Wednesday, 5 October 2011

Baroness Jane Campbell Wants Our Views On PIP

Here is a copy of a mesage we just received from Baroness Campbell. I'm too tired to tweak and make this shiny, so if you can just leave your opinions in the comments thread, it would be much appreciated :

"As you will see from yesterday we talked about the importance of language. So I'm thinking of challenging the title PIP. I think it should remain Disability Living Allowance, after all that's what it's about, disabled People's extra cost of living. It shouldn't not based on independence (defined by professionals) conditionality. 

The condition that one should become "personally independent", which is likely to be defined in a medical model way, will not result in the independence disabled People have demanded over the years (i.e. independent living is about having choice and control over your life like that of non disabled people. 

It includes all things in your life like work, education, raising your family, leisure, personal mobility etc) If the government want to continue encouraging us take responsibility over our lives, then they must give us the right to make our own decisions as to how DLA money should be spent.

 It must not be measured by able-bodied people's assumptions as to what it is to be independent. Could you ask your networks what they think. I believe disabled people want to keep disability living allowance as a universal allowance. 

We want to continue the principle that once you become eligible it is left up to you (personal responsibility) as to how you spend it to minimising the extra costs of being a disabled person, therefore we shouldn't be constantly reassessed as to how our so called independence is going. I'm thinking of demanding we keep the language that means disability living. And as we know, living must be defined by the person whose life it is. (Disabled people are the experts in their own situation)

I could put this down as an amendment, but I need support from the outside world, to make it important and powerful.

Comments please ASAP please"


WythenshaweBi said...

I firmly believe that it should remain known as Disability Living Allowance. Personal Independence Payment is untrue - it doesn't give anybody personal independence, it's just a name change that will cost a small fortune in changing all the stationary that mentions DLA. It's not cost effective, it's just a waste of public funds for a name change! Bah humbug!

Anonymous said...

what does it matter what its called if they wont let you get it

sallycat101 said...

It should stay as DLA and be up to us how we chose to use it - and not be subject to a requirement for constant assesment which is intrusive, time consuming and expensive.

Anonymous said...

Thank you for your speech in the committee room about prior consultation about changes being a legally required "reasonable adustment".

I agree that the name DLA should be kept for a basic benefit covering the additional costs of living with disabilities while personal independence is more dependent on a person's whole network of support, access and inclusion.
DLA is increasingly being hijacked by councils as charges for essential services and transport.

Tianney said...

I agree with Anonymous the speech in the commitee room was excellent it ruffled a few feathers and should have been the signal for an ajournment untill the matters were put right. The name for DLA should stay people are comfortable with the name the mechanics could be altered but the name sould stay the same.

southygirl said...

If the lords cannot even consult one of their own colleagues what hope for the rest of us dependent on DLA that they will see sense and leave it unchanged.

Anonymous said...

I agree that it should remain DLA. One of the arguments used for the introduction of PIP, is that not many people had heard of DLA - however this will be worse if a completely new title is introduced. Money will be better spent publicising DLA, which some people have already heard of.

I agree that it is crucial that we as disabled people retain choice and control over our lives and that this does involve having the final say in how DLA money is spent. Even people with the same condition on paper, will have different practical needs to maintain their independence.

As a totally blind person myself, I know that able-bodied people cannot understand what being blind is really like and certainly cannot measure or put a true value on what it takes for me to be independent. I certainly want to keep DLA as a universal allowance.

As regards ongoing assessments, this is laughable in my case. I have two false eyes, so there is no chance at all that my medical condition will improve, there will always be things which I require assistance with. Even as technology advances provide solutions to some access issues, DLA is the means by which these extra costs of greater independence can be purchased and kept up-to-date.

Anonymous said...

I totally agree that the name should stay as DLA (Disability Living Allowance) and that the benefit should remain non-means tested and non-taxable. DLA allows me to meet some of the additional costs of my disability, but not all, however the life I would lead even if I had every aid and adaption known to man would never reach an able bodied person's definition of independence - Personal Independence Payment means nothing, it will not allow me to be independent by able bodied standards or even many disabled people's standards but a payment to ameliorate the extra costs of my disability will allow me to live my life as best I can a.k.a a living allowance. DLA is vital, it gives me the freedom to choose what would benefit me most - I can get a more suitable wheelchair than that offered by the NHS (the NHS chair would have left me housebound without able bodied assistance), I can buy a mattress topper to prevent bed sores, I can buy a stairlift and grab-rails, bathroom seats etc. Without DLA, NHS and social services provision is so low that, without the help of family and friends, I would most likely be housebound and most likely bedbound without the ability to move around the home or use the bathroom. DLA allows disabled people to live and to enjoy some of the benefits of life that able-bodied people never even have to think about - the ability to get out of bed, get washed and occasionally leave the house.
PIP should be scrapped immediately - from the information published so far the aim is simply cost cutting by hitting those least able to fight for themselves. The proposed descriptors are ludicrous and serve only to confirm that those in charge have no idea of what it is to be disabled and to try and live in today's society. DLA is vital to disabled people and keeping it's name and purpose is vital to allow it to keep helping those who need it.

