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

First topic message reminder :

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.

Raggamuffin wrote:

sphinx wrote:

Again ESA is for sick people not disabled people.

Just because a disabled person is not working does not mean they get ESA - unless they are sick as well as disabled they will get JSA.

People do not live on DLA - that is not what it is for.

Also I was trying to explain what would happen if you got rid of DLA.  You would have a lot of disabled people becoming unemployed because without DLA they could not afford to stay employed.  They would go onto JSA not ESA because they would not be sick.  On JSA their lives would be much worse than the non disabled on JSA because they could not do what the non disabled take for granted like walk to town to look for work or get shopping.  Under current rules in fact many would not be able to get to the job centre to sign on and would be kicked off JSA and be left with no income at all.

Well some illnesses lead to disability, and the Government websites says it's for sick or disabled people.

People on JSA have the expense of going to interviews though.

You can get your shopping delivered these days - loads of people I know do their shopping online.

I'm not saying that people shouldn't get ESA, I'm just not sure about DLA because it's not means tested. If someone has a load of money, they wouldn't need it would they? As I understand it, some people can get both ESA and DLA.

Just because some illnesses lead to does not mean they are the same thing.

Guess what? Disabled people have the expense of going to interviews as well - only it costs them more to get to the same interview.

Sure people can get shopping delivered - its a real life of reilley being unable to leave your home and simply having shopping delivered once a week. The point is choice. Non disabled person can choose to have it delivered or can choose to go out and do it. Disabled person without DLA would have no choice because they could not afford to go out and do it. It does of course cost money to have shopping delivered - non disabled can save the delivery charge by walking to the shop and carrying their own stuff home. Disabled just have to pay the fee.

Yes a disabled person who cannot work because they are sick can get ESA and DLA. That is because the costs of being disabled do not disappear when you get sick. DLA is nothing to do with being sick or with working - it is only concerned with disability. David Cameron used to get it for his disabled son - it made no difference that he was highly paid the fact was that his son needed more money spent on him than a non disabled child of the same age.

At the end of the day it comes down to this - would you rather be able to walk or have an extra £57 a week?

Would you rather be able to go to the toilet on your own or have an extra £81 a week?

What price do you put on the ability to walk? To see? To feed yourself? To toilet yourself? To be independent of others? To have the dignity of choice to be able to tell anyone and everyone to fuck off?

Sassy wrote:

Raggamuffin wrote:

Oh shut your gob and try to debate the subject.

I am, the subject is about the extra money disabled people need and why, and you are deliberately pretending not to understand to be a WUM.   Simples.

I've read that you're disruptive, and now I see what people mean. Try not to spam the thread this time eh?

sphinx wrote:

Raggamuffin wrote:

Well some illnesses lead to disability, and the Government websites says it's for sick or disabled people.

People on JSA have the expense of going to interviews though.

You can get your shopping delivered these days - loads of people I know do their shopping online.

I'm not saying that people shouldn't get ESA, I'm just not sure about DLA because it's not means tested. If someone has a load of money, they wouldn't need it would they? As I understand it, some people can get both ESA and DLA.

Just because some illnesses lead to does not mean they are the same thing.

Guess what? Disabled people have the expense of going to interviews as well - only it costs them more to get to the same interview.

Sure people can get shopping delivered - its a real life of reilley being unable to leave your home and simply having shopping delivered once a week.  The point is choice.  Non disabled person can choose to have it delivered or can choose to go out and do it.  Disabled person without DLA would have no choice because they could not afford to go out and do it.  It does of course cost money to have shopping delivered - non disabled can save the delivery charge by walking to the shop and carrying their own stuff home.  Disabled just have to pay the fee.

Yes a disabled person who cannot work because they are sick can get ESA and DLA.  That is because the costs of being disabled do not disappear when you get sick.  DLA is nothing to do with being sick or with working - it is only concerned with disability.  David Cameron used to get it for his disabled son - it made no difference that he was highly paid the fact was that his son needed more money spent on him than a non disabled child of the same age.

At the end of the day it comes down to this - would you rather be able to walk or have an extra £57 a week?  

Would you rather be able to go to the toilet on your own or have an extra £81 a week?

