Details of upcoming protests, events and meetings will be posted on this page. We will also provide links to online actions, reports and other useful information.
Details of upcoming protests, events and meetings will be posted on this page. We will also provide links to online actions, reports and other useful information.
Statement by Anne Pridmore, Gabriel Pepper and Stuart Bracking As three of the Independent Living Fund users who have challenged the legality of the government's decision to close the Fund, we welcome the Appeal Court's unanimous ruling that this decision should be quashed. Given the Government has decided not to appeal to the Supreme Court, the new Disabled People's Minister Mike Penning will now have to reconsider the Government's approach to the future of the Independent Living Fund and its users. Rather than being the 'privileged group' referred to in the High Court judgement, the Appeal Court has acknowledged the potentially very grave impact the closure of the Fund would have on its users, putting seriously in peril the ability of a large number of people to live independent lives in their own homes, and pursue activities such as employment and education. They concluded that when Disabled People's Minister Esther McVey made her decision in 2012 to finally close the Fund by April 2015, she did not properly consider the need to advance our equality of opportunity, minimise the disadvantage we face, encourage independent living, and promote our participation in public life and other social activities. For a generation, the Independent Living Fund has provided funding to support disabled people with complex conditions who need personal assistance to live in the community. Twenty years ago, Disabled People's Minister Nicholas Scott who founded the Fund in 1988 explained its importance to the House of Commons (25/2/1993): "It has helped those severely disabled people who did not want to go into residential care but who could not live in the community without a considerable degree of domiciliary support to maintain their independence. That is something that we can all applaud and welcome." This is as true today as it was then. In the same speech, Nicholas Scott also acknowledged there were limits to the financial support local authority social services could provide some disabled people: "If it is necessary for extra help to be provided....it will be open to the social worker who assesses the needs of disabled people to say, 'We can provide services up to this level but we believe that a further level of care is necessary,' and then to turn to the Independent Living Fund." The Independent Living Fund has provided a platform for social opportunities to be pursued by severely disabled people in large numbers for the first time in history. The careers, family life, friendships, social activities and roles people have built for themselves could be undermined and in many cases dismantled if the Fund closes. Although the Appeal Court ruled the consultation which preceded Esther McVey's closure decision was lawful, we believe there is now an opportunity to reflect on our society's responsibilities towards those who rely on the welfare state to keep them safe, healthy and free of distress. Last year, 2000 individuals and organisations responded to this consultation, but the Court of Appeal held the real substance of the consultation responses were not conveyed to Disabled People's Minister Esther McVey. An opportunity for an open, democratic debate was lost. By responding to the World Health Organisation's recommendation in the World Report on Disability that countries should provide services in the community and not in residential institutions or segregated settings and plan how to achieve this, the human and civil rights of disabled people of all ages could be respected, not just those of Independent Living Fund users Until a decision is taken to save the Independent Living Fund and open it to new applicants with adequate funding to meet people's individually assessed needs, the fear many disabled people have expressed about their future will not disappear. This fear stems from an understanding of the impact limited support in the community will have on people's life chances, or for some of us the low standards and rigid approaches to personal care found in residential and nursing homes which place people at risk of skin conditions, sores and sepsis. Many Independent Living Fund users are also acutely aware that, as long-term employers of personal assistants, if they are forced into residential care their knowledge of the law and care standards will bring them into collision with poor management and abusive cultures where they exist. There is also a significant risk for people with learning difficulties and/or autism of physical and emotional abuse in segregated settings where restraint and drugs are used to control behaviour that is defined as 'challenging' rather than being approached with patience, compassion and kindness. The fear of residential care that exists among Independent Living Fund users with 'round-the-clock' needs also exists among large layers of the general public. When reconsidering the Government's approach to the