Artists join anti-cuts activists to boost fight to save ILF

Members of the disability arts movement came together with anti-cuts activists this week to look for a way to boost the fight to save the Independent Living Fund (ILF) from closure.

Writer-performers Penny Pepper and Sophie Partridge were at the huge new Shape Arts pop-up gallery in central London to describe what the closure of the fund would mean for them and other ILF-users.

Surrounded by striking pieces of disability art, they presented a series of interviews filmed by campaigning journalist Kate Belgrave, in which they discuss the importance of the fund in their lives, and what it would mean to them if it closed.

The coalition has said it will close ILF in April 2015, with responsibility for supporting users of the fund – and £300 million of non-ring-fenced funding – then passed to cash-strapped local authorities.

ILF acts as a top-up to social care provided by local authorities, and ensures that about 19,000 disabled people with the highest support needs can live independently in the community instead of in residential homes.

Pepper told the event, which was supported by Inclusion London, Shape Arts and Disabled People against Cuts (DPAC): “Without a PA, I don’t get out of bed. Without a PA I don’t create work. Multiply that by everyone’s lives and that is what we are facing.”

Partridge says in Belgrave’s films, recorded in January and June this year: “If you give us decent resources, we will add to the economy. We will play our part, but we have to have adequate resources.”

She describes how her personal assistants (PAs) do “everything physically that I can’t do for myself… getting up, going to the loo, washing, dressing, cooking for me, cutting my food up, cleaning, laundry, driving me in my van…

“I still need the same levels of assistance whatever I’m doing, so if I’m working or round at a friend’s I need them with me to do all those things.”

Partridge, who performed in the opening ceremony of last year’s Paralympic Games, says it is “too scary to contemplate” the thought of being forced into residential care, and adds: “One way or another we have to ensure that that doesn’t happen. We can’t go back 30-odd years.”

She tells Belgrave: “Homes don’t provide that level of care. That’s why we have the ILF, because our needs are high.”

Pepper tells Belgrave in her films, also recorded in January and June, that many ILF-users believe they will be faced with the choice of “neglect at home or residential care abuse. A lot of us are saying ‘neglect’”.

She adds: “The bizarre idea that you can eat sandwiches and lie in bed and use incontinence pads is coming our way.”

ILF pays “just under half” of the funding necessary to provide her with the “24/7” care and support she has been assessed as needing.

She says: “I would not be able to work without that funding. This is what is terrifying to me.”

Pepper says most ILF-users employ between two and four personal assistants. “That’s a lot of people who are going to lose their jobs.”

She adds: “I will take Islington council [her local authority] to court if I am forced into a residential home.”

Tracey Lazard, chief executive of Inclusion London, told the event: “ILF has transformed the lives of a whole generation of disabled people with the highest support needs.

“99 per cent of people out there don’t know about ILF. It is through this campaign that we are changing that.”

Ellen Clifford, a member of DPAC’s steering group, said: “We know that younger disabled people coming through are not having the same opportunities [because ILF has been closed to new members].

“They are not even having the opportunities of getting out of the house, let alone having a job.”

She told the audience that DPAC and other disabled people’s organisation such as Inclusion London, the Alliance for Inclusive Education and Norfolk Coalition of Disabled People were  organising a week of campaigning action – Freedom Drive 2013 – to take place across the country in the first week of September.

The week will focus on a new manifesto of demands around disability equality that will be used to lobby politicians in the run-up to the next election.

Lazard said afterwards that she hoped the disability arts world would play a key part in the campaign to save ILF.

She said: “I think having creative artists on board is a really powerful way of communicating messages and stories and I think it will engage a lot more disabled people and the public generally in this issue.”

A judge dismissed a judicial review in April of both the government’s decision late last year to close the fund and an earlier consultation on its plans.

But the five claimants – all ILF-users – have now secured the right to appeal the judge’s decision.

Papers handed to the court by the Department for Work and Pensions (DWP) as part of the case suggested the coalition would not provide enough funding for anything more than a “safety net” for former ILF-users, once it closed.

Many ILF-users had assumed that the £300 million in funding would continue to be handed to councils by the government in the years after 2016.

