Tuesday, 18 August 2015

Making benefits dependent on accepting treatment: why should you care?

In July Government announced an independent review into the impact on employment outcomes of drug or alcohol addiction or obesity [1].
One well-publicised option is to make acceptance of treatment a condition of receiving benefit. This was met with horror from curiously diverse quarters:

·         UKIP said threatening those at the bottom of society with penury if they ‘do not do what they are told’ shows a fixation on finding people to blame – rather than lifting burdens from everyone [2]
·         Alistair Campbell called the Prime Minister’s statement on this ‘embarrassing’ and ‘pathetic’ at the very time that leaders like Angela Merkel were leading debate on Ukraine and Greece [3]
·         GP leaders said it could lead to GPs becoming probation officers and inspectors [4]
·         Conservative Health Select Committee Chair Sarah Wollaston called the plan unworkable and illegal – describing consent as central to health treatment [5]
·         Slimming World said alarmist headlines that overweight people face losing their benefits will make the problem worse; and that blame will perpetuate a cycle of despair and loneliness [6]

What has any of this got to do with disabled people?

In the very first sentence the Review talks of how best to support claimants with ‘potentially treatable conditions’ - like obesity or addictions to drugs or alcohol - into work. So the overt reason for selecting obesity and addictions is that they are treatable conditions. But maybe the (not so) covert reason is that both are easily stigmatised experiences, where people can be blamed for their life choices. Hence headlines like ‘Is it right to use benefits to pay for addiction?’ [7] or  - slightly more paternalistically – ‘A welfare system that buys drink for alcoholics, drugs for addicts and sweets for the obese is cruel, not compassionate’[8]
If it’s really just about targeting people with treatable health conditions, then where is the limit? Any treatable health condition?

If it’s about people whose choices impact on health conditions/impairments, then what about rock climbers or hang-gliders? Should anyone engaging in risky activities have their benefits stopped?

It is worth disabled people setting out clear principles to guide discussion in this arena – both because so many have multiple impairments (would the person who is obese due to adverse effects of psychiatric medication, or steroids taken for asthma, or chemotherapy have their benefits stopped?); and because it’s worth getting principles clear when ideas like this are first consulted on, to influence the debate from the outset.   

So here are some principles, to start a debate:

1. In general, it is perfectly fair for society to have expectations of people living with health conditions and impairments (for instance, to pursue education or to bring up children effectively) – as long as society’s obligations to them are met - ie as long as the world is becoming more inclusive, based on universal design, with an enabling state getting education/transport/support right. Indeed to have no expectations of disabled people leads to rank paternalism: expecting nothing of people is a sure way of keeping them subservient

2. But it is not fair for those expectations to be turned into an injection of fear – the fear of loss of benefits – because fear is not an effective behavioural incentive. Positive motivators - engendering hope, offering support when you need it, peer support from others who have been through similar challenges – simply work better than fear-based ones. For instance, sanctions for non-participation in the Work Programme employ fear and have patently not led to growing numbers of disabled people on ESA going on to the Work Programme and getting jobs (see http://www.disabilityrightsuk.org/news/2015/august/high-success-rate-esa-sanction-challenges)

3. Still less is it fair to link fear of loss of benefits to requirements to accept treatment. In England we are witnessing a steep rise in coercive treatment – for instance, 53,136 uses of Mental Health Act compulsion (in 2012-13), 30% higher than in 2003-4. See http://www.cqc.org.uk/sites/default/files/monitoring_the_mha_2013-14_report_web_0303.pdf.pdf .  Making treatment a requirement to get benefits would exacerbate this trend. Legally it is an assault to medically treat someone without consent, except in highly specified circumstances – and under the UNCRPD these circumstances should be further narrowed (our current mental capacity and mental health laws permit too much treatment without consent). ‘Consent’ is not consent if made under threat of poverty.

