APART FROM ALL THE OTHER failures that government policy in response to Covid-19 is likely to be remembered for, its outcomes for social care service users are likely to endure as a national scandal. What we also have to hope is that they can serve as a unique opportunity to initiate progressive change.

Social care has been a case study of the short-termism of modern UK politics. For years across parties, successive governments relied on the mantra of integrating health and social care, without making any fundamental change.

Symbolically the ministry was renamed the Department for Health and Social Care. In reality, the two policies couldn’t be more different and accordingly more impossible to integrate successfully.

On one side we have the NHS, survivor of welfare state principles, still largely free at the point of delivery and paid for out of general taxation, despite all the privatising efforts to undermine it from within. On the other side, social care, a relic of poor law principles, with means and needs testing still central to its operation.

This ongoing mess, responsible for much suffering, doubtless many premature deaths and enormous organisational waste has long been headlined as a chronic crisis. However, Prime Minister Johnson has taken it to a new level. Given that the worst consequences of the virus mainly affect older and vulnerable people, we could guess from the start that good social care support would be at a premium. Even though we already knew this, there was no mention of improving social care in the spring budget. When late in the day emergency legislation to address Covid-19 was introduced, it actually restricted access to social care rather than improved it.

Prime Minister Johnson has signalled very clearly his commitment to the continuing separation of what are two inseparable state responsibilities. The story and the strategy are shocking in their cynicism and disregard for human life and human rights. Thus we see the encouraging of a clapping hour for NHS staff and ignoring the basic safety needs of those in social care.

Such service users and their carers have been left isolated, inadequately supported and not even included in the formal death lists from the virus at the time of writing. But the emerging headlines, even from Johnson’s captive press, still gave the game away. By mid-April it was admitted there had been outbreaks at more than 2,000 care homes. The CEO of Age UK accused the government of “airbrushing older people out” of the pandemic “as if they don’t matter”. The Labour Party called on the government to publish daily figures of deaths in care homes to highlight the true scale of the spread of Covid-19. And still no testing, an acute shortage of protective gear and ventilators, months not weeks after the outbreak was first evident.

Even Sky News, not exactly the crusading Manchester Guardian of the old days, has headlined this as “a scandal our grandchildren will ask about” and the Daily Mail calls out the “care homes catastrophe”. We can guess the suffering; we don’t even know how many are dying and how many staff may ultimately share the same unnecessary fate.

Meanwhile, without breaking ranks, the media have resorted to hagiography at the level the Romanian leader Ceausescu demanded. We have had daily bulletins about our brave leader’s health alongside death statistics in rising thousands among the rest of us which we can only link to his delays and obfuscations. Only that other beacon of neo-liberalism, Trump’s United States can match our death rate and, pro-rata for population, the UK is even worse.

 This pandemic was always going to be difficult, confusing and disturbing for those most at risk – for people with Alzheimers and for many mental health service users – with the possibility of damaging isolation for some disabled people and people with learning difficulties. But the inadequacy of social care, government incompetence and lack of leadership have resulted in something incalculably worse. It will be a long time probably before we know the scale of this and the indirect as well as direct casualties.

But Johnson’s preoccupation with himself, spin and perhaps ‘getting Brexit done’, must be our opportunity to press for the radical reform of social care that no major political party has so far had the courage to commit itself to. We must at last get the Labour Party on board to spearhead this.

In proposing longer term solutions the Reclaiming Our Futures Alliance (ROFA), an alliance of deaf and disabled people and our organisations in England, urge policy makers and politicians to adopt a much wider vision for a service. ROFA has been calling for a legal right to independent living delivered through a national independent living support service (NILSS) for the last three years, modelled on an expanded version of the Independent Living Fund which the government closed in 2015.

We agree with Andy Burnham, Manchester’s mayor, that this service should be modelled on the NHS, free at the point of need with the workforce on similar pay and conditions. However, social care and disability operate on a social, not medical model and disabled people have driven changes and innovations which must not be lost in the scramble to create a solution to the crisis of the middle classes losing their inheritance through a ‘dementia’ or ‘death’ tax. Therefore, it needs to sit alongside the NHS, organised nationally but delivered locally through new organisations, located in the public/not for profit sector, with staff on public sector terms and conditions of service.

Our vision tries to keep people out of residential institutions for as long as possible so it includes housing policy and the building of all new homes to lifetime accessibility standards, transport, employment, inclusion in education and the de-institutionalisation of the so-called assessment and treatment units (ATUs), responsible for so much abuse and deaths of people with autism and learning difficulties. What is missing in all the current discourse is the voice and agency of the users of social care services – disabled people of all ages. It is time government and the Labour Party stopped playing lip service to “Nothing About Us Without Us” and started to bring us into the centre of decision making.

The Labour Party now has the chance to break the social care deadlock that has blighted the lives of generations of older and disabled people for years. It has already taken the first crucial steps. Labour’s commitment to create a National Care Service underpinned by the principles of ethical care and independent living is a start.

But we must be clear what we mean by independent living. Its real meaning of enabling disabled people to live on equal terms with non-disabled people is now enshrined in the United Nations Convention on the Rights of Disabled People (UNCRPD) Article 19. But the term independent living has been degraded by successive UK governments. Labour has to make clear its commitment to the UN version as the driving force for its strategy and to co-produce policy and solutions with disabled people – ‘Nothing About Us Without Us’. The motion to establish a National Independent Living Support Service (NILSS) passed at last year’s conference is the way forward based on disabled people’s vision: https://www.rofa.org.uk/independent -living-for-the-future/.

A future Labour government unlike its predecessors will have to sign up to the spirit as well as the letter of the CRPD. To achieve this it will need to:

  • Break from past social care tradition and ensure its policy focus extends equally to disabled children and working-age disabled people as well as the older people who policymakers have traditionally restricted their focus to.

  • Bring social care into the public sector. This means effectively socialising the existing antiquated residential care which is a market dominated by avaricious and unaccountable financial organisations and interests.

  • Review the role of traditional big disability and carers’ charities preoccupied with their own institutional/business interests.

  • Look beyond local authorities as the main and natural home for the organisation of support services and provision. Local government will have a role to play in the generation and regulation of the social care ‘market’.

  • Close all residential institutions for disabled children, working-age adults and people with autism and learning difficulties and ensure inclusive alternatives.

  • Shift the emphasis away from residential care to comprehensive community-based support for older disabled people.

  • Have a clear and defined role for an independent and effective regulator. Currently the commissioning, assessment and charging for social care is outside the inspection remit of the failing Care Quality Commission (CQC).

  • Expand the role of disabled people’s (DPOs) and user-led organisations (ULOs) as support providers, advocates, welfare rights advisers and peer facilitators.

  • Grow new, less hierarchical delivery structures like user-led organisations, co-ops and not for-profit social enterprises.

Here lies a real vision and future for social care, transformed into a National Independent Living Support Service, providing high-quality services, employment and opportunities that won’t be dominated by austerity and the profit motive. NILSS will, at last, be as loved and valued as the NHS. It will be seen as an economic generator consistent with commitments to sustainability, rather than a drain on the public purse, as it frees service users and their loved ones to have the fullest, equal and active lives.


Mark Harrison is director of Social Action Solutions, and Senior Research Fellow in Social Action at the University of Suffolk.

Peter Beresford is co-chair of Shaping OurLives, the disabled people’s and service users’ organisation and network, and Professor of Citizen Participation at the University of Essex.

Mark Harrison and Peter Beresford review gains made in recent years

Finally there appears to be a breakthrough for co-production. Twenty years into the new century all the gains made in social theory in the latter part of the 20th century and the early years of this one are finally beginning to bear fruit. This is by no means universal but there are some clear examples emerging of meaningful involvement in policy, practice and user-led research to draw on that we can say are optimistic.

Notions of co-production have been around for more than a decade now. What started as a positive and optimistic alternative to the consultation culture with all its tokenism quickly ground to a halt due to austerity, particularly in health and social care. Co-production provides a new paradigm for developing health and social care. Research by the Social Care Institute for Excellence (SCIE), 2009, by Dr Catherine Needham and Sarah Carr illuminates the transformative nature of this approach

» Co-production is a potentially transforming way of thinking about power, resources, partnerships, risks and outcomes. It requires a shift in culture within statutory organisations – with professionals able and confident to share power and accept user expertise, leading to ‘no decisions about us without us’. Co-production can deliver service models which are preferred by the public, more cost effective and less wasteful.

» Co-production emphasises that people are not passive recipients of services and have assets and expertise which can help improve services.

» Co-production is a potentially transformative way of thinking about power, resources, partnerships, risks and outcomes, not an off-the-shelf model of service provision or a single magic solution.