But the DWP papers suggest that this funding might last for just one year, 2015-16.

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Disabled people with highest needs ‘will lose 19 times more’ than average

Disabled people with the highest support needs will lose 19 times more than the average person as a result of “devastating” government cuts to services and benefits, according to a new report.

The report, A Fair Society? How the Cuts Target Disabled People, accuses the government of aiming the bulk of its cuts at areas that are “least likely to cause embarrassment” to MPs, even though these are areas that are “likely to be most socially damaging”.

The report, written for The Campaign for a Fair Society (CFS) – an alliance of disabled people and disability organisations – says that cuts to English local government and benefits make up more than half of all the coalition’s cuts, even though they represent only about a quarter of central government spending.

Because government cuts have been targeted on local government, the report argues, and more than three-fifths of council spending is on social care, the cuts “are not fair but targeted, and they target people in poverty, disabled people and their families”.

Jim Elder-Woodward, a leading disabled campaigner and chair of CFS’s UK steering group, said the report showed the government was targeting disabled people and those on welfare and that the cuts were “unjustified, unfair and extremely dangerous”.

He said: “There are much more humane ways of cutting the deficit, other than cutting the lifelines to so many vulnerable people.”

And he accused the government of “vilifying and stigmatising” those on welfare as “lazy scroungers” and “scoundrels, crooks and n’er-do-wells”.

Dr Simon Duffy, director of The Centre for Welfare Reform, who wrote the report, suggested that spending on social care would be cut by as much as 50 per cent by 2018.

He says in the report: “It is difficult to overstate the problem here. These kinds of cuts (cuts to services that have historically always been under-funded) are devastating.”

The report points to cuts to funding for voluntary organisations, care and support and supported housing, and benefit cuts such as the closure of the Independent Living Fund, cuts to disability living allowance spending as it is replaced by personal independence payment, and the time-limiting and means-testing of employment and support allowance.

Duffy calculates that the poorest 21 per cent of the population will bear 39 per cent of the government’s cuts, while disabled people (eight per cent of the population) will bear 29 per cent of the cuts, and disabled people with the highest support needs (two per cent of the population) will bear 15 per cent of the cuts.

He says the combination of cuts to benefits and services means disabled people will lose an average £4,410 per person – nine times more than the burden placed on the average person.

And the two per cent with the highest support needs will lose an average of £8,832 per person – 19 times more than the burden placed on the average person.

The report repeats the call by opposition MPs and many disabled activists for the government to carry out an assessment of the cumulative impact of all of its cuts on disabled people.

It also calls for a halt to the cuts and a fairer and more sustainable welfare system.

Meanwhile, a new report by five disability charities – Scope, Mencap, National Autistic Society, Sense and Leonard Cheshire Disability – says the social care system for working-age disabled adults is underfunded by at least £1.2 billion a year.

A survey of more than 600 disabled adults for the report found over a third (36 per cent) said that – because of the withdrawal of funding for their support – they were unable to fulfil basic personal care tasks such as washing once a day, getting dressed or leaving the house.

One in three said they had fallen into debt in order to pay for their care.

Research commissioned by Scope suggested that an anticipated government decision to restrict council-funded care to those with “substantial” needs – as part of its new care and support reforms – would mean more than 100,000 people with “moderate” needs would be at risk of not getting the basic support they needed to help them eat, wash and leave their homes.

Setting the eligibility threshold at the “moderate” level of need – rather than substantial – for working-age disabled people would cost an extra £1.2 billion a year, says the report.

16 January 2013

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DWP blocks vital detail on ILF consultation

The Department for Work and Pensions (DWP) has refused to say how many disabled people who took part in a major public consultation were opposed to its decision to close the Independent Living Fund (ILF).

Esther McVey, the Conservative minister for disabled people, confirmed last month that ILF would close in April 2015, with funding passed to local authorities and the devolved administrations in Scotland, Wales and Northern Ireland, although this money will not be ring-fenced.

DWP has admitted that a “significant majority” of individuals who responded to the consultation were opposed to closure, but it is refusing to say exactly how strong that opposition was.