4. It is not fair to view impairments and health conditions just as ‘illnesses’ that require ‘treatment’. If, for instance, you experience significant anxiety due to life events (from abuse to unemployment), drink alcohol to mitigate it, become dependent on alcohol, face social rejection due to your problems, which exacerbates your anxiety – then just ‘treating addiction’ is missing the point. A social understanding of both the multiple causes of addiction and the social consequences – rejection, unemployment – are needed. We need to move away from narrow medical models in which the problem is seen as an illness, the solution as a ‘treatment’. It is particularly abhorrent to require people to accept treatments that may not even work (the success rate of treatments for addiction is not brilliant – even when people are motivated to use them; it is likely to be lower for people dragged in for fear of poverty)

5. It is not fair to set different requirements to accept treatment on people who have long-term health conditions than other citizens. For most people with long-term health conditions it is also illegal, under the Equality Act 2010

6. It is not fair to set different requirements to accept treatment on people who have ‘chosen’ activities that have impacted on their health (like people who drink above safe limits of alcohol). Whilst it is fair to employ positive incentives to encourage and support people to build healthier lives and look after and manage their own health, it is unfair to use negative motivators for 2 reasons. Firstly, who really does ‘choose’ to be dependent on alcohol? People ‘choose’ in a context of social and economic stresses and cheaply priced drinks. And secondly a founding principle of the NHS is a health service available to all, based on consent – not a differential service with one approach for people who behave according to some societal ‘norm’ and another for people who ‘choose’ drinking or rock climbing.

Dame Carol Black, who is conducting this independent review, should think long and hard about which types of incentives actually work (not just what treatments work, in the classic clinical sense); and base her review on principles of fairness, equality and human rights.

By Liz Sayce

Thursday, 13 August 2015

Social Care Betrayed

Sue Bott, Deputy CEO of Disability Rights UK, comments on the Government’s decision to postpone the Cap on Care Charges until 2020 and says why this is devastating, in financial terms, for those who receive care support.

On 17th July the government announced that it would delay the reform of social care funding due to be introduced in April 2016.  This included the cap on care costs and a more generous means test than at present.  Thus they announced that hundreds of thousands of disabled people who rely on social care support will have to pay ever rising local authority charges for the foreseeable future.

For students of government this announcement was something of a classic.  How do governments announce bad news and a reversal of a manifesto commitment made less than three months previously?  Well you announce mid-way through the working day on a Friday leaving journalists scrabbling around trying to find suitable stories to underpin their coverage of the event.  Not surprisingly they failed, meaning that by Saturday morning it had become a non-story, a bit of bad news relegated to the following week’s specialist press.

That this is bad news there can be no doubt even though some parts of the voluntary sector, such as the Care and Support Alliance seemed to welcome the move.   ‘The Government have made the right decision to delay the introduction of the care cap’ (Vicky McDermott, Chair Care and Support Alliance).  I believe this view is mistaken and lets down the people who are having to pay.  Undoubtedly social care is in crisis but introducing funding reform, far from being a distraction as some have argued, would have forced the issue into the public domain.  As it is I fear the government are being allowed to get away with ‘business as usual’.

If we believed the press we might think the care cap is just about ensuring older people can still leave their house to their kids. It is far, far more than that. For a working age disabled person, if the cap were brought in in 2016 this would go some way to getting rid of a huge injustice: not being able to save any money – for your older age, for a holiday. Everything you could save has to go on care. Is that fair? Why should those of us who happen to have a care need be so much worse off than everyone else?’
Let’s just consider what the reform would have included:

  • A cap on care charges of 72K – That is the value of meeting assessed and eligible needs.  For younger disabled people it has been estimated that the average person could reach the cap in five to ten years.

  • People who develop an eligible support need under the age of 25 would pay nothing for life.

  • Working age people receiving care and support would have been over £50 a week better off because the guaranteed income for younger people and older people would be the same (at present working age disabled people pay more than older People).

The Government say they haven’t abandoned the reforms merely ‘delayed’ the introduction until 2020 which conveniently happens to be an election year.  Many commentators suspect that in reality the reform has just been kicked into the long grass.  Anyone who seriously thinks that the money saved from not introducing funding reforms will find its way into social care (something the Local Government Association has proposed) or that the resource landscape for social care will have improved by 2020 I believe is missing what is really happening here – that to all intents and purposes the state is opting out of social care.