future of the Independent Living Fund, the new Disabled People's Minister Mike Penning could give the Fund a long-term future under the democratic control of its users, but also commit the Government to respect existing rights to an individual assessment of need. His Government could give disabled people of all ages the right to live in the community throughout their lives with the personal assistance and professional services they need, rather than the artificial and segregated environments found in residential care. We urge Mike Penning to grasp this opportunity and remove the uncertainty many thousands of severely disabled people and their families have experienced for several years. We would like to express our sincerest thanks to: our fellow claimants Paris L'amour and John Aspinall and his parents Evonne and Paul Taylforth; the tireless work of solicitors Louise Whitfield of Deighton Pierce Glynn, Kate Whittaker and Diane Astin of Scott-Moncrieff and Associates, and our barrister Mr David Wolfe QC; the supportive intervention of the Equality and Human Rights Commission; and Independent Living Fund user Kevin Caulfield's networking and guidance during the case. We also acknowledge those Independent Living Fund users who have highlighted the impact closure would have on their lives, particularly Penny Pepper, Sophie Partridge and Mary Laver, which is not easy given the privacy most Independent Living Fund users and their families strive for. We would also like to thank: Disabled People Against Cuts and Inclusion London for the campaign coordinated by Linda Burnip, Debbie Jolly, Tracey Lazard and Ellen Clifford; other users of the Fund and disabled activists who have attended protests and vigils and supported the campaign; the two thousand organisations and largely anonymous individuals who responded to the Independent Living Fund consultation a year ago; the support of the PCS union and the workers at the Independent Living Fund; our personal assistants; the work of campaigning journalist Kate Belgrave; and the consistent reporting of this issue by John Pring at the Disability News Service. The future is ours to shape, but only if the personal assistance we need is present.
Introduction from Sue Marsh
“I’ve just seen Kate Green’s first speech as Labour shadow minister for disabled people.
It rocks, and is so different to what we were hearing just two years ago, it’s hard to put the two together.
Just one thing. But to me it’s a big thing.
When Alf Morris, also Labour and the first minister for disabled people passed his ground breaking legislation, he called it the “chronically sick and disabled people’s act.”
I’ve campaigned primarily by trying to re-introduce that original intent back into the narrative. I always, always say “sick and disabled” and it’s gives me great pleasure that it has become so universal that even DWP documents and statements now use the phrase. Language matters and if we don’t want politicians – and the public – to get away with two dimensional attitudes to disability, we can’t use two dimensional definitions.
Otherwise, as I said, it rocks.”
“It’s a great pleasure to join Unison here this morning. Earlier this year, I was fortunate to be invited to your equalities conference, and I think I recognise some of the same faces! But I have to tell you this is my very first speech in my new role as shadow minister for disabled people – so I hope you’ll be a little kinder to me – you know so much more than I do, and you will have much more to tell me than I can tell you.
Writing this speech has however been made much easier for me by a very helpful article which was published last week by my predecessor Anne McGuire.
I know Anne is well known to you, and I can imagine there was real dismay when she announced she was stepping down from the frontbench.
She’s been an expert, passionate and committed advocate for the rights of disabled people for many years, she was a highly effective minister when we were in gvt, and I know she’s a very hard act to follow.
I’m very glad to say that she’s also my good friend.
Anne in her article last week wrote that the last three years have been the most threatening for disabled people and their families, and I could not agree more.
After years of progress – under both Tory and Labour governments – the DDA, Making Rights A Reality for Disabled People, the signing of the UN Convention – under the Tory-led coalition it feels we have gone back to the dark ages.
Disabled people have been – I think it’s not an exaggeration to say this – they’ve been vilified, while the support that they rely on has been slashed, without a care for the long term or the human consequences.
According to campaigners, disabled people have been hit 9x as hard as non disabled people by austerity cuts.
And such support as has remained in place is increasingly being confined to the most severely disabled .
Yet such an approach is simply counterproductive.
It will lead to greater isolation, reduced social participation, worse health outcomes, less chance that disabled people will be able to participate economically.
It will pile up costs and anguish for disabled people, their families, communities, and ultimately the public purse.
