long term out of work benefits.  The fourth time that proposals are made which will supposedly reduce these numbers.  Any bets on how soon we will see a fifth?

What we can learn from the Paralympics

In the run up to the Rio2016 Paralympics an issue emerged on social media which illustrates the fundamental problem with the way the state currently treats disabled people. 

Following the replacement of the Disability Living Allowance (DLA) with the farcically-named Personal Independence Payment (PIP), 500 people a week are having their Motability-leased vehicles or power chairs taken away from them. This is a consequence of the government tightening the criteria used to determine eligibility for the higher rate award of the mobility component of PIP (it is only if you qualify for the higher rate that you can exchange your PIP payment - plus a cash deposit - for leasing an adapted vehicle or a power chair)   

A number of disabled people heading off to compete in the Paralympics expressed their concern that - because of the tighter eligibility criteria - they might lose their ability to lease a vehicle suitable for their needs and essential to their lives and aspirations.  

And the response from some people?  The same as it was when a similar concern was expressed in 2012 - a doubting that someone, who is (as the Channel 4 Paralympic advert describes them) a ‘super-human’, could/should be eligible for disability benefits at all: “if you can run, jump and swim, then you can probably dress yourself and catch a bus”, as one person put it. Similar attitudes seem to be held by people carrying out PIP assessments: as one disabled athlete recounted: “He [the assessor] alluded to the fact someone like me – who can go wheelchair racing – shouldn’t get the same support as someone who can’t … It was like ‘you can do sport, you don’t need help’.”

This type of response is not just a case of ignorance (though it is that as well) it is also a reflection of quite complex social attitudes which have their roots in the current economic and political climate.  As such it isn’t a trivial issue but one which goes to the heart of what it means to be disabled in an advanced capitalist economy.

In terms of dominant social attitudes, to be disabled is to be un-able, to lack ability - as the Oxford English Dictionary says, to have “a physical or mental condition that limits a person's movements, senses, or activities”.  This is echoed in the state’s definition of disability in the context of current social policy. Assessments which measure physical and/or mental ‘incapacity’ are the gateway to recognition of the need for support in the form of either services or benefits.  

In recent years, political rhetoric and many media outlets have encouraged an extension of social prejudices, long held against ‘the poor’ and ‘the unemployed’, to disabled people.  Welfare reform has been accompanied by the encouragement of a mistrust of people’s own accounts of their experiences of their bodies and the disabling barriers they experience, focussing instead on individuals’ motivation and attitude.

This shift in social attitudes towards a much more punitive and blaming approach to disabled people has been driven by bi-partisan political support for a low tax economy, accompanied by a demand to bring down the numbers of people on long-term benefits.  The last Labour government introduced the Work Capability Assessment (WCA) and Employment and Support Allowance (ESA) with the explicit intention of reducing the numbers of people claiming long-term out-of-work sickness and disability benefits, and the Coalition and Conservative governments continued with that aim - and with the general message that many are not really ill or disabled.  In addition, motivated by the same desire to cut public expenditure and accompanied by similar messages of distrusting people’s own accounts of their experiences, the Coalition government replaced DLA with PIP, with the explicit intention of reducing the budget for this extra costs payment by 20%. 

Assessments for PIP and ESA are the gateway to being officially recognised as a disabled person.  In recent years, political and public debate has been dominated by the notion that it is only people who are the ‘most vulnerable’ who have a legitimate claim to support - and that these people can be identified by a computer-based assessment of functional limitations. Those who cannot prove their vulnerable dependency are stigmatised as scroungers. 

Paralympians pose a real challenge to this dichotomy: their status as ‘superhumans’, created by the industries that profit from their success, is incompatible with both the legitimate status of vulnerable dependency and with the stigmatised status of the scrounger.  Why would someone who has ‘overcome’ their limitations, who displays their physical ability at an international level of competition, be eligible for a cash payment intended to recognise vulnerability, inability and limitation? No wonder some people consider disabled athletes to be disqualified from assistance the entitlement to which is determined by an assessment process measuring functional inability and is associated with vulnerable dependency.

Paralympians thus expose the dilemma facing disabled people in the current political and economic context.  To do something well - whether it is as an athlete or anything else - is to ‘overcome’ your ‘disability’. ‘Overcoming’ is an individual achievement, put down to someone’s determination to succeed. In the process the support that a person might require is made invisible, such support becoming so invisible that the need for it can become delegitimised. Thus we have people questioning whether disabled athletes can really need a benefit intended to compensate for the additional costs that impairment brings.