» “To act as partners, both users and providers must be empowered”. Co-production means involving citizens in collaborative relationships with more empowered frontline staff who are able and confident to share power and accept user expertise.

This approach is important as it puts a shift in power relations right at the heart of the process. Sharing power with community members by politicians, policy-makers and practitioners goes against the grain. It also goes against much professional training and qualifications where students have to demonstrate their knowledge and expertise in doing things to, for and on behalf of people they are paid to work with. To shift to a culture that encourages sharing knowledge and power requires a radical, if not revolutionary, shift.

Progress tends to be uneven as we saw with the policy development in the Labour Party in the lead up to the last two general elections. There was good co-production in some areas like the development of the transformational Green New Deal, but in others, like disability and the policy on social care, it was dominated by the voices of the professionals and the sectional interests. The voice and engagement with disabled people and the users of services was ignored or drowned out.

Unfortunately, over a decade on, finding examples of meaningful co-production feels like looking for needles in haystacks. There is also an economic argument for co-production, as well as being the ‘right thing to do’. The importance of ‘upstream engagement’ is emphasised because if you don’t get it right at the beginning of the process then it is far more expensive to undo or remodel at a later stage. The example of the built environment is a case in point.

Retro-fitting building with ramps and replacing stairs and lifts are expensive and a waste of money. Road traffic calming measures like shared space have become the new fashion and many councils have spent huge sums of money creating schemes that are dangerous for disabled people, particularly blind people, some of which are now having to be undone or modified to make them safe and compliant with other legislation. If only they had talked with a blind person and tested it out with their guide dog before spending the money!

Here are a couple of examples which pass the co-production ‘litmus test’.

The Commission on Social Security: www.commissiononsocialsecurity.org represents a ground-breaking co-production initiative developing proposals for a better UK social security system. All the commissioners are people with lived experience and the proposed solutions have been developed by those with direct experience of the benefits system.

Following a call for ideas for a better benefits system which received over a thousand responses, the public are now being asked what they think about the ideas in a second wave of consultation. Ideas in the proposals include; establishing a guaranteed decent income so everyone has a secure, reasonable amount of money coming in; getting rid of the benefit cap; raising child benefit to £50 per child per week; ending zerohours contracts; and a social model approach to disability benefit.

Input has been invited from anyone interested in improving the benefits system: experts by experience, user-led groups and claimants, thinktanks and charities, policymakers and the general public. Following the public consultation, a White Paper with policy recommendations will be drawn up.

What’s distinctive about the process is that it puts centre stage the knowhow of people who understand what it is like to be on benefits. Respondents were asked eight questions, ranging from how to make Universal Credit better, to the ideal level of benefit payment, to what best to do about benefit sanctions. These suggestions were then reviewed by the commission which is now putting forward eight ideas it has identified for public consultation.

The second case study is from the London Borough of Hammersmith and Fulham (LBH&F). The groundwork for this initiative was forged on the picket line when disabled people and Labour opposition councillors stood together against the then Tory regime’s cuts to services. When Labour came to power, they engaged two disabled activists to lead the council’s co-production initiative. They also scrapped charges for social care at a time when other councils, including Labour ones, are increasing charges on disabled people for their social care.

For LBH&F, co-production is an approach where residents / citizens are working together in an active way to plan, design and review policies and services that affect their lives. It stems from the recognition that it is not possible for public sector organisations to use public money to deliver needed and sustainable support and services effectively without co-production. LBH&F is the first – and to date remains the only – borough in England to commit to a cross-council co-production strategy to ensure that disabled people take a lead in how local infrastructure, initiatives and local policies are developed.

Eight co-production recommendations for transforming public services came from the work of Hammersmith & Fulham Disabled People’s Commission, led by disabled residents. The LBH&F Co-production Implementation Group (HFCIG), which oversees the implementation of the recommendations, includes membership from disabled residents, councillors (including cabinet members) and senior staff – www.lbhf. gov.uk/councillors-and-democracy/ co-production.

There is also another interesting development in Greater Manchester where Andy Burnham’s mayor’s office has engaged the local disabled people’s organisation (DPO), the Greater Manchester Coalition of Disabled People (GMCDP), to convene and facilitate a panel of disabled people to co-produce policies and programmes with gmcdp. com/gm-mayor-panel which is worth following.

Sadly, the opportunities now coming the way of co-production should not hide from us the real threats that the genuine article still also faces. There can be no question that the Johnson government represents the most reactionary, incompetent and ideologically driven administration since the creation of the post-war welfare state. For an administration committed to the ‘small state’, ironically, its tentacles extend everywhere from weakening our public health defences to spurious questioning of the future of tanks in the British army.

This doesn’t mean we give up or assume the quest for truly equal and inclusive co-production is halted. But we have to be on constant guard against tokenism, co-option and phony partnerships. A recent online conference on the subject highlighted the complexities and ambiguities. As international participants contributing to an important and far-reaching discussion, our host, a mental health service survivor currently in a psychiatric facility, was repeatedly being told off for not getting on with eating her dinner, which was pointedly left outside her door by an irritated staff member. This was even though she had forewarned the NHS paid-for private service in advance that the virtual event was taking place.

Not surprisingly, experienced service users are increasingly cautious about the reality of co-production in these difficult times. Crucially if a really diverse range of service users are going to have a fair chance of being effectively involved in co-production on equal terms, then there needs to be a preparatory stage of support for their empowerment, otherwise only the most confident, assertive and skilled are likely to take the plunge.

Yes, we must be cautious and watch out for the bear traps lying in wait for us, but at the same time there are real pressures supporting rising interest in co-production, user involvement and user-led research. We need to see these as the public policy equivalent of the current revolution in electric cars and bicycles. It’s the way to go and we’ve just got to keep going to help everyone to make that shift! It’s not petro-chemical research that’s needed any more, but how we can work in flatter, more collaborative, equal ways to co-produce more sustainable futures.


Mark Harrison is director of Social Action Solutions and Senior Research Fellow in Social Action at the University of Suffolk.

Peter Beresford is co-chair of Shaping Our Lives, the disabled people’s and service users’ organisation and network, and Professor of Citizen Participation at the University of Essex.


Tory Cuts Kill

Right-wing populism vs. participatory democracy

Peter Beresford and Mark Harrison attempt to chart a way forward

We can expect the inquests about the 2019 UK general election result to go on for a long time yet. According to our personal preferences, we will find all sorts of explanations. Whatever these may be though, the bottom line is that a Conservative government has been re-elected made up of people and policies which have made life more rather than less difficult for most people over the last nine years.

What we also know is that the policies Labour offered, however positive they might seem to many of us and however much we might feel they were in most people’s interests, did not carry the day. Instead of rejecting years of Tory imposed cuts, millions, especially in the North and Midlands, turned to the Tories. The right-wing populism of Johnson carried more political weight than the progressive proposals of Labour.

Having won an election without apparently needing to bother about any of the key issues of our day (unless we see Brexit as one), it looks as though the new government can continue to sidestep most of them, for example, sustainability and the future of the planet; aid and the southern hemisphere, the marginalisation of groups like trans and disabled people, the future of employment, the health and support of an ageing population, etc.

But it would be wrong to confuse voters’ tacit support for such an approach with active allegiance to the Conservative Party. Increasingly in recent years people seem to vote against rather than for parties and politicians. A key issue in this election seems to be the sense that a lot of people have had enough of not having a voice, being ignored and powerless. Ironically that seems to have played best for the political right which since Thatcher’s time, beyond consumerist rhetoric, had increasingly limited the effective say of ordinary people in their daily lives.

Perhaps the real lesson to be learned by left of centre parties and their supporters, in the UK and beyond, is that we are going to have to do things differently. Only left democratisation is likely to counter right-wing populism. More prescriptions for “better policy”, however good or ‘right’ we think they are, certainly don’t seem able to.

The logic is that if we are to secure a better, different kind of politics, then people must begin to have a real sense of reconnection of politics with their lives and some real say in what happens to them. Instead of blaming the electorate, we have got to start changing politics, to make it something people understand, connect with and are encouraged to be part of. The big battle coming will be between right-wing populism and participatory democracy. Any progressive party must now begin to focus on this as the critical underpinning issue.

There are some key areas of social policy to focus on, but within these are some really difficult choices for the Labour Party. We know that a Johnson-led government is going to continue to radically reshape the local and national state along libertarian lines. The shrinking of the state means the continued drive to eradicate any form of welfare from the benefits system, as the Thomas Cook workforce found to its cost. As we have analysed before, Universal Credit (UC) is one of the main weapons in “making work pay” and reducing claimants to below poverty and starvation conditions as a weapon against workers trying to improve pay and conditions.