This mirrors its decision to block the release of individual responses to its disability living allowance consultation, which disabled activists say was also to prevent the true scale of opposition from becoming known.

DWP has admitted receiving about 2,000 responses to the ILF consultation, including 96 written responses from disabled people’s organisations, 78 from local authorities and 14 from other organisations.

There were hundreds of other responses from individual disabled people, including more than 400 from ILF-users and their representatives who attended consultation events.

But in response to a Freedom of Information Act request from disabled activist Linda Burnip, a co-founder of Disabled People Against Cuts, DWP claimed most respondents to the ILF consultation provided “lengthy, detailed and nuanced responses” and so it was “not possible to provide meaningful statistics on how many responses held particular beliefs or raised particular arguments or opinions”.

Burnip said: “How can they say the outcome of the consultation is that the ILF is going to close when they can’t give us any quantitative data to say how many people or local authorities were in favour of transferring the money to local authorities?

“I think this reinforces the case that government consultations are a total sham, and that the government makes the decisions beforehand.”

Many activists believe the plans to close ILF – a government-funded trust which helps about 19,000 disabled people with the highest support needs – threaten disabled people’s right to independent living.

They say the government has offered no details on how councils would be able to meet the extra costs of people with high support needs who previously received ILF money, most of whom receive both ILF and council funding.

The government’s failure to provide a proper account of the ILF consultation is now likely to be used as evidence in a legal action being taken by ILF-users who want the courts to declare the consultation unlawful.

A DWP spokesman said: “Respondents were free to respond to the questions with any answer they wished and were not constrained to simple ‘Yes’ or ‘No’ answers.

“The overwhelming majority of respondents chose to provide longer responses with many expressing mixed feelings about the proposals or laying out conditions on which they would support it.

“Such responses cannot be simply categorised as ‘supportive’ or ‘opposing’ nor is it always clear when a respondent is intending to provide a ‘mixed’ response.

“We have provided in the government’s response a qualitative assessment of the opinions and arguments expressed by respondents with a high level assessment of the strength and extent of support for them.”

10 January 2013

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ILF closure is ‘new nail in the coffin’ of independent living

The government has confirmed it is to close the Independent Living Fund (ILF) in April 2015, and has admitted the decision will have a “potential negative impact” on disabled people supported by the fund.

Outraged campaigners say the move comes despite “overwhelming opposition” from disabled people and their families.

The closure of ILF will see funding passed to local authorities and the devolved administrations in Scotland, Wales and Northern Ireland, but that money will not be ring-fenced.

Local authorities will then have “sole responsibility for meeting the eligible care and support needs of current ILF users” in England, while the devolved administrations will decide how to support those within their own care and support systems.

But the government has admitted – in its response to a consultation on the plans – that ILF users “may face reductions or alterations in their care package due to the reform”.

Esther McVey, the Conservative minister for disabled people, said the government believed that “the needs of current users could be met in a more consistent and effective way within a single cohesive system”.

Local authorities have already stated that when ILF-users transfer into the local authority system in 2015, the pot of money they are awarded by their council to meet their support costs will probably be lower than they currently receive, with some forced to rely on relatives or charities.

The Department for Work and Pensions admitted that a “significant majority” of individuals who responded to the consultation were opposed to closure, although “a significant minority said they would be happy with local authorities taking control of the funding if it could be guaranteed that their care packages would remain the same”.

Most local authorities “expressed strong support” for the closure, according to the government.

But many activists believe the plans to close ILF – a government-funded trust which helps about 19,100 disabled people with the highest support needs – threaten disabled people’s right to independent living.

They say the government has offered no details on how councils would be able to meet the extra costs of people with high support needs who previously received ILF money, most of whom also receive both ILF and council funding.

Anne Pridmore, a leading disabled activist and one of the ILF-users taking legal action over the way the government consulted on scrapping the fund, said the government’s decision was “no great surprise”.

But she said the move would be “devastating” to her and others, and she pointed out that if it were implemented she would be unable to continue to take part in the many government consultation events she attends.

