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.

Devils advocate says: the benefit is not for “anything you please”- it’s specifically for the additional costs generated by your disability or condition that gives rise to your eligibility for PIP. These will be different for each claimant. Eg claimant one might need to employ a gardener once a fortnight. Claimant two might need a carer every day. Claimant three might need an adapted toilet and incontinence supplies. Claimant four might need all of the above. Yet now they all receive exactly the same amount of money. It could be argued a more targeted approach (by way of cash and/or vouchers is actually fairer

No because it's none of the governments business what I spend my money on. Just because I'm disabled doesn't mean you can dictate my daily life to me. Yes I need the money. But no I don't want vouchers.

It is though.
You have to meet certain criteria to get PIP. None are about what you would spend it on.
The money goes into your account and it is yours to spend how you want.

Exactly. And why should I have to be told what I spend it on? I'm disabled, not educationally subnormal.

Yeah you spend it how it works for you. I think with the cost of living crisis, a lot of people on PIP are spending it on bills and food just to get by. That is not right. I think that is why there are more people claiming. They are using it as a top up to crap wages or benefits

Yep. I spend it on bills and groceries and taxis. If I didn't have it I'd be on the streets because it's for my day to day expenses. I don't think some people understand what it's like. You're already at the mercy of the government and could be cut off whenever they decide to change the rules. Being dictated to about what I need to spend my money on is just taking away even more dignity.

It could be argued a more targeted approach (by way of cash and/or vouchers is actually fairer

It also could be argued, and has, how the voucher scheme, (favoured by some who would not have to be issued them at present, and so have no skin in the game), would be totally nonviable, and would no doubt limit the freedom of choice, that disabled people have at present, where they buy their equipment etc from. Unless you think that disabled people should not have the freedom of choice, like the rest of the population? Cash is fine, and works well. Why change things, for what purpose?

Why does it seem as though disabled people are constantly being made to feel like we are all just wasting money on goodness knows what, and that we cannot be trusted to know what we need, and somehow need to be audited in future to make sure we are spending our money right. It stinks of othering to me.

If people on PIP are to be subject to vouchers then why not people on other benefits too.
You get child benefit? You have to prove it is spent on your children.
Pensioner? Bills and food only. If you have anything left over then you obviously get too much.

I know that - what I suspect will happen is that applicants will get a more tailored award according to need which will be determined by their actual costs. Im not saying I agree with that, just acknowledging the direction of travel

The award is money. How much more tailored could it possibly be?
The award is based on how many points you get and how severe your disabilities are. If you're saying each person should get a completely unique amount of money I think that would be way too much admin work for the DWP. And why should one disability get more money than another anyway, any more than the system already?

Unfortunately some of us can no longer work, but it’s about a broader spectrum. It is supposed to be used to allow a person to be independent. That means many different things to many different people. I am happy to answer real questions but have reservations about tick box survey type ones with limited scope for answers, and that don’t allow the person being questioned the opportunity to expand on their answers. If it’s about paying tax I have done that for over 35 years before becoming unwell but will that be considered? I doubt it, because they don’t ask. What did I do and what was my life like before being on benefits, they don’t ask. Benefits are not something many of us choose to be on, most of us are actually forced buy circumstances beyond our control to apply for them. And as I keep saying the amount has already been worked out based upon the government’s idea of what a disabled person might need to make ends meet. The allowances for any benefits are far from generous and PIP is no different. Also, the previous person is right why not ask everyone on benefits what they spend them on? Also, before you even think about claiming let’s see every bank account that you have and each statement from the last 3 months. They know what you’re spending your money on and if you’re on benefits they own you. People need to wake up and smell the coffee.

Actually, if someone needs carers or support workers they should be provided by social services and the person billed for their assessed proportion of the care costs, etermined by their income. Nobody should have to spend their PIP on carers directly, there's laws in place to provide them for people to have a reasonable quality of life. In reality, unless you're stinking rich and can take the council to court to force them to comply with the law, it's not going to happen.

If someone needs an adapted toilet, that too should be provided by social services after an occupational health assessment to determine need. It's free to the client. People shouldn't be having to use PIP to pay for necessary adaptations.

If someone needs incontinence products they should be provided by the NHS.

The laws are there, they're just not followed. People shouldn't be limited in the help they receive based on the limitations of their PIP payment and how far it (doesn't) stretch. The help they receive should be based on their needs. The PIP is to raise people's quality of life by accounting for some/all the extras that disability causes, those things which don't fit into the categories that are supposed to be provided anyway. So no, vouchers isn't the way to go because people need freedom to spend their income however they want, just like people who aren't disabled can. Disabled people aren't "owned" by the non-disabled. Benefits belong to the person they're paid to, not the organisation who gave them out. No other categories of people are demanded to justify to others what they spend their own income on.