Mozza said...

Thanks very much for all these comments.

I'll be monitoring the groups for 24 hours, will colate all the input from the various groups and report back to Jane.

Mo Stewart

Anonymous said...

I think the name is important please keep it, there will be nothing personal in a payment with a more rigid frame work its just stupid. This was one of the questions in the review they asked for, and I doubt very much anyone voted for a new name.

Its difficult when DLA/PIP is supposed to make us active members of work/social/communities yet its all based on medical mode, ie how far you can go in your wheelchair.

My local council takes back most of my DLA to pay towards a few hours of care a week, I am not allowed to use my DLA for anything other than basics of keeping up dressed/washed.Though they do let me keep the mobility to pay for powerchair/taxis etc how good of them!

I would like it to use towards things that improve my quality of life, right now I am saving for a new wheelchair cushion which with the DLA I can keep will take me about 6months for something I need to use all the time.

But how I use my DLA dosnt fit in with expenses when the council take my income into account only strict things like stairlift, alarm cord. Yet things like my textphone (only reason why I have a BT line are not allowed!) I am waiting to have interview to try and prove how I spend my DLA and why I want to keep it rather than pay it to council for my carer.

If DLA/PIP really was personal I should be allowed the automny to spend on things my disability needs just conform to some list in an office.

Anonymous said...

I am blind, and echo the other contributor who mentioned blindness as their disability. DLA helps me pay for my computer, which I use every day, the computer is pen and paper, is access to the outside world, is access to news, is access to services, is access to shopping in some cases too, oh, and it is access to privacy. privacy was one of the main things I mentioned in my DLA claim, and the claim was approved. this new pip seeks to say, if you have the aids, you don't need the payments. I disagree here ,if you don't have the aids, and if you have the aids, you need the payments, for your disability isn't catered for in the outside world. my computer costs me loads every year to keep running, as it either needs updating, or breaks down mechanically. all this costs money. able bodied people can live without their computers for days, I can't, I need mine day to day. if I get printed material, it is read by the computer, if I get a letter and need to respond, it is read and responded to on the computer. and I have not spoken of taxis to unfamiliar places, the provision of which was recognised within DLA high rate mobility for the most sight impaired. DLA has grown into a useful and necessary benefit over 20 years, and this government are looking, not just to change the benefit, but affectively to tear up the DLA case law which those with emerging, and well known conditions rely on. the government talk of people not knowing what DLA is, well, advertise it then! The government talk of fraud in DLA, 0.5 percent at last count. the government talk of the need to reassess DLA claimants, saying they cannot do so at the moment, this is rubbish. they can reassess, at any time, but instead of using the powers they have, they decided they would scrap the benefit in the name of reform. this is a disgusting use of power. oh, and you know that computer i spoke of, it's enabling me to write this response too, and yes, it cost me £199 recently to fix things, as the fans broke in it. i used my dla. thank you.

Anonymous said...

The name DLA is understandable as a non means tested allowance to assist with our disabilities. The name PIP means nothing many will never achieve personal independance myself included.

I need assistance to exist as a wheelie, a decent wheelchair which meets my personal needs not to fit the tick box culture of the NHS wheelchair services so my DLA helps me in day to day 'living' with my disability. Without my 'wheels' I cannot leave my home, I could not go even to the shops to look around and shopping regularly on line would be totally isolationist as seems to be implied under PIP. I want the freedom of my adapted car to be part of the human race, Without my DLA I would lose the right to family life, minor details to the AB's but I do enjoy being taken to my grandchildrens school sports etc in my DLA provided Car and wheelchair, even attending church, but also need to cover the cost of charging batteries, so much of the Occupatonal Therapy provision for me in the way of equipment is electrically driven and I may not be able to afford to run it, the allowance which allows me to attempt to live with my disability .
The proposed constant Re-testing is a total waste of 'hard working taxpayers' money as genetically inherited progressive degenerative neurological disorders don't impove with time, they actually get worse !!!!!

Please keep the name DLA.

Carolyn Roberts said...

I agree that Disability Living Allowance should remain, as the purpose of this benefit is to meet the extra costs of having a disability.

If a person has a long term physical disability, learning disability, sensory impairment or mental health issue, they should not have to be continually assessed. In most cases, their disability or impairment will be long term or permanent, although it may fluctuate, and they will have extra costs to meet as a result of their disability which can be met by DLA.

