We might be disabled, but we still badly need our independence

Iain Duncan Smith is axing the independent living fund, which gives thousands of people valuable but simple freedoms. This is why we are protesting



Almost 29 years ago, on a grey day in August 1985, I moved to east London from a council estate in the Chilterns. I was in my mid-20s and had fought, with many tears, to be "allowed" to do this. I am disabled, a wheelchair user, and independence from the family home came after four years of constant battles with social workers. That I succeeded is perhaps more to do with youthful bravado than any consciously successful plan – that, and the support of my mum.

Until this time, my mum had been my full-time carer, all the while bearing the weight of a family of six. She helped me to wash and dress, eat and drink, use the toilet, and move in and out of bed. A charity raised funds for me to buy me a scooter. In my punky-goth clothes I would go into the village with my mum, once a week. That was my life. It was scarcely an existence.

Growing up, there was never any doubt mum would care for me until she died, or I did. I would never be shoved into the dreaded care home. Then I met K, a like-minded disabled mutineer, who became a close friend and shared my urge to escape. We started writing up a storm – fiction, poetry, you name it – and by 1985 had made a tentative move into the burgeoning disability arts scene. But when we moved, we were still beginners in terms of independent living.

The Independent Living (IL) movement came out of the US in the late 1960s as part of the wave of civil rights movements. Activists such as Ed Roberts, often deemed the father of independent living, called for disabled people to have more self-determination, to move away from the notion that "experts" are needed to look after us, instead giving choice and control directly to disabled people. These ideas began to hit the UK in the early 1980s. Disabled activists pushed for a move away from a patriarchal approach to social care to one which was user-led; a shift "from institutions to community", as a piece by John Evans, an early advocate of IL, was titled.

The movement experienced a great leap in 1988, when the independent living fund (ILF) came into being. This promised to deliver "financial support to disabled people so they can choose to live in their communities rather than in residential care".

In 2016, under the direction of Iain Duncan Smith, the ILF is set to close. This leaves its users with an axe over our heads. The Department for Work and Pensions has suggested that we are an "elite", taking too much of a shrinking social care cake. We are not elite. We are fighting simply to stay in our homes, to avoid going into abuse-riddled institutions, or to fall back on our over-stretched families – primarily, our mothers.

Let's not fool ourselves: when the ILF closes, women will once more be at risk of absorbing this obligation. Statistics show women already account for 58% of carers.

Over the past 29 years I have had the simple freedoms to choose what to wear and when to go to bed, the support to work, and to have a social life – and with these freedoms, my mum has had hers restored too. I am her daughter again, not a default, dependent burden; we have a wonderfully fun and loving relationship.

My mum wrote to her MP, Neil Parish, in 2013 voicing her concerns about the ILF closure. He passed the letter on to then minister for disabled people, Esther McVey. In her reply, McVey opined that "while I understand her concerns, it is too simplistic to consider all residential settings as environments that undermine independence". To put it mildly, my mum was not pleased with the response, or to being told she had simplistic views.

This is one of the many reasons why disabled activists are going to the DWP today, to protest with comrades at the IL Tea Party. I will do some performance poetry. There will be noise and cake. My mum, almost 78, will be there beside me, in support. She is still determined I will not be institutionalised – still my rock.

http://www.theguardian.com/commentisfree/2014/jul/04/disabled-independence-iain-duncan-smith-axing-independent-living-fund

Ian Duncan Smith is THE most revolting man in Government. The sooner he goes the better.

Almost 29 years ago, on a grey day in August 1985, I moved to east London from a council estate in the Chilterns. I was in my mid-20s and had fought, with many tears, to be "allowed" to do this. I am disabled, a wheelchair user, and independence from the family home came after four years of constant battles with social workers. That I succeeded is perhaps more to do with youthful bravado than any consciously successful plan – that, and the support of my mum.


Well done. It seems this person never needed the independent living fund one little bit.

BigAndy9 wrote:Almost 29 years ago, on a grey day in August 1985, I moved to east London from a council estate in the Chilterns. I was in my mid-20s and had fought, with many tears, to be "allowed" to do this. I am disabled, a wheelchair user, and independence from the family home came after four years of constant battles with social workers. That I succeeded is perhaps more to do with youthful bravado than any consciously successful plan – that, and the support of my mum.


Well done.  It seems this person never needed the independent living fund one little bit.

You are an idiot, it was the independendent living fund that allowed her to do it.

more to do with youthful bravado than any consciously successful plan – that, and the support of my mum.

Pillock

And all that before the ILF even started!

But the allowance was there under another name. In 1985 people were paid sickness benefit and those who could not work because of disability or illness for long term were also paid Invalidity Benefit.

They still get benefits don't they?

Raggamuffin wrote:They still get benefits don't they?

I suspect the disabled get much more now than they did in 1985.

Not only that but the rest of the country has also adapted to their needs. Hopefully, and i'm sure this is the case, it makes their life much easier.

Oh for goodness sake sometimes people make want to tear my hair out with frustration.

The ILF was never a "benefit" under this name or any other name. It is exactly what the name says - a fund to help people with the costs of living independently.

It did not exist when the story began. Nor was there anything like it. There were other funds people could apply for.

Can people please please get their heads sorted on how disability and money work.

There are cost of living benefits - JSA or ESA or income support. These apply to all people disabled or not who do not or cannot gain an income from working. Which one is awarded depends on circumstances. All are means tested.

There are disability benefits which are awarded to try and compensate for the inevitable added costs that being disabled brings and which are intended to try and allow a disabled person to achieve the same standard of living as a non disabled person with an equal living income. These are DLA now being changed to PIP. They are not means tested - or should not be but that is another matter. They depend on disability not income - so a person may be disabled and working and will still qualify.

There are one off lump sums to pay for one off expenses - like the ILF.

So if you take Jonny an 22 year old man who is a wheelchair user and unemployed living with his parents in a village.

He gets JSA because he does not have a job but is fit for work and actively seeking work.
He gets DLA because he has severely restricted mobility.
He gets an grant from the ILF to allow him to move to his own place in a town - it pays for adaptations to a flat to allow him to live there alone - things like lower worktops, light switches, turning the bathroom into a wet room, and providing a ramp instead of steps.

Once he has moved to town he is able to find work at which point his JSA stops because he is earning, his DLA continues because his disability is the same, and the grant to adapt his new home was a one off.