The politician who said it ages ago about vouchers clearly didn't even know/understand the laws around PIP and what it's for or the laws around disability and social care/healthcare, in general. Or maybe he did but thought it sounded like a good thing to say to rile people up about "wasting our taxpayers money" and that kind of bullshit they like to spout to turn people against the disabled.

Actually, if someone needs carers or support workers they should be provided by social services and the person billed for their assessed proportion of the care costs, etermined by their income.

The problem with this which I've already lived through, is the quality of who you get, which you're still handing your PIP over for, just through a middleman.

I had standard ones initially, but they couldn't/wouldn't turn up at times to allow me to work. I was expected to live and organize my work and hospital attendance, round their availability. I appreciate the conditions they work in, but it wasn't getting me to work, or hospital, or to bed after it.

The lot my council then resorted to in order to save money, where a total racket and far worse.

Supposed to only be registered carers, reality was whoever's friend, mother or sister was available, would eventually turn up, often many hours late. Spend twenty mins peering at care forms, inappropriately tick boxes for everything while doing little of it, slop water all over the floors daily because they struggled with wearing flip flops, and leave it for me to deal with the mess. They also demanded the whole place heated better for their needs.

They'd disappear off having a general look around instead of assisting. Return to move a bottle of fortsip from the shelf to beside me, and tick breakfast/dinner had been provided, then sit in my wheelchair on their phones counting down time, while I pleaded to be disconnected from a machine and got up. I was frequently disconnected and just left in bed.
Their English was very low, and they did everything at the slowest possible pace, ignoring most needs. Many dangerous things happened as standard, and there was little attempt to even pretend to do the job.
The council didn't care and wouldn't authorize direct payments. I was told I shouldn't be working as it put pressure on others to provide services, intended for those entirely dependent on whatever could be got.

Their 'care' provider carried on charging the council for two years after I binned them off, and I had a fight with the council, who felt I should pay towards the dodgy bill..
The fact I worked was held up against me. They wanted me on full benefits which they could then take and use as they saw fit.

Only when I suggested they where complicit in the 'care' companies corruption and fraud, and I was involving the police, was everything dropped.

With my own carer in place, I've been able to work my way up to far more independence, strength and ability, and they do better too.

Please let me choose and pay for what I need within what I can afford, not be used as a job creation system for the unemployable, profit making for the highly questionable, and middleman pen pushing jobs for the council.

I never want to be 'owned' and abused by my crappy council again.

What SS do and what they should do aren't the same. My supposed support worker had no understanding of my needs and claimed I was "awkward" because I found loud noise painful. (I'm also slightly deaf and struggle in loud environments) She refused to work with me because of that.

Some posters accounts of their lives, are so raw, and, for me eye opening. I am always learning something, about the different challenges that some disabled people are facing. Saying that, they should not have to feel that they must try to justify how they spend their money, due to the recent onslaught on them. We have a system that works, in the sense of how the benefit is paid. I have said it more than once, if the Government want to make savings, and any meaningful change, then they should look at the actual process of the PIP. The assessments are hit, and miss, with claimants, and result in record numbers of people seeking tribunal, which is where a substantial amount of money is being spent. Something needs to be done about the way that they are being conducted, and by whom. They are not working, in the main.

I read an article today that if the new assessment comes in as it currently stands, it will penalise women by 50%. Apparently the 4 points rule favours men. That is worrying.

Do you have the source please?

https://www.benefitsandwork.co.uk/news/labour-knowingly-hugely-discriminating-against-women-for-pip-cuts www.benefitsandwork.co.uk/news/labour-knowingly-hugely-discriminating-against-women-for-pip-cuts]]

Interesting article🤔

I use mine for a cleaner and to offset me having to drop my hours at work

That is good.

Do Not Fill it in.

If you look up the ‘Canary’ report on this supposed ‘Areas of Extra Cost’ the explanation is all there. This is a harmful cost cutting exercise designed to look like care. Whatever you hear about it, from anyone, including charities, it will NOT benefit any one (apart from those businesses participating in PIP replacement voucher schemes). I’ll just use one word. Catastrophic!

THE DPW SURVEY ON PIP ADDITIONAL COSTS
Heres what’s in it.

https://www.thecanary.co/uk/analysis/2025/04/17/dwp-pip-survey/

…and remember PIP stands for Personal Independence Payment. The clue is in the name. It’s Personal, which means it’s NOBODY else’s business. It’s Independent, meaning that it keeps people from being a strain on local authorities and family, keeps them in a job if working age, & leaves them with a little dignity. This party showed you who they were when they took away the winter fuel payment from people that badly needed it, I was one. That should tell you everything. That wasn’t in their manifesto! Neither was this.
THIS IS NOT WHAT IT PRETENDS TO BE. Read the article above on the link.

They have enough information to work on, the myriad ways how people utilise their PIP money. They are targeting the wrong people with their proposed cuts, imo.