I am concerned about aids and adaptations being taken into account. Will the environment also be taken into account eg steep inclines, or poor surfaces when using a wheelchair, lack of dropped kerbs; the ability to be able to go out in ice, snow or strong wind for a person who has a visual impairment?

I understand that the fraud rate for DLA is 0.5% and yet the Government are intending to reduce the DLA budget by 20% This is therefore a cut. Disabled people should not be facing a cut in their benefits for the purpose of reducing the deficit.

Anonymous said...

Part of what is supposed to be personal and independant will be reduced if the changes to help with food are taking into account.

At present if you need help preparing a meal chopping, lifting pans etc you qualify for the care section,however in the proposals for PIP it seems that being able to put a meal in the microwave it classed as cooking.

I want to be independant in cooking for myself in the healthest and independant way. At present the extra money means I can buy things ready chopped/half cooked and can function as a basic adult in the kitchen.

However if I am reduced to only ever having microwave meals (nothing wrong with the now and again) every day or having to use my very few care hours into getting another person to prepare food it leaves me far less independant and not at all personalised to me.

In fact it just means that other care jobs will not be done as a result, also without the extra DLA money its unlikley that I will be able to afford all those microwave meals in the first place!!

Anonymous said...

The main thing about is will it indeed help disabled people or will it in itself be a means through which they will be hampered from being able to live independently or dependently

Val Milnes said...

What I find insulting is the fact that they think because I have been supplied with a wheelchair, that puts me on an equal 'footing' (wrong term I know for a wheelchair user) with everyone else. Even if the world were completely accessible, particularly the built environment and others' attitudes towards people with disabilities were fair, people like me would still not be independent. I keep trying to convince myself I am only disabled when I try to stand up but that's just me conning me. My local authority withdrew all assistance from me and stated that by signposting me to a care agency, this would contribute to my independence. I am paralysed from the chest, my brain still works you fools, don't treat me like an idiot, I know you're after taking my money and your assessment will have no magic healing properties that make me less dependent on the cash!

Anonymous said...

A change of name from DLA will change the criteria by which people are able to claim it and be entitled to the payment. The govt have already said they want to reduce payments (some how) by 20%. My son gets DLA and over the years the extra money has been used in a variety of ways. It has been crucial to our existance as I am a lone parent and a full time carer living on Income Support. As I understand it DLA is to try to help with some of the extra cost of disability. PIP suggests something entirely different. The goal posts have been moved but we are not being told how far! Sue (mother to disabled 18 year old)

Anonymous said...

Changing DLA to PIP is just an excuse to change the terms and conditions of the award and to curtail all the DLA awards given indefinitely.

Anonymous said...

Agree, PIP is just a name change and appears to be a cost cutting exercise to further hit disabled people, on top of the terrifying ATOS assessments and entitlement to ESA. I have multiple sclerosis and my condition fluctuates- I am relapsing again, partly due to stress caused by losing my job- a direct result of government cuts. There are also plans to subject DLA (or then PIP) payments to ATOS assessments. DLA is a payment for those of us living with a disability, to help us live our lives independently and contribute to society. How would abolishing DLA and restricting the criteria help people like me get back to work? Without a motorbility car I am virtually housebound.

Duncan @Trabasack said...

Please fight to keep DLA as it is. There is an agenda here to make it harder to claim and cut the spending. The changes are not about helping disabled people at all but are budget led. My wife has an electric wheelchair but that does not mean she is as independent as a person who can walk, however sophisticated the chair is. We rely on the money from DLA to buy care and use it for the many extra costs of living with a disability. Please add our voices to those opposing the changes.

Anonymous said...

I agree with what is said above. this is more than a name change - it is about cutting the money spent on DLA and I can't see how that can be done without curtailing the independence of many disabled people.
As someone with severe mental illness (plus arthritis and fatigue)PIP would take away what little independence I have as it seems to be narrowly focussing on nursing care.

If the lower rate mobility is scrapped that might discriminate against mental illness sufferers who need to get out and about. It is extremely difficult to get social care for mental health and then it is not consistent over time due to staff turnover. The need for hobbies and social contact seems to be ignored by PIPs; and my friends do me more good than any social worker. I believe a great many reipients of DLA have mental health problems.

Maria Miller has said that DLA is not supposed to be spent on utility bills or food. One problem that is not being admitted is that Incapacity Benefit or ESA is not in themselves enough to live on long term for those who need to. White goods and furniture need to be replaced - even second hand this requires money, which for someone unable to work DLA helps to pay for.

