PIP survey - intriguing!

[SurveyServus]

Hi all

I've just been sent (in the post) an invitation to take part in a survey regarding Personal Independence Payment. It's being done on behalf of the DWP. Apparently they have randomly selected over 60,000 people who claim PIP.

It's called the "Areas of Extra Costs Survey". Apparently it's to identify the sort of extra costs disabled people face to overcome barriers to participating in society. (<- my paraphrasing.)

Presumably this is part of proposals to change PIP.

It's good that they are actually asking disabled people. It's also good that they are considering what actually costs money to inform how to target funds.

But I am concerned it's going to be one of those surveys with limited response options or no questions that cover where the money is actually needed.

Sharing here as I thought it might be of interest to posters.

It’s a tick box exercise to say “ claimants have been asked for their views” in my opinion and if I receive one, I will not be giving them more opportunities to twist the statistics in their favour
it’s well documented that a disabled person spends 1k more meeting their needs and you don’t need to be Einstein to understand why.
individual needs vary and frankly is no ones business what the money is spent on.
its purpose is the raise the quality of life up to a person without disability or illness
Personally, my enhanced rates are spent on
pre chopped veg and meat. Taxi’s( £35 to hospital appointment one way) aids such as my new £160 walker, suitable clothing and footwear, monthly hair appointments( have one functioning arm) and shock horror my lovely dog walker. I also give my son fuel money as he cleans my floor and changes my duvet cover) Happy to give posters an insight

It’s a tick box exercise to say “ claimants have been asked for their views” in my opinion and if I receive one, I will not be giving them more opportunities to twist the statistics in their favour.

I don't blame you.

@uncomfortablydumb60
Personally, my enhanced rates are spent on pre chopped veg and meat. Taxi’s( £35 to hospital appointment one way) aids such as my new £160 walker, suitable clothing and footwear, monthly hair appointments( have one functioning arm) and shock horror my lovely dog walker. I also give my son fuel money as he cleans my floor and changes my duvet cover)

From what I saw of the questions, all this was specifically covered. Same for other posters who have outlined what they spend their PIP on.

The only obvious thing not covered is living costs caused by reduced income due to disabilty. This is the big thing concerning me so far.

**Oh, and this may be not much or may be important - when I logged in using the numbers provided I got a message saying "you should change your password as this one has been found in a data breach"!!

Ignore @Viviennemary , she rocks up on every benefits thread, leaves an ill-informed, inflammatory comment and then never responds. Attention seeking at its most pathetic.

Oh thank you, it’s a matter close to my heart due to DD but when I engage I don’t look at posters names tbh.

I haven't received one and I have more unusual needs. I need constant air con because my body can't tolerate even normal room temperature above 19c without becoming semi conscious and various other awful symptoms. If I only have it in one room then I'm literally tied to that room 99% of the time. So to use the rest of my house most rooms need it. Huge cost. It takes me years to save pip for it and as soon as it's bought I'm saving up again as every 5-7yrs due to constant use it needs replacing. It's miserable and I dread summer every year in case they fail.
Plus there's the cost of regular maintenance of them.

Then there's the frequent changes of mattresses as I have to rest most of the time and they don't last long. The softest ones I need always cost the most. The cost of increased electricity. The silly prices of gluten free food I need no longer on prescription for free. The easy prepared veg, meat etc to dump in a slow cooker. The gardener. Extra bedding, other smart gadgets so I can do more without having to move around more as I can't stand up for more than a few minutes or walk far or repeatedly. It never ends.
Despite enhanced pip for ongoing basis 10yrs light touch review, sometimes it's not enough to cover everything and there's even more costs than I wrote.

Although it sounds like a nice idea to tell them what we spend it on to give them an idea, even though it's none of their business, I really do think there's an ulterior motive to find ways to cut it further. These incoming changes gives me stress I really don't need and permanently make my physical health even worse.

I wonder what the criteria for sending them out. Is it for people on specific rate or for specific conditions or is it age related or people who are close to their review?

I’ve been advised that this is essentially a research exercise based on a sample of claimants, chosen to provide representative sample according to sex, age group etc but not sure of details.

Hmm. I think this is an odd thing for DWP to do and is a rather blunt tool.

DH gets PIP. He doesn't spend it on anything specific, it is basically used to meet household expenses plus perhaps things like podiatry when needed and the cost of the winter fuel bills, a new wheelchair every few years etc. Taxis.

But this is because I am his carer. If I stopped doing what I do he would need to pay for care. That would cost far FAR more than his PIP and the council would have to contribute to the costs. Filling out a survey on what PIP is spent on would not pick that up.

Do NOT fill this out.
It's a trap!

The DWP are extremely underhand with these so called surveys.

All recipients, if they choose to fill in this questionnaire, should be able to start with care labour costs - regardless of whether they receive it - minus the cost of CA if a relative provides care but only if that person doesn’t have to provide care in between visits not less than 35 hours per week. I believe £60 per hour is the cheapest going rate based on what my son’s DSA staff charge but could be up to £120+ per hour for more specialist care. CA is £83.30 per week for at least 35 hours of care. That’s £2.38 per hour. Bargain.

This alone will show that PIP plus CA is reducing cost of care.

This is before you even consider the extra objective costs of care. Do you not need PIP unless you spend every penny in a 4 week period? What about lumpy expenditure? Are disabled people not allowed to budget? Time limited unemployment benefits don’t allow for this because of the back up of savings or UC if you can’t find work in the short term but disability is often for life. You have to budget to remain independent.

I had that text as well. No idea why as I'm not eligible and have never applied for it or any other benefit. I just thought it was scam.