The current position is simply unsustainable.  In a statement issued by the Association of Directors of Adult Social Services on 4th June calling on the government to protect essential social care services they noted that since 2010/11 social care has been cut by 10.7% and this at a time when the need for social care has been growing as we are all – happily – living longer. 


There are no more ‘efficiency’ savings to be had and social care providers simply cannot have their fees reduced still further especially given the need to pay a living wage to their staff.

So who’s left to pick up the tab?  Only the charges made by local authorities on disabled people and older people needing support.  With no funding reform we are left with the current system which, by any accounts, is unfair and, as even the government admitted in its funding reform consultation earlier this year ‘The system simply doesn’t work for today’s society’. 


Over the last few years care charges have increased and increased. Local authorities, faced with enormous pressures, try all sort of ways to increase their income including taking a tick box approach to identifying disability related expenditure, thus not taking into account the true costs, assessing people as couples to increase the amount the disabled or older person has to pay, and now we are receiving reports of local authorities charging people even before they have had a financial assessment.  As the crisis in social care continues to bite charges will only increase.  As Jeremy Hughes, CEO of the Alzheimer’s Society said, commenting on the delay in the care cap ‘This will cause unacceptable costs to continue to be borne by people (with dementia) and their families into the next decade’. 

Not only is the postponement of the care cap a betrayal of a Conservative Party manifesto commitment; it is a betrayal of social care itself.

Sue Bott

Wednesday, 5 August 2015

Mobile fab lab for pioneering disabled people launched at the BBC Media City set to create new disruptive trend

Fab Labs – or Fabrication Laboratories – are spaces where creativity and technology collide. They provide a space where high-tech, innovative equipment meets imagination. The launch event at the BBC on Wednesday and Thursday of last week saw disabled men and women of all ages clutching their invitations and heading for the fifth floor of the BBC in Salford last week, determined to be there at the start of a new frontier for digital fabrication

View BBC report on the event
A series of workshops formed the core of the launch event. The themes included ‘where do ideas come from’, product design, scanning and 3 D printing and business start-up and support. The launch menu offered the vital ingredients of inspiration, practical learning, collaboration, ongoing involvement and equal and affordable access to new technology. Technical support was provided by Manchester Fab Lab and the distributors Ultimaker.

“For too long equipment such as 3D printers and laser cutters have resided in universities and been marketed for use by businesses leaders in SMEs or men with craft skills labouring away in suburban sheds”, says Philip Connolly.  “Now Disability Rights UK in partnership with the Universities of Salford and Dundee are breaking out of the traditional settings and democratising the user base through the creation of a mobile fab lab for disabled people.”

The true originality of this project – In the Making - lies in its mobility. Rather than operating out of a central location, the fab lab is a touring enterprise, moving in and out of suburban and central locations in order to maximise accessibility. Often it is accessibility – from a physical perspective but also sensory and even mental health ones - which lies at the heart of disabled people’s involvement – or not.

Philip Connolly of Disability Rights UK pointed to the diversity of those attending: “People with severe mobility and communication challenges pressed their interest with those with learning difficulties and mental health conditions all looking to disrupt humdrum routines and the anaesthetizing voices of those who say something cannot be done”. He went on, “Disruption is the key word. Supposing in 1985 we had taken young unemployed disabled people and trained them in the use of PCs, probably by 1990 they would have been the ones in the jobs and in the offices, helping businesses to digitalise their services. Now fast track to 2015. The disruptive question is -what can we train them in such that by 2020 they are the ones applying their skills and doing the new manufacturing jobs? Well my disruptive answer is digital fabrication. I am sure there are other answers too and I invite people to come forward and tell me what they think they are. Many futures are possible. The point is that it is possible for disabled people to leapfrog change. It is possible for the last to come first.”

The fab lab will now move to the neighbourhoods of Salford starting with Princess Park garden centre in Irlam, Salford on September 3rd and 4th. Following this event it will be recreated at the gateway centres of Walkden, Swinton, Eccles and at the inner Salford locations of the Angel centre and the Start in Salford centres too.