ILF has got nothing to do with living costs or working.
DLA/PIP has got nothing to do with working.

JSA and ESA can be contribution based - ie, not means tested - for a while anyway.

sphinx wrote:Oh for goodness sake sometimes people make want to tear my hair out with frustration.

The ILF was never a "benefit" under this name or any other name.  It is exactly what the name says - a fund to help people with the costs of living independently.

It did not exist when the story began.  Nor was there anything like it.  There were other funds people could apply for.

Can people please please get their heads sorted on how disability and money work.

There are cost of living benefits - JSA or ESA or income support.  These apply to all people disabled or not who do not or cannot gain an income from working.  Which one is awarded depends on circumstances.  All are means tested.

There are disability benefits which are awarded to try and compensate for the inevitable added costs that being disabled brings and which are intended to try and allow a disabled person to achieve the same standard of living as a non disabled person with an equal living income.  These are DLA now being changed to PIP.  They are not means tested - or should not be but that is another matter.  They depend on disability not income - so a person may be disabled and working and will still qualify.

There are one off lump sums to pay for one off expenses - like the ILF.

So if you take Jonny an 22 year old man who is a wheelchair user and unemployed living with his parents in a village.

He gets JSA because he does not have a job but is fit for work and actively seeking work.
He gets DLA because he has severely restricted mobility.
He gets an grant from the ILF to allow him to move to his own place in a town - it pays for adaptations to a flat to allow him to live there alone - things like lower worktops, light switches, turning the bathroom into a wet room, and providing a ramp instead of steps.

Once he has moved to town he is able to find work at which point his JSA stops because he is earning, his DLA continues because his disability is the same, and the grant to adapt his new home was a one off.

ILF has got nothing to do with living costs or working.
DLA/PIP has got nothing to do with working.

So your point is?

So Jonny gets HB as well?

My point Andy is that in order to discuss a subject properly people need to have a basic understanding of said subject. While people are taking the stance that DLA is something to do with being out of work and that the ILF is a benefit any points they come up with are going to be wrong because their starting point was wrong.

Ragga - Jonny did not necessarily get housing benefit. While living with his parents he would not be entitled. If the reason for him moving to the town and the adapted flat was a solid offer of work with a starting date linked to his moving in to the adapted flat then he may pay his first months rent out of savings or his parents may pay it for him as a housewarming gift and so never claim HB

It's not surprising that some people can't follow all this stuff. There are so many different benefits for disability/illness, and they keep changing them!

Raggamuffin wrote:It's not surprising that some people can't follow all this stuff. There are so many different benefits for disability/illness, and they keep changing them!

You will hear no argument from me on that. I mean I think I think it is safe to say I am reasonably intelligent, and I can promise you I am familiar with the benefits system however I struggle to work out what an individual entitlement is because of the rules and formulae as well as the huge number of different benefits. The advisers tell you what a computer tells them - they do not work it out themselves. Until recently as much money was lost through the benefit system through system error as through claimant error - and added together they were more than the amount lost through fraud.

This is one of the reasons I believe that Universal Credit must go through - I am well aware there have been issues but it makes me mad that the pressure groups have all used the issues as a reason to try and derail the whole thing rather than offering their admittedly superior knowledge of the details to fix the issues. Universal credit wipes out the whole mixture of different benefits (apart from the pure disability benefits which are not means tested anyway) and replaces it with a single benefit and the formula is so simple primary school kids can do it (you keep the first £56 a week of earnings and for all earnings above that you loose 70% of the amount from your benefits). It will be cheaper to run, less subject to system error, and ensures that working always pays - unlike the current system.

Interesting point, folks (at least the point I'm getting from all of it). There are some here in the States, even on the right, who favor a $10,000 government benefit basically just for being a living American citizen; they think it would reduce the size of government while still providing for the needy. I'm not sure if the figure is big enough, but it's an interesting thought nonetheless.

I think some of the complexity within benefits systems is actually put into place by politicians on the right. The harder it is to fathom the system, the easier it is to deny benefits to people, and let's face it -- it doesn't matter how many benefits you qualify for, if most people can't understand them then most people aren't going to claim them. We went through this with George W. Bush's Medicare Part D, which in name helped low-income people but in practice was far too labyrinthine for many to take advantage of. I don't think they were too dumb to make a better system, I think they made it incomprehensible by design.

Speaking of which, who here has ever claimed a mail-in rebate? It makes the offer sound better, but at the end of the day probably a lot of them are not paid out.

Ben_Reilly wrote:Interesting point, folks (at least the point I'm getting from all of it). There are some here in the States, even on the right, who favor a $10,000 government benefit basically just for being a living American citizen; they think it would reduce the size of government while still providing for the needy. I'm not sure if the figure is big enough, but it's an interesting thought nonetheless.

I think some of the complexity within benefits systems is actually put into place by politicians on the right. The harder it is to fathom the system, the easier it is to deny benefits to people, and let's face it -- it doesn't matter how many benefits you qualify for, if most people can't understand them then most people aren't going to claim them. We went through this with George W. Bush's Medicare Part D, which in name helped low-income people but in practice was far too labyrinthine for many to take advantage of. I don't think they were too dumb to make a better system, I think they made it incomprehensible by design.

Speaking of which, who here has ever claimed a mail-in rebate? It makes the offer sound better, but at the end of the day probably a lot of them are not paid out.

Again highlighting the problems of using left and right as descriptors on this forum where half the members are from the UK.

It was the British right which introduced DLA - the benefit which clearly recognized the simple fact that being disabled costs money and which attempted to go some way to equalizing that. The ILF itself came in under a right government.

It is the current right government which has said they want the clear out the mess of means tested benefits (provided by different agencies with different qualifying criteria paid on different schedules with different formulae for calculating) and replace them with one single benefit. It is our left who are promising to stop this happening.

OK the current right government are messing around with the disability benefits changing DLA for PIP and getting rid of ILF but the last left government also played nasty changing the living costs disability benefit for one with harder qualifying criteria - my point is blaming right or left from a US stand point is at best pointless and at worst inaccurate for the British members although of course for those with political leanings anything condemning the wrong side is held up regardless of how accurate it is.

BigAndy9 wrote:

Raggamuffin wrote:
They still get benefits don't they?