Yet even as disabled people are taking the hit, every day it seems there’s a drip drip of stories in the media that repeatedly portray them as scroungers, skivers, or frauds.
So I want to say very clearly – what’s being said, insinuated and implied, is wrong, it’s cruel and it’s shameful.
It creates division, and it feeds into quite despicable levels of abuse and violence.
It underlies unacceptable levels of hate crime against disabled people, and we need to call time on it now.
Labour will continue to stand against this, and condemn misleading and inflammatory portrayals of disabled people – and I want to lay down the challenge to government ministers: you should be doing so too.
But while there’s so much for us to be angry about under the present gvt, today I want to think ahead about how Labour would approach disabled people’s rights.
I hope some of you will have contributed to the work that Anne and Liam Byrne set in train to consult widely on what a Labour government could do to make disabled people’s rights a reality.
We’ve asked Sir Bert Massie to chair a taskforce advising us on how we should take our thinking forward in the light of what we’ve been told, and I’m very much looking forward to discussing ideas with Bert and his team.
But, you know, I’m already clear about the guiding principles that we as a Labour government will follow.
Ed Miliband has talked powerfully of how we are a One Nation party.
That means a vision of a better Britain, in which everyone has a stake, everybody plays a part, prosperity’s fairly shared.
And nowhere could our notion of being One Nation be more tested than in the way in which we include disabled people and stand up for their rights.
So every policy Labour develops will be about including, not isolating disabled people.
It will be about respecting them, celebrating the contribution they make, not demeaning and insulting them.
And disabled people themselves will be co-producers in decision-making about them and their lives.
Of course, every individual will face different circumstances, no two disabled people have the same lives or needs.
But we should not be satisfied until every disabled person can achieve their full potential.
Now, we’ve said we will be tough on benefits spending. That doesn’t mean blaming or demonising people, but it does mean being tough on what it is that prevents every disabled person is from participating as they could.
For many, that includes being in work.
And I think we have much more to do to address the disadvantage that disabled people face in the labour market.
Why are disabled people less likely to be in work, to earn less if they are in work, or to progress less than non-disabled people?
What barriers are in their way? And more important, what do we do about it?
I truly believe the gvt has missed a huge trick in its annual reviews of the WCA. It could have taken the opportunity to think big.
But nowhere have ministers asked – what would need to change to enable more disabled people to work and to thrive at work?
Instead they’ve concentrated – crudely – on sorting people into those who can work and those who can’t, and putting more pressure on individuals they think could work.
I simply don’t buy that binary approach. People’s lives are more complicated. Conditions are more nuanced. Work – and contribution – comes in many forms.
So I want to look very hard at all aspects of disabled people’s employment chances, not just go round beating up on Atos (though they deserve some of that), not just a bit of tinkering with the WCA.
I want to see our labour market strategy linked much more closely to our industrial strategy.
And I want us to learn from what were able to try in govt – whether that’s Work Choice, A2W, P2W, NDDP – and take a hard look at what worked and what did not.
On social care, my colleague Liz Kendall and I want a sustainable model that ensures we don’t get into a situation where disabled people end up becoming increasingly dependent for want of often quite small amounts of care.
The government clearly thinks responsibly for caring can be thrown more and more on families.
But that’s not always feasible, it’s not fair, it’s not economically effective, and it’s not what many disabled people want.
We need a system that preserves people’s independence, that is a springboard to their wider participation in society, not a means of putting them out of sight and out of mind.
And on financial support for disabled people, well look, I’ve always known that a secure and decent income is a prerequisite for full social engagement – whether that’s about participating in education, employment, being able to volunteer or participate in community activity, care for your kids, enjoy and live your life.
You know we won’t be able to reverse every benefit cut when we come into government, though we’ve already said we’ll abolish the hated bedroom tax – and 2/3 of those affected by it are disabled people.
But I’ll tell you this: I am all too aware that the cost of living crisis is felt acutely by disabled people, as the extra costs associated with disability pile up.