“It is not about where we end but the transformative effect of making a start and that’s why this project is called, “In the Making.” - Philip Connolly.

Disability Rights UK, the University of Salford, and the University of Dundee are working together to explore the possibilities of digital fabrication. The project is titled 'In the Making', and will involve disabled people in developing commercial, social and creative benefits from new digital fabrication technology. You can find out more about the project here

Thursday, 30 July 2015

Get Yourself Active Launch - a project personal best

It is one month since we launched our new Sport England funded Get Yourself Active project and as well as feeling a huge sense of relief that the event went smoothly with no glitches, I felt a little sad when it was all over. However, the launch event was not just about having a nice lunch and telling people WE’RE HERE. It was a chance for us to tell Get Yourself Active friends (stakeholders sounds so formal!) what we need from them to make this project work. So although the launch is over, there is still a real buzz and we intend to sustain this excitement throughout the project.

What I found so encouraging was simply how many people turned up when they said they would. This says to me that there is a real sense of excitement about the project across health, social care and sport. The launch was a rare opportunity for people from such a wide range of professional backgrounds and disciplines to think about and talk through how we improve disabled people’s health, wellbeing and independence through physical activity and sport. It was even rarer to be having this discussion in the context of personalisation, the Care Act and the NHS vision for community based services as espoused in the Five Year Forward View.

We had some inspiring presentations from our partners and ‘friends’, these can be found on our launch event page – please take a look. Then over to our discussion groups who put the world to rights and made many useful comments and suggestions about what is needed to make this project a success...

Someone suggested that we need to promote meaningful involvement of disabled people if Get Yourself Active is to be a success - ‘Disabled people need to be upskilled to know how to navigate through the process and be provided with the required information in the right way.’ If more disabled people are involved in providing these services we will have a better chance of good quality service design.

We had a great response from friends in the sport sector too – ‘Sport providers will jump all over this – they’ve been waiting to find out how they can link in with people on PBs.’

We were also interested in identifying the many challenges we face including tight local authority budgets, the infancy of such an approach in health and a lack of confidence from sports providers to engage with disabled people meaningfully. So it is clear there is lots to do which means it is vital that friends of the project help us to achieve our outcomes.

It is important to remember why we are delivering this project, getting people on board is a means to an end. Get Yourself Active is about better physical activity and sport options for people with physical disabilities, learning difficulties, mental health issues, sensory impairments those with Autism and older people, that’s what we are passionate about.

Please get in contact with us if you have examples or knowledge of how personal budgets have been used for physical activity or sport by emailing me at Leanne.wightman@disabilityrightsuk.org or tweeting us @GetYrselfActive using our hashtag #whatsyourpb

Friday, 17 July 2015

Whatever happened to disability equality?

On Tuesday I gave evidence to a House of Lords Select Committee scrutinising the effectiveness of the Equality Act for disabled people: 

Hear Liz give evidence 

I said that in the 2000s disabled people felt some hope because of the civil rights we had won:
  • The law no longer (like the original race and gender laws) just gave redress ‘after the event’: it required organisations to positively promote disability equality – to treat people differently, in order to get equal outcomes
Lights Camera Action
  •  The law gradually improved: it covered more areas of life (eg schools, colleges) and more people (with better coverage of those with MS, cancer, depression)
  • Some progressive changes continued into the Equality Act 2010: for instance, a fantastic campaign by National AIDS Trust, Rethink, Macmillan and Radar led to a bar on employers asking questions on health and disability before job offer (except where necessary eg to make adjustments in recruitment) – to help root out recruitment discrimination.

But I added that this hope has declined, as we have seen less promotion of the Public Sector Equality Duty and huge challenges for individuals to get redress. Our information lines hear from people all the time experiencing real unfairness at work or from services – who just can’t get good advice or legal support when they need it.

We need leadership from right across Government and from the Equality and Human Rights Commission (EHRC) and major public and private organisations (some of which do great things – but others do nothing or worse). Enforcing and promoting the law can’t be left to the individuals facing discrimination: it’s organisations with power that need to act.