I suspect the disabled get much more now than they did in 1985.

Not only that but the rest of the country has also adapted to their needs.  Hopefully, and i'm sure this is the case, it makes their life much easier.

  

Fuck Me Roan !!!

JUST how pathetically stupid and dense can B'Andy behave, when he so chooses to do so..

TALK about forever acting the consummate all-round fool on here !

AND up to his usual bad taste standards..   

Raggamuffin wrote:
It's not surprising that some people can't follow all this stuff. There are so many different benefits for disability/illness, and they keep changing them!

  

AUSTRALIA has a similar problem, though not quite as complicated as the UK's - with something like 23 different classes of welfare payments (72 when you get down into sub-categories !).

THE Abbott-Hockey Tory guvm'nt wants to cut that back to 4 or 5 basic payments..

WELFARE and community groups are obviously preparing to fight to try and prevent too many innocent people being screwed over by those proposed government changes.

SAME as is currently happening over there in Britain.   

sphinx wrote:My point Andy is that in order to discuss a subject properly people need to have a basic understanding of said subject.  While people are taking the stance that DLA is something to do with being out of work and that the ILF is a benefit any points they come up with are going to be wrong because their starting point was wrong.

Ragga - Jonny did not necessarily get housing benefit.  While living with his parents he would not be entitled.  If the reason for him moving to the town and the adapted flat was a solid offer of work with a starting date linked to his moving in to the adapted flat then he may pay his first months rent out of savings or his parents may pay it for him as a housewarming gift and so never claim HB

.thats not the reality for every young lad though is it?, they won't all have parents who will help them out or have savings of their own.

sphinx wrote:

Ben_Reilly wrote:Interesting point, folks (at least the point I'm getting from all of it). There are some here in the States, even on the right, who favor a $10,000 government benefit basically just for being a living American citizen; they think it would reduce the size of government while still providing for the needy. I'm not sure if the figure is big enough, but it's an interesting thought nonetheless.

I think some of the complexity within benefits systems is actually put into place by politicians on the right. The harder it is to fathom the system, the easier it is to deny benefits to people, and let's face it -- it doesn't matter how many benefits you qualify for, if most people can't understand them then most people aren't going to claim them. We went through this with George W. Bush's Medicare Part D, which in name helped low-income people but in practice was far too labyrinthine for many to take advantage of. I don't think they were too dumb to make a better system, I think they made it incomprehensible by design.

Speaking of which, who here has ever claimed a mail-in rebate? It makes the offer sound better, but at the end of the day probably a lot of them are not paid out.

Again highlighting the problems of using left and right as descriptors on this forum where half the members are from the UK.

It was the British right which introduced DLA - the benefit which clearly recognized the simple fact that being disabled costs money and which attempted to go some way to equalizing that.  The ILF itself came in under a right government.

It is the current right government which has said they want the clear out the mess of means tested benefits (provided by different agencies with different qualifying criteria paid on different schedules with different formulae for calculating) and replace them with one single benefit.  It is our left who are promising to stop this happening.

OK the current right government are messing around with the disability benefits changing DLA for PIP and getting rid of ILF but the last left government also played nasty changing the living costs disability benefit for one with harder qualifying criteria - my point is blaming right or left from a US stand point is at best pointless and at worst inaccurate for the British members although of course for those with political leanings anything condemning the wrong side is held up regardless of how accurate it is.

Excellent post and sadly I feel both political sides tend to use poorly those with disabilities to point score against each other thus not actually helping the situation. No matter the disability, everyone should be able to lead as normal a life as humanly possible. People should be encouraged to lead as normal a life as possible and not be made to feel they need constant looking after, as how is that helping anyone with such restrictions in life.

Again political bodies should not use people with disabilities to point score, they should be universal in agreement.

Lone wolf - how the hell is it screwing vulnerable people over to say look instead of having to navigate your way through 23 or more benefits which even trained staff cannot work out unassisted you only have to claim one main one which you can work out yourself?

Which is more likely to leave a vulnerable person struggling and not getting what they are legally entitled to - having to claim 4 different benefits from 3 different agencies just to cover ordinary living costs or having to claim one over all payment from one place?

JD -the argument was theoretical, Jonny does not exist I was using him to demonstrate the different disability payments. I considered that introducing HB would complicate the matter further so offered a possible scenario where HB would be unnecessary to keep the emphasis on the difference between cost of living benefits and those covering the inevitable extra costs of being disabled.

The Independent Living Fund has nothing to do with PIP or DLA, it is a fund that is there to help people who are so disabled that before they had to live in and institution, have help to live independently.

1. Overview

The Independent Living Fund (ILF) provides money to help disabled people live an independent life in the community rather than in residential care.

You can use payments from the ILF to:

employ a carer or personal assistant to give you personal and domestic care
pay a care agency to provide personal care and help with domestic duties

The ILF is permanently closed to new applications.
https://www.gov.uk/independent-livingfund/overview

Those costs will not be covered by PIP and disability charities are saying that people will again be institutionalised or have to have their families care for them again and loose their independence.



Campaigners launch new legal bid to halt Independent Living Fund closure
Posted by Melanie Brown on Friday, 11 April 2014 in Disability in the News

Users of the Independent Living Fund (ILF) have launched a fresh legal bid to halt its closure, Disability News Service can reveal.

Three ILF-users are threatening a second judicial review of the coalition's decision to close the fund, a government-funded trust which helps about 18,000 disabled people with the highest support needs to live independently.

Many campaigners believed the battle had been won when five ILF-users secured a high-profile court of appeal victory last November over the closure decision.

But despite the court ruling that Esther McVey - at the time the minister for disabled people - had breached the Equality Act’s public sector equality duty, the judgment meant only that the government had to reconsider its decision, this time paying "proper attention" to its legal obligations.

Mike Penning, the new minister, told MPs on 6 March that he had done just that and had decided to go ahead with the original decision to close ILF and transfer non-ring-fenced funding to local authorities, although he delayed the closure date by three months until 30 June 2015.

Now three of the disabled campaigners who took the original court action - Stuart Bracking, Gabriel Pepper and Paris L'Amour - are renewing their legal battle, and other ILF-users have expressed interest in joining them.

They say that Penning has breached the public sector equality duty in a similar way to McVey.