She said: “I will be able to do none of that in the future if I am relegated to an old people’s home, which seems to be the case.”

In a joint statement, Inclusion London and Disabled People Against Cuts said the confirmation of the closure had left disabled people with the highest support needs “in fear and distress”.

One ILF-user, Jenny Hurst, said she received a package of just four hours support a day before she was referred to the fund, “one hour for getting me up/showered and breakfasted, one hour for housework and lunch, one hour for supper and an hour to do the ‘put to bed’.

“In between times I couldn’t get a drink or use the toilet – let alone do anything meaningful with my life.”

With ILF support she has been able to go to university, secure a full-time job and become a charity trustee.

Kevin Caulfield, chair of Hammersmith and Fulham Coalition against Community Care Cuts, another ILF-user, said: “The announcement of the closure of the ILF is yet another nail in the coffin of the increasing numbers of disabled people being discarded into isolation, social exclusion, deteriorating health and premature death.

“This is more evidence that we are so far from being all in this together.”

Disability Rights UK said the decision to close ILF risked a return to “obligatory residential care home placements”.

Liz Sayce, chief executive of Disability Rights UK, said: “We are extremely concerned that the government is now adding to the enormous pressure on local authorities, disabled people and carers without taking steps to resolve the funding crisis.”

But one leading disabled activist – and ILF-user – has backed the decision to close ILF.

Simon Stevens, a disability consultant and trainer, said: “On paper it is the right move as it removes repetition, but the challenge is building a framework in the new arrangements that will stand the test of time.

“It’s what happens in 2018 and beyond we need to worry about when councils have full control.”

ILF will publish a “transition plan” early in 2013 describing “how users will be supported over the next two years in preparation for the transfer”.

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Courts to be asked to declare government’s ILF consultation unlawful

Six disabled people have launched a legal action over the government’s decision to scrap the Independent Living Fund (ILF).

They will ask the courts to declare that the coalition’s public consultation on the proposed closure – which ended last week – was unlawful, and that any decision based on the consultation would also be unlawful.

The case follows a series of high-profile judicial reviews of other such decisions by government departments and other public bodies to slash services and spending due to the coalition’s deficit reduction plan.

The proposed closure of the ILF will see funding passed to local authorities and the devolved administrations in Scotland, Wales and Northern Ireland.

But last week, councils admitted that when ILF-users transfer into the local authority system in 2015, the pot of money they are awarded by their council to meet their support costs will probably be lower than they currently receive, with some forced to rely on relatives or charities.

Anne Pridmore, a leading disabled activist and one of the six ILF-users taking the legal case, said: “I didn’t expect to be doing this in my 73rd year.

“Sometimes I think to myself ‘why am I doing this?’ because I probably only have two years left in my own home. They will put me in residential care because there is no way the council will pay the other half of my care package [the half currently covered by ILF].

“I just feel if I didn’t do it I would be letting people down and letting myself down. I am getting to the end part of my life but there are a lot of younger disabled people who should be able to apply for the ILF and they have not been able to and will not in the future if something is not done to stop it closing.”

Activists say the plans to close the ILF – a government-funded trust which helps about 19,700 disabled people with the highest support needs – are a huge threat to disabled people’s right to independent living.

They say the money will not be ring-fenced when it is passed to local authorities, while the government’s consultation paper offered no details on how councils would be able to meet the extra costs of disabled people with high support needs who previously received ILF money.

Lawyers for the six ILF-users taking the case will argue that the Department for Work and Pensions (DWP) had failed to explain why the only option it offered in its consultation was to close the fund.

And they will say that the consultation document did not provide enough information about the difference between the ILF – which enables people to be independent, work and be full citizens – and local authority assessment and provision, which focuses on basic needs.

They will also argue that the government breached the Equality Act by failing to assess the impact of the closure on disabled people.

A DWP spokeswoman said: “We acknowledge the action being taken in relation to the recent consultation on the future of the Independent Living Fund by some of its users. The department will follow the correct procedure and respond in due course.”