The knighting of Iain Duncan Smith demonstrates how important UC is to the Tories’ project to reshape the welfare state and how slavish and craven those in our movement are who tried to sell us the line that it was a good idea in principle. The battle to move the party from a position of “pause and fix” to “stop and scrap” was fought and won by our disabled members and Disabled People Against Cuts (DPAC). The battle over UC has only just begun but the challenge for Labour is to organise a social movement along the lines of the anti-Poll Tax rebellion which did for the hated tax and Thatcher. We need a leader who will lead this fight.

If the electorate is to regain trust that Labour can truly represent their interests then we have to walk the walk and not say one thing and do the opposite. In local government this means reassessing the approach advocated to date. The instruction from the leadership not to pass illegal budgets means we have Labour-led local authorities up and down the country carrying out Tory cuts on schools, children’s services, and adult social care and closing Sure Start children’s centres and youth clubs.

A credible path has to be developed that defends vital services from the Tory onslaught. The New Labour line that “our cuts are kinder than Tory ones” does not hold water, as we have seen in Scottish, northern and Midlands constituencies where the Blairite years were an almost seamless continuation of Thatcherism leading to voter cynicism and defections to nationalist and populist parties. The Stalinist inspired “progressive patriotism” is also a slogan devoid of meaning – let’s instead have a real fight to defend services and provision rather than appeasement and slavish obedience to Tory austerity.

While there was much to be commended in the manifesto, the policy on social care was neither transformational nor socialist. The commitment to provide free (excluding residential costs) care for over 65s was tame and reactionary. If implemented, this would not have met any tests of being progressive. It would also have resulted in conflict with the disability movement, progressive social work organisations and the UN as it was in flagrant breach of Article 19 of the Convention on the Rights of Disabled People (CRPD). It would have taken away important rights won by disabled people for choice and control over our care and support. Delivery through a local authority employed workforce for a ‘one size fits all’ service is a 20th century solution and completely inappropriate for today’s setting.

The radicalism of the Green New Deal and the diversity of approach was completely missing in the social care proposals which were more about solving a problem for the NHS than a personalised and bespoke response to ten years of savage cuts.

As the leadership contest gathers pace we will see all sorts of commitments to listen to the electorate and learn lessons. Our fear is that this will just be empty gestures and no real change will occur. Credibility will come through fighting alongside people and communities. Listening is key – but then acting on what is heard is even more important. This means changing the relationship with people in communities. Labour has dipped its toe into community organising and this is one of the ways forward – but it must be based on the principles of rights not charity, solidarity, mutuality and reciprocity. What matters to people in communities are the things that make a difference in their lives.

Unless there is a radical shift in policy then communities will increasingly be trying to defend community facilities which Labour councils are cutting or closing because they are committed to obeying Tory finance laws rather than legal requirements under the Care or Children and Families Acts. This conflict will just deepen the alienation of working-class voters and our party members.

Listening must not be a cynical exercise to win back votes without changing anything – the lessons of Scotland must be analysed and learned if we are not to risk a similar meltdown in England and Wales.

This is not about phoney participation like the Brexit vote but involvement where people have a real chance to be part of the process. It is not about one-off participatory initiatives. Instead, it must be about a new systemic bottom-up approach to involvement that:

Treats diversity with equality;
Works particularly to include those marginalised and excluded by traditional political processes;
Addresses issues of physical, communication and cultural access with equality;
Builds on and learns from existing movements including disabled people’s and service user movements;
Seeks to reconcile representative and participatory elements of the political process.
Challenges inequality and advances social justice.

This is, of course, a long-term project, but it needs to start immediately.

WHEN I WROTE ON UNIVERSAL CREDIT (UC) in the November 2017 issue of Labour Briefing with Julie Kemmy, the early effects of this radical change to benefits were only just beginning to be felt by claimants and disabled people. Twenty months on the picture is becoming clearer.

What has been revealed is that UC is at least as big a threat to those in work as it is to claimants. We can see the much larger and scarier implications of the restructuring of the economy as well as the benefits system under the Tories. Trade unions need to wise up quickly as it is their members who will be hardest hit as UC goes mainstream.

UC is an attack on the organised trade union movement as it is designed to control and sanction millions of workers and claimants. It is designed to facilitate low pay and insecure work and to leave people indebted and fearful. They will then be forced to work on zero-hours contracts for a minimum or below minimum wage for employers who are often the same companies avoiding paying their taxes.

Blair and Brown set up the system of working tax credits to support those in work but in low pay sectors. This was to ensure a sufficient level of income to support them and their families.

Effectively this was a subsidy on low wages and drove incomes and wage levels down. The minimum wage (now misnamed the National Living Wage) is exactly that, although unscrupulous employers always try to find ways to avoid paying even this amount. This is especially true in the gig economy and in sectors such as social care where travel time between appointments in the community is not paid.

Essentially UC is restructuring the labour market and forcing workers to be monitored and controlled by DWP work coaches. Job Centres are now acting as ‘pimps’ for the private sector by forcing people as part of their claimant commitment to work in companies which offer three hour a week contracts and don’t pay the minimum wage. They are also coercing people to become self-employed when they are working exclusively for one company who are determining when they work, for how long and where.

A claimant in Norwich outlines this process.

“After being made redundant I was put onto UC as a job seeker. I applied for over 170 jobs unsuccessfully. Eventually I was offered a job, and although it was a role different to anything I’d done before it was a job ‘I could do’ so I was obliged to take it under pain of sanction. The job was ‘self-employed’ and as such paid below the national minimum wage. My work coach said that this was ‘illegal’ yet still made undertaking it part of my claimant commitment, which I would have to comply with in order to continue to receive UC. “Because the work is so poorly paid, continuing to receive UC is essential in order for me to survive, yet to receive UC I have keep doing the job, bearing in mind it costs me over £100 a month in fares simply to get to it. If the ‘employer’ is acting illegally, as my work coach considered, then is not the DWP abetting a crime by compelling me to do the work? Now I am sure that the ‘employer’ – a large, well known UK firm – has probably checked all the loopholes to make sure that they are not acting illegally by ‘employing’ me as an agent on a self-employed basis even though I have to work at the company premises using the company’s equipment”.

So claimants are forced into self-employment, under threat of sanction, by DWP/UC staff. Self-employed UC claimants are now responsible for their own national insurance and tax and are not able to receive sick or holiday pay while being paid minimum or below minimum wage rates of pay. Workers on low pay and zero-hours, or near zero hours, contracts are being sucked into the UC vortex. Pay is so low in the DWP itself, the department responsible for designing and delivering UC, that the PCS union estimates that around 40% of DWP employees will have to claim UC and therefore potentially be subject to the sanctioning regime. You would then have the bizarre situation of DWP staff sanctioning colleagues in their own organisation.

The rollout of UC has been hit by the crisis in the government and the Tory Party. In October 2018, the then DWP secretary Esther McVey had to get a vote through Parliament to extend the rollout of UC across the country.

This was not going to be won as the surgeries of Tory MPs were full of UC claimants left destitute by the six week (sometimes ten weeks or longer) delay in receiving payments, the dysfunctional loans process and the extra-judicial, pernicious sanctioning processes. So the government pulled the vote but UC is still being rolled out by stealth.

The problem is that claimants are being transferred onto UC through ‘change of circumstances’. This means that people are losing their legacy benefits when their old claims and enhancements are cancelled and the UC claim is treated as a new claim. This leaves claimants thousands of pounds a year worse off.

McVey was forced to admit this could reach £2,400 a year for some people. However, this suits the Treasury as they are saving billions a year while claimants and their children are forced to use food banks. In this crisis they were forced to reduce the wait for money down to five weeks but food bank use continues to rise as the numbers pushed onto UC continues to suck in more new and existing claimants.

Latest DWP secretary Amber Rudd has been robust in defence of UC and is determined to proceed with the managed migration/rollout despite the overwhelming evidence from her own department and government statistics of the harm being caused. In a desperate attempt to detoxify the brand she has shamelessly bought a series of advertorials in the free Metro newspaper at a cost of over £250,000 to the taxpayer, spinning propaganda and lies about the positive effects of UC as journalism.

Disabled People Against Cuts (DPAC) have launched a campaign to dump the Metro DWP lies, with activists up and down the country binning thousands of copies every Wednesday when the advertorials appear.

Evidence has emerged of women being forced into prostitution as a result of the five week delay and low levels of payments for single parents. So-called survival sex was revealed by the Guardian and the Work and Pensions select committee is taking evidence on this.