They claim that his department's latest equality analysis fails to reflect what the court of appeal described as "the inevitable and considerable adverse impact which the closure of the fund will have".

They have written a "letter before claim" to the Department for Work and Pensions, calling on it to withdraw its closure decision, which they say is unlawful.

If Penning fails to act, they could seek a fresh judicial review in the high court.

Louise Whitfield, of solicitors Deighton Pierce Glynn, who represents the three ILF-users, said today (11 April): "I think there is a realistic hope that this will halt the closure.

"My clients' concerns are so grave about the implications of closing the fund that they still feel it is essential that the government have a real hard look at what the impact would be on severely disabled people, and that just hasn't happened.

"There is no real recognition that this is going to be devastating for large numbers of severely disabled people."

News of the latest court action came as ILF-users called on the disability movement to show its support for their fight against closure on a European day of action.

They want fellow ILF-users and their families, disability organisations and disabled activists in the UK to join organisations across Europe that will be highlighting the impact of austerity cuts on the lives of disabled people.

The European Network on Independent Living (ENIL) is organising the first European Independent Living Day on 5 May, the culmination of its Stop Disability Cuts campaign.

It wants disabled people and their organisations to hold meetings, protests, marches or even flash mobs simultaneously in cities throughout Europe, while ENIL will organise a press conference in Brussels on the same day.

Three of the five ILF-users who beat the government in court - Bracking, Pepper and Anne Pridmore - have published a statement calling on the movement to support European Independent Living Day as part of the campaign to save ILF.

That call has been backed by more than 100 ILF-users, relatives, disabled people's organisations and activists.

Bracking said that people were "terrified" about the impact of the closure on their lives, and added: "I think that is part of the tactics of the Department for Work and Pensions because fear paralyses people and stops them responding and fighting back."

But he said that saving ILF could be a historic achievement, so members of the disability movement need to "fight as hard as we can".

He said: "It is important to try to encourage formation of campaign groups, however limited, across the country.

"We can turn this around. The effects are so dreadful on disabled people's lives, and the closure date is still 15 months away.

"The issue for politicians will be whether they can hold their nerve. As it gets closer, more and more people will wake up to what it is going to mean for them."

Even small public events on 5 May will raise awareness of the need to oppose the closure, and other cuts to services and benefits, he said.

In a statement accompanying the call to action on 5 May, Bracking, Pepper and Pridmore warn: "The disabled people's movement across England, Wales, Scotland and Northern Ireland has a proud history of campaigning for independent living rights, but the gains of a generation ago for disabled people of working age are now under threat, as are the social opportunities pursued by many disabled people with complex conditions."

They say the innovations of the independent living movement have been marginalised, while its organisations and projects have been starved of funding.

"But what is perhaps worst of all is many of those severely disabled people who have assumed the demanding responsibility of organising and managing their own complex personal assistance support, and do so 52 weeks a year without any financial rewards, are defined as being 'economically inactive'."

They add: "Our movement has a collective responsibility to defend the gains we have made, and renew its commitment to campaign for full civil and human rights for all disabled people and their families.

"The European Independent Living Day is an opportunity we should not waste."

The statement has been signed by leading disabled activists such as Anne Rae, chair of Greater Manchester Coalition of Disabled People; Debbie Jolly, co-founder of Disabled People Against Cuts and an ENIL board member; Kevin Caulfield, an ILF-user and chair of Hammersmith and Fulham Coalition Against Community Care Cuts; actor, performer and activist Liz Carr, another ILF-user; and Tracey Lazard, chief executive of Inclusion London.

ENIL's Stop Disability Cuts campaign has been running in the lead-up to May's elections to the European parliament, and highlights the disproportionate effects of the austerity measures which have taken place at EU and national level on the lives of disabled people across Europe.

It says that these breach the UN Convention on the Rights of Persons with Disabilities, which has been ratified by the European Union and 25 of its member states.

http://www.thefedonline.org.uk/disability-in-the-news/campaigners-launch-new-legal-bid-to-halt-independent-living-fund-closure

Sassy wrote:The Independent Living Fund has nothing to do with PIP or DLA, it is a fund that is there to help people who are so disabled that before they had to live in and institution, have help to live independently.

1. Overview

The Independent Living Fund (ILF) provides money to help disabled people live an independent life in the community rather than in residential care.

You can use payments from the ILF to:

   employ a carer or personal assistant to give you personal and domestic care
   pay a care agency to provide personal care and help with domestic duties

The ILF is permanently closed to new applications.
https://www.gov.uk/independent-livingfund/overview

Those costs will not be covered by PIP and disability charities are saying that people will again be institutionalised or have to have their families care for them again and loose their independence.



Campaigners launch new legal bid to halt Independent Living Fund closure
Posted by Melanie Brown on Friday, 11 April 2014 in Disability in the News

Users of the Independent Living Fund (ILF) have launched a fresh legal bid to halt its closure, Disability News Service can reveal.

Three ILF-users are threatening a second judicial review of the coalition's decision to close the fund, a government-funded trust which helps about 18,000 disabled people with the highest support needs to live independently.

Many campaigners believed the battle had been won when five ILF-users secured a high-profile court of appeal victory last November over the closure decision.

But despite the court ruling that Esther McVey - at the time the minister for disabled people - had breached the Equality Act’s public sector equality duty, the judgment meant only that the government had to reconsider its decision, this time paying "proper attention" to its legal obligations.

Mike Penning, the new minister, told MPs on 6 March that he had done just that and had decided to go ahead with the original decision to close ILF and transfer non-ring-fenced funding to local authorities, although he delayed the closure date by three months until 30 June 2015.

Now three of the disabled campaigners who took the original court action - Stuart Bracking, Gabriel Pepper and Paris L'Amour - are renewing their legal battle, and other ILF-users have expressed interest in joining them.

They say that Penning has breached the public sector equality duty in a similar way to McVey.

They claim that his department's latest equality analysis fails to reflect what the court of appeal described as "the inevitable and considerable adverse impact which the closure of the fund will have".

They have written a "letter before claim" to the Department for Work and Pensions, calling on it to withdraw its closure decision, which they say is unlawful.

If Penning fails to act, they could seek a fresh judicial review in the high court.

Louise Whitfield, of solicitors Deighton Pierce Glynn, who represents the three ILF-users, said today (11 April): "I think there is a realistic hope that this will halt the closure.