18 October 2012

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Councils admit ILF closure could force reliance on families and charities

Local authorities have admitted that government plans to close the Independent Living Fund (ILF) in 2015 will probably see a cut to the support received by most of its users, with some forced to rely on relatives or charities.

Plans to close the fund, and transfer resources instead to local authorities in England and devolved governments in Scotland and Wales, have led to protests by ILF-users, who believe the plans threaten their right to independent living.

They warn that a government consultation on the plans offers no details on how cash-strapped councils will be able to meet the extra costs of disabled people who previously received support from ILF, a government-funded trust which helps about 19,700 disabled people with the highest support needs, most of whom receive both ILF and council funding.

This week, the Association of Directors of Adult Social Services (ADASS) and the Local Government Association (LGA) warned in a joint response to the consultation that ILF-users usually receive “a significantly higher level of funding” than disabled people who rely solely on a local authority support package.

They said that when ILF-users transfer into the local authority system in 2015, the pot of money they will be awarded by their council to meet their support costs will “generally be at a lower level” than the funding they received previously.

John Nawrockyi, joint chair of the ADASS physical disabilities network, said this was because councils may feel – according to the government’s Fair Access to Care Services guidelines – that they have to ensure ILF-users do not receive more generous support than other service-users with similar levels of need.

Nawrockyi, also director of adult social services for Greenwich council in London, said: “If you take this dispassionately… the ILF-holder should be treated the same as a non-ILF-holder.”

But he said it was “not impossible” that some councils could take a “more sympathetic” approach and “take account of people who have built their lives around a certain amount of ILF”.

The ADASS and LGA response says local authorities could offer “periods of protection” to ease former ILF-users towards a new smaller support package, but they warn that councils will need to balance such offers against the need for “equity in resource allocation”.

Councils are likely to offer former ILF-users “other forms of support, other community resources or more cost-effective ways of providing services”, the consultation response adds.

Nawrockyi said this could mean support from families or charities, but insisted that it should not mean ILF-users being forced into residential care.

Stuart Bracking, a DPAC member and ILF-user, was highly critical of the ADASS and LGA response.

He pointed to the admission in the response that ADASS and LGA had “made a significant contribution to shaping [the government] consultation document”, and he questioned why they had “produced a consultation response to their own document”.

He said ADASS and LGA clearly supported the closure of ILF, a process that would affect thousands of disabled people.

He said: “ADASS have a professional responsibility to protect and safeguard severely disabled people. This consultation response was exactly the opposite.

“One of the reasons why ILF had to be set up in the first place was the abject failure of local authorities to meet the needs of severely disabled people who had been institutionalised.

“It was only with the establishment of ILF that a whole generation have been able to be workers, parents, care-givers, volunteers, students, campaigners…

“If ILF is closed it will crush the lives of thousands and in effect close the door to any meaningful chance of a whole layer of disabled people to live independent lives in the future.”

11 October 2012

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MP calls for inquiry into police protest violence

An MP has called for an inquiry into the “violence” of police officers against disabled activists who took part in a protest at the Department for Work and Pensions (DWP).

The Labour MP John McDonnell made the call during a Commons debate on Atos Healthcare, the much-criticised company that carries out “fitness for work” assessments on disabled people.

He said he supported the groups that had organised five days of protests against Atos’s sponsorship of the London 2012 Paralympics, and said he was “calling for an inquiry into violence against people with disabilities who protested last week at the Department for Work and Pensions”.

Disabled People Against Cuts (DPAC), the grassroots campaign group that led the protest at the DWP’s Caxton House building in Whitehall on Friday, has welcomed McDonnell’s call.

DPAC’s steering group will be discussing McDonnell’s comments and a likely complaint to the Independent Police Complaints Commission at a meeting tonight (Friday).

One of the wheelchair-users who took part in the protest is already considering legal action against the Metropolitan police, after he was left with a fractured shoulder when officers tried to break up the peaceful protest.

Another protester, Adam Lotun, had to be held in his wheelchair by fellow activists as officers tried to drag his chair away.

DPAC said the police’s use of force was “excessive, unnecessary, reckless and contravened our right to peaceful protest”, and that it was “difficult to see the police response as anything other than an attempt to provoke a violent reaction from the protesters”.