Philip Alston, the UN Special Rapporteur on Extreme Poverty singled out UC as a major contributing factor in his report on the UK. He said that draconian sanctions and long payment delays are driving claimants into hardship, depression and despair; that the benefit was “fast falling into universal discredit”; and compared the Tories’ welfare policies to the creation of the 19th century workhouses. He said that unless austerity is ended the poorest in the UK faced lives that are “solitary, poor nasty, brutish and short”. He accused ministers of being in a state of denial about the impact of policies, including the rollout of UC, since 2010.

His report highlights the shocking rise in the use of food banks, and rough sleeping, falling life expectancy for some, the decimation of legal aid, the denial of benefits to severely disabled people and the impoverishment of single mothers and people in mental distress.

A landmark study published in November 2017 in the British Medical Journal (BMJ) Open estimated that 120,000 deaths were directly attributable to austerity cuts. The calculation was made that there were 45,000 more deaths in the first four years of austerity 2010-2014. The research calculated that this could rise to 200,000 by the end of 2020 if austerity is not reversed. The researchers from UCL and Cambridge University labelled this as “economic murder”.

UC is also violating women’s rights. According to evidence collected by the Trussell Trust the five week wait can increase the severe financial barriers women face when leaving abusive relationships. Over 50% of survivors said they couldn’t afford to leave as they had restricted access to funds. The single household payment puts women at further risk and vulnerability. Many survivors in women’s refuges face double the wait if they have escaped an abusive relationship without ID and documents needed to make the claim.

Latest figures show half of people receiving UC have had their payments cut by 20% by the government to repay a debt, including advances.

So what now? The Tories are immune to criticism and evidence as seen in their dismissal of the UN report. In my original article I questioned whether UC was May’s Poll Tax. I concluded that it would only be so if Labour and the trade unions mobilised a mass movement to defeat it. This has not happened.

While Corbyn and McDonnell have said a future Labour government would scrap UC, the shadow DWP minister Margaret Greenwood continues to sit on the fence. The TUC has passed a motion to stop and scrap UC, as has the PCS union. However, they have failed to mobilise any extra-parliamentary action, leaving protest at the level of exposing the horrors while failing to hold government to account.

Disabled People Against Cuts (DPAC) and Unite Community are organising actions to stop and scrap UC and we are building a national social movement in the Scrap UC Alliance (www.suca.org. uk), encouraging activists to set up local groups.

The next stage of the battle needs to move beyond moral outrage to effective direct action to stop the deaths and poverty crisis caused by austerity and UC

Universal Credit creates Poverty

FORTY YEARS AFTER THATCHER told us that the market and privatisation would make the consumer king and queen, her big lie is exposed for all to see. Instead of being a nation of home owners we are more and more at the mercy of an overpriced and inadequately regulated private rented sector. We see the loss of most social housing and an ever worsening problem of homelessness. Instead of having decently run public services and utilities we face the consequences of the race for profit – ever rising bills, lack of help for those most needing it and a neglected, wasteful infrastructure.

All this was sold on the promise that the market would give the public choice and power. It would put an end to the paternalism, dependency and inefficiency that Thatcher and her heirs told us that state services would always burden us with. Maybe the first founders of the welfare state in their desperate quest to put right the poverty, disease and insecurity of years of market dominance really did think they knew best. But ever since then there has been a determination on the part of the welfare state’s supporters to make it more democratic, accountable and inclusive of diversity.

Now the Labour Party has picked up the baton and published the pamphlet From Paternalism To Participation, highlighting the importance of such a participatory future and offering pioneering examples. This is a really helpful step forward, but it’s one thing to identify prefigurative instances of involvement at a time of continuing austerity and another to reshape policy and politics from the ground up.

There are some assumptions which need questioning. The foremost is that participation is a ‘good thing’. However, if the institution itself is dysfunctional or not fit for purpose then, no matter how good the involvement structures are, they won’t work in the interests of their communities or service users.

This can be seen at its sharpest in the Department for Work and Pensions (DWP) and the private companies which profit from the outsourced assessments processes. It can also be seen in local authorities, local enterprise partnerships (LEPs), housing associations and parts of the NHS. No amount of participation in Atos, Capita or Maximus is going to make them anything more than the profit driven enterprises they are.

Universal Credit creates Poverty

However, we also need to pass a critical eye over charities and public sector bodies and question if they are the best institutions to run services for the populations they currently serve.

Many of these institutions have their roots in 19th and 20th century paternalistic capitalist development and there is a need to replace them with new ones that are fit for the 21st century. If a transformative Labour government is going to be truly radical in the mold of the 1945 one, then, rather than breathing life into outdated organisations which are part of the problem, funding and new investment needs to be diverted into organisations which promote, rather than obstruct, meaningful and genuine community empowerment.

Some of these institutions can be reformed but others will need to be replaced with co-operatives, communityand service user-led organisations which are democratically run, represent the diversity of the populations they serve and are valued by their customers. If consumerist involvement has mainly meant an endless succession of market research and tokenistic consultation exercises branded as “tell us what you think” to disguise another round of “efficiency cuts” and self-help rhetoric, the evidence is now clear that real participation must mean people having a genuine chance to make change individually and collectively. Citizen participation must mean having a real, meaningful, say in shaping professional practice and services as they intervene in our lives, and playing an equal role in shaping politics, policy and provision.

Despite the hostile political environment for such participatory politics over the last decade, much has been achieved and many lessons learned, especially from the new social movements – notably the welfare service user movements like the disabled people’s and survivor movements, which have been making great strides. We now know enough to inform effective goals and a sustainable strategy for building a participatory democracy that alone will kill present right wing populist politics stone dead.

First, participation must include everyone, not just the ‘usual suspects’ – the white educated middle class men who have long dominated policy and political processes. It must move beyond the token, the tame and the pliable who provide decoration for business as usual and obstruct change.

Second, participation must be accessible. It must move on from traditional forms like public meetings and questionnaire completion so that it no longer privileges those with verbal and writing skills. There are innumerable people-friendly approaches that can make sure that often excluded voices like those of young and disabled people, homeless and poor people, are included on equal terms. Participation can be fun as well as effective.

We know how to do it. Do it, we must.

The goal should be co-production, meaning that people who’ve never had a say can feel supported and empowered – with help where needed – to make their equal contributions effectively on their own terms. But to do co-production effectively we must confront the issue of power. The Social Care Institute for Excellence (Scie) produced a helpful briefing paper in 2009 which shows how co-production is different from participation:

“Co-production is a potentially transformative way of thinking about power, resources, partnerships, risks and outcomes, not an off-the-shelf model of service provision or a single magic solution.

“To act as partners, both users and providers must be empowered. Co-production means involving citizens in collaborative relationships with more empowered frontline staff who are able and confident to share power and accept user expertise.”

As far back as 1992, the pioneering disability researcher and activist Mike Oliver addressed the power question in relation to research. He wrote that conventional research has tended to be imposed on participants, merely seeking to extract their knowledge and experience.

What’s really needed, he argued, is emancipatory research which is based on equalising the social relations of research so that researcher and researched are treated equally – and so that research empowers people and improves the world they live in, in line with their rights and ideas.

We also now have a large and growing body of evidence which highlights some of the most effective avenues for such participation enabling co-production – if it is to enable meaningful positive change. These include:

» Effective and equal involvement in research and knowledge production, valuing the lived experience, particularly of groups facing discrimination, to identify their priorities, proposals and solutions, instead of continuing to rely on self-identified ‘experts’.

» Structured user and carer involvement is essential in all human service training, learning and practice development. We have learned from social work professional education, where this is centrally funded and a requirement, how much this is valued and how much it can improve the culture, policy and practice of public services.

» There needs to be citizen participation at policy as well as individual service level. Such involvement needs to be built into its management and accountability.

» Ongoing citizen involvement in all processes of audit, outcome measurement and evaluation. Who knows better than service users how well services work and what they need to be doing? Can we honestly imagine that disasters like the scandal at the Mid-Staffs hospital and in private provision for people with learning difficulties would ever have happened if such participatory processes of quality measurement were in place, or whistleblowers had a real say and protection?

» The political shift to the right and the introduction of the market and its procedures over the last 40 years has been associated with increased bureaucratisation, managerialism, bullying and reduced worker rights. Non-hierarchical, democratising structures like co-operatives, based on collaborative and collective working, offer valuable democratising alternatives. They also highlight the importance of empowering service workers as well as service users for truly participatory policy.

» Finally, we need to invest in and develop the network of user led organisations (ULOs) and disabled people’s organisations (DPOs) needed to ensure that some of our most marginalised groups have opportunities for selfempowerment and have equal voice in more participatory arrangements. Many traditional charities have lost their way and largely become an extension of government and market. Organisations controlled by those they are intended to benefit and give voice to must be a priority for support from a future Labour administration, committed to participatory, sustainable and equalising politics and policy.