The ‘superhumans’ narrative also makes invisible the very significant support that Paralympians have received from the funding and resources infrastructure which results in their achievements.  Their aspirations are made possible by the regressive tax which is the Big Lottery, the money being invested in the sporting infrastructure of coaches and other support roles, adaptations, equipment and so on.  Without these resources, however motivated and talented individual athletes may be, they are very unlikely to be able to reach the levels of international competition now on display in Rio.  As John Pring says, Paralympic medals are “an example of what disabled people can achieve if they are given the dedicated, high-quality, personalised support they need to contribute in their own way to society”.

Just think what would happen to the disability employment gap if the same approach of investing in support for people’s aspirations and abilities was taken to disabled people in general?  If instead of distrusting people’s accounts of their experiences, using assessments based on simplistic measures of functional limitations, the state worked together with disabled people to identify and address barriers to the achievement of their aspirations.

Just think what would happen to disabled people’s participation in and contribution to society if, using resources from a progressive tax system, we invested in accessible and affordable housing, in high quality support services, in equipment, expertise and other resources that enabled mobility, communication and advocacy?  If we invested in health (including mental health) and other services which made possible easy, early access to effective and personalised care?

Just think what would happen if, as well as celebrating the achievements of the Paralympian athletes, we took the lessons learnt from the investment in their aspirations and decided to invest our collective resources to work in partnership with all disabled people to achieve their aspirations.

As Penny Pepper says, turning Paralympians into superheroes is no help to disabled people.  But learning the lessons of what has been achieved for a few by investing in them and their aspirations could be of enormous help.  As Penny also says, the barriers to our participation, our wellbeing, our very existence can be removed.  It is a political choice, by politicians acting on behalf of us all, not to remove these barriers, not to invest in us. That is what disability campaigners have exposed this week and that is what must change. 

Something to celebrate: a story of campaigning and co-production in one London borough

For many years, disability campaigners have pointed out that the system of charging for daily living support (community care, or home care, charging) is effectively a tax on disability.  Apart from the general injustice, it particularly discriminates against those with the highest needs, as they will be more likely to be limited to an income just above poverty levels; it discriminates against people reliant on a pension income because this is taken into account for the purposes of charging whereas an income from wages is not; and it prevents people from building up savings which might be needed to pay for expensive equipment or adaptations

It is perhaps inevitable that charging for adult social care has become common practice, given increasing demand and insufficient funding from either general taxation or local council taxes, together with diminishing political support for a universalist approach to ‘welfare’. But one London borough has bucked the trend and in 2014 abolished this ‘tax on disability’.  

How did this come about?

It was the result of strong campaigning by a small group of local disabled people; the willingness of local politicians to learn about the impact of policies on people’s lives; and the election of people who not only made promises but then delivered on them. 

Hammersmith and Fulham Campaign Against the Cuts was formed in 2006, in response to a newly elected Conservative-led Council which - according to David Cameron - was a ‘model’ for the policies he would pursue in government. Though only a small group of disabled people, they made a big impact, launching a legal challenge to the imposition of community care charges which although unsuccessful delayed its introduction. 

By the local Council elections of 2014, HAFCAC had learnt how to get the voices of disabled people heard in context of local electioneering.  They asked all the Parties about their policies on disability issues, collated the responses and publicised them.  Voters very rarely get pre-election material about disabled people’s concerns so HAFCAC distributed leaflets outlining issues for disabled people.  They hired a minibus and took to the streets to talk to people about voting, setting up a market stall - “All this created a real buzz” says, Kevin Caulfield, Chair of HAFCAC “with some people saying things like ‘I wasn’t going to vote but you made me realise it’s not just about me’”. 

Steve Cowan had been Leader of the Labour opposition on Hammersmith and Fulham Council since 2006.  Like many Labour Party politicians and activists, he had, he says, understood “disability to be an issue of discrimination and rights” but recognition of the impact of social care policies on disabled people’s daily lives only came about through his contact with people who were living the impact of such policies.  