I also use it to keep two cats, and go to the gym - my GP strongly advised me to and these things have helped keep me out of hospital at a cost of thousands of pounds a time, and is helping me delay further surgery on my knee, and reduced the time I feel suicidal - DLA helps me cope with an enduring and difficult condition that has affected me in many ways (eg not being able to marry and have children, having to give up a professional career).

Repeated assessments for those with long term incurable and severe conditions is unnecessary, wasteful and stressful to the person involved. It is unethical to rescind all life time awards as they were awarded for the reason above, and unless there has been clear change in an individual claimant's disability should not be reviewed.

Anonymous said...

DLA should be kept as DLA. IT works and has helped myself and many other disabled people for years.
PIP/austerity/cutbacks is simply a part of long-term plans being implemented to rid the UK of her 'useless eaters'.
All Governments are corrupt.

Anonymous said...

The name change is being done
deliberately. Make no mistake about it. This is because the meaningless term 'Personal Independence Payment' carries no gravity. When they want to kick more people off the benefit (and they will!) it sounds a lot less worse to take away someones 'Personal Independence Payment' than it does to take away their 'Disability Living Allowance'. They are abusing language to try and make their inhuman and cowardly agenda sound reasonable, and judging by the amount of lies and hatred that are being perpetrated by the media against the disabled - They appear to be succeeding.

These people are venal filth. Their decisions will cost many lives and make life a misery for millions of families.

Sam Barnett-Cormack said...

One absolutely essential point - it shouldn't be automatically reduced based on increased independence through adaptation - as we need the money to pay the costs of aids and adaptations! The draft suggests that, if you have and use an aid, you're assessed based on using it. How will we continue to have the aid if we haven't the money to pay for it? Paying for these aids is one of the reasons that we have higher cost of living - they certainly don't last forever!

I would also support keeping the name, if they have to tweak things tweak the assessment for the current benefit. While you're at it, though, keep the three levels of care and add a middle rate of mobility - after all, more rates mean it can be more finely individualised, which they claim is one of the aims.

Sam Barnett-Cormack said...

Just to be clear: I don't like what we already know about the proposed assessment, and while some bits are potentially okay, we can't even tell that without knowing how the points will work. That said, the idea of using points isn't great either (but has some advantages over the current system).

The current system can be improved, but nearly all the improvements I could suggest will increase eligibility, which clearly wouldn't fly at the moment.

Becca_Boot said...
This comment has been removed by the author.
Becca_Boot said...

I haven't the energy to comment fully on this (as part of my disability) but the people in the comments above give excellent reasons why DLA should stay. DLA isn't perfect and is still stressful to me but it's a whole lot better and meets the needs of people more widely than PIP would.

And as for the use of aids - I believe that it should be based on how you would be able to live without these aids - after all this is what "normal" people do. DLA has paid for things like my stairlift - so most nights I can get up to bed, we still have to pay for the upkeep of the stairlift and if it ever broke down then I'd be back to sleeping on the sofa the whole time.

Anonymous said...

Agree totally with the comment about using DLA to live, living on Incapicty for years or a life time is very hard work. And in order to do anything remotly life like, like buying funiture and replacing the basics DLA is a lifeline, without it I would be on the breadline.

In fact I get more in DLA than I am supposed to live on on Incapacity benefit! Espically for those with learning disabilities using the money to pay for hobbies "life" stuff other working people take for granted. If you dont have DLA you could never take part in normal society as you just could not have any money to spare. DLA should in part make up for your ability to take part in society if your disability didnt exist and your could provide for your self.

I feel really guilty now every time I use DLA money I feel with changes coming I should be saving every penny incase suddenly I cant get it, full time wheelchair user dosnt seem to be enough to qualify anymore.

rayesi said...

I never wanted to be disabled,(like us all!) but I am! I paid National insurance, in case I ever needed help, if I became in need... I have an incurable disease, that took years to actually get a diagnosis. It's debilitating, disabling, and rapidly progressed in the past few years. I coped as best as I could, and adapted around many things that others take for granted. I have provided my own zimmer and elbow crutches, whatever I need to make life worth living. I worked as a Nurse for 33 of the past 36 years, anything up to 84 hours a week. I've brought up 2 children, and paid my way in society, including my own home. At what cost? I have lost my career, because they cannot employ me because I'm now disabled. I also had to show i was doing all I could for my (rare) condition myself, and petition the local PCT 3 times for treatment, because it was not on their list of ailments covered. (I am now in one of their treatable categories) I now have to pay privately for continuing treatment myself, FOR LIFE! This is what I use the DLA for, it's a godsend. Disability LIVING Allowance. Save thousands by not changing it's name from what it stands for. That's economical sense! Another way is to actually employ people with medical backgrounds to do the ATOS assessments properly. Disablement is NOT a tick box criteria.