SCIE Research briefing 31: Co-production: an emerging evidence base for adult social care transformation. By Dr Catherine Needham, Queen Mary University of London and Sarah Carr, Social Care Institute for Excellence. Published March 2009.

Disability, Handicap & Society Volume 7, 1992 – Issue 2 Changing the Social Relations of Research Production? Mike Oliver.

Mark Harrison is director of Social Action Solutions, and Senior Research Fellow in Social Action at the University of Suffolk.

Peter Beresford is co-chair of Shaping OurLives, the disabled people’s and service users’ organisation and network, and Professor of Citizen Participation at the University of Essex.

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When the chair of the UN disability committee described what has happened to disabled people in the UK as a “human catastrophe” the world was shocked.  Unfortunately our Government, who are responsible for creating this situation, characteristically denied everything and went on the attack saying they are world leaders in disability.  So what has led us to this situation?

The roots of the problem lie in the last New Labour administration.  When elected in 1998 the Blair Government established a disability unit at the heart of Government to address the institutional barriers that prevented disabled people leading equal lives with their non-disabled peers.  This was a positive and progressive move to put disability policy high up the political agenda.  In 2005 the government strategy; Improving the Life Chances for Disabled People was launched with a clear implementation plan.  However by the time the UN had developed the Convention on the Rights of Disabled People (CRPD) with and by disabled people in 2006 the New Labour administration had veered to the right and adopted the US neo-liberal model of welfare to work programmes.  Blair, Brown and co, schooled in and admirers of Chicago school economics privatised welfare to work assessments and programmes.  In their last term in power they phased out Incapacity Benefit, replacing it with Employment Support Allowance (ESA).  The assessments were outsourced to foreign owned, private companies, Atos and now Maximus.  Work capability assessments (WCA) became the gateway to out of work sickness/disability benefits.  WCA has proved totally unfit for purpose.  Under the Coalition and subsequent Tory administrations the situation for disabled people has gone from bad to worse.

The situation got a whole lot worse when the Coalition Government was formed in 2010 and unleashed an austerity programme which targeted disabled people for the harshest of treatment.  Despite signing and ratifying the CRPD in 2009 the Government set its course to dismantle the rights based approach based on the social model of disability as set out in the CRPD.  Instead of adopting an approach to progressively implement improvements by dismantling the barriers which exclude they set a course to undermine and dismantle rights won over the previous four decades.  Many of the cuts affected disabled people disproportionately to the rest of the population.  These included the Bedroom Tax, scrapping Disability Living Allowance (DLA) and replacing it with Personal Independence Payments (PIP), cuts to adult social care and children’s services, closing the Independent Living Fund (ILF), cuts to mental health services, benefit sanctions, cuts to ESA, targets for private providers to restrict/fail PIP and WCA claimants.

Disabled People’s Organisations (DPOs) opposed these cuts and changes and called on the Government to carry out a cumulative impact assessment under the Equality Act.  This they refused to do and proceeded on their course.

The wider political agenda of successive Government’s from 1979 onwards was to accelerate the redistribution of wealth from the bottom upwards by undermining, privatising and ultimately destroying large parts of the welfare state. To justify their targeting of disabled people the Tory led Coalition Government unleashed a pernicious propaganda campaign through the popular media.  To achieve their ‘Poor Law’ goals they had to recast the public’s view of disabled people from the deserving to the undeserving poor.  In the wake of the Paralympics where disability and disabled people were cast in a positive light with huge public support, they had to change public perception.  What was unleashed was a torrent of stories of disabled people as benefit scroungers.  The political discourse was that we had become a drain on society, a luxury in austere times we could no longer afford.  Government’s own figures show that disability benefits have the lowest levels of fraud but if you read the Daily Mail, The Sun, The Daily Express or The Telegraph you would perceive the opposite.

In a chilling warning to the UK Government to change course the Chair of the UN Disability Committee Theresia Degener said disabled people could be at risk of violence and even “killings and euthanasia”, because of their portrayal by the UK Government and media as “parasites” who live on benefits.

It felt like disabled people were being treated in the same way as the miners were by the Thatcher Government in the 19984/85 miners’ strike.  It felt like we had become the ‘enemy within’ and the accompanying rise in hate crime against us showed how successful their propaganda campaign was.  The Tories and their Lib Dem lackeys couldn’t have got away with the unrelenting attacks on our rights without this negative briefing of the right wing media.

What they didn’t expect was the resistance from a disability community who won their rights through struggle and direct action.  Disabled People Against Cuts (DPAC) was formed in 2010 to oppose austerity and embarked on a campaign of direct action, legal actions and protest.  One of the key actions taken by DPAC was to report the UK Government to the UN using the Optional Protocol of the CRPD.  Having exhausted all options domestically to get the Coalition to change course DPAC presented powerful evidence to the UN of human rights abuses, disproportionate treatment and rising deaths and suicides as a direct result of austerity policies. The UN took this evidence seriously and launched an inquiry.  This was a very thorough process which concluded that:

“…there is reliable evidence that the threshold of grave or systematic violations of the rights of persons with disabilities has been met in the State party.”

The UK Government is the only Government in the world to be subject to an inquiry under the CRPD. Characteristically the Tories dismissed the UN findings.

This year the UK Government has undergone an examination of its progress in implementing the Convention.  An alliance of DPOs from across the UK produced a civil society Shadow Report which again evidenced widespread violations of our human rights.   The alliance told the UN committee that a range of government policies – many arising from the austerity agenda – place it in breach of the convention. These shortcomings are aggravated by the failure of other public sector bodies such as local authorities and NHS organisations to deliver the support and safeguards set out in the convention.

Among the issues highlighted in the UK DPOs’ submission were:

  • The poor supply of accessible housing
  • A rise in the number of children educated in special schools
  • Cuts in health and social care services that support people to live independently
  • The growing use of compulsory detention and forced treatment powers contained in mental health legislation that are incompatible with the UN convention
  • Plans to cap funding for support that allows disabled people to work – possibly forcing many to give up satisfying and worthwhile jobs
  • Concerns about the level of hate speech and hate crime
  • A tendency by public bodies to focus on processes rather than meaningful outcomes when fulfilling their legal duty to eliminate discrimination and promote equality
  • Discrimination in accessing educational, employment and social opportunities

Again the UN found widespread breaches of the Convention.  The disability committee told the UK government to make more than 80 improvements to the ways its laws and policies affect disabled people’s human rights.

In its “concluding observations” on the progress the UK has made the committee raised concerns and made recommendations on all but three of the 33 treaty articles it has breached.  This is the highest number of recommendations it has ever produced for a country undergoing the review process.

So where do we go from here?  Disabled people need a complete change of approach from Government. Nobody involved in the disability rights movement is under any illusions that things will improve whilst we have a Tory Government.  Indeed they have signalled their intent to carry on regardless by appointing the hated Esther McVey (previously Minister AGAINST Disabled People) as Minister for Work and Pensions.

Disability activists have the utmost respect for Jeremy Corbyn and, in particular, John McDonnell who has supported every DPAC direct action over the last 8 years.  The disability roadshow led by Debbie Abrahams and production of the disability manifesto during last year’s election campaign was a step forward.  We welcome the commitment made by McDonnell at the recent National Disabled People’s Summit that disabled people would “go into government just as much as we do when that election comes”.

He said: “You can also rest assured that when we go into government, whenever this government falls, it will be you that will be determining our policies, it will be you that will be involved in implementing them, because we believe that principle for disabled people of ‘nothing about us without us’.”

McDonnell made a similar pledge in 2016, when he promised that organisations like Disabled People Against Cuts (DPAC) would be “at the heart of government, sitting alongside ministers and others, advising them on how to implement… policies”.

Bring it on!  Let’s not wait until the election, we need this work to start now! This is the only way forward to stop this human catastrophe from escalating further and spiralling out of control.










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Mark Harrison and Julie Kemmy, both of whom work for Equal Lives, a user-led disabled people’s organisation (DPO) supporting people who face disabling barriers in Norfolk and Suffolk, explain the crisis facing Universal Credit


Universal Credit (UC) is potentially May’s Poll Tax. It could be her Thatcher moment. This pernicious assault on the rights of UK citizens to welfare benefits has, during its pilot phases, caused huge poverty, rent arrears and hunger for claimants, their children and families. The people affected have to rely on food banks and go into debt just to survive while waiting for their rightful benefit. This affects poor and disabled people who are being deliberately made vulnerable by this ideologically driven assault.