So it will be my priority to make sure that every measure we announce to address the cost of living crisis that families face under this out of touch, arrogant, millionaires’ gvt – that every one of our policies goes the extra mile to work for disabled people, their families and carers too.
I’m conscious of how much of your time I’m taking. It’s because there is so much I want to say.
So let’s treat this as the start of a conversation, not the end of a speech.
When I heard Anne was standing down, I too was dismayed – but I have to tell you my very next thought was that I passionately wanted her job.
I know how bad things have become in just three short years, but I know we can do so much better for disabled people. I know it can be better than this.
With your support, I very much look forward to getting to grips with the challenge. Please let’s stay in touch.
The Government has just appointed a full Minister of State, Mike Penning MP, for Disabled People: this is welcome. The Government has also now published its response to the Personal Independence Payment (PIP) and mobility consultation.
The Government previously announced it would cut eligibility for ‘high rate mobility’ support from people able to walk 50 metres to just 20 metres. The Department for Work and Pensions (DWP) announced the policy late in welfare reform plans but were forced to undertake a consultation after disabled people and organisations challenged the announcement, highlighting the devastating impact this policy would have – denying essential help to thousands of disabled people and carers helping with mobility/transport needs.
The Government decided – against the wealth of evidence provided by individual disabled people and disability organisations across the UK – to press ahead and axe help for people unable to travel 21 metres unaided. Read the full DWP Consultation Response (PDF)
The DBC (a 50-organisation consortium of disability, advice and other organisations) has said the Government proposal will trap disabled people at home – denying work, education and other opportunities and the ability to be independent. Read the full DBC Response online
Claire Nurden, Co-Chair of the DBC said:
“We are extremely disappointed that the government has ignored grave concerns about the 20 metre rule… PIP is supposed to help those most in need but it is exactly these people that are now set to lose. We have been overwhelmed by the response we’ve had from disabled people who are terrified about what this rule will mean. Many will be at risk of losing jobs…Others will not be able to get to medical appointments, or will have to leave education.”
Disability activist Sue Marsh says:
“When the coalition government announced plans to scrap the Disability Living Allowance, and replace it with Personal Independence Payments they met with unprecedented opposition from sickness and disability campaigners and charities alike. Almost unanimously we told the government it was the wrong thing to do. But even when we won changes to the draft bill in the Lords, the government simply used an archaic parliamentary law to overturn all of our work. Sue Marsh – I support the Spartacus Report
Then, as if the original plans weren’t bad enough, without consulting anyone at all, they announced that they would also be slashing the qualifying threshold for mobility assessment from 50 metres to 20 metres. We are Spartacus – PIP
Again, campaigners and charities alike complained, again they won. We took the government to court and they had to back out and say they would run a consultation after all.
This new consultation had over 1100 responses – mainly from sick and disabled people or the DPOs and Charities that work for them. Of those 1100 responses, just 5 – yes 5 supported dropping the qualifying threshold from 50 metres to 20 metres. That’s a 60% reduction!!! Just imagine for a moment if the government announced they were going to raise the qualifying age for state pensions to 104!! That’s a 60% increase too and I imagine they’d be out of power by lunchtime. Jane Young – The PIP 20 Metre Rule Remains Intact
But most shockingly of all, the government clearly states that those responding to the consultation do not support the change. They clearly state that it will push costs elsewhere and reduce the capacity of sick and disabled people to get to their jobs. Yet they have decided to go ahead anyway.
Yet again, when it comes to sickness and disability issues, this government have decided to ignore all of the evidence, ignore all of the experts and ignore all of those affected. As a result, 428,000 people with serious disabilities or long term conditions will lose the support they rely.
From Sue Marsh, Stef Benstead and Sam Barnett-Cormack
So, yesterday, as most of you will know by now, representatives from Spartacus finally got to meet with Mark Hoban to discuss Employment and Support Allowance and Work Capability Assessments after almost a year of trying.