And we need a strong narrative on our equality: not discussions of disabled people as if we are either completely self-sufficient or need ‘looking after’ but a commitment to the universal design, adjustments and supports that will enable Britain’s 12 million disabled people to achieve equality.

We have until September to put in additional written evidence to the Lords Committee on the Equality Act. If you have views on how the Act is or is not working in practice, and experiences to share, just let us know at Philip.Connolly@disabilityrightsuk.org 

On Wednesday I attended an EHRC event and pressed them to address disability equality effectively in their forthcoming report ‘Is Britain Fairer?’ Last time, they reported a big pay gap between disabled and non-disabled people and then said the priorities were closing the gender pay gap; and closing the employment gap between disabled and non-disabled people. This suggests that women deserve decent pay and promotion; whereas disabled people should settle for any job, no matter how badly paid and insecure. Not exactly a message of fairness. I and others also pushed them to cover vital issues like school exclusions of disabled people, institutionalisation and co-ercion, life expectancy, accessibility and more. We will see if they take note. It should be out in the Autumn.

Also on Wednesday I met (with others) Justin Tomlinson, Minister for Disabled People. We raised our strong concerns about the proposal to cut ESA for new people in the Work Related Activity Group after 2017; and discussed the Government’s plan to halve the disability employment gap, and how to do it: communications campaigns like Disability Confident don’t in themselves change employer behaviours or give employers and disabled people the support they need.

In America, there is a campaign for a Community Integration Act as a civil right
Campaign for a Community Integration Act as a civil right

Meanwhile in America, there is a campaign for a Community Integration Act as a civil right – to remove the bias towards institutional care. A source of inspiration for us?

Tuesday, 9 June 2015

Should we adopt Australian policy ideas?

I’ve just returned from leave in Australia – and I took to wondering about the fact that in the UK we are often entreated to look to particular countries, like Australia and the US, to inform our own policies. Should we? If so why and how?

We need to be selective about what we import and adapt – and note what ideas we are exporting as well. When I left the UK, there was much talk of adopting the Australian points-based system for immigration; meanwhile the Australians were busy discussing whether to adopt UK policy on removing citizenship from people who have gone to fight for Islamic State.

Australia is a fantastic country: beautiful, friendly, innovative.

It has people prepared to make statements of deep humanity in the face of anxieties about migration:

Real Australians say welcome

 Not to mention amazing landscapes and wildlife:

Don't feed the Ibis sign
But whether it is at ease with its diversity, and universally committed to equality, may be open to question. While I’ve been there, 2 debates have raged, over the government’s policy of closing some remote (indigenous Australian) towns; and over gay marriage. And disability policy and conversations about it are decidedly mixed (see below).

One town has already been razed to the ground, its aboriginal population forcibly evicted. The proposition is simply to shut some remote towns down because it is too expensive to provide basic services to them (water, education etc), and because some are badly affected by social problems like alcoholism and child abuse. Set this policy against history: aboriginal people were forcibly ‘dispersed’ by 19th Century British colonialists; often dispersal was a euphemism for massacre - indeed an artwork by Fiona Foley in Brisbane’s Art Gallery consists of the huge word ‘DISPERSED’ with the ‘D’ made entirely of bullets. Major cities were segregated: in Perth, for instance, no Aborigines were allowed in the city centre (except to carry out their work) until 1954. In October 1954 the main Aboriginal club held a ball in Perth Town Hall, to celebrate being allowed back on to their (own, original) home land, the place of the Wadjuk Noongar home fires. Aboriginal people were denied the right to vote, the right even to give evidence in trials (making a mockery of justice); and the first Aboriginal was granted Australian citizenship in 1957.

Closing communities reeks of dispersing the dispersed, dispossessing the dispossessed. The results of dispossession are evident on the streets. In Broome, Western Australia, I saw the liquor stores that will only sell to people with cars, to prevent homeless aboriginal people buying alcohol. Some have taken to taxis.

Redressing the long-term impact of dispossession is hugely challenging. There is great work in train by Aboriginal-led organisations and elders, fighting for land rights, developing new opportunities; and by some NGOs, building on communities’ assets, not defining them as ‘social problems’. Some companies are investing in business development led by aboriginal people; and former Premier Kevin Rudd did issue a formal apology to the Aboriginal people as his first act in office. But to see Aboriginal leaders on TV stating that they have not been consulted about planned closures of communities suggests a lack of process to attain real co-produced solutions.