The groundswell of opposition is growing rapidly in the country at large and within Parliament. The cross-party DWP select committee has called for a halt to the roll out. The introduction of UC in North Kensington has been postponed. The potential for conflict, not seen since the Poll Tax and inner city uprisings, in the Grenfell area has caused a political retreat. However at Tory Party conference the DWP Minister David Gauke confirmed that UC will continue to be rolled out without any pause or reform.

Where does it come from? In 2003, Iain Duncan Smith said: “I want to be the party for the poor.” He spoke at a 2005 Labour Party conference fringe meeting, saying Labour’s definition of poverty was too limited: it is “not just about a lack of basics but a lack of sufficient resources to participate in the life of the community”. After losing the party leadership he founded the Centre for Social Justice, which published reports on poverty and welfare reform. However when he became Work and Pensions Secretary in 2010 he reverted to Tory type. He announced the plan for UC at the Conservative conference in the same year.

The philosophy that drives UC is to make work pay (to allow people to keep a bit more money if they do some work), and to make the benefits system mirror the world of work for most people  – so you get one monthly payment, from which everything, including rent, has to be paid. That way you can easily move into work; you have already learned how to manage your money. Every time someone has a change in income, UC can adjust the payments made within the next month – unlike the yearly assessments made with tax credits. It has been designed to be claimed and managed online, with all communication with a work coach taking place through an online journal and ‘to do’ list, which requires use of a PIN number. The insistence on using a digital process is difficult in rural areas, and if you can’t afford phone credit, have no broadband or access to a computer, and have no money to travel anywhere. For disabled people who can’t learn how to use a computer or remember a PIN number, the process is even more of a barrier.

The design looks good on paper for roughly 50-60% of claimants who can learn (with help) to budget their money, and will try to take on some work. IDS’s grand idea was that people would keep 65% of all extra money they earned (65p in every pound), and the government would take 35% of it. This would have been a serious incentive for anyone on benefits to work, and would have lifted many people out of what was known as the ‘benefits trap’, where it was hard to leave the benefits system as it could leave you worse off. Osborne insisted that these sums should be turned on their head, so the actual rule ended up that people only kept an extra 35p in every pound they earned, and the government took 65p.  Last year they made a big fuss about increasing this, so that people now get to keep 37p, and the government only takes 63p. So yes, it does make work pay, but not by very much.

It’s not so good for the 30-40% of people who cannot manage the demands of the process, and can’t manage to budget their income over a monthly period. At the moment they don’t always cope with fortnightly payments, but at least their rent is taken care of because it is paid direct to the landlord. UC replaces five means-tested benefits/tax credits for working age claimants, which was supposed to lead to a simpler system of benefit rules. But people’s lives are very complex – and they don’t always fit easily within so-called simple rules.

By far the biggest general complaints about UC are:

  • the time it takes to make a claim (often due to problems in verifying the claimant’s identity, setting up a suitable bank account and providing evidence of housing costs, which have to be correct to the penny), and
  • the long delays involved in getting benefit payments, at least six weeks even when everything works well.

Some of the loudest cries about delays have been from local authorities, housing associations and private landlords, who are finding that rent isn’t paid on time. Some housing associations have been issuing automatic notices to their tenants, telling them that if they become a UC claimant they must have two months’ credit on their rent account or they will face eviction proceedings. The delays have also caused a big increase in claimant debt – some of which involve payday loans at extortionate rates of interest. More recently, food banks in rollout areas have reported struggling to meet demand since UC was introduced.

The all-party Work & Pensions Select Committee (W&PC) has been hearing evidence about all of the problems caused by UC since April 2017. It is now considering whether the rollout of UC should be halted because of the problems caused by delays in people getting their benefit payments, and the likelihood that this will be made worse if the DWP continues with the planned accelerated national rollout from October 2017.

On 15th September the DWP released UC statistics showing that 77% of people are getting their payments on time (i.e. after a wait of 6 weeks).  Frank Field, Chair of the W&PC, said “77% on time may look good on an exam paper or from an office on Whitehall but even those payments mean a wait of six weeks for money for food and housing, and nearly one in four households are waiting even longer. Everything I have seen so far …. points to fundamental flaws in the operation of UC which must be resolved before the full service rollout proceeds. As things stand, the government is on a Christmas collision course which will leave families destitute.”

At the Conservative Party Conference David Gauke said the UC rollout will continue as planned.  He said “people needed to be more aware that they could claim emergency advance payments instead of waiting for six weeks….almost half of all new claimants were now asking for payments in advance because they were unable to wait six weeks, up from just under 40% in April.”

There may have been an increase in uptake of advance payments (which are a loan against future benefit income), but they are the equivalent of 50% of what you expect to get in the future and have to be paid back over a six month period.  If you have no money, and you are given only 50% of what the government says you need to survive for the month (which includes your rent), many people are forced into a situation of not paying their rent so that they can feed their family. It can cause serious problems with rent arrears and threats of homelessness. Repayment rates are considerable, causing extended periods of hardship.

Disabled people face additional problems:

  • They get paid less money than on previous benefits – the Enhanced and Severe Disability Premiums available to some people on ESA have been removed.
  • They have to jump through more unnecessary hoops – you can only get a disability addition to your UC payment if you go through a Work Capability Assessment, which assesses whether you are fit for work. If you have already been assessed for Personal Independence Payment, that doesn’t count.  If you are also a carer, you cannot get both a carer addition and a disability addition – you can only get one of them.

In response to a torrent of complaints from advice services over the last few years, the DWP have tweaked around the edges, appointing people in Jobcentres to help vulnerable customers, but they expect the Third Sector to fulfil all the other support needs of claimants at a time of cuts in funding which have decimated services. Landlords have been told to make adjustments to allow for the delay in first rent payments. Some local authorities are being creative: Norwich City Council is looking to see whether it can set up rent agreements that specify the date that a Direct Debt has to be made for UC, and will only classify someone as being in arrears if the DD bounces – the only way to start someone off on UC without automatic arrears on their rent account when they transfer from Housing Benefit to UC.

The local test areas of Great Yarmouth and Lowestoft have experienced substantial difficulties – one local organisation has reported a 70% increase of referrals being made to help avoid evictions. Frontline staff in the Jobcentre are expected to learn on the job and don’t know answers to simple questions. They are treating extremely vulnerable people as guinea-pigs. A final nail in the coffin for anyone who misses an appointment or doesn’t do every task that their work coach has set them, is that they will be sanctioned – and potentially lose a large chunk of their money anyway.

So how can this be defeated? The government is weak. The labour and trade union movement needs to mobilise and make this May’s Poll Tax. UC can be defeated if a grassroots social movement can be created in opposition to this attack on the poorest and most vulnerable in our society. The fact that the government has had to cancel implementation in the Grenfell area shows its weakness. The opportunity to defeat this is now, in the run up to Christmas, when thousands of families are going to be left without food and money.

It has to become a key part of Labour’s campaign to elect a Corbyn-led government for the many not the few. However, the people affected cannot wait another four years. A national campaign rolled out locally, mobilising the 600,000 party members, both old and new, can sweep away UC and this weak and wounded government in the process.

Download word version by following the link below:

Universal Credit final draft 4

Ind Liv art final


A RIGHT TO INDEPENDENT LIVING and a universal national independent living service paid for from direct taxation and free at the point of delivery, alongside the NHS, is the only way to solve the social care catastrophe that faces people of all ages in England and Wales.

The government has no credible proposals to offer following the dementia tax debacle during the election campaign. The long awaited Green Paper on social care has been delayed   again   until next May. The panel of expert advisers appointed by government includes no disabled people or disabled people’s user-led organisations in open defiance of the UN disability committee and the Convention on the Rights of Persons with Disabilities. Meanwhile local authorities (LAs) who are responsible for delivering social care face hundreds of £millions more cuts to their budgets over the next four years. This is on top of the near 50% cut already made since 2010. New research from the University of Oxford has linked government cuts in adult social care and health spending to nearly 120,000 ‘excess’ deaths in England since 2010. Most of the deaths were among the over-60s and care home residents.

The situation is so bad LAs are now putting poor people’s personal contributions up so high that they are giving up their social care because they can’t afford it. So, we have the dangerous situation where people who have been assessed as needing care under the mis-named Care Act are losing it because it is too expensive. They are having to make appalling choices like: do I eat and pay my rent, or do I give up my care and independence? How can this be justified in a 21st century advanced western society with any claim to being civilised?

This is happening in Labour-controlled authorities as well as Tory ones. They are choosing to obey Tory austerity policy and financial legislation over their legal duties to disabled and older people under the Care Act. The political choice for elected councillors in austerity Britain in 2017 is whether to break the law. At present the penalties for not meeting legal duties under social care legislation are non-existent while for passing ‘illegal budgets’ they are high.