It is supposed to be a random selection of people on PIP, was the impression that I got. So a cross section of claimants, but who knows.

Again this assumes recipients of PIP receive care - professional or familial. They don’t. Many recipients work.

The problem is that even though PIP is an in work benefit many of us who get it are still too disabled to hold down a job.

I scored really highly on my PIP assessment, all 4s and 6s in the 6 care categories I need help with and 16 points for mobility. So according to them I am significantly disabled.

ESA have graded me as being unable to work in the future due to severe functional disablement.

However, before this life I had a good career, DH and I had bought a house. Due to this i need to use my benefit money to pay the bills.

I do use PIP to pay for an adapted car.

There are many many therapies and aids and services that I would love to use my PIP money for that would enhance my quality of life. But I cant affford them.

Our house has been in negative equity for years, we cant sell it. We cant walk away either as DH cannot do his job if he is bankrupt. We are caught in an absolute trap.

If we rented we would have more help and some spare money, but we are here with a high mortgage....which when we bought was absolutely doable on 2 good salaries (mine was really good) and due to a twist in fate we are now existing.
And there is no option but to use my benefit money towards the necessities.

Yes bills are higher, esp heating and electricity. But if help were to come in vouchers we would be homeless very soon.

Yep. And many of us - like me- don’t work and don’t have any paid carers etc either. I would find it entirely too stressful to have people caring for me. My husband (who works full time, outside of the house) does things I can’t physically do but I don’t really have any care needs as such - most of my disabilities are such that I just don’t do things that make them worse. That might mean I have a lot of days where I barely leave the sofa. And some days where things are better and I can do some stuff (and yes I was honest about all this on my forms). I think there’s a huge misconception about what it’s like to be disabled. We’re not all the same and that’s why PIP should never be voucher based.

They already know what the costs of disability are. Obviously they decided on what the amount of PIP should be in the first place and they as ever base their benefits on the minimum payable amount. Also, this 4 points in one category is a total indicator that they are trying to deprive people of help rather than taking a holistic view of an individual’s health issues. Do you think they intend to give everyone on PIP a new review before depriving them of any income? I would wager that the answer is no. The cost and time to do such a thing would be prohibitive. What is intended is for them to do a sample survey of 60,000 disabled people using inappropriate and misleading questions with limited options of response and then use it to justify depriving disabled people of much needed income. It’s insulting and inhumane, but everybody knows this. Also, many of the people that they seek to deprive are older people who have already made considerable contributions to the system after paying many years of tax and NI contributions. (I bet none of that is considered). There are other ways to raise revenue that everyone knows about but they are not quite as PC as disabled bashing. Shame on Britain and Labour in particular!

We’re not all the same and that’s why PIP should never be voucher based.

I have not heard any more about this farcical idea, on the news lately. Hopefully, this ridiculous idea has been dropped. It would be totally unviable, and shows that the people thinking up these schemes, care nothing for disabled people.

Unfortunately they have not, I got a letter only yesterday and will be researching it more before deciding what to do with it. I don’t like these tick box surveys with limited scope for answers because they are always engineered to present biased information. What is clear is that the knives are well and truly out and us disabled and disadvantaged people need to watch our back.

If I receive one,I won't be participating as I also suspect that they'll use it as an excuse to reduce my money. And I agree with the previous poster who said it will give fuel to the fire of certain 'newspapers',along the lines of 'Hard working tax payers fury at PIP claimants using YOUR cash to buy a takeaway!'. Incidentally,why do these publications always use the words 'fury',never 'anger' and 'cash',never 'money'?

Yes it is clear, and that is why personally, I would not give their form the time of day.

I don’t receive PIP so have no idea how it works, but I do know that you can receive it if working which is fine. As it’s funded by taxpayers (I know some recipients will pay tax) surely the government are within their right to ensure that it’s being used for its intended purpose. I get that some recipients may be cynical about completing the survey but surely by completing it and being honest it gives a more realistic picture of what disabled people need.

I get that some recipients may be cynical about completing the survey but surely by completing it and being honest it gives a more realistic picture of what disabled people need.

Disabled people need different things, from other disabled people. Basically put, their needs are not all the same. They know what they need, and spend the money that they are receiving towards those needs. What more do the DWP need to know, other than the fact that a lot of disabled peoples awards are not enough. They are not looking to increase payments, are they?

surely the government are within their right to ensure that it’s being used for its intended purpose

What is the "intended purpose?"

@Ruggerlass If this was genuine research about disabled spending of PIP and needs, there would be a rather different attitude towards it from many of us.

As it is, from what I've seen so far, my understanding of the questions being asked, (and the ones not being asked) is they're very specific, and very funneled to not gather all sorts of detailed answers, only specific ones, and not geared towards actually finding out what exactly disabled people are spending their independence payment on.

What I've seen is equivalent to making a questionnaire about what parents spend sending their Dc's to school and asking about if they brought pens, and lunch box snacks, but not school uniform, and ignoring the areas of cost of any child who cycles to school. Would you consider it genuine research or controlling a narrative?

As far as I can tell they don't seem to be asking about or covering working disabled peoples additional expenses through work?

If I'm wrong (not been able to any full questionnaires yet only parts of them) and anyone's seen the full questions please tell me about those work related questions, as everyone I've asked so far hasn't mentioned their existence.

Surely they'd be keen to know how PIP supports people like me to be in work?

My biggest 'area of need' in which I incur serious disability expenses: yep, work!

@SurveyServus (and anyone else in receipt of a letter) Can I ask if your letter is from Verian please?