"My clients' concerns are so grave about the implications of closing the fund that they still feel it is essential that the government have a real hard look at what the impact would be on severely disabled people, and that just hasn't happened.

"There is no real recognition that this is going to be devastating for large numbers of severely disabled people."

News of the latest court action came as ILF-users called on the disability movement to show its support for their fight against closure on a European day of action.

They want fellow ILF-users and their families, disability organisations and disabled activists in the UK to join organisations across Europe that will be highlighting the impact of austerity cuts on the lives of disabled people.

The European Network on Independent Living (ENIL) is organising the first European Independent Living Day on 5 May, the culmination of its Stop Disability Cuts campaign.

It wants disabled people and their organisations to hold meetings, protests, marches or even flash mobs simultaneously in cities throughout Europe, while ENIL will organise a press conference in Brussels on the same day.

Three of the five ILF-users who beat the government in court - Bracking, Pepper and Anne Pridmore - have published a statement calling on the movement to support European Independent Living Day as part of the campaign to save ILF.

That call has been backed by more than 100 ILF-users, relatives, disabled people's organisations and activists.

Bracking said that people were "terrified" about the impact of the closure on their lives, and added: "I think that is part of the tactics of the Department for Work and Pensions because fear paralyses people and stops them responding and fighting back."

But he said that saving ILF could be a historic achievement, so members of the disability movement need to "fight as hard as we can".

He said: "It is important to try to encourage formation of campaign groups, however limited, across the country.

"We can turn this around. The effects are so dreadful on disabled people's lives, and the closure date is still 15 months away.

"The issue for politicians will be whether they can hold their nerve. As it gets closer, more and more people will wake up to what it is going to mean for them."

Even small public events on 5 May will raise awareness of the need to oppose the closure, and other cuts to services and benefits, he said.

In a statement accompanying the call to action on 5 May, Bracking, Pepper and Pridmore warn: "The disabled people's movement across England, Wales, Scotland and Northern Ireland has a proud history of campaigning for independent living rights, but the gains of a generation ago for disabled people of working age are now under threat, as are the social opportunities pursued by many disabled people with complex conditions."

They say the innovations of the independent living movement have been marginalised, while its organisations and projects have been starved of funding.

"But what is perhaps worst of all is many of those severely disabled people who have assumed the demanding responsibility of organising and managing their own complex personal assistance support, and do so 52 weeks a year without any financial rewards, are defined as being 'economically inactive'."

They add: "Our movement has a collective responsibility to defend the gains we have made, and renew its commitment to campaign for full civil and human rights for all disabled people and their families.

"The European Independent Living Day is an opportunity we should not waste."

The statement has been signed by leading disabled activists such as Anne Rae, chair of Greater Manchester Coalition of Disabled People; Debbie Jolly, co-founder of Disabled People Against Cuts and an ENIL board member; Kevin Caulfield, an ILF-user and chair of Hammersmith and Fulham Coalition Against Community Care Cuts; actor, performer and activist Liz Carr, another ILF-user; and Tracey Lazard, chief executive of Inclusion London.

ENIL's Stop Disability Cuts campaign has been running in the lead-up to May's elections to the European parliament, and highlights the disproportionate effects of the austerity measures which have taken place at EU and national level on the lives of disabled people across Europe.

It says that these breach the UN Convention on the Rights of Persons with Disabilities, which has been ratified by the European Union and 25 of its member states.

http://www.thefedonline.org.uk/disability-in-the-news/campaigners-launch-new-legal-bid-to-halt-independent-living-fund-closure

Yes Sassy that is what I was trying to explain - it is not and never was "a benefit". The link between it and DLA/PIP and ESA is the confusion over what money disabled people may get and why they may get it.

So ESA/JSA for day to day living expenses
DLA/PIP for unavoidable costs due to disability
ILF for one off special costs.

sphinx wrote:

Sassy wrote:The Independent Living Fund has nothing to do with PIP or DLA, it is a fund that is there to help people who are so disabled that before they had to live in and institution, have help to live independently.

1. Overview

The Independent Living Fund (ILF) provides money to help disabled people live an independent life in the community rather than in residential care.

You can use payments from the ILF to:

   employ a carer or personal assistant to give you personal and domestic care
   pay a care agency to provide personal care and help with domestic duties

The ILF is permanently closed to new applications.
https://www.gov.uk/independent-livingfund/overview

Those costs will not be covered by PIP and disability charities are saying that people will again be institutionalised or have to have their families care for them again and loose their independence.



Campaigners launch new legal bid to halt Independent Living Fund closure
Posted by Melanie Brown on Friday, 11 April 2014 in Disability in the News

Users of the Independent Living Fund (ILF) have launched a fresh legal bid to halt its closure, Disability News Service can reveal.

Three ILF-users are threatening a second judicial review of the coalition's decision to close the fund, a government-funded trust which helps about 18,000 disabled people with the highest support needs to live independently.

Many campaigners believed the battle had been won when five ILF-users secured a high-profile court of appeal victory last November over the closure decision.

But despite the court ruling that Esther McVey - at the time the minister for disabled people - had breached the Equality Act’s public sector equality duty, the judgment meant only that the government had to reconsider its decision, this time paying "proper attention" to its legal obligations.

Mike Penning, the new minister, told MPs on 6 March that he had done just that and had decided to go ahead with the original decision to close ILF and transfer non-ring-fenced funding to local authorities, although he delayed the closure date by three months until 30 June 2015.

Now three of the disabled campaigners who took the original court action - Stuart Bracking, Gabriel Pepper and Paris L'Amour - are renewing their legal battle, and other ILF-users have expressed interest in joining them.

They say that Penning has breached the public sector equality duty in a similar way to McVey.

They claim that his department's latest equality analysis fails to reflect what the court of appeal described as "the inevitable and considerable adverse impact which the closure of the fund will have".

They have written a "letter before claim" to the Department for Work and Pensions, calling on it to withdraw its closure decision, which they say is unlawful.

If Penning fails to act, they could seek a fresh judicial review in the high court.

Louise Whitfield, of solicitors Deighton Pierce Glynn, who represents the three ILF-users, said today (11 April): "I think there is a realistic hope that this will halt the closure.

"My clients' concerns are so grave about the implications of closing the fund that they still feel it is essential that the government have a real hard look at what the impact would be on severely disabled people, and that just hasn't happened.