Other online groups representing sick and disabled people had felt very strongly before the meeting that it should be made explicitly clear that WCAs should be scrapped. They are unfit for purpose and no amount of tinkering with descriptors or processes will change that.
We agreed, but felt that for that approach to be credible, there had to be alternative suggestions in place. Happily, in just 24 hours, all of the online groups representing sick and disabled people were able to agree to this solution in time, meaning that we could go into the meeting with the whole weight of the online campaigning community behind us.
We agreed that we would raise the issues people had agreed in extensive consultations on my blog to be the most important and “listen” to what the minister said on these issues, suggesting things that could at least make the process safer in the meantime until we were able to put together an alternative proposal.
With this in mind, here is a summary of the issues we raised and Mr Hoban’s responses. We feel that the meeting was remarkably productive in this sense.
“Before any further discussions took place, Sam explained that there was widespread support for abolishing WCAs. The system causes stress, fear and anxiety, it is not trusted and we doubt that any amount of “reform” would now be able to change that.
Sue opened the meeting by saying that we hoped we could break down the oppositional, partisan and confrontational stance that has often blighted discussions over ESA. She asked for genuine engagement. She pointed out that we had only ever tried to present helpful, evidence based research, aimed at showing how WCAs affect real people. She suggested that we all had experts and networks that could be valuable in re-designing a new system.
Mr Hoban appeared to listen carefully. He and three civil servants all took notes during the meeting. They did seem to genuinely want to discuss issues openly with us. We’re delighted to say that the meeting had none of the frustrating stonewalling or fudging of some parliamentary debates.
45 minutes passed in the blink of an eye and sadly, though we did ask the questions, there was no time to pin down answers on where things stand on mental health assessments/champions and the decision to divide physical and cognitive conditions when it comes to scoring points during an assessment. However, the Chief Medical Officer gave us his card at the end of the meeting and we agreed to chase up or define any issues that we weren’t clear on, so this will be an opportunity to clarify.
Mr Hoban appeared to particularly agree on gathering medical evidence earlier in ALL claims. Civil servants confirmed that an ESA113 was only sent to GPs in limited circumstances. Mr Hoban agreed that medical evidence was crucial at the earliest stage andaccepted that sending an ESA113 in ALL cases as soon as the claim is received might be a solution. They accepted that GPs don’t always return this evidence and agreed to do more to make sure that they do.
Sue suggested that explaining and suggesting the use of “Reliably Repeatedly and Safely” on the ESA50 form more often would be very helpful and Mr Hoban appeared to agree that this would be a helpful change. He particularly agreed that there is a need for more guidance to help people complete their forms in a way that would ensure they give the information needed to make decisions. He told a story of one of his own constituents who had filled in the form particularly badly. He said he thought he could have done a better job himself after just 5 minutes with the constituent and that it was clear much more guidance could be included to help with the process. They committed to looking again at what could be done with some urgency.
We asked about universal audio recording of assessments and urged that this was the only way to truly know that assessments had been conducted fairly and accurately. Mr Hoban was not entirely convinced that this was the case and cited examples of HMRC losing audio files, which had created even more suspicion. He didn’t rule it out however, and did say that letters would be amended to say that the option was available to all claimants.
We asked about the Evidence Based Review (EBR) and trials of new descriptors for Mental Health and Fluctuating conditions. It was clear from the civil servants that this was taking longer than they had originally envisioned. It had proved harder than anticipated to develop robust descriptors that claimants could
be compared against and which could be tested; some of the original submissions had been too vague to be of practical use. They did agree that so far it is clear that lessons can be learned from this alternative assessment. Sue asked what would happen if the new descriptors were more generous to claimants and would cost more to implement. Would they say it was just too expensive or would the Treasury veto any changes? Mr Hoban confirmed that they would do what was right. There was no financial limit on how generous a new set of descriptors might be and these will be based on evidence not cost. He cited examples of more people going into the Support Group and how that had cost over a billion pounds extra in the first year, but that it had been accepted financially.