What price do you put on the ability to walk?  To see?  To feed yourself?  To toilet yourself?  To be independent of others?  To have the dignity of choice to be able to tell anyone and everyone to fuck off?  

Well I can't do much about what the Government website says really. It says ESA is for sick or disabled people.

I think you said earlier that ESA was higher than JSA because of the extra costs of being sick or disabled. That's why I asked about DLA - because isn't that what it's for as well? Perhaps we should define disability. What about arthritis? That's an illness but it could also be a disability.

What about anxiety-based disability? Those people can walk. Do you think that they should have to get treatment in order to get benefits?

Raggamuffin wrote:

Sassy wrote:

I am, the subject is about the extra money disabled people need and why, and you are deliberately pretending not to understand to be a WUM.   Simples.

I've read that you're disruptive, and now I see what people mean. Try not to spam the thread this time eh?

My thread Rags, I started it, you are disrupting it by continually asking the same questions and pretending you don't understanding and saying the same thing over and over.

Sassy wrote:

Raggamuffin wrote:

I've read that you're disruptive, and now I see what people mean. Try not to spam the thread this time eh?

My thread Rags, I started it, you are disrupting it by continually asking the same questions and pretending you don't understanding and saying the same thing over and over.  

Troll off ...

Is there other financial help for disabled people sphinx?

I've often commented on the hundreds of discounts available, provided by organisations themselves, not the government, but what about these:


Overview
Disability and sickness benefits
Vehicles and transport
Home and housing
On a low salary
Television licence discount
VAT relief for disabled people
Work related injuries or illness
If you've served in Her Majesty's Armed Forces
Attendance Allowance
Carer's Allowance

https://www.gov.uk/disability-benefits-helpline

I was just reading about PIP versus DLA. Apparently, there will be no automatic entitlement to PIP like there was for DLA for certain conditions. I can't find out what those conditions are, but presumably some people who might have got DLA before might not get PIP.

Raggamuffin wrote:

Sassy wrote:

My thread Rags, I started it, you are disrupting it by continually asking the same questions and pretending you don't understanding and saying the same thing over and over.  

Troll off ...

Funny, when you weren't on last night, we were having such a lovely time, and you and BA getting together to make it look as if disabled people don't have a hard time is my ideal of trolling, especially on my thread that is about the struggle they have and the struggles they are going through to try and lead an actual life instead of being put back in institutions.

Sassy wrote:

Raggamuffin wrote:

Troll off ...

Funny, when you weren't on last night, we were having such a lovely time, and you and BA getting together to make it look as if disabled people don't have a hard time is my ideal of trolling, especially on my thread that is about the struggle they have and the struggles they are going through to try and lead an actual life instead of being put back in institutions.

It's you who chose to start trolling this thread, so blame yourself.

Now do you have anything useful to say or not?

Raggamuffin wrote:

Sassy wrote:

Funny, when you weren't on last night, we were having such a lovely time, and you and BA getting together to make it look as if disabled people don't have a hard time is my ideal of trolling, especially on my thread that is about the struggle they have and the struggles they are going through to try and lead an actual life instead of being put back in institutions.

It's you who chose to start trolling this thread, so blame yourself.

Now do you have anything useful to say or not?

Well you haven't had, because this thread isn't about JSA, or ESA, DLA, it's about the Independent Living Fund and their struggle to get it re-instated. So perhaps you could manage to talk about that rather than continually diverting and getting Sphinx to explain things over and over again.

Sassy wrote:

Raggamuffin wrote:

It's you who chose to start trolling this thread, so blame yourself.

Now do you have anything useful to say or not?

Well you haven't had, because this thread isn't about JSA, or ESA, DLA, it's about the Independent Living Fund and their struggle to get it re-instated.   So perhaps you could manage to talk about that rather than continually diverting and getting Sphinx to explain things over and over again.

But you ignored my post about the elevating wheelchair, which would surely come under that topic. Strange that ...

It's not fault if Sphinx says something different to the Government website - take it up with her or with the Government. I'm also entitled to my opinion, despite the fact that you seem to think that you're an expert as well as Sphinx.

Raggamuffin wrote:

sphinx wrote:

Just because some illnesses lead to does not mean they are the same thing.