"There is no real recognition that this is going to be devastating for large numbers of severely disabled people."

News of the latest court action came as ILF-users called on the disability movement to show its support for their fight against closure on a European day of action.

They want fellow ILF-users and their families, disability organisations and disabled activists in the UK to join organisations across Europe that will be highlighting the impact of austerity cuts on the lives of disabled people.

The European Network on Independent Living (ENIL) is organising the first European Independent Living Day on 5 May, the culmination of its Stop Disability Cuts campaign.

It wants disabled people and their organisations to hold meetings, protests, marches or even flash mobs simultaneously in cities throughout Europe, while ENIL will organise a press conference in Brussels on the same day.

Three of the five ILF-users who beat the government in court - Bracking, Pepper and Anne Pridmore - have published a statement calling on the movement to support European Independent Living Day as part of the campaign to save ILF.

That call has been backed by more than 100 ILF-users, relatives, disabled people's organisations and activists.

Bracking said that people were "terrified" about the impact of the closure on their lives, and added: "I think that is part of the tactics of the Department for Work and Pensions because fear paralyses people and stops them responding and fighting back."

But he said that saving ILF could be a historic achievement, so members of the disability movement need to "fight as hard as we can".

He said: "It is important to try to encourage formation of campaign groups, however limited, across the country.

"We can turn this around. The effects are so dreadful on disabled people's lives, and the closure date is still 15 months away.

"The issue for politicians will be whether they can hold their nerve. As it gets closer, more and more people will wake up to what it is going to mean for them."

Even small public events on 5 May will raise awareness of the need to oppose the closure, and other cuts to services and benefits, he said.

In a statement accompanying the call to action on 5 May, Bracking, Pepper and Pridmore warn: "The disabled people's movement across England, Wales, Scotland and Northern Ireland has a proud history of campaigning for independent living rights, but the gains of a generation ago for disabled people of working age are now under threat, as are the social opportunities pursued by many disabled people with complex conditions."

They say the innovations of the independent living movement have been marginalised, while its organisations and projects have been starved of funding.

"But what is perhaps worst of all is many of those severely disabled people who have assumed the demanding responsibility of organising and managing their own complex personal assistance support, and do so 52 weeks a year without any financial rewards, are defined as being 'economically inactive'."

They add: "Our movement has a collective responsibility to defend the gains we have made, and renew its commitment to campaign for full civil and human rights for all disabled people and their families.

"The European Independent Living Day is an opportunity we should not waste."

The statement has been signed by leading disabled activists such as Anne Rae, chair of Greater Manchester Coalition of Disabled People; Debbie Jolly, co-founder of Disabled People Against Cuts and an ENIL board member; Kevin Caulfield, an ILF-user and chair of Hammersmith and Fulham Coalition Against Community Care Cuts; actor, performer and activist Liz Carr, another ILF-user; and Tracey Lazard, chief executive of Inclusion London.

ENIL's Stop Disability Cuts campaign has been running in the lead-up to May's elections to the European parliament, and highlights the disproportionate effects of the austerity measures which have taken place at EU and national level on the lives of disabled people across Europe.

It says that these breach the UN Convention on the Rights of Persons with Disabilities, which has been ratified by the European Union and 25 of its member states.

http://www.thefedonline.org.uk/disability-in-the-news/campaigners-launch-new-legal-bid-to-halt-independent-living-fund-closure

Yes Sassy that is what I was trying to explain - it is not and never was "a benefit".  The link between it and DLA/PIP and ESA is the confusion over what money disabled people may get and why they may get it.  

So ESA/JSA for day to day living expenses
DLA/PIP for unavoidable costs due to disability
ILF for one off special costs.

Not quite, because it pays for carers to come in every day to enable the person to live independently, so that's not a one off, and the withdrawing of it is what is going to force people back into institutions.

Paying for a carer isn't a one-off payment though. It's a kind of benefit surely.

It was rarely intended for payment of carers/PAs - the money for those comes from council social services budgets and is generally handled one of 2 ways - a person applies for care and the council provides a paid employee to cover what is assessed as needed or the person can apply to be a personal budget holder when the council pay an amount into a special bank account which they use to employ someone direct themselves - becoming responsible for taxation/NI etc although most councils provide excellent help with this. ILF would generally only cover short periods that were not standard - say if someones regular carer became sick.

The most important area the ILF provided was the physical adaptations to homes, businesses, and cars. The difference between a disabled person needing a carer and being totally self sufficient can be down to the height of counters and light switches - have all the kitchen counters lowered and light switches lowered and a person who previously needed a carer may be able to live completely alone.

You can get a better idea of how social services is responsible for meeting costs of carers/PAs through personal budgets at http://www.disabilityrightsuk.org/personal-budgets

sphinx wrote:It was rarely intended for payment of carers/PAs - the money for those comes from council social services budgets and is generally handled one of 2 ways - a person applies for care and the council provides a paid employee to cover what is assessed as needed or the person can apply to be a personal budget holder when the council pay an amount into a special bank account which they use to employ someone direct themselves - becoming responsible for taxation/NI etc although most councils provide excellent help with this. ILF would generally only cover short periods that were not standard - say if someones regular carer became sick.

The most important area the ILF provided was the physical adaptations to homes, businesses, and cars. The difference between a disabled person needing a carer and being totally self sufficient can be down to the height of counters and light switches - have all the kitchen counters lowered and light switches lowered and a person who previously needed a carer may be able to live completely alone.

Yes Sphinx, and the money that paid the council to do it was the ILF:

1. Overview

The Independent Living Fund (ILF) provides money to help disabled people live an independent life in the community rather than in residential care.

You can use payments from the ILF to:

employ a carer or personal assistant to give you personal and domestic care
pay a care agency to provide personal care and help with domestic duties

The ILF is permanently closed to new applications.
https://www.gov.uk/independent-livingfund/overview

Councils no longer have the funds to do it for free.

sphinx wrote:It was rarely intended for payment of carers/PAs - the money for those comes from council social services budgets and is generally handled one of 2 ways - a person applies for care and the council provides a paid employee to cover what is assessed as needed or the person can apply to be a personal budget holder when the council pay an amount into a special bank account which they use to employ someone direct themselves - becoming responsible for taxation/NI etc although most councils provide excellent help with this. ILF would generally only cover short periods that were not standard - say if someones regular carer became sick.