And then there was gay rights. It was perhaps unfortunate that an Aide to PM Tony Abbott apparently asked the Ambassador to France not to have his (male) partner present on the airport tarmac to greet the PM. The Ambassador immediately threatened to resign. And Abbott, who personally opposes gay marriage, was left distancing himself from his Aide’s decisions. This may have been based simply on symmetry of partners demanded by protocol – Abbott’s wife was absent – but when Abbott was faced, in the aftermath of Ireland’s popular vote for equal marriage, with his own sister stating her wish to marry her (female) partner on prime time TV, he issued no ringing endorsement of her position. Meanwhile activists created badges like ‘Alabama has gay marriage; we are behind Alabama’.

There is much good work in Australia on equality; but it would be reasonable to say it is not fully, publicly at ease with its history or with diversity.

So what of disability policy?

The biggest show in town is the National Disability Insurance Scheme (NDIS) which is progressively phasing in the equivalent of personal budgets for social care across the country. It attracts cross-party support; and funding for it has been safeguarded in the face of cuts elsewhere. And the services on offer are free! There is no distinction between health services being free at the point of delivery and social care being means-tested. Here IS a policy idea worth exploring in England and the UK: after all, what better way of integrating health and social care, the holy grail of policy in the nations of the UK, than to get rid of the border disputes between the two and the attempts to shift costs to the individual?   

NDIS is not perfect. There is a gap between the numbers needing support and numbers eligible for NDIS (although seemingly a much smaller gap than in the UK); more specifically you have to have a continuing, permanent disability – which people are busy defining to include psychiatric and other fluctuating conditions, but clearly the definition is problematic (why should you have to prove your impairment is permanent when you need support now?); Australia generally is behind the UK in personalisation (congregate living arrangements, and block contracts for day centres, are still often the norm); and there is worry in mental health circles that NDIS seems to offer higher prices for professional interventions than for peer support. But overall the evidence suggests it is set to significantly increase opportunities for participation for Australia’s disabled people.

And Australia has other good initiatives, like its Job Access programme, that gives free, detailed information to disabled employees and employers, with thousands of web pages on the accommodations and systemic approaches that have worked in practice, backed by free telephone advice.

But at the same time, the 2014-15 budget brought in curbs on the main disability benefit (the disability pension) – so arguably the state gave with one hand, and took away with the other. Anyone under 35 who could work more than 8 hours had to undertake compulsory activities, like ‘work for the dole’, or face sanctions which at worst could mean 8 weeks with no payment.

Changes were justified in terms of rising numbers of claimants – but the National Welfare Rights Network commented that the rise was broadly in line with population growth – ie not a rise in percentage terms.

And as for the May 2015 budget, the National Centre for Social and Economic Modelling concluded that 90% of the poorest families would be worse off as a result.

And then there is the national conversation on disability benefits. As the population watched ‘Struggle Street’ (a direct equivalent of Benefits Street) and debated whether it offered a demeaning portrayal of ‘social breakdown’, the Prime Minister moved from just talking about ‘lifters and leaners’ (the equivalent of strivers and skivers) to announcing a police-led initiative to stop benefit fraud. As the National Welfare Rights Network put it, inflammatory media language like ‘Welfare Cops on the Beat’ was unhelpful.

Sound familiar?

So: whilst governments learn from each other’s policies and narratives, disability activists need to make our own selections in the interests of full equality and participation of disabled people. And as far as Australia is concerned, we can learn from the free NDIS, from the Job Access programme, from the strategies of our fellow campaigners. As disabled people’s organisations, we can put in place initiatives ourselves, working with partners and learning from international good practice. But we should never simply accept the selected learnings that governments put forward. There are positive and less positive developments in Australia (and in every other country); and we can decide which learning we want to import and adapt – and which to reject.   

Liz Sayce - Chief Executive Officer Disability Rights UK
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