So LAs pass balanced budgets which result in disabled people becoming prisoners in their own homes, being told to wear nappies overnight because night care is too expensive, or going for days without human contact and ending up in hospital or dying.

We currently have a social care system based on the Poor Law principles of means and needs testing. The bottom line trumps everything. As council budgets are cut, so needs are no longer recognised or met. It is currently estimated that about one million people with social care needs don’t get any support.

Disabled people of all ages are in the process of designing a new vision based on rights and the UN Convention on the Rights of Persons with Disabilities (CRPD). We, the users of social care, are planning a service that will be led by us, not service providers whose main focus has become to meet budget targets (cuts) and ration the care based on neo-liberal ideology – not rights or need. Personalisation policy is dead. The Care Act is as useful as a wet paper bag.

Of an ageing and increasingly disabled population, with a complex mix of health, social care and poverty issues?

We start with the notion that we are disabled not by our impairments or long term health conditions, but by the barriers created in society that prevent us leading full and equal independent lives. This is called the social model of disability.  We are committed   to an inclusive definition of disabled people that includes people experiencing distress, with learning difficulties, long term and life-limiting conditions as well as physical and sensory impairments.

It also recognises the rights and interests of disabled children and disabled parents. From this follows the philosophy of independent living, based not on compensating for people’s ‘dependence’ but instead on making it possible for disabled people to live lives as equal as possible to non-disabled people.

Increasingly the biggest barrier is the rationed, privatised and failing social care system which is being starved of funds. We start from our lived experience – we know what works best for us.

So we are proposing to co-create a new universal right to independent living, enshrined in law and delivered through a new national independent living service managed by central government, led by disabled people, but delivered locally. This local service will be shaped and delivered by user-led disabled people’s organisations, co-operatives and social

enterprises. It will be for need not profit and will not be means tested. It will be independent of, but sit alongside, the NHS and will be funded from direct taxation. There is a much bigger job to do in helping the NHS move to adopting a social model of disability,  distress and ageing. It will also demand an end to current discriminatory and cruel approaches to ‘welfare reform’ and instead a new independent living based approach.

It will be about independent living in the broadest sense, not just social care and health. It will therefore need to  be located in a cross-government body which can oversee implementation plans, whether it be in transport, education, housing, or social security. This will ensure that independent living is mainstreamed in  every  area of activity, not just ghettoised in the DWP as the Office for Disability Issues is at the moment.

The social care element will need to have its own identity in a national independent living service. This will build on and learn the lessons from the

Independent Living Fund, closed by the coalition government in 2015. It will also learn from the experiences of user-led disabled people’s organisations (DPOs), user-led social enterprises and co-ops which have innovated and developed exciting models of self-organised and self-directed care through personal budgets and peer support. It will work with non-disabled allies who share the critique of the existing system and who work to the social models of disability and distress.

It’s also time we stopped thinking of supporting people to live independent lives as a ‘burden’ and instead as a wealth creator. This was the basis on which the NHS  was  created and   it has  been  shown to  work,  improving the nation’s health, well-being and productivity. We know that a penny- pinching approach to social care funding has disastrously perverse results: it undermines policies for prevention, leaving people’s health and wellbeing to deteriorate at even greater cost to the exchequer (even if we discount the costs to human happiness). We are also seeing its wasteful effects on the NHS, on accident and emergency departments and in so-called bed blocking.

Instead we can see social care as a social and economic generator. Rather than treat its 1.5 million workforce as a marginal pool of low grade, low skilled and low paid workers, we can begin to grow it as jewel in the service industry crown. Such support work could take its place as a source of valued jobs, skills and opportunities. Such employment would create wealth directly as well as indirectly, by providing support to enable people to maximise the quality of their lives and contribution to their communities.

Reconceiving social care in this way – with the primary concern being people’s wellbeing and independent living – also offers the prospect of an economy that is no longer reliant on jobs which robots will be able to do in the future or based on consumerist growth, with all the environmental and social problems these bring in its wake. It would take account of changing demographics and our increasing requirements for support during life’s course. Supporting, maintaining and improving people’s wellbeing would become a central aim of economic activity. Such a needs-based and person-centred approach would value us equally and be concerned with our needs whatever our role – worker, service user or citizen. It would offer the prospect of a truly sustainable and rights- based economy and society.

These early ideas are being developed in conversations initiated by Disabled People Against Cuts (DPAC) and the DPOs in the Reclaiming Our Futures Alliance (ROFA), including Shaping Our Lives. Our demand is that going forward, the dual principles of the disability movement are applied – Nothing About Us, Without

Us and Professionals On Tap, Not On Top!

» Peter Beresford is co-chair of Shaping

Our Lives, the disabled people’s and service users’ organisation and network, and Professor of Citizen Participation at the

University of Essex.


» Mark Harrison is CEO of Equal Lives,

a user-led disabled people’s organisation in the East of England, and senior research fellow of Social Action at the University

of Suffolk.




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Jeremy Corbyn has swept to victory in the Labour leadership election by a huge movement for social change. Since his election victory over 65,000 people have joined the Labour Party. It is essential this hunger for change is allowed to express itself and is organised to deliver an election victory in 2020 which can truly transform our society to one which delivers for the majority and not the few.

When I heard Jeremy speak at the Burston School Strike rally, a week before his landslide victory, he put building a social movement to carry forward his vision at the centre of his speech.

The Corbyn victory has come under attack from the right within the Labour Party, the media and the traditional enemies of democratic socialism.   The old guard within the Labour Party are standing over the Blaireite Humpty Dumpty with their rule book in one hand and a tube of glue in the other. What they are not doing is trying to activate and organise the new membership and supporters who have been attracted to the Corbyn vision of how things can be different and change.   There is also an issue where New Labour are in control or leading coalitions within local councils. Part of the disaffection of Labour supporters is due to their collaboration with the Tories and Coalition Government, imposing austerity cuts on poor and disabled people. People don’t understand why you vote Labour and you get the Bedroom Tax, cuts to children’s services and adult social care, closing youth services and not building council houses. Their ‘new realist’ policies need to be killed off and the ‘dented shield’ philosophy buried once and for all.

We have also seen veiled and not so veiled threats from the establishment to move against this movement for social democratic change, stirring memories of the Allende Government in Chile.

It is for these reasons that Corbyn needs to build a sustainable and broad based mass social movement to carry through what has been started. To allow this emerging energy and support to wither would be a huge political mistake and a crime as it would allow the forces against social transformation both within and outside the Labour Party to regain the ascendency.

To build a truly sustainable social movement, cannot be done solely by the existing Labour Party machine. It is important the Party galvanises the new and returning membership to kill off the New Labour project once and for all and re-establish the links with progressive forces in the wider community and the Trade Unions. To build a social movement that can reach out and engage young people, ethnic minorities, the poor, oppressed and marginalised requires a complimentary but different approach.

The challenge is twofold. Firstly it is to activate the new membership and supporters, alongside existing members, so they can truly contribute to informing policy development and can also organise in their communities on the issues that matter to them. This will build a powerful political force to challenge the Tory Government on the privatisation of the NHS, schools, public services, housing, poverty and austerity. It can be proactive in campaigning for the environment, social housing, and a future for our young people, for refugees and migrants, against sexual violence and racism. Secondly it needs to turn out to the communities that are excluded from the political process. These are the sections of the population who were abandoned through the Thatcher, Major, Blair and Brown years and hammered by the Coalition and Tory Governments. Young people, ethnic minorities in inner city areas, white working class communities on public housing estates and disabled people, their families and carers have all been abandoned and vilified by successive governments. They need to be won back to the principles and cause of equality, social justice, peace and human rights.

To build a social movement it will need a clear set of ideas, principles and methodology to develop and shape it.

Social Action is an approach that embraces this optimism and captures the possibilities for social change. It is a powerful tool for social change because it facilitates people to empower themselves and take action to address common issues, problems and concerns. Social Action has been influenced by social movements and people taking action against injustice across the globe. It draws its ideas and methodology from Marx, Chomsky, Freire, Biko, Allinsky, Klein and the feminist, black liberation, LGBT, disability movements and the Venezuelan Bolivarian Circles. It is inspired by the power and energy generated by people taking collective action on things they feel strongly about to achieve progress and social change. The powerful critiques of injustice and oppression offered by self-directed groups and user led organisations has helped us understand, articulate and develop our principles and methodologies. These are outlined in the Social Action website www.socialaction.info where all the resource materials are free to access.