Guess what? Disabled people have the expense of going to interviews as well - only it costs them more to get to the same interview.

Sure people can get shopping delivered - its a real life of reilley being unable to leave your home and simply having shopping delivered once a week.  The point is choice.  Non disabled person can choose to have it delivered or can choose to go out and do it.  Disabled person without DLA would have no choice because they could not afford to go out and do it.  It does of course cost money to have shopping delivered - non disabled can save the delivery charge by walking to the shop and carrying their own stuff home.  Disabled just have to pay the fee.

Yes a disabled person who cannot work because they are sick can get ESA and DLA.  That is because the costs of being disabled do not disappear when you get sick.  DLA is nothing to do with being sick or with working - it is only concerned with disability.  David Cameron used to get it for his disabled son - it made no difference that he was highly paid the fact was that his son needed more money spent on him than a non disabled child of the same age.

At the end of the day it comes down to this - would you rather be able to walk or have an extra £57 a week?  

Would you rather be able to go to the toilet on your own or have an extra £81 a week?

What price do you put on the ability to walk?  To see?  To feed yourself?  To toilet yourself?  To be independent of others?  To have the dignity of choice to be able to tell anyone and everyone to fuck off?  

Well I can't do much about what the Government website says really. It says ESA is for sick or disabled people.

I think you said earlier that ESA was higher than JSA because of the extra costs of being sick or disabled. That's why I asked about DLA - because isn't that what it's for as well? Perhaps we should define disability. What about arthritis? That's an illness but it could also be a disability.

What about anxiety-based disability? Those people can walk. Do you think that they should have to get treatment in order to get benefits?

ESA is higher than JSA for difference in costs of not being expected to look for work. A person on JSA is expected to be "actively seeking work" - which means they can reasonably be expected to leave the house in the morning and spend the day in the Library using the computers and free papers to find and apply for jobs. This means that they do not need to heat their home during the day. They can do their own shopping and walk to where they want to go. A person on ESA is considered sick - they can reasonably be expected to remain at home all day thus needing heating, have their shopping delivered and use transport to reach doctors and hospital appointments.

A disability is something that limits a persons activities or choices or disadvantages a person in normal activities. For the purpose of benefits that definition is extended by the qualifier of has lasted at least six months and can reasonably be expected to continue for at least another 6 more or if it has not lasted more than six months it must reasonably be expected to last another 12 months.

Strictly speaking arthritis is not an illness it is a disorder. However the point is that neither ESA nor DLA/PIP are awarded on diagnosis. They are awarded on impact on life. A person can have arthritis (or MS or HIV or Fibro or any other condition) and be considered fit for work and not disabled. Or they may be considered unfit for work but not disabled (which is where I am) or they may be considered unfit for work and disabled - or even disabled and fit for work. It is also possible to claim either or both benefits without any formal diagnosis whatsoever. If a person has symptoms that doctors have explored and are exploring that do not fit a formal diagnosis they can still be classed as unfit for work and or disabled.

Anxiety - if a person ends up so terrified all they can do is curl up in a ball and cry can they be said to be able to walk? That is the position mental illnesses are considered from. To be fair as far as disablement is concerned they are more likely to be considered unable to walk unaccompanied than unable to walk - and under DLA/PIP that means an extra £21.55 a week to either pay delivery costs of everything or go towards paying someone to accompany them - please note there is a huge gap between what it actually costs to hire someone to accompany and what DLA/PIP pays.

Enforced treatment based benefits is a snakepit of a subject - and has the potential to make things much worse.

Consider these points

• When working out how much a person costs overall you have to look at two different budgets - benefits and health care costs
  
• An apparent saving on one may be counteracted by a massive increase in the other
  
• Who decides what is and is not a necessary treatment
  
• Some treatments make some patients significantly worse
  

For instance the recent who har over white dee - getting benefits for depression. Now the best way to have accurately assess the lady for depression would have been to provide proper treatment for depression - weekly therapy and medication assessments etc. Such a policy would be better for those with depression and would show up those like white dee who are far less affected. However do provide that would cost a massive increase in the health budget so the over all cost of such individuals would be much higher. It is by far the cheapest option to chuck people with mild to mid range mental illness onto ESA and have them see a GP once every six months and accept the odd pretender - providing proper treatment and weeding out the pretenders would cost much much more so despite the fact that everyone would benefit if it was done properly people are simply thrown on benefits.