Mr Hoban was particularly concerned by how long it was taking to assess people. He said that he was concerned about what is right even when improvements are difficult to implement and is keen to learn what works and doesn’t work so that the process can be improved. He wants to see a test that is robust, is the right test and has credibility. If changes are identified that would improve the system, then the DWP accepts that. He said that the EBR is a good example of that, as it has proved harder to run than originally anticipated but the DWP will use the evidence from the EBR to improve ESA. There are no financial limits from the Treasury, and no consideration of cost will be used to decide which descriptors are the best to use.
Sue mentioned concern about targets. Mr Hoban said DWP set no targets. He said they are only concerned about quality. If an assessor was an outlier (ie putting more claimants into the Support Group or WRAG than colleagues) then it is not that the assessor is an “outlier” that matters but that a need to check his or her assessments are right was all that mattered; if the assessments were correct then it doesn’t matter that the assessor was an outlier. Mr Hoban was very clear that targets are the wrong thing, and that they have no place in a credible system. We suggested that Atos are using “norms” either way, even if not part of DWP guidance and it might be worth re-iterating with Atos that this shouldn’t be the case.
Sam mentioned concern that assessors are saying they are told to presume zero points and award points grudgingly. We want to see an inquisitorial approach, not adversarial. Sue said that the balance of comments from claimants is that the HCPs are trying to trip people up. but maybe all that is needed is to remind Atos that their role is not to be denying people points or benefits.
Press release from DPAC:
Disabled activists from grassroots campaigns Disabled People Against Cuts (DPAC), Black Triangle and Mental Health Resistance Network have occupied the BBC building in London to protest against the role the media are playing in worsening attitudes towards disabled people and a complete failure to give space to the realities of what this government are doing to disabled people.
Ironically just last week the BBC reported on a research report by Scope which highlighted how things have got worse for disabled people since the Paralympics, but the BBC themselves have contributed to this situation by a lack of balanced or accurate reporting. In fact their coverage of the research angered disabled people by spectacularly failing to draw any links between the worsening conditions disabled people are facing and government policy.
Despite the fact that Iain Duncan Smith has been pulled up before the Work and Pensions Select Committee for misrepresentation and manipulation of figures and statistics, the BBC continues to report information released by the DWP as fact.
This resulted in a situation over Easter weekend where disabled people, about to face an austerity armageddon with benefits and income essential for their survival brutally slashed away, also had to contend with national media coverage that encouraged a view of us as benefit scroungers and cheats. It has since been proven that information released by the DWP ahead of the changes in April such as the figures for all of those who had supposedly stopped ineligible claims for incapacity benefit due to the tightening up of the benefit system, were misrepresentations with no basis in evidence. Just the smallest amount of research would have revealed to the BBC that they were about to report lies as objective fact. In addition to the misrepresented figures and statistics which the BBC promoted, further weight was given to the government’s propaganda by the succession of government ministers who were then given air time to continue to peddle their falsheoods. Where people were invited on to present an alternative view, they were non-disabled people from national charities. Firstly these people do not represent us, and secondly there are many more informed disabled campaigners who could have exposed the lies and misrepresentations.
Time and again the government and front bench Ministers have lied to justify policies which are causing the deaths of disabled people. Only last week the Disability News Service has had to raise formal complaints against the DWP press office for deliberately presenting false information about the level of spending on disability in the UK. Meanwhile the situation in the UK has gained international notoriety. The UN are currently in the UK to investigate and report on what the UK is doing through its housing policies. Solidarity protests outside the British Embassy have been organised by supporters in Canada.
Yet time and again the BBC have not only failed to report on what is happening but to contribute to public ignorance of what is going and to inflame hostility with questions such as “Why can’t disabled people take their fair share?” It is well evidenced that disabled people are bearing the brunt of austerity measures with those with the highest level of support need being hit nineteen times harder than the average citizen. To even put the question why can’t we take our fair share is damaging and in contempt of disabled people’s basic rights to be treated with respect and free from hostility.