The most important area the ILF provided was the physical adaptations to homes, businesses, and cars. The difference between a disabled person needing a carer and being totally self sufficient can be down to the height of counters and light switches - have all the kitchen counters lowered and light switches lowered and a person who previously needed a carer may be able to live completely alone.

If they rent privately, what if the landlord doesn't agree to that?

Is it paid for via council tax?

That is a typical example of the government not having the foggiest how their own bloody systems work.

If a disabled person needs care they apply, social services assess, and the social services budget covers it - in most cases that money does not and never did come from the ILF .

The ILF may have funded extra - say a disabled person felt they could work self employed with an assistant which social services turned down because it was not seen as high necessity an application could be made to the ILF providing detailed business plan etc. The whole domesticity versus care is a nightmare anyway - needing someone to cook is considered care, needing someone to wash up is considered domestic. The ILF were actually more likely to use funds to prove to social services that domestic assistance was a necessity than just pay the domestic assistant.

The ILF also did group homes and things where they provided adapted buildings and full time staff to allow groups of disabled students live semi independently but some of the costs were recovered through rent and service charges.

I do agree that its loss is a bad thing I just want to get people away from seeing it as the same as either DLA/PIP or ESA - as well as getting them to realize that those 2 things are also totally different.

Raggamuffin wrote:

sphinx wrote:It was rarely intended for payment of carers/PAs - the money for those comes from council social services budgets and is generally handled one of 2 ways - a person applies for care and the council provides a paid employee to cover what is assessed as needed or the person can apply to be a personal budget holder when the council pay an amount into a special bank account which they use to employ someone direct themselves - becoming responsible for taxation/NI etc although most councils provide excellent help with this. ILF would generally only cover short periods that were not standard - say if someones regular carer became sick.

The most important area the ILF provided was the physical adaptations to homes, businesses, and cars. The difference between a disabled person needing a carer and being totally self sufficient can be down to the height of counters and light switches - have all the kitchen counters lowered and light switches lowered and a person who previously needed a carer may be able to live completely alone.

If they rent privately, what if the landlord doesn't agree to that?

Is it paid for via council tax?

I believe (but could be wrong) that ILF funding is central government from the same sort of area as foreign aid. Sort of a charity thats funding comes entirely from the government if that makes sense.

I am not sure how much of social services budgets are met from council tax and how much from central government.

Very very few private landlords are going to agree to full adaptations - although many will consider things like a ramp instead of steps. The vast majority of adapted rental properties are local authority. A significant number of adaptations are done on properties a disabled person owns - they may be willed a property, they may get a mortgage, or they may get compensation for disabling injuries. If a disabled person can afford to buy a property but not get conversions done they could apply to the ILF. Also partial adaptations could be applied for - say a couple have a disabled child who reaches adulthood and wants to live more independently they could apply to convert a garage into a studio, or have an extension. Or it could be as simple as someone who cannot live totally independently and is unable to use an ordinary bath unattended, but could use a wet room on their own so the bathroom is adapted for them to increase the amount of independence they have even if it does not make them completely independent.

One often overlooked area is the adaptation of cars - everyone thinks disabled people get "free" cars - some realize that free means some of their benefit being paid direct to a lease company, few realize that if the person requires that car to be adapted - say hand controls to a hoist to get the wheelchair in or whatever then they have to pay for those adaptations themselves - they are not covered by the motobility contract.

On Saturday 28th June 2014 I was proud to take a part in a legal non-violent demonstration the purpose of this demo was two-fold:

1 To shame the Coalition to reverse their shameful decision to close the ILF (Independent Living Fund) later this year. There rationale is that it will save money and make life easier for users, we all know it given to people with high-complex support needs and we all know we will be imprisoned in our own homes as nearly all Local Authorities do not have the funds to provide the current level of support we require. He funds release will not be ring-fenced and will in all probability be swallowed up. Meaning we will be given call out care packages.

2 To publish our position to the general public and in doing so gain their support.

This the precise reason why after months of planning we decided to choose Westminster Abbey as the site of our camp. The reasoning behind this being that we figured that as the Church of England had repeatedly voiced their concerns over the way in which the government’s austerity policies where having a detrimental effect on the most vulnerable people in society (vulnerability is placed on you by actions of others rather than your own actions) we concluded they would support us by allowing us to camp on their land, i.e. Westminster abbey. How wrong this assumption would prove!

Let met point out that the plan was to ask Church officials to allow us to camp out for 3 weeks until Parliament closed. This was always a DPAC (Disabled People Against Cuts) action, organisations such as Occupy and UK Uncut were only there to support DPAC. Believe it or not but when it comes to pitching tents crips are crap at such tasks.

We met up early and it was always our aim to pitch up (excuse pun) and take over site at 4pm. Thus causing the least trouble to any member of the general public visiting the Abbey that day.

However when we arrive it was obvious that the security of Abbey had been forewarned, because they had begun to lock gates early. This obvious curtailed our plans. However, we still managed to get a number of activists into the grounds, who secured gates by locking together both and to gates. Thus allowing our support team from Occupy to raise the camp.

Whilst this was happening our negotiation team contacted the Dean of Westminster (Rev. [honestly] Rob Hall) to ask permission to encamp. It became clear within seconds that we where not going to get the desired response. According to my colleague who was there. His reply went something like this: “We at CoE support the theory of standing up against austerity cuts and how they affect everyone. However the Church can’t support any form of Direct Action and we want you to leave immediately.

Before I continue I feel the need to point out to the Rev. that he needs to remember his history. What were the Crusades if not Direct Action?

Anyway back to Saturday’s events not only did the Dean request us to vacate his grounds, he called in the police to extract us. They arrived on mass. We estimate that around 300 police arrive and kettle the 100 or so demonstrators. Apart from surrounding the makeshift camp, they stood on tents and ripped the only accessible tent.


A line of Police bravely protecting Westminster Abbey from rampaging disabled people

I was one of the DPAC protesters left outside the gates. We asked one of the Officers why they thought the need to come out in such force his response was “that we are. Not here for you but because of UK Uncut Blackblock and Occupy”

I repeat what I said earlier, the part played by Occupy was solely there in a supporting role. This can be evidenced by looking at all pictures and video at no time have I see any banners or signs mentioning any other group or cause other then DPAC and Save ILF

Which leads you to ask the question how did the police know who was there?