One of these was Debbie Domb, a member of HAFCAC, who Steve said “took it upon herself to educate me. She would have me round her flat - at this point I was Leader of the Opposition - and as far as she was concerned I was going to need to know a lot more stuff than I did.  And so she would talk to me about what was needed.”  Debbie and others talked to Steve about not only the unfair ‘tax on disability’ that charging represents but also the importance of the money from the Independent Living Fund which enabled people with high support needs to go about their daily lives.  The ILF was abolished in July 2015 and responsibility handed over the local authorities.  Many people fear their funding will be reduced and control over their lives will be diminished.

The Labour Party manifesto for the local elections in Hammersmith and Fulham in 2014 included the promises that, if elected, Labour would abolish home care charging.  

Labour won control of the Council, taking 11 seats from the Conservatives (giving them 28 seats to the Conservatives’ 20).  The new Council quickly announced that they would maintain the levels of support provided to people who were transferring from the Independent Living Fund. And, on December 3rd 2014 (the International Day of Disabled People) Steve Cowan announced the abolition of community care charging from April 2015.  As he says, this was an illustration of a different approach to the tightening of resources facing all local councils:

In opposition I watched as Hammersmith and Fulham Council took the easy option of cutting services or introducing new charges for people, often in desperate need of those services, while elsewhere they were wasting millions of pounds of public money. [Instead] we were able to pay for the abolition of home care charges by shutting down council magazines, removing lamp post vanity banners and shutting down other propaganda. 

The shift in priorities was encapsulated by Kevin Caulfield who welcomed the abolition of charging. saying:

We have campaigned hard for eight years against this unfair tax on disabled people just for having our needs met. Every other non-disabled HF resident would view it as an absolute violation of their human rights if they had to pay an invoice from the council before they could use the toilet, get washed and engage in day to day activities. We are over the moon to have a Council that now understands that. 

Hammersmith and Fulham Council is taking an approach to developing policy which opens them up to the impact of their decisions on people’s lives.  The pressing need to do things differently was illustrated immediately following the 2014 election when Councillors were faced with angry parents of disabled children, who had been let down by the recently commissioned school transport service. 

Steve Cowan told me

This had been privatised by the Conservatives and commissioned as a new service with Westminster and Kensington and Chelsea Councils.  It had gone live in April 2014 and we won control of the Council on 22 May 2014.  We were very quickly contacted by parents giving us examples of how that service is causing serious harm to their children – all of whom were disabled.

The response from senior officials was very disappointing..… In one early meeting on 11 June 2014, where officials had been unsuccessfully arguing these were no more than teething problems – one official lost his temper and claimed that this particular group of children had “had been treated like royalty for too long”. They were not on top of the issue which became extremely evident when we had a public hearing on the matter on 8 July 2014.

This is what happens when people making decisions about services have little or no contact with the people actually using the service.  This is why disabled people have argued for many years that policy should be co-produced with the people whose lives it affects. 

Unfortunately, many politicians and professionals use the word ‘co-production’ with little understanding - or real commitment - to actually co-producing policy and services with those whose lives are affected by policies and services.  

This widespread lack of understanding about what co-production actually is, is further promulgated by, for example Care Act guidance which says that it is “when an individual influences the support and services received, or when groups of people get together to influence the way that services are designed, commissioned and delivered”.

This is not co-production - it belongs more to the era of so-called ‘user involvement’, which is usually little more than consultation after a policy or service has been developed. Instead, as the Office for Disability Issues said in 2009: 

Co-production means working together to develop a policy or a service. We use the word to refer to two situations:  a group of people working in partnership with government and other public bodies to develop, implement and evaluate/review a policy which affects their lives;  groups of people, or individuals, working with service providers to design, deliver and evaluate/review the services they use.(1)

In other words, co-production means working together in partnership to jointly produce something - not asking people their opinions of something which has already been decided upon. 

Hammersmith and Fulham Council are now setting up a ‘Disabled People’s Commission’, with the aim of:

working in partnership with Disabled residents to create new and innovative ways of engaging with Disabled people by co-producing  policy design and decision-making, as well as service commissioning and delivery.

If they do manage to achieve this it will provide a model for how policy-making and service delivery could be done differently by local Councils, and inspiration to other local disability organisations who are often struggling to make an impact on local services at a time of major cuts in services. 

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(1) This definition was used in advice to those seeking to the deliver the Right To Control, an initiative of the last Labour government, which was discontinued by the Coalition government after it took office in 2010.