One in six PIP claimants have no extra costs linked to their disability

[Allseeingallknowing]

https://www.thesun.co.uk/money/40693771/pip-claimants-disability-benefit/
So, can money be saved here?

The whole point of pip is that it helps cover disability related expenses. If you're paying from 'your own' money it's not doing the job it was intended for.

Forcing people to use taxi transport when they have a cheaper option available will be more expensive for the state. This is exactly the kind of bureaucracy we don't need and that often ends up making things more, rather than less expensive.

@BluebellBethI don’t think any of these are the silver bullet death knell you think they are. They’re simple implementation considerations that any reasonable system designer would be able to work through.

As an aside, I never realised the obsession with people wanting to give friends / family petrol money. It’s never something I’d thought of as it’s never something I would have expected friends / family to want if they’re helping out.

You’re dragging the discussion on a topic down a rabbit hole which I think misses the overall point. I guess there’s a view that vouchers or targetted cash free support better provide for what is required, help leverage economies of scale though category management type approaches, and must reduce fraud on the basis that the prize is a less artifice access to physio / heating etc rather than cash to be spent on anything.

re. Spending on cash / being forced to use taxi, concept is that they’re not however off they’re coding to not use the provided for means (which for transport wouldn’t just have to be taxis) they’re able to do so but clearly should pay for doing so

Vouchers won’t work I can assure you as they will lead to extreme frustration and more hours work for carers. For example with the taxi situation, my son currently has a taxi provided via disability student support. The taxi company he uses was obtained after they tendered for the job. They charge substantially more than an uber but that is the system. It’s a very rigid system with a prescribed journey from A to B but if on one night he needs dropping off t C due to time pressures it is heavily complicated to change even if the journey is shorter. Someone at disability support had to be contacted to approve the change ie the PA has to contact them to change the route. We need to wait several days for approval. The care agency has to send the taxi a timetable for pick ups and drop off as it varies daily. All of that requires time from the care agency, the PA and the disability support officers. Also the number of trips ordered is subject to change and we have to go through the same process.

It’s a very rigid and non dynamic system compared to ordering an uber.

Also expenses vary.

As an example, my son is going on a university trip aborad. As things are we have had to apply in advance for the extra social care hours. That takes weeks to administer. Although the PA’s euro train is covered as well as room annd 2 meals everything else is not. So my son’s pip has to shell out £30 per day to cover the PA lunch and local travel costs for a week.

Having a PA is an expense even if their hours are covered by social care as they need to eat and travel with the person. Someone once suggested that my sons should never go out to save money but the alternative is institutional care at £150,000 to 200,000 plus per annnum per adult. The £40,000 social care bill with UC and PIp is far cheaper.

Also frankly, family carers are already at breaking point feeling like Cinderella who have to get home from a allowed night off with PA cover ( mine had to leave at 11pm so that was my curfew last night). Mess with PIp and we might all go on strike as we are not messing with flipping vouchers. We get £85 approx a week which is taxable. I can assure you I’m refusing to care if they mess with the system and add to the work load. So that is a huge cost when we rebel and we are already simmering with stress, overwork and frankly feeling pissed off. The admin burden is too much what with UC interviews for the people you care for, pip review and for me disability student admin/ PA timetables and taxi timetables. We also have to arrange all day to day admin eg prescription repeats and gp appointments.

The answer is this will be the final straw that breaks the carers back .

I do find it surprising that disability benefits are not means tested and/or determined by what costs related to their disability someone has.
I've just filled out a DLA form for my daughter and was suprised to learn that it isn't at all awarded on basis of income or costs incurred by someone's needs, and also that the form did not require this to be included.I had actually written out a list of additional expenditures related to her condition in preparation as assumed these would need to be itemised within the form!

Any reform that adds to the admin burden of carers will back fire. We will push that admin burden onto social care providers who in turn will demand more hours at £30 an hour plus.

As carers ,we wil refuse to administer vouchers and demand it’s a job picked up by social care so they in turn will require more admin hours.

As it is I am at the point of asking social care to pick up the time and tab for running universal credit and his pip claims. I’m fed up with the annual interview for UC where you have to upload bank accounts and discuss expenditure. I’m fed up with having to redo pip every few years when we already have detailed social care reports and social care know a lot more about my son as they can have dynamic access to care notes and also demand structured care plans to show what steps are taken to progress. The whole pip situation is a farce/ duplication when someone receives social care which requires day by day reports for CQC.