It is the latest incident in which Metropolitan police officers have been accused of using excessive force against disabled activists, particularly those using wheelchairs.

The Caxton House action was part of a week of protests held to highlight Atos’s role in carrying out “fitness for work” assessments for the government, and widespread anger that the company has been a major sponsor of the London 2012 Paralympic Games.

Six DPAC activists – and two supporters – occupied the lobby of Caxton House, while four others chained themselves to each other to block the entrance.

They asked to see Maria Miller, at that point still the Conservative minister for disabled people – but were told she was not in the building – and delivered a series of demands, including that Atos should be removed from the contract to assess disabled people for their fitness for work, and that Miller should reverse her decision to close the Independent Living Fund.

Earlier, there had been a “fabulous and joyous” action organised by DPAC and the mainstream protest group UK Uncut outside the London headquarters of Atos, as the final element in a week of protests they called the “Atos Games”.

Hundreds of campaigners fired water pistols, party poppers, blew bubbles, threw water balloons, and performed Atos-style “miracles” to satirise the company’s apparent ability to cure people’s health conditions.

A small group of protesters then left to target the DWP’s Caxton House offices in Westminster, and were later joined by many more of those who had taken part in the earlier protest, including many prominent DPAC members.

But DPAC activists were astonished at how the police responded to the DWP protest.

DPAC has been involved in a series of high-profile direct actions over the last year, and had developed a friendly working relationship with senior officers from the Metropolitan police.

But that appeared to change on Friday afternoon.

Lotun, one of the wheelchair-users who was caught in the crush, said: “I was the first one the police collided into. They knew there were five wheelchair-users in front of them. To get past them they were really going to have to rough-house them.”

He said police tried to pull him out of his wheelchair, which was damaged. He said the Met needed to produce a policy urgently on how to deal with wheelchair-users and other disabled people during protests.

He said: “They do really need to know how they are going to deal with disabled people. People in wheelchairs are going to get hurt. They are not going to get out of the way.”

Andy Greene, one of the DPAC activists who had blocked the doors of Caxton House, said a row of police officers “pushed and pushed and pushed” the protesters towards another line of officers who were already positioned in front of the doors.

He said: “We were staggered by the response, by the physicality, it was so out of left field.”

Despite shouted warnings that there were disabled people with hidden impairments in the crowd, he said, the police continued to squeeze the protesters.

But DPAC say some officers were even more aggressive, with one grabbing a man with learning difficulties around the neck and pushing him against a wall, before being pulled away by a colleague.

Greene said there had not been any trouble in a string of previous DPAC protests over the last year.

“We have not had one incident or trouble at any time. The police have [until this protest] been fantastic.

“Every other time the police have been engaging, conversational and instructive but yesterday they actually ignored us for the first hour.”

A police spokeswoman said that one man was arrested for breach of the peace and obstructing police. He was taken to a police station and later bailed to return to another station in October.

She said that officers deployed to “unplanned protests” would “always make a dynamic assessment of the situation being policed, and will take into account the environment, type of protest, intentions of the crowd and circumstances of those protesting”.

But she said that “all police officers are accountable for their actions”, and added: “Anyone who is unhappy with any aspect of the policing of an event should contact the Metropolitan Police Service so any complaints can be thoroughly investigated”.

Police have so far failed to comment on McDonnell’s calls for an inquiry.

Meanwhile, Lotun has announced that he will stand as an independent candidate at the by-election in Corby on 15 November, caused by the decision of the Conservative MP Louise Mensch to stand down.

Lotun’s wide-ranging manifesto calls for welfare reforms that are “fair to all and fit for purpose”, criticises cuts to disability benefits, and calls for legalisation of cannabis use for medicinal purposes.

He said he was standing on a platform of “anti-discrimination, anti-cuts, anti-warfare and a return to common sense leadership”.

Among his policies he wants to scrap the “fitness for work” assessment and remove the contract to carry it out from Atos.

He said he had already secured support from some Liberal Democrats.

He added: “I am fighting for common sense, not just for disabled people.”

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