Doctors can decide treatment on a case by case basis on what is best for individual. If you bought in treatment for benefits you would have non medically trained advisers deciding on treatments for whole groups - which would make some individuals much worse and would be pointless for many.

A government favourite treatment for fibro was/is graded exercise therapy because their tame expert likes it. Research from the rest of the world including the WHO shows graded exercise therapy is at best useless and at worse severely damaging. I really do not want to be in a situation where benefit is dependent on doing something that is very very bad for me and may kill any hope I have of ever getting back to earning.

Your second post on the thread Sassy:

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


Your third post on the thread Sassy:

Pillock


And sphinx was the first to bring the other benefits in to it.

We are all discussing the thread quite happily, without abuse, it is you who can not help her hatred coming out.

Tough.

The Independent Living Fund is for a relatively small number of people who are so disabled that they need permanent carers and most can't even get out of bed and into their wheelchair in the morning without help.   The fund helps them live in the community and be part of it rather than living in institutions, cut off from society.   It is not a one off fund, it not only pays for adaptions to living accommodation that is needed, but also pays for the day to day help they need.   It's been axed, which is a disgrace and will force them back into institutions, which will have to be paid for anyway.

BigAndy9 wrote:Your second post on the thread Sassy:

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


Your third post on the thread Sassy:

Pillock


And sphinx was the first to bring the other benefits in to it.

We are all discussing the thread quite happily, without abuse, it is you who can not help her hatred coming out.

Exactly. She's now taken to trolling threads which she starts, and it didn't take long this time.

Sassy wrote:Tough.

The Independent Living Fund is for a relatively small number of people who are so disabled that they need permanent carers and most can't even get out of bed and into their wheelchair in the morning without help.   The fund helps them live in the community and be part of it rather than living in institutions, cut off from society.   It is not a one off fund, it not only pays for adaptions to living accommodation that is needed, but also pays for the day to day help they need.   It's been axed, which is a disgrace and will force them back into institutions, which will have to be paid for anyway.  

It's been transferred to councils.

Raggamuffin wrote:

BigAndy9 wrote:Your second post on the thread Sassy:

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


Your third post on the thread Sassy:

Pillock


And sphinx was the first to bring the other benefits in to it.

We are all discussing the thread quite happily, without abuse, it is you who can not help her hatred coming out.

Exactly. She's now taken to trolling threads which she starts, and it didn't take long this time.

You are so transparent you can read a newspaper through you. Now talk about the Independent Living Fund and what will happen to people now it has been withdrawn.

Nothing will happen to people - they will continue to get lots of help through many other benefits and funds.

Sassy wrote:

Raggamuffin wrote:

Exactly. She's now taken to trolling threads which she starts, and it didn't take long this time.

You are so transparent you can read a newspaper through you.   Now talk about the Independent Living Fund and what will happen to people now it has been withdrawn.

The only thing you had to say about it was this:

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

Could you come up with something a bit more intelligent and interesting?

BigAndy9 wrote:Nothing will happen to people - they will continue to get lots of help through many other benefits and funds.

They might get more help now the fund is being transferred to councils.

The fund will now shut in June, rather than March, 2015. It is not open to new users already. After that the responsibility for supporting ILF users will fall to English local authorities and the devolved administrations of Scotland, Wales and Northern Ireland.

The decision was a blow for campaigners and one that many recipients of the fund fear.

Many worry that the change will result in a postcode lottery with the UK’s 18,509 ILF recipients left at the mercy of the different policies and financial decisions of individual councils.

As ILF users told the government’s original consultation on the plans, losing the ILF cash could have devastating results.

“People like me will end up sitting alone looking out of the window for most of the day, unable to even go to the toilet,” said one. “I will be imprisoned at home, and will even have to give up my dogs.”

Another told the DWP: “Before I was introduced to the ILF I was looked after by the local authority. I had no life at all, just a horrible existence. I didn’t get out of bed for months at a time. My care was extremely basic – to be kept clean, fed and medicated”

Funding reductions

The government’s new equality impact assessment is hardly reassuring.