The admin burden is constant eg planning what my son will do on non university days, lapsing with his non paid work experience, liaising with student disability support as one of his computer software programmes is not working, checking taxi times with PA as a mentor is sick, doing his bank accounts for costs incurred and transferring payments, ordering more meds by email to the GP, sending in a copy of his passport for the university trip, getting messages from UC re adjusted payments to take into account student loan, liaising with disabled social care groups to set up a subscription so he will go out somewhere, working with care agency to source another Pa for weekend care so he can do work experience, sorting out arrangements for his PA who will take a week off during university term time, arranging PA 24/7 cover and checking direct payment budgets fro when DH and I dare to take 5 days off from care to go abroad without DS. This ends up with a team of 3 PA to cover 24/7.

Add in messing with vouchers to the mix and my son will be needing permanent 24/7 care at £30 x 7 x 24 x 52 annual costs. I am not caring anymore for £85 or whatever per week.

Getting rid of pip will cost the state more for higher needs cases.

Most pip claimants are on very low amounts so it will be little savings. Only about 16% work and very few will have high paid jobs. Those that earn more argue that they need the pip to stay at work.

As it is means testing is a sinister thing as people cannot save up for eg equipment or a holiday to cover the cost of a PA on holiday ( duplication of costs).

For those with life time disabilities who already feel that life is not worth living it will make that even clearer.

Lots of parents with more severely disabled adult kids are having to set up complicated trusts due to means testing to give kids deposits for housing so they control where their kids live. This saves the council money as they don’t have to provide the initial cost of housing. The housing benefit covers the mortgage and that proportion outside the trust in turn will go back to the state when the person dies as a charge for social care against the property. We are talking non rich people who use any inheritance they get to support their kids rather than using it on themselves. So it’s a win win with one less social care house used and most monies returned to state on death. But this is the complexities of what means testing does.

Supported living gets mixed reviews. Some occupants seem genuinely miserable. Hence parents feel they have no choice but to sacrifice their spending capacity for retirement to secure their more severely disabled child’s future.

We are talking about people who will remain disabled all their lives and what quality of life we want for them. These are the ones who you know are disabled even with so called ‘hidden’ disabilities. These are the ones who were different at school and obviously disabled and who will only socialise with other disabled people or in disability groups and are highly highly vulmerwble.

Means testing for UC and social care results in additional expenses for parents who want to provide for them when they die with extra lawyer and trust fees. Ironically this saves the state money as they would otherwise be rooted into institutional care or the state would have to provide the housing costs.

What's the obsession with vouchers and why only for pip? Why can't child benefit be paid in vouchers to ensure it actually goes on the child?

The New Zealand system, as cited in the same report, reimburses people for specific costs related to their disability. They have to keep and submit receipts.

The German system, also cited in the same report, specifies the costs of paritcular disabilities and conditions.

I think the NZ system is better. I guess an easy criticism is ‘what if a family member typically provides a taxi service’…..well then there’s no extra cost is there?

Running someone’s entire life is a admin burden as it is.

Imagine running someone entire life, where they go, what they do, how they do it and who does it for them

eg prompting them into shower when they lie and say the showered, deciding they eat for breakfast and prepping eg porridge , deciding what they wear, is their toilet blocked, have they taken their meds, liaising with go sorting out the flu jab, checking timetable what are they doing today, doing their shopping eg for more pants, checking UC messages, checking messages from college or university, changing mentor timetable as one mentor has dropped out, liaising with PA to discuss day, chasing taxi that is late, checking through tidying their room and cleaning their clothes, cutting food to help them make sandwich, making sure you are back for their return, debrief from the PA, dealing with a melt down and threats to kill themselves, checking therapy appointment, chasing a Pa who has not responded to requests to go on training and supply criminal records check, liaising with care agency about alternative recruiting, emailing university student support about exact funding for trip and what costing are, itemising costs for the week to do a bank transfer with clear annotations for social care audit. Checking university bag to ensure no rotten banana left in it. Cooking and showing disabled person what spices to use and how to cook ( having significant patience when allowing them to participate with what they can do ) listening to them explaining about issue they had during the day, noting nails needs cutting and getting DH to do this etc etc. running through their next days timetable and what they will be doing, telling them when to go to bed, being worked up at 12.00 with toilet blockage issues etc etc

Add in messing with vouchers - sorry it’s a no not unless they significantly increase carers allowance for the additional burden .