There is a real connection however between the situation now and the early 1980s when Social Action was developing and that is a crisis in the economy and a mistrust of leadership in all areas of society. There is no part of the establishment that has not been hit by scandal and corruption. The economic and social problems we have today have their roots in Thatcher and Reagan’s attempts to re-balance the economies away from equity and social cohesion in favour of big business, profits and the wealth of the super-rich. This continued through the Blair/Brown years and has accelerated under the Coalition and now Tory Governments.   This has led to a cynicism and division on the one hand and a search for new meanings and leadership to address this pervasive malaise on the other. What has not changed over the last 30 years is an anger and frustration in communities that so much is still rooted in negative assumptions and labelling. It seems that there is still so much investment in seeing poor and disabled people and communities as ‘the other’, with all the implied notions of superiority and inferiority. These notions are deeply rooted in our history and culture and have to be understood, deconstructed and addressed if we are to build a social movement that is to truly connect with the lived experience of the people and communities across the UK. If we are to unlock and unleash all that energy and creativity in working class communities which built the Labour and Trade Union movement then we need to make common cause and win back trust. If the ‘old guard’ is allowed to strangle and grind the new membership down with boring meetings, rule books and collaborationist outlook there is no chance of an election victory in 2020.

The task is to build a social movement which begins with issues and concerns in communities and localities. It means building from the bottom up and the inside out. It needs to start from neighbourhood and identity and build outwards. It challenges us not to lecture and hector with a top down programme but to really capture the anger and disaffection and channel it into a movement that can lead social change. It needs to draw inspiration from campaigns which have challenged austerity over the last five and a half years like Disabled People Against Cuts (DPAC), save our mental health services and NHS campaigns, the People’s Assembly and groups opposing the privatisation of our schools. It will need to be focused not just on defending our rights and services but also on providing new ideas and solutions that can drive the policy development process and the writing of election manifestos.

The returning and new Labour Party membership, inspired by Jeremy’s campaign and election, alongside those members who have stayed for the duration can be mobilised to facilitate this movement but they will need to be trained, organised, resourced and supported to do this. It is their new ideas, skills, energy and enthusiasm that needs to captured and channelled into challenging the Tories. This is so important to the election of a Corbyn/McDonnell led Labour Government in 2020 it must be right at the heart of the Opposition Leaders Office and the Shadow Cabinet mission to reconnect with the electorate. It must be present when Jeremy goes out on the road again after the conference season and at the heart of democratising the policy development process. It needs to be an item and priority on the agenda of every constituency meeting to co-produce and shape it. In Scotland, Wales and N. Ireland a conversation will need to take place about appropriate models for developing the social movement based on local circumstances.

The challenge is to use the collective experience of Social Action over the last thirty five years to co-create this social movement.

So how can this be achieved?

Each Constituency Party will be charged with setting up a Social Action Movement (SAM) as a way of drawing all the new members and supporters into the Party. Each SAM will be organised around thematic groups. These could include: Education, Environment/Climate Change, Health and Social Care, Mental Health, Housing, Refugees, Welfare Benefits, Justice, International Development, Youth Futures, Economic and Social Development and others based on local priorities/issues. It will be up to local memberships as to how many groups they set up but each constituency will be expected to organise new members SAM meetings to engage with them and supporters.

The social movement will also need to engage with the communities that are excluded from the political process. It will need to re-engage with those in the white working class who have defected to UKIP because the Blair/Brown project ignored them and they see their children and grandchildren with little hope of jobs, housing or a better life than they have. This group have not joined or become supporters of the Corbyn project yet but they do feel strongly about issues and are hungry for change. Many of them are there to be won back. The SAM will need to engage and activate them around local social justice issues and priorities.

A SAM resource unit will need to be established to provide resources and materials to help facilitate the SAM groups. Each Shadow Minister will need to engage with their SAM groups and encourage two way communication/engagement and co-production around policy development. There will be SAM organisers appointed, trained and supported to provide specialist resource material for groups to use to turn out to the community in their areas and activate people in their local campaigning priorities. Each constituency party can apply to appoint their own local SAM organiser which will be funded nationally with a contribution from the local Party. The SAM’s will need to be launched as the leadership of the Labour Party re-engages with the membership in the post-conference period. There will need to be a social media resource to facilitate and spread the message far and wide. It will connect people up as social media will be key to the spreading and sustainability of the social movement.

A training programme will be established and delivered regionally. Constituency Parties will bid to have their own SAM facilitator/s. They will be recruited locally but trained and supported through the SAM resource unit. They will be engaged in phases based on the demand and funding. The resource unit will develop an infrastructure to facilitate the establishment and development of the SAM. A range of education, training, facilitation, social media, and campaigning materials will be developed to support the development of SAM.

The vision of the future can be seen in Greece. Pasok, the equivalent of New Labour, which was once the ruling party is now defeated and in ruins. It was a mass movement that brought Syriza to power on an anti-austerity platform. We have seen the consequences of appeasement with Tsipris capitulating under extreme pressure from within and without. We need to learn from the Greek experience to ensure it doesn’t happen here. The UK equivalent of the Troika, inside and outwith the Labour Party are already putting the Corbyn/McDonell leadership under extreme pressure to appease. These two leaders have a huge popular mandate from within to drive through this transformation. They now need to sponsor and lead a social movement that can keep them real and the project on course. The work to build a social movement has to begin immediately to carry forward the hope and optimism that has inspired millions.

Mark Harrison

CEO Equal Lives, DPAC member and Social Action Solutions



Mobile: 07979 400564


September 2015













Social care – disaster waiting to happen

The spectre of Baby P hangs over Children’s Services. Here in Norfolk the spotlight has been on this service exempting them from taking their share of the latest round of Coalition Government imposed austerity cuts. This has meant that adult social care has been cut disproportionately. This is not without consequences. I have warned before and I repeat it – this is a disaster waiting to happen.

People who face disabling barriers whether that be physical, mental, learning, ageing are complex human beings. They also have complex lives. When people go into crisis and need health and social care support it often is also related to housing, poverty, employment, unemployment, changes in personal relationships, family circumstances and other issues. This complex web needs joined up professional solutions.

The mental health trust has experienced huge cuts to its funding and is consequently failing. We see the human consequences in unnecessary suicides and people in crisis being sent all over the country at personally to them and their families and the public purse. We see people with mental health needs unable to get an assessment because the bar is set too high and we see people discharged from the services prematurely because they show the slightest sign of recovery. We see people with mental health problems criminalised as they end up in police custody and the courts for offences related to their untreated mental health. Professional staff in health and social care are put under intolerable pressure to ‘manage’ this crisis of scarce resources. Instead of taking responsibility for dealing with this complexity they are passing the buck and retreating to statutory duty and saying ‘not my services responsibility’. This takes its sharpest form in the custody suites of our police stations, A&E and mental health wards when people are to be discharged with nowhere to go and nobody will take responsibility.

The deaths that occur as a result are clearly a tragedy for the people concerned and their families. It is not good enough for public officials regulatory bodies and politicians to point fingers and blame others or to say ‘lessons will be learned’. They won’t and they haven’t as the repeated tired and worn out phrases lose all meaning.

It is worth recalling the case of Christopher James, which was covered by the EDP at the time. Christopher suffered from schizophrenia and a drug addiction. Christopher was discharged from the Norfolk & Norwich Hospital on a Saturday after a detox course. The hospital knew that Christopher was homeless and that the addiction service, Norfolk Recovery Partnership (NRP), is closed at weekends. Of course, the NSFT team which looked after homeless people with mental health issues had been closed as part of the ‘radical redesign’.

The day after his discharge on October 27, 2013, police were called to the Sugar and Spice, a table dancing club, after a worker saw a body in a loading bay near Prince of Wales Road, Norwich. Christopher James was dead in the street following an overdose but as he was homeless, mentally ill and a drug addict, his death did not attract much sympathy. He was 27 years old.

The impoverishment of public health and social care combined with a housing crisis due to the lack of suitable and affordable social housing is a poisonous mix. The subsequent failings lead to tragedy and this is used by all the mainstream political parties cynically to justify further privatisation of our public services. This exacerbates the crisis even more.

It is bad enough when the person who is in crisis dies or commits suicide. Life is cheap in Food Bank Britain for poor, disabled people and people with mental health issues. But when they kill innocent members of the public then it takes it to a new level. Let’s hope the Ministers, politicians and senior managers who are responsible for this situation are held to account and the headlines don’t just become tomorrow’s chip wrappers. Let’s stop giving them air time to denounce others whilst taking no responsibility themselves for a crisis that is of their making.

The collective failure of our politicians and health and social care leaders is their responsibility and theirs alone. It is our responsibility to hold them to account for their collective failure. We have to demand better.





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