Labour has been urged to trust disabled people to spend benefit money, as the Government considers moving to a system which offers “non-cash” support.

Personal Independence Payments (PIP) currently provide up to around £780 a month to help people pay for their extra costs of their disability.

The Government has said that “cash will remain the foundation of the award” – but has proposed that benefit could partly be made up of “services and other non-cash support”.

The PIP reform plans could see disabled people offered “equipment and aids; mobility and transport; clothing and bedding” – rather than cash alone.

Imali Chislett, a 25-year-old from Southampton with a range of disabilities, said the idea of moving to non-cash support was “ridiculous”.

She told The i Paper: “PIP was supposed to be about independence, and not being able to spend [cash] limits that independence.

“It’s horrible to think that we can’t be trusted with money,” the PIP claimant added. “It feeds into this idea that we’re somehow swindling the system.”

‘PIP is helpful – but it doesn’t cover everything’

Chislett – who has hypermobile Ehlers-Danlos, a tissue disorder which causes unstable joints and chronic pain – gets around £780 a month. This includes the highest rates of both the daily living and mobility components of PIP.

She also has osteopenia, which weakens the bones, and lifelong adrenal insufficiency, which can cause muscle weakness, as well as hearing loss and autism.

“PIP has been helpful. But PIP doesn’t cover everything,” said Chislett, as she explained how she spends her benefit money.

Around £320 – the PIP mobility component – goes on the monthly lease payment for her Motability car. Her SEAT Ateca has an adapted boot hoist for her wheelchair.

“Being able to go places in the car is hugely beneficial for my mental health. Motability is an amazing scheme – it’s allowed me to be so much more independent that I would without it.”

Chislett estimates that she spends £100 to £150 on parking fees, because she doesn’t have free access where she lives. Another £50 to £100 can go on taxis to get to hospital visits when carers aren’t available to drive her car.

Around £50 to £100 goes on higher energy bills, and another £25 to £50 goes on extra food costs because she needs to buy more pre-prepared food. Replacing parts for her wheelchair can cost at least another £100 – £200 a month.

“Having disabilities is expensive and exhausting,” said, co-founder of Inkfire, a disabled-led marketing and tech support company.

“There are always hidden costs – even something simple like £20 compression socks that help with support and circulation.”

‘Difficult to have faith’ reforms will work

Disability minister Stephen Timms, who is leading the Government review of PIP, has promised that no claimant will be forced to accept services or equipment instead of cash.

The move to “non-cash” support would be done on a “completely voluntary basis”, Timms told the at the Labour conference.

Chislett remains sceptical that moving to more “non-cash” support would make her life easier. It is “difficult to have faith” that enough non-cash support “will actually be provided” by the Government, said the 25-year-old.

It could also put “more strain” on the NHS if it is expected to provide any of the non-cash services, like physiotherapy, she added.

“It’s just very difficult to trust that the decisions being made higher up are in disabled people’s best interests,” she added. “The concern is they are worried about saving money.”

Work and Pension Secretary Pat McFadden recently told MPs that the PIP review could see overall spending on the benefit reduced.

The Cabinet recently suggested to the Work and Pensions Committee that the system was struggling with a rise in claims from people with anxiety, depression and neurodiversity.

McFadden also said there was “nothing to stop” the Timms Review recommending changes that would cut spending on PIP. Spending is forecast to rise from £32.1bn this year to £44.7bn by 2030-31.

‘You can’t push people into work’

Changes being considered by ministers could see PIP tied to work in some way for the first time – but it is not clear what requirements might be expected of disabled people.

Alan Milburn, who is leading a review of the youth unemployment crisis, has suggested changing PIP for 18 to 24-year-olds so there is greater focus on getting young disabled people into employment. Timms has said reforms could “enable PIP to do a better job to support people into employment”.

Chislett is concerned by the idea that PIP could be conditional on job searches for some people.

“I think it would be positive if there was genuinely better infrastructure for disabled people – particularly young disabled people – to find a way to work if they are able,” she said.

“But you can’t take [PIP] support away to push people into work. That’s the worry.”

Ross Barrett, policy manager at the MS Society, said it was vital for PIP to remain a cash benefit. PIP money gives people the “flexibility to pay for vital support they need to live their everyday life”.

Sophia Kleanthous at Disability Rights UK said the idea that PIP would no longer be a fully cash-based benefit was “a very worrying prospect”. Any reduction in cash could lead to “worsening wellbeing, health and poverty outcomes”, she added.

The Department for Work and Pensions (DWP) said McFadden would consider the Timms Review’s final proposals later in the autumn. The aim is to make PIP “fair, sustainable, and fit for the future”, said a spokesperson.