During this time the first arrest of three occurred, a person was accused of assault a police officer.

There for a time a situation of tense stalemate the Police kept the protesters inside the cordon and just outside the fence taking to the press and general public.

At this time I found myself sat outside the gate situated to the left of the hot drinks cabin. Whilst I was there one of the protesters came over and asked my PA (Personal Assistant) to get his holdall which contained his medication. Once we got his bag we tried passing over the bag to him. At this time Sgt. Dodd XB 50 decided to step in, pushing the bag back over stating that: “No bags where going to enter.” When performing this task he aggressively pushed both my PA and the owner of bag. You can imagine tensions arose and I and many on street side of gate challenged his right to with hold vital medication from people. There was no leeway given by said Officer Sgt Dodd (or as I told him they miss-spelled name Sgt. Godd). He is pictured below.


Due to the fact that the security of Westminster Abbey was so fast to respond to the “danger” we represented not all resources where able to be sent in. This included bags with meds, food and water. As the policy of police under the direction of the Dean of Westminster Abbey was to deny access of said provisions, disabled people where denied food, water and medication.

During the afternoon Armed Response Police Units appeared to mingle within crowd. This raised tensions even further as it was complete over the top policing of a peaceful protest of disabled people standing up to save them from being returned to institutions.

It has been denied that they were there and imagines removed of them from websites. Below is pictorial proof.


Armed Response

As afternoon turned into evening it became apparent that any overnight sleepover in Abbey grounds was impossible, the people within the cordon discussed the best exit strategy. Rightly it was agreed that the ILF users should have the last say. So it was decided that they would be the last group out. However this was countered by the police saying they would arrest everyone left. So after more discussions it was decided to all leave together.

At 9pm everyone left together triumphantly. Yes triumphantly because we had a victory. I say this because we showed the establishment we won’t go away quietly. It was a great publicity coup that brought the public on our side. We proved that we can work with other groups to achieve our collective goal SOCIAL JUSTICE FOR ALL.

On that subject a BIG thank you to our allies Occupy without who none of Saturday’s action would have been possible.

We can claim a moral and physical victory. The institution that loses most face is the Church of England. Their action on Saturday proves they are the Church of England’s establishment not its people.

The fight to Save our ILF continues on 4th July and beyond.

THE FIGHT GOES ON!

http://dpac.uk.net/category/independent-living-fund-ilf-2/

If those disabled were able to camp out for several days, why do they need extra help?

Stopping monetary assistance for the disabled is inhuman but I expect nothing better from Duncan Smith and his warped cronies.

I don't mean 'warped' as a demeaning put down either,I actually think people with a very conservative outlook must be in some way,mentally unwell.

Trampling all over the vulnerable in society is indicative of a sociopathic mindset as far as I'm concerned. I don't understand why any normal right minded individual would deny disabled people the monetary support they require unless they are just very evil people,or psychopaths (which robs them of empathy).

The Tories can sod off,truly.As soon as we see the back of them,the better.

What is DLA for then?

https://www.gov.uk/dla-disability-living-allowance-benefit/what-youll-get

Disabled people get ESA or whatever, and they can get DLA on top of that. Is that not pretty fair?

Yes but I don't see the need to take away any financial assistance for disabled people,no matter what form it takes.

The Tories just want to save money but there are other more humane ways of cutting costs.

Raggamuffin wrote:What is DLA for then?

Care component
Weekly rate Level of help you need
Lowest £21.55 Help for some of the day or with preparing cooked meals
Middle £54.45 Frequent help or constant supervision during the day, supervision at night or someone to help you while on dialysis
Highest £81.30 Help or supervision throughout both day and night, or you’re terminally ill


Mobility component
Mobility component Weekly rate Level of help you need
Lower £21.55 Guidance or supervision supervision, supervision
Higher £56.75 You have any other, more severe, walking difficulty


you will loose most or all the mobility componant if you take a car but you don`t pay road tax ,insurance,services or the full AA membership

the car is not yours and you have to keep it it good condision for 3-5 years you do pay the escess on any insurance claims basicaly all you have to do is put fuel in it

Raggamuffin wrote:Disabled people get ESA or whatever, and they can get DLA on top of that. Is that not pretty fair?

Yes you would probably get both but a lot depends on the condition

So councils will effectively take over the fund and allocate money. The concern is that they will spend the money on other things, yes?

Raggamuffin wrote:So councils will effectively take over the fund and allocate money. The concern is that they will spend the money on other things, yes?

Councils have money for this already in the social work budget what they need is more unfortunately and some basic common sense if my experiences  are a indicator

Ps
My daughter is profoundly physically disabled hence my knowledge of the subject

In 2012, the government decided to close the Independent Living Fund and devolve the funding to local authorities.

That meant the money would no longer be ring-fenced, would be subject to normal budget cuts, and many disabled people feared that they would lose it.

http://www.bbc.co.uk/news/uk-politics-26471706

So the money is not lost, it's just that disabled people think it will be.

Raggamuffin wrote:

In 2012, the government decided to close the Independent Living Fund and devolve the funding to local authorities.

That meant the money would no longer be ring-fenced, would be subject to normal budget cuts, and many disabled people feared that they would lose it.

http://www.bbc.co.uk/news/uk-politics-26471706

So the money is not lost, it's just that disabled people think it will be.

It`s the fact it will no longer be ring fenced and subject to cuts (or more accurately there planning on cutting it and this is the easiest way to do it ) also councils who badly use the money will do so at the detriment of the disabled person

for example

West Sussex County Council are cutting 40% from the adult social care budget, starting in April 2011. The cuts will be made over 3 years. Day services are going to be closed, people with moderate needs will no longer receive a service and the charging policy has been revised to assess 100% of disposable income.

http://falseeconomy.org.uk/cuts/item/adult-social-services

So none of this has happened yet. It would probably be better to wait and see how councils handle the money instead of gobbing off outside Westminster Abbey. You never know, the councils might handle it better.

I get DLA or PIP as they call it,paid at £225 a month,plus my old age pension at £110 aweek. my house is paid for. Wife gets £110 a week pension.i run a small car,BUT I don't play bingo or have foreign holidays.We manage quite well,cant see why others can't