It says “it is almost certain that closure of the ILF will mean that the majority of users will face changes to the way their support is delivered, including the real possibility of a reduction to the funding they currently receive”.

This is despite the government’s intention to divvy up the ILF’s £262m budget among local authorities and devolved administrations based on spending forecasts for each area.

Local authorities, notes the assessment, are likely to give people less control over how the money is spent than the ILF does and the fact is that not all councils pay for the kind of care that the fund would back. ie, it will not give them the care that the ILF will.

http://www.communitycare.co.uk/2014/03/14/preparing-life-independent-living-fund/#.U7vgWEBvrhc

Less copy and paste, and more of your own thoughts please.

Raggamuffin wrote:Less copy and paste, and more of your own thoughts please.

It's not my thoughts that are required, but the thoughts of the people who will be effected by this and the thoughts of the people who have assessed how they will be effected.

Sassy wrote:

Raggamuffin wrote:Less copy and paste, and more of your own thoughts please.

It's not my thoughts that are required, but the thoughts of the people who will be effected by this and the thoughts of the people who have assessed how they will be effected.

Best get them on here then. Off you go ...

Raggamuffin wrote:

Sassy wrote:

It's not my thoughts that are required, but the thoughts of the people who will be effected by this and the thoughts of the people who have assessed how they will be effected.

Best get them on here then. Off you go ...

Already did, but you are too stupid to read them, or to cold hearted to try and understand their plight, or maybe a combination of the two.

Sassy wrote:

Raggamuffin wrote:

Best get them on here then. Off you go ...

Already did, but you are too stupid to read them, or to cold hearted to try and understand their plight, or maybe a combination of the two.

So you have no personal opinion then, you're just copying what others say. Well that was a waste of time wasn't it? At least I have some opinions.

I already gave that too, my, you are having trouble aren't you?

Right, things to do, ta ta for now

Feel free to show how cold hearted and abnoxious you are.

Sassy wrote:I already gave that too, my, you are having trouble aren't you?  

Right, things to do, ta ta for now

Feel free to show how cold hearted and abnoxious you are.

You only trolled the thread - that's not really an opinion. Try harder next time.

Hey, just found out what Rags is:

Sassy wrote:Hey, just found out what Rags is:

See? You're just trolling. There's no point in starting a thread if you have nothing to add except trouble.

:askissas: :asboredas: 

Guys Sassy is right about it being a step backward. No so much regards the day to day care which has been being transferred to local councils for a long time prior to any talk of closing the ILF - personal budgets have made if far easier for disabled people to get the care and support they want and need rather than that which someone else says is best (prime example is for those needing help to get in and out of bed. Councils tend to focus on the elderly with early bed and rising and their employees will look to getting people ready for bed around 8pm and up and dressed around 6 to 7pm. This is fine if you are a pensioner - if you are a 22 year old college student it sucks. Personal budget means the student can pay someone to come and help at 11pm and 10 am with the occasional 2am and midday rising - in other words the same patterns as all their mates)

The big problems are the lack of ring fencing - already having a hugely damaging effect on things like day centres and home helps, because it means councils, unlike the ILF can decide to spend thousands on sending someone to south Spain for 3 weeks to learn how they manage their rubbish collection and pay for it by deciding all the people needing help to get up in the morning do not need help getting to bed in the evening - yes that sounds silly but it is what happens.

The other problem is councils are much further from central government budgets when it comes to working out how much an individual is costing - health and benefits do at least talk to each other and do work out things like cutting such and such a benefit results in claimant unable to afford heating results in pneumonia and hospital stay ends up costing NHS far more than amount cut from benefits (Sassy I do not say they are good at this I say they can at least manage it) with ILF passing to councils you are going to end up with young adult who previously would have got grant to move to own flat being stuck living with parents resulting in stresses resulting in worse employment outcomes and worsening health outcomes.

In the long term it costs less to have disabled people as independent as possible - right now we see disabled people working and holding down jobs, paying taxes and contributing to society who 30 years ago would have been stuck in care homes with huge wages bills cut of from society.