So that persons time is worth nothing?

Carers give up their lives and currently get about £85 per week. Many do so with no legal compulsion to care. The State has a duty to care and using parent carers is almost free in comparison. Once a child is 18 weeks can tell the state to take over and trust me, it’s tempting when you have burn out. you can go imagine the restrictions on your life when you have a disabled adult child. You see your mates go off for 2 week adult holidays with no cares and you can’t. You have to beg for respite time. Yesterday I had to get back from a night out at 11 pm as my sons Pa needed to get the last train home at 11.15. imagine having. Child that never grows up and being restricted permanently.

As it is it’s nit my fight as my sons pip goes on weekly psychiatry as counselling was not working.

But I can see that pip could help families who have lost a paid worker due to caring duties.

So that more admin for carers. Will carers allowance be increased to reflect the additional burden or shall we ask for more social care hours for the PA to manage it?

All these schemes have a cost you realise. People’s time is not free unless they are unpaid carers and we are already at breaking point.

Do you work for free?

No I never said a carer’s time is worth nothing. I do actually think carer’s allowance needs increasing. There are costs that are born by the carer rather than the disabled person. I also think respite care should be made more available to parents of severely disabled children and young adults. I don’t think these costs should be ‘sent’ via pip. Imagine if the young person decided not to reimburse the carer?

Why is there no extra cost if family do it? Is their petrol and parking free? My dad once had to get half a day off work because I had to have an emergency operation. We were there for about 3 hours. He was 45 minutes away so that was petrol, parking and loss of wages. Would you do that for nothing?

I sometimes go to a different hospital that's not local about 45 minutes drive. No parking fees thankfully. Would you do that for free on a regular basis?

I see it a bit like the child benefit that should be universal but unfortunately isn’t. It’s just recognition that a civilised society can give to people when they are highly likely to need it. Like child benefit, technically the responsibility for extra associated costs lies with the individual, but if we all pay into society then it’s nice for society to give something back.

Opportunities and support are not available to everyone. In fact, according to the Social Mobility Commission, the structural lack of opportunity for the working class is the primary cause of poverty in the UK. This watchdog was scrapped last month by the government presumably because its research directly undermined the government propaganda that opportunities are popping up all the time but the working class are either too stupid or too lazy to grab them.

😂 This is hopelessly naive. Work out in advance how many medical appointments for the year? Cannot be done for most disabled people because conditions fluctuate, conditions flare up, conditions cause other new conditions to emerge, conditions increase risk of accidental injury.

You would have an easier time predicting exactly how many squares of loo roll you use in a year.

No evidence it would be less. I can foresee in this digital age a flood of fake vouchers…

Thanks for sharing the insight, very helpful to understand the admin involved. One Q if you don’t mind and don’t answer if you don’t want to of course: if your son is able to go to university (presumably studying a degree), how come he’s not able to do some of the admin himself instead of you?

Well pulling from my MBA and MPA, it is fact that a cash benefit is the cheapest and most efficient way to get the target population the support they need with the lowest rate of fraud.

Vouchers, catalogs, receipts for reimbursement all require huge administration costs and are more vulnerable to fraud.

These have been proven over and over. These ideas are not new, they were discarded for good reason.

A side note is that this target population is disabled and many of the most needy recipients would not be able to navigate a voucher, catalog, or receipts for reimbursement system. Not due to lack of intelligence but due to lack of energy and time. It would be a part time job to stay on top of it all, akin to filing claims to a private health insurer in the US. Especially if there is a gov employee (or worse AI) on the other end denying vouchers, querying catalog purchases, and quibbling over receipts.

It’s a very emotive subject for people living this life.

@AmberTigerEyes for a lot of people on these kinds of threads, having a voucher scheme isn't about saving money. It's about punishing people for being disabled. It's very sad the way some want to make disabled people's lives more difficult than they already are.

The arguments against vouchers are exactly as you have said, but people don't want to accept that.

Just like there’s a flood of fake digital train tickets, plane tickets, football entry tickets, uber accounts….? Clearly not. Digital is more secure than hard copy

Agreed. That would be a good idea also*. Similarly for JSA etc etc.

*not withstanding previous suggestion